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UBC Theses and Dissertations

The experience of obtaining and retaining work from the perspective of individuals with schizophrenia… Rushton, Nancy Ann 1991

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THE EXPERIENCE OF OBTAINING AND RETAINING WORK THE PERSPECTIVE OF INDIVIDUALS WITH SCHIZOPHRENIA A PHENOMENOLOGICAL STUDY by NANCY ANN RUSHTON B.Sc.N., U n i v e r s i t y o f A l b e r t a , 1978 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING i n THE FACULTY OF GRADUATE STUDIES The S c h o o l o f N u r s i n g We a c c e p t t h i s t h e s i s as c o n f o r m i n g t o t h e r e q u i r e d s t a n d a r d THE UNIVERSITY OF BRITISH COLUMBIA October 1991 (c) Nancy Ann Rushton, 1991 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department of ' h l a y T i r M The University of British Columbia Vancouver, Canada Date DE-6 (2/88) i i Abstract The E x p e r i e n c e o f O b t a i n i n g and R e t a i n i n g Work from t h e P e r s p e c t i v e o f I n d i v i d u a l s w i t h S c h i z o p h r e n i a : A p h e n o m e n o l o g i c a l Study. The purpose o f t h i s s t u d y was t o d e s c r i b e t h e e x p e r i e n c e o f o b t a i n i n g and r e t a i n i n g work from t h e p e r s p e c t i v e o f i n d i v i d u a l s w i t h s c h i z o p h r e n i a . A p h e n o m e n o l o g i c a l approach was used t o g u i d e t h e s t u d y . Data were c o l l e c t e d t h r o u g h 17 s e m i - s t r u c t u r e d , a u d i o t a p e d i n t e r v i e w s w i t h 6 men and 4 women who had been d i a g n o s e d w i t h s c h i z o p h r e n i a . A n a l y s i s o c c u r r e d c o n c u r r e n t l y w i t h t h e d a t a c o l l e c t i o n . P a r t i c i p a n t s ' a c c o u n t s i n c l u d e d d e s c r i p t i o n s o f b e i n g i l l , b e i n g d i a g n o s e d w i t h s c h i z o p h r e n i a , l o o k i n g f o r work, w o r k i n g day t o day, w o r k i n g t h r o u g h o u t t h e c o u r s e o f i l l n e s s , r e s p o n d i n g e m o t i o n a l l y t o t h e work e x p e r i e n c e , f i n d i n g meaning i n work, and c o p i n g w i t h work and i l l n e s s by c o n t r o l l i n g c e r t a i n f a c t o r s , u s i n g s u p p o r t s , s e l e c t i n g s u i t a b l e work c o n d i t i o n s and m a i n t a i n i n g o p t i m i s m . An o v e r v i e w o f t h e s e e x p e r i e n c e s r e v e a l e d t h r e e common t h r e a d s ; t h e i n d i v i d u a l , s o c i e t y and l o n g - t e r m i l l n e s s . V i e w i n g t h e p a r t i c i p a n t s ' e x p e r i e n c e w i t h i n t h e framework o f t h e i n d i v i d u a l , s o c i a l and l o n g - t e r m i l l n e s s c o n t e x t s p r o v i d e s d i r e c t i o n f o r n u r s e s and o t h e r h e a l t h p r o f e s s i o n a l s as t h e y p r o v i d e employment g u i d a n c e f o r p e o p l e w i t h s c h i z o p h r e n i a . i i i T a b l e o f C o n t e n t s A b s t r a c t i i T a b l e o f C o n t e n t s i i i Acknowledgments v i Ch a p t e r 1: INTRODUCTION 1 Background t o t h e Problem 1 C o n c e p t u a l i z a t i o n o f t h e Problem 4 Problem Statement 8 Purpose . 8 I n t r o d u c t i o n t o t h e Method 9 D e f i n i t i o n o f Terms 12 A s s u m p t i o n s . 12 L i m i t a t i o n s 13 Summary 13 C h a p t e r 2 : REVIEW OF SELECTED LITERATURE 15 I n t r o d u c t i o n 15 S i g n i f i c a n c e o f Work 16 S i g n i f i c a n c e o f Work f o r t h e G e n e r a l P o p u l a t i o n 16 S i g n i f i c a n c e o f Work f o r P e o p l e w i t h M e n t a l a D i s o r d e r 18 Work and S c h i z o p h r e n i a 2 2 Employment S t a t u s o f I n d i v i d u a l s w i t h S c h i z o p h r e n i a 22 F a c t o r s H i n d e r i n g Employment 29 F a c t o r s F a c i l i t a t i n g Employment 33 R e f e r e n c e t o Work i n t h e E x p e r i e n t i a l L i t e r a t u r e 3 9 F i r s t P e r s o n A c c o u n t s 4 0 P r o f e s s i o n a l A c c o u n t s 42 Summary 47 C h a p t e r 3 : METHOD 48 I n t r o d u c t i o n 48 S e l e c t i o n o f P a r t i c i p a n t s 48 C r i t e r i a f o r S e l e c t i o n 50 S u b j e c t R e c r u i t m e n t 52 C h a r a c t e r i s t i c s o f P a r t i c i p a n t s 55 Data C o l l e c t i o n and A n a l y s i s 58 E t h i c s and Human R i g h t s 65 Summary 66 i v C h a p t e r 4: THE INDIVIDUALS' ACCOUNTS 68 I n t r o d u c t i o n 68 The A c c o u n t s 70 The I l l n e s s E x p e r i e n c e 70 B e i n g 111 70 B e i n g Diagnosed 81 The W o r k - r e l a t e d E x p e r i e n c e 87 L o o k i n g f o r Work 87 Working Day t o Day 98 Working Year t o Year I l l Responding t o t h e Work E x p e r i e n c e . . . . 114 F i n d i n g Meaning i n Work 117 The C o p i n g E x p e r i e n c e 124 C o n t r o l l i n g I n f l u e n t i a l F a c t o r s 125 U s i n g Support Systems 130 S e l e c t i n g Working C o n d i t i o n s 137 M a i n t a i n i n g Optimism 144 Summary 150 The Unique I n d i v i d u a l 150 The S o c i a l I n f l u e n c e s 154 The Long-term N a t u r e o f t h e I l l n e s s 158 Ch a p t e r 5: DISCUSSION OF FINDINGS 162 I n t r o d u c t i o n 162 The I n d i v i d u a l C o n t e x t 162 The I n d i v i d u a l E x p e r i e n c e 162 I n d i v i d u a l i z e d I n t e r v e n t i o n 172 The S o c i a l C o n t e x t 176 S o c i a l Stigma 177 Community Support 185 The Long-term I l l n e s s C o n t e x t 191 The Long-term I l l n e s s E x p e r i e n c e 191 Summary 199 Ch a p t e r 6: SUMMARY, CONCLUSIONS AND IMPLICATIONS FOR NURSING . . 2 03 Summary and C o n c l u s i o n s . 203 I m p l i c a t i o n s f o r N u r s i n g P r a c t i c e 2 09 I m p l i c a t i o n s f o r N u r s i n g R e s e a r c h 213 I m p l i c a t i o n s f o r N u r s i n g E d u c a t i o n 215 V REFERENCES 218 APPENDICES 234 Appendix A - L e t t e r o f I n t r o d u c t i o n 2 34 Appendix B - Consent f o r Telephone C o n t a c t 23 6 Appendix C - Informed Consent Form . 2 3 7 Appendix D - Demographic Data Sheet 239 Appendix E - I n t e r v i e w Guide 240 v i Acknowledgments I would l i k e t o thank each o f t h e men and women who p a r t i c i p a t e d i n t h i s s t u d y , f o r g e n e r o u s l y g i v i n g t h e i r t i m e and c a n d i d l y s h a r i n g t h e i r t h o u g h t s and f e e l i n g s . I a p p r e c i a t e t h e i r humor, hope and courage, and t h e warm f r i e n d s h i p t h e y extended t o me. I would a l s o l i k e t o thank t h e many p e o p l e i n t h e commmunity who e n t h u s i a s t i c a l l y s u p p o r t e d and a s s i s t e d me i n p a r t i c i p a n t s e l e c t i o n . I am g r a t e f u l t o my t h e s i s committe, S a l l y Thome and Judy Lynam, f o r s h a r i n g t h e i r w e a l t h o f knowledge and e x p e r i e n c e . I would l i k e t o thank them f o r t h e i r k i n d n e s s , f r i e n d s h i p and s u p p o r t . I am i n d e b t e d t o J a n e t E r i c k s e n f o r g o i n g t h e e x t r a m i l e and h e l p i n g me t o complete t h i s s t u d y under d i f f i c u l t t i m e c o n s t r a i n t s . To my f r i e n d s and c o l l e a g u e s a t Vancouver G e n e r a l H o s p i t a l S c h o o l o f N u r s i n g , I would l i k e t o e x t e n d my deep a p p r e c i a t i o n f o r t h e i r u n f a i l i n g encouragement. F i n a l l y , I would l i k e t o thank my f a m i l y and G l e n and Dora M i l l e r f o r t h e i r l o v e , u n d e r s t a n d i n g , and h e l p . To my da u g h t e r Meghan, I would l i k e t o e x p r e s s my l o v e and say "thank-you f o r w a i t i n g . " 1 Chapter 1 I n t r o d u c t i o n Background t o t h e Problem Because o f improved t r e a t m e n t and i n c r e a s e d a t t e n t i o n t o human r i g h t s , most i n d i v i d u a l s w i t h s c h i z o p h r e n i a now l i v e i n communities r a t h e r t h a n p s y c h i a t r i c h o s p i t a l s (Boker & B r e n n e r , 1987). T h i s has r e s u l t e d i n t h e need f o r i n c r e a s e d f o c u s on t h e m e n t a l h e a l t h o f t h e i n d i v i d u a l i n t h e community. Work p l a y s an i n t e g r a l r o l e i n t h e m e n t a l h e a l t h o f i n d i v i d u a l s w i t h s c h i z o p h r e n i a and t h u s d e s e r v e s p a r t i c u l a r a t t e n t i o n (Westermeyer & Harrow, 1987). W h i l e r e s e a r c h e r s have s t u d i e d v a r i o u s a s p e c t s o f work i n r e l a t i o n t o i n d i v i d u a l s w i t h s c h i z o p h r e n i a , t h e a c t u a l work e x p e r i e n c e s o f t h e s e i n d i v i d u a l s have n o t been s t u d i e d . I n p a r t i c u l a r , no r e s e a r c h has d e s c r i b e d t h e e x p e r i e n c e o f o b t a i n i n g and r e t a i n i n g work from t h e p e r s p e c t i v e o f t h e s e i n d i v i d u a l s . S c h i z o p h r e n i a i s a m e n t a l d i s o r d e r o f unknown e t i o l o g y , w h i c h r e s u l t s i n e p i s o d i c f e a t u r e s such as d e l u s i o n s , h a l l u c i n a t i o n s , d i s t u r b a n c e s o f f e e l i n g , p h y s i c a l symptoms such as w i t h d r a w a l and s l o w n e s s o f movement, and b e h a v i o r a l and p e r s o n a l i t y changes ( J e f f r i e s , Plummer, Seeman & T h o r n t o n , 1990). These f e a t u r e s i n f l u e n c e t h e e x p e r i e n c e o f o b t a i n i n g and r e t a i n i n g work as t h e y can a f f e c t t h e i n d i v i d u a l ' s a b i l i t y t o c o n c e n t r a t e , f o l l o w t h r o u g h w i t h t a s k s , i n t e r a c t c o o p e r a t i v e l y w i t h o t h e r s and so on. I t has 2 been e s t i m a t e d t h a t t wenty m i l l i o n i n d i v i d u a l s , o r 1% o f t h e p o p u l a t i o n , a r e a f f e c t e d by s c h i z o p h r e n i a (Hoffman, 1988). I n Canada t h a t t r a n s l a t e s i n t o more t h a n 50,000 i n d i v i d u a l s w i t h s c h i z o p h r e n i a ( B e i s e r & Iacono, 1990). T w o - t h i r d s o f t h e s e i n d i v i d u a l s l i v e i n t h e community, t h u s t h e s i g n i f i c a n c e o f s c h i z o p h r e n i a as a h e a l t h p r o blem i s c l e a r , e s p e c i a l l y t o h e a l t h p r o f e s s i o n a l s who work i n t h e community. H e a l t h c a r e f o r i n d i v i d u a l s w i t h s c h i z o p h r e n i a i n v o l v e s n o t o n l y t h e t r e a t m e n t o f t h e m e n t a l d i s o r d e r , b u t a l s o p r o m o t i o n o f m e n t a l h e a l t h ( B e a t t y , 1988). P r o m o t i o n o f m e n t a l h e a l t h i n v o l v e s p r o v i s i o n o f c a r e i n t h e a r e a s t h a t t h r e a t e n m e n t a l h e a l t h . Many i n d i v i d u a l s w i t h s c h i z o p h r e n i a have problems i n o b t a i n i n g and r e t a i n i n g work, t h u s work i s a f a c t o r t h a t t h r e a t e n s t h e i r m e n t a l h e a l t h (Harrow, G r i n k e r , S i l v e r s t e i n & Holzman, 1978). W h i l e i t i s r e c o g n i z e d t h a t work p l a y s a s i g n i f i c a n t r o l e i n t h e m e n t a l h e a l t h o f i n d i v i d u a l s w i t h s c h i z o p h r e n i a , work f o r t h e s e i n d i v i d u a l s has n o t been g i v e n as much a t t e n t i o n as i t d e s e r v e s (Westermeyer and Harrow, 1987). Most r e s e a r c h e r s have s t u d i e d t h e m e n t a l d i s o r d e r , t h a t i s , t h e c o u r s e and t r e a t m e n t o f t h e s c h i z o p h r e n i c d i s o r d e r . Fewer r e s e a r c h e r s have s t u d i e d f a c t o r s r e l a t i v e t o m e n t a l h e a l t h and, among t h e s e , a f o c u s on work e x p e r i e n c e i s m i n i m a l . N o n e t h e l e s s , community m e n t a l h e a l t h n u r s e s p r o v i d e c a r e f o r thousands o f i n d i v i d u a l s w i t h s c h i z o p h r e n i a who at t e m p t t o o b t a i n and r e t a i n work i n t h e community and e n c o u n t e r problems i n d o i n g 3 so. The t y p e o f r e s e a r c h t h a t has been done i n r e l a t i o n t o work p r o v i d e s l i t t l e g u i d a n c e f o r t h e community m e n t a l h e a l t h n u r s e who i s p r o v i d i n g c a r e f o r i n d i v i d u a l s i n t h e s e s i t u a t i o n s . I t has been t h i s r e s e a r c h e r ' s e x p e r i e n c e , d u r i n g s e v e r a l y e a r s o f n u r s i n g p r a c t i c e , t h a t i n d i v i d u a l s w i t h s c h i z o p h r e n i a e x p r e s s many c o n c e r n s about t h e e x p e r i e n c e o f o b t a i n i n g and r e t a i n i n g work. The d e s i r e t o s t u d y t h e e x p e r i e n c e o f o b t a i n i n g and r e t a i n i n g work from t h e p e r s p e c t i v e o f i n d i v i d u a l s i s r e i n f o r c e d by t h i s r e s e a r c h e r ' s awareness o f t h e l a c k o f r e f e r e n c e t o t h e i n d i v i d u a l ' s p e r s p e c t i v e i n t h e p r o v i s i o n o f n u r s i n g c a r e . N u r s e s ' s don't know what t h e i n d i v i d u a l ' s p e r c e p t i o n s a r e , and t h e r e f o r e a r e u n a b l e t o i n c o r p o r a t e t h i s knowledge i n n u r s i n g c a r e . U n d e r s t a n d i n g t h e e x p e r i e n c e o f o b t a i n i n g and r e t a i n i n g work i s s i g n i f i c a n t t o t h e p r o v i s i o n o f e f f e c t i v e n u r s i n g c a r e f o r t h e s e i n d i v i d u a l s f o r a number o f r e a s o n s . An u n d e r s t a n d i n g o f t h e p e r s o n ' s e x p e r i e n c e i n o b t a i n i n g and r e t a i n i n g work c o u l d p r o v i d e v a l u a b l e knowledge t o n u r s e s as t h e y 1) t e a c h p e o p l e s k i l l s f o r o b t a i n i n g and r e t a i n i n g work, 2) p r o v i d e e mpathic s u p p o r t t o i n d i v i d u a l s who a r e e n c o u n t e r i n g d i f f i c u l t y i n o b t a i n i n g and r e t a i n i n g work, 3) f u n c t i o n as t h e i n d i v i d u a l ' s a d v o c a t e i n t h e work p l a c e , 4) t e a c h and p r o v i d e s u p p o r t t o f a m i l i e s w h i c h a r e h a v i n g d i f f i c u l t y i n u n d e r s t a n d i n g what t h e i n d i v i d u a l i s e x p e r i e n c i n g , 5) work w i t h o t h e r members o f t h e h e a l t h c a r e team i n d e v e l o p i n g 4 community s u p p o r t programs such as j o b - f i n d i n g c l u b s o r employment programs and, 6) communicate w i t h o t h e r members of t h e h e a l t h c a r e team about t h e e x p e r i e n c e s t h a t i n d i v i d u a l s w i t h s c h i z o p h r e n i a have i n community l i v i n g . C o n c e p t u a l i z a t i o n o f t h e Problem D i r e c t i o n f o r t h i s s t u d y comes from t h e c o n c e p t u a l i z a t i o n o f m e n t a l h e a l t h and m e n t a l d i s o r d e r as d e s c r i b e d i n t h e 1988 document M e n t a l H e a l t h f o r Canadians:  S t r i k i n g a B a l a n c e . I n t h a t document m e n t a l h e a l t h i s d e f i n e d as t h e c a p a c i t y o f t h e i n d i v i d u a l , t h e group and t h e environment t o i n t e r a c t w i t h one a n o t h e r i n ways t h a t promote s u b j e c t i v e w e l l - b e i n g , t h e o p t i m a l development and use o f m e n t a l a b i l i t i e s , and t h e achievement o f g o a l s c o n s i s t e n t w i t h j u s t i c e and e q u a l i t y . M e n t a l h e a l t h i s c o n c e p t u a l i z e d as a continuum from m i n i m a l m e n t a l h e a l t h t o o p t i m a l m e n t a l h e a l t h . W i t h i n t h i s framework, s c h i z o p h r e n i a i s c o n s i d e r e d a m e n t a l d i s o r d e r o r a r e c o g n i z e d , m e d i c a l l y d i a g n o s a b l e i l l n e s s t h a t r e s u l t s i n t h e s i g n i f i c a n t impairment o f an i n d i v i d u a l ' s c o g n i t i v e , a f f e c t i v e o r r e l a t i o n a l a b i l i t i e s ( B e a t t y , 1988, p . 8 ) . A c r u c i a l p o i n t o f t h e framework i s t h a t a m e n t a l d i s o r d e r such as s c h i z o p h r e n i a , even when s e r i o u s and c h r o n i c , i s never t h e o n l y f a c t o r d e t e r m i n i n g m e n t a l h e a l t h . That i s , even when t h e symptoms o f t h e d i s o r d e r a r e c o n t r o l l e d and t h e i n d i v i d u a l i s a b l e t o l i v e i n t h e community, i t does n o t n e c e s s a r i l y mean t h e i n d i v i d u a l w i l l have a c h i e v e d o p t i m a l m e n t a l h e a l t h . Other f a c t o r s p l a y 5 a p a r t i n d e t e r m i n i n g t h e m e n t a l h e a l t h o f t h e i n d i v i d u a l . I t i s p o s s i b l e f o r t h e i n d i v i d u a l t o have poor m e n t a l h e a l t h because o f t h e f o l l o w i n g o b s t a c l e s : " r e j e c t i o n by f r i e n d s , f a m i l y o r workmates, t h e s t i g m a o f m e n t a l i l l n e s s , i n a b i l i t y t o f i n d o r keep s u i t a b l e employment, l a c k o f a p p r o p r i a t e and a f f o r d a b l e h o u s i n g , l a c k o f s o c i a l and r e c r e a t i o n a l o r e d u c a t i o n a l o p p o r t u n i t i e s , e x p e r i e n c e s o f d i s c r i m i n a t i o n , and l a c k o f needed i n f o r m a t i o n and c o p i n g s k i l l s " ( B e a t t y , 1988, p . 9 ) . I n t h i s c o n c e p t u a l framework, i n d i v i d u a l s w i t h s c h i z o p h r e n i a have t h e same range o f m e n t a l h e a l t h needs and a s p i r a t i o n s as anyone e l s e , and t h e d e s i r e f o r a c h i e v i n g m e n t a l h e a l t h i s t h e same as f o r everyone e l s e . T h i s c o n c e p t u a l framework d i r e c t s one t o c o n s i d e r t h e m e n t a l h e a l t h o f i n d i v i d u a l s w i t h s c h i z o p h r e n i a and t o e x p l o r e t h e o b s t a c l e s t h a t may be a f f e c t i n g t h e achievement o f t h e i r o p t i m a l m e n t a l h e a l t h . T h i s s t u d y a d d r e s s e s one o b s t a c l e , t h e i n a b i l i t y t o f i n d o r keep s u i t a b l e work, by r e s e a r c h i n g t h e e x p e r i e n c e t h a t i n d i v i d u a l s have i n r e l a t i o n t o o b t a i n i n g and r e t a i n i n g work. D i r e c t i o n f o r s t u d y i n g i n d i v i d u a l s 1 e x p e r i e n c e comes from t h e t h e o r e t i c a l p e r s p e c t i v e o f s c h o l a r s s uch as C o l a i z z i (1978) and K l e i n m a n (1978). When d i s c u s s i n g t h e v a l u e o f s t u d y i n g human e x p e r i e n c e , C o l a i z z i w r i t e s , " e x p e r i e n c e i s : (a) o b j e c t i v e l y r e a l f o r m y s e l f and o t h e r s , (b) n o t an i n t e r n a l s t a t e b u t a mode o f p r e s e n c e t o t h e w o r l d , (c) a mode o f w o r l d p r e s e n c e t h a t i s e x i s t e n t i a l l y s i g n i f i c a n t , and 6 (d) as e x i s t e n t i a l l y s i g n i f i c a n t , i t i s a l e g i t i m a t e and n e c e s s a r y c o n t e n t f o r u n d e r s t a n d i n g human p s y c h o l o g y " (p.52). W h i l e i t i s i m p o r t a n t t o s t u d y human e x p e r i e n c e , i t i s n e c e s s a r y , as K l e i n m a n p o i n t s o u t , t o remember t h a t everyone has a d i f f e r e n t p e r s p e c t i v e on *human e x p e r i e n c e ' . K l e i n m a n (1989) w r i t e s : " t h e w o r l d and r e a l i t y , and e v e r y t h i n g t h a t i s i m p o r t a n t i n t h e w o r l d , changes when we see i t from a d i f f e r e n t p e r s p e c t i v e " ( p . 3 4 ) . A c c o r d i n g t o K l e i n m a n , i t i s p a r t i c u l a r l y i m p o r t a n t f o r h e a l t h c a r e w o r k e r s t o acknowledge t h a t t h e r e a r e d i f f e r e n c e s i n i n d i v i d u a l s ' p e r s p e c t i v e s o f r e a l i t y . He t h e o r i z e s t h a t h e a l t h c a r e systems c o n t a i n t h r e e s o c i a l s e c t o r s w i t h i n w h i c h s i c k n e s s i s e x p e r i e n c e d . These a r e t h e p o p u l a r s e c t o r , c o m p r i s i n g t h e f a m i l y c o n t e x t o f s i c k n e s s and c a r e , t h e p r o f e s s i o n a l s e c t o r and t h e f o l k s e c t o r . " I n each s e c t o r o f t h e h e a l t h c a r e system, e x p l a n a t o r y models (EMs) can be e l i c i t e d from p r a c t i c i o n e r s , p a t i e n t s , and f a m i l y members f o r p a r t i c u l a r s i c k n e s s e p i d o d e s " ( p . 8 7 ) . EMs c o n s t r u c t d i f f e r e n t r e a l i t i e s f o r t h e same s i c k n e s s e p i s o d e . F o r example p r o f e s s i o n a l m e d i c a l EMs c o n s t r u e s i c k n e s s as d i s e a s e , t h a t i s a m a l f u n c t i o n i n g i n o r m a l a d a p t a t i o n o f b i o l o g i c a l and/or p s y c h o l o g i c a l p r o c e s s e s , w h i l e p o p u l a r c u l t u r e EMs c o n s t r u e s i c k n e s s as i l l n e s s t h a t i s t h e e x p e r i e n c e o f d i s e a s e and t h e s o c i e t a l r e a c t i o n t o d i s e a s e . F o r most c l i e n t s t h e n , " i l l n e s s i s t h e way t h e s i c k p e r s o n , h i s f a m i l y , and h i s s o c i a l network p e r c e i v e , l a b e l , e x p l a i n , i 7 v a l u a t e , and r e s p o n d t o d i s e a s e " ( p . 8 8 ) , w h i l e f o r most h e a l t h p r o f e s s i o n a l s i l l n e s s i s more n a r r o w l y d e f i n e d . I n summary, what K l e i n m a n i s s a y i n g i s t h a t h e a l t h c a r e p r o f e s s i o n a l s and c l i e n t s b e l o n g t o d i f f e r e n t c u l t u r a l and s o c i a l systems, each system w i t h i t s own s e t o f s o c i a l meanings and b e h a v i o r a l norms. As a r e s u l t o f t h e s e d i f f e r e n c e s i n meaning and norms, h e a l t h c a r e p r o f e s s i o n a l s and c l i e n t s u n d e r s t a n d and e x p l a i n r e a l i t y i n d i f f e r e n t ways. T r a d i t i o n a l l y , h e a l t h c a r e p r o f e s s i o n a l s have p r o v i d e d c a r e based on t h e i r own u n d e r s t a n d i n g and e x p l a n a t i o n o f r e a l i t y r a t h e r t h a n t h e c l i e n t ' s u n d e r s t a n d i n g and e x p l a n a t i o n o f r e a l i t y . T h i s s t u d y a d d r e s s e s t h e need f o r i n c r e a s e d a t t e n t i o n t o t h e c l i e n t ' s p o i n t o f v i e w by f o c u s i n g on t h e i n d i v i d u a l ' s p e r s p e c t i v e o f t h e e x p e r i e n c e o f o b t a i n i n g and r e t a i n i n g work. T h i s i s i n k e e p i n g w i t h n u r s i n g s ' r e c o g n i t i o n t h a t d e f i n i n g problems and p r e s c r i b i n g s o l u t i o n s w h i c h a r e congr u e n t w i t h t h e c l i e n t ' s p o i n t o f view i n c r e a s e s n u r s i n g s ' r e s p o n s i v e n e s s t o t h e c l i e n t s ' s needs (Anderson, 1985). I t has been i d e n t i f i e d i n n u r s i n g l i t e r a t u r e , t h a t n u r s i n g needs t o d e v e l o p an u n d e r s t a n d i n g o f t h e meanings t h a t i n d i v i d u a l s a s s i g n t o l i f e e v e n t s . When t h e p r a c t i c i o n e r u n d e r s t a n d s c l i e n t s ' p e r s p e c t i v e s , i n c l u d i n g t h e meaning t h e y a s s i g n t o l i f e e v e n t s , t h e e f f e c t i v e n e s s o f n u r s i n g i n t e r v e n t i o n s i s enhanced. T h e r e f o r e , i f n u r s i n g r e s e a r c h i s i n t e n d e d t o p r o v i d e q u i d a n c e t o c l i n i c a l p r a c t i c e , i t must seek t o u n d e r s t a n d i n d i v i d u a l s ' 8 p e r s p e c t i v e s . (Lynam and Anderson, 1986 p.261). I n summary, h e a l t h p r o f e s s i o n a l s , p a r t i c u l a r l y n u r s e s , a r e r e c o g n i z i n g t h a t t h e g r e a t e r t h e l e v e l o f p r o f e s s i o n a l awareness o f t h e c l i e n t ' s u n d e r s t a n d i n g and e x p l a n a t i o n o f r e a l i t y , t h e g r e a t e r t h e p o s s i b i l i t y o f p r o v i d i n g c a r e t h a t i s e f f e c t i v e and i s s a t i s f y i n g f o r t h e c l i e n t as w e l l as f o r t h e p r o f e s s i o n a l . Problem Statement I n summary, w h i l e o b t a i n i n g and r e t a i n i n g work i s an i m p o r t a n t p a r t o f o p t i m a l m e n t a l h e a l t h , no r e s e a r c h can be found w h i c h documents t h i s e x p e r i e n c e from t h e p e r s p e c t i v e o f i n d i v i d u a l s w i t h s c h i z o p h r e n i a . Nurses p r o v i d e c a r e i n t h e community t o thousands o f i n d i v i d u a l s w i t h s c h i z o p h r e n i a , many o f whom have d i f f i c u l t y o b t a i n i n g and r e t a i n i n g work. I f n u r s e s a r e t o p r o v i d e e m o t i o n a l s u p p o r t and advocacy f o r i n d i v i d u a l s , t e a c h and c o u n s e l f a m i l i e s and emp l o y e r s , and p l a n c a r e w i t h o t h e r h e a l t h p r o f e s s i o n a l s , i t i s e s s e n t i a l t h a t t h e y u n d e r s t a n d t h e e x p e r i e n c e o f o b t a i n i n g and r e t a i n i n g work from t h e p e r s p e c t i v e o f t h e s e c l i e n t s . P urpose The purpose o f t h i s s t u d y , t h e n , was t o d e s c r i b e t h e e x p e r i e n c e o f o b t a i n i n g and r e t a i n i n g work from t h e p e r s p e c t i v e o f i n d i v i d u a l s w i t h s c h i z o p h r e n i a . V e r b a l d e s c r i p t i o n s o f t h e e x p e r i e n c e o f o b t a i n i n g and r e t a i n i n g work were e l i c i t e d i n o r d e r t o answer t h e f o l l o w i n g two r e s e a r c h q u e s t i o n s : 9 1) What a r e t h e e x p e r i e n c e s s u r r o u n d i n g o b t a i n i n g and r e t e n t i o n o f work from t h e p e r s p e c t i v e o f i n d i v i d u a l s w i t h s c h i z o p h r e n i a ? ; and 2) What meaning do t h e e x p e r i e n c e s o f o b t a i n i n g and r e t a i n i n g work have f o r i n d i v i d u a l s w i t h s c h i z o p h r e n i a ? I n t r o d u c t i o n t o t h e Method Fo r each r e s e a r c h q u e s t i o n t h e r e i s a method t h a t i s most a p p r o p r i a t e , and s e l e c t i n g t h a t method i s one o f t h e most i m p o r t a n t d e c i s i o n s o f t h e r e s e a r c h p r o c e s s ( F i e l d & Morse, 1985). I n as much as t h e aim o f t h i s s t u d y was t o d e s c r i b e , from t h e i r own p e r s p e c t i v e , t h e e x p e r i e n c e s o f i n d i v i d u a l s w i t h s c h i z o p h r e n i a , i t was n e c e s s a r y t o s e l e c t a method t h a t was a p p r o p r i a t e f o r i n v e s t i g a t i n g human e x p e r i e n c e . The t r a d i t i o n a l r e s e a r c h method, t h a t o f e x p e r i m e n t a t i o n , w i t h i t s n o t i o n o f o b j e c t i v i t y and use o f o p e r a t i o n a l d e f i n i t i o n s , e x c l u d e s human e x p e r i e n c e ( C o l a i z z i , 1978) . T h i s i m p l i e s t h a t t h e method f o r t h e o b j e c t i v e i n v e s t i g a t i o n o f human e x p e r i e n c e cannot be t h e e x p e r i m e n t a l method. I t must be a method w h i c h n e i t h e r d e n i e s e x p e r i e n c e n o r d e n i g r a t e s i t o r t r a n s f o r m s i t i n t o o p e r a t i o n a l l y d e f i n e d b e h a v i o r ; i t must be, i n s h o r t , a method t h a t r e m a i n s w i t h human e x p e r i e n c e as i t i s e x p e r i e n c e d , o n e w h i c h t r i e s t o s u s t a i n c o n t a c t w i t h e x p e r i e n c e as i t i s g i v e n ( C o l a i z z i , 1978, p . 5 3 ) . I n o t h e r words, t h e more f a m i l i a r q u a n t i t a t i v e methods a r e i n a p p r o p r i a t e f o r a n s w e r i n g t h e q u e s t i o n posed by t h i s s t u d y . The method t h a t C o l a i z z i s u g g e s t s can b e s t a c h i e v e t h e s t u d y o f human e x p e r i e n c e i s t h e p h e n o m e n o l o g i c a l method. What t h e n , i s phenomenology? As Omery (1983) e x p l a i n s , phenomenology i s n o t j u s t a r e s e a r c h method b u t i s a l s o a p h i l o s o p h y and an approach. "The p h e n o m e n o l o g i c a l movement has grown l a r g e l y o ut o f t h e p h i l o s o p h y o f Edmund H u s s e r l , and l a t e r A l f r e d S c h u t z , who e l u c i d a t e d t h e ways i n w h i c h p h e n o m e n o l o g i c a l p h i l o s o p h y d i r e c t s us i n t h e s t u d y o f e v e r y d a y l i f e and everyday human i n t e r a c t i o n " (Anderson and E l f e r t 1989, p.737). The work o f t h e e x i s t e n t i a l p h i l o s o p h e r s , H e i d e g g e r , S c h u l e r , S a r t r e and M e r l e a u - P o n t y a l s o p r o v i d e d t h e f o u n d a t i o n f o r t h e phenomemological method ( F i e l d and Morse, 1985). Phenomenology a c c e p t s e x p e r i e n c e as i t e x i s t s i n t h e i n d i v i d u a l ' s c o n s c i o u s n e s s . There a r e no p r e c o n c e i v e d n o t i o n s , e x p e c t a t i o n s o r frameworks p r e s e n t t o g u i d e r e s e a r c h e r s as t h e y b e g i n t o a n a l y z e t h e d a t a . The g o a l i s t o a c c u r a t e l y d e s c r i b e t h e e x p e r i e n c e o f t h e phenomenon under s t u d y and n o t t o g e n e r a t e t h e o r i e s o r models nor t o d e v e l o p e x p l a n a t i o n s o f t h e phenomenon ( F i e l d and Morse, 1985) . The p h e n o m e n o l o g i c a l method, t h e n , i s an i n d u c t i v e , d e s c r i p t i v e r e s e a r c h method w i t h t h e aim o f i n v e s t i g a t i n g and d e s c r i b i n g a l l phenomena, i n c l u d i n g human e x p e r i e n c e s i n t h e i r f u l l e s t b r e a d t h and d e p t h , a l o n g w i t h t h e i r s u b j e c t i v e meaning, essence and r e l a t i o n s h i p s (Omery, 1983; Watson, 1985). I t i s i m p o r t a n t t o no t e t h e t h e aim o f phenomenology i s t o d e s c r i b e e x p e r i e n c e r a t h e r t h a n t o d e f i n e , c a t e g o r i z e , e x p l a i n o r i n t e r p r e t i t ( M u n h a l l & O i l e r , 1986). From t h e above d e s c r i p t i o n , i t i s c l e a r t h a t phenomenology i s a method o f c h o i c e f o r t h e s t u d y o f human e x p e r i e n c e . Because t h e aim o f t h i s s t u d y was t o d e s c r i b e e x p e r i e n c e and i t s a s s o c i a t e d meaning, phenomenology was chosen as t h e a p p r o p r i a t e method f o r t h e s t u d y . T h i s method was c o n s i d e r e d p a r t i c u l a r l y u s e f u l as i t a l l o w s f o r a g r e a t e r d e p t h o f u n d e r s t a n d i n g t h a n i s u s u a l i n t h e t r a d i t i o n a l methods o f r e s e a r c h ( R i s t , 1979). T h i s u n d e r s t a n d i n g o f e x p e r i e n c e must be a r t i c u l a t e d i n t h e form o f a c o h e r e n t d e s c r i p t i o n i n o r d e r f o r i t t o c o n t r i b u t e t o a body o f knowledge f o r n u r s i n g ( M u n h a l l & O i l e r , 1986) . As i s e v i d e n t from t h e above d e s c r i p t i o n , t h i s o r i e n t a t i o n t o r e s e a r c h i s i n c o n t r a s t t o t h e more t r a d i t i o n a l approaches w h i c h , f o r example, aim t o v e r i f y h y p o t h e s e s and i n w h i c h c o n c e p t s and c a t e g o r i e s a r e d e r i v e d from a p r e - e x i s t i n g t h e o r e t i c a l framework (Anderson, 1981). There a r e many d i f f e r e n c e s i n t h e d e s i g n o f a p h e n o m e n o l g i c a l s t u d y as compared t o a t r a d i t i o n a l q u a n t i t a t i t v e s t u d i e s . These d i f f e r e n c e s i n d e s i g n w i l l be i l l u m i n a t e d i n c h a p t e r 3 as t h e s u b j e c t r e c r u i t m e n t , d a t a c o l l e c t i o n and a n a l y s i s a r e d e s c r i b e d . 12 D e f i n i t i o n o f Terms C e r t a i n key terms a r e used t h r o u g h o u t t h e d i s c u s s i o n and a r e d e f i n e d h e r e f o r t h e purpose o f c l a r i f i c a t i o n . " S c h i z o p h r e n i a " i s a term r e f e r r i n g t o a m e n t a l d i s o r d e r o f unknown e t i o l o g y w h i c h shows i t s e l f t h r o u g h a number o f main f e a t u r e s , i n c l u d i n g d e l u s i o n s , h a l l u c i n a t i o n s , d i s t u r b a n c e s o f f e e l i n g , p h y s i c a l symptoms and a d i s t i n c t b r e a k i n t h e i n d i v i d u a l ' s l i f e . The d i s o r d e r o c c u r s i n b o t h s e x e s and commonly makes i t s f i r s t appearance i n t h e i n d i v i d u a l i n h i s \ h e r t w e n t i e s a l t h o u g h i t can appear as e a r l y a d o l e s c e n c e and as l a t e as t h e e a r l y t h i r t i e s ( J e f f e r i e s , Plummer, Seeman, & T h o r n t o n 1990). "Work" r e f e r s t o t h e a c t s t h a t one does i n r e t u r n f o r something o f v a l u e , such as money; t h e a c t i v i t i e s by w h i c h one e a r n s one's l i v e l i h o o d (Landau, 1980). " E x p e r i e n c e " r e f e r s t o a c t u a l l y l i v i n g t h r o u g h an e v e n t ; p e r s o n a l l y u n d e r g o i n g o r o b s e r v i n g some t h i n g o r t h i n g s i n g e n e r a l as t h e y o c c u r ( F r i e n d & G u r a l n i k , 1958). Assumptions The r e s e a r c h e r approached t h i s s t u d y w i t h t h e a s s u m p t i o n t h a t t h e i n f o r m a t i o n s h a r e d by t h e p a r t i c i p a n t s would be an a c c u r a t e and t r u t h f u l r e p o r t i n g o f t h e i r p e r c e p t i o n o f t h e e x p e r i e n c e . F u r t h e r , t h e r e s e a r c h e r assumed t h a t t h e e x p e r i e n c e o f o b t a i n i n g and r e t a i n i n g work c a r r i e d w i t h i t some common o r s h a r e d meaning t h a t c o u l d be r e l a y e d t o o t h e r s . L i m i t a t i o n s The w i l l i n g n e s s o f t h e p a r t i c i p a n t s t o r e p o r t i n d e t a i l t o t h e r e s e a r c h e r l i m i t s t h e e x t e n t o f t h e d a t a and t h e a n a l y t i c a l outcome. A n o t h e r l i m i t a t i o n i s t h a t t h e p a r t i c i p a n t s a r e t h o s e w i l l i n g and a b l e t o d e s c r i b e t h e i r own e x p e r i e n c e s so t h e e x p e r i e n c e s a p p l y t o t h e c u l t u r a l and s o c i a l system t o w h i c h t h e p a r t i c i p a n t s b e l o n g . As w e l l , t h e sample r e p r e s e n t s a d i s t i n c t sub-group o f i n d i v i d u a l s w i t h s c h i z o p h r e n i a as t h e sample c o n s i s t s o f t h o s e i n d i v i d u a l s who a r e c o h e r e n t and a r t i c u l a t e . Summary T h i s c h a p t e r has p r e s e n t e d a d e s c r i p t i o n o f t h e background t o t h e problem, t h e c o n c e p t u a l i z a t i o n o f t h e p r o b l e m , as w e l l as t h e problem s t a t e m e n t and t h e purpose o f t h e s t u d y . A l s o p r o v i d e d was a b r i e f i n t r o d u c t i o n t o t h e p h e n o m e n o l o g i c a l method and t h e r a t i o n a l e f o r s e l e c t i o n o f t h i s method f o r t h i s s t u d y . The h i g h i n c i d e n c e o f s c h i z o p h r e n i a , compounded w i t h t h e l a c k o f c u r e f o r t h e d i s o r d e r , has r e s u l t e d i n l a r g e numbers o f p e o p l e w i t h s c h i z o p h r e n i a r e q u i r i n g s u p p o r t i v e c a r e i n t h e community. W h i l e work has been i d e n t i f i e d as a s i g n i f i c a n t v a r i a b l e a f f e c t i n g t h e m e n t a l h e a l t h o f i n d i v i d u a l s w i t h s c h i z o p h r e n i a , and w h i l e v a r i o u s a s p e c t s o f work have been s t u d i e d i n r e l a t i o n t o p e o p l e w i t h s c h i z o p h r e n i a , no r e s e a r c h has examined t h e e x p e r i e n c e o f o b t a i n i n g and r e t a i n i n g work from t h e p e r s p e c t i v e o f i n d i v i d u a l s w i t h s c h i z o p h r e n i a . Because o f i t s u n i q u e f o c u s on e x p e r i e n c e from t h e p e r s p e c t i v e o f t h e i n d i v i d u a l , phenomenology was s e l e c t e d t h e a p p r o p r i a t e method t o answer t h e r e s e a r c h q u e s t i o n . 15 C h apter 2 Review o f S e l e c t e d L i t e r a t u r e I n t r o d u c t i o n The l i t e r a t u r e r e v i e w e d i s t h a t w h i c h p e r t a i n s t o i n d i v i d u a l s w i t h m e n t a l d i s o r d e r s and, p a r t i c u l a r l y , t o i n d i v i d u a l s w i t h s c h i z o p h r e n i a . C u r r e n t l y f i v e t y p e s o f s c h i z o p h r e n i a a r e s p e c i f i e d i n t h e D i a g n o s t i c and S t a t i s t i c a l  Manual o f M e n t a l D i s o r d e r s (American P s y c h i a t r i c A s s o c i a t i o n (APA), 1987) Each t y p e i s c h a r a c t e r i z e d by a s e t o f predominant symptoms. As w e l l , t h e c o u r s e o f t h e d i s o r d e r v a r i e s from c l i e n t t o c l i e n t , and t h u s t h e APA has s p e c i f i e d f i v e c o u r s e s o f t h e d i s o r d e r . Most l i t e r a t u r e , however, makes no m e n t i o n o f t h e d i a g n o s t i c c r i t e r i a used o r t h e t y p e o f s c h i z o p h r e n i a t o w h i c h i t r e f e r s . Thus t h e l i t e r a t u r e p e r t a i n s t o i n d i v i d u a l s w i t h d i f f e r e n t t y p e s o f s c h i z o p h r e n i a , d i a g n o s e d w i t h v a r y i n g s e t s o f c r i t e r i a . The l i t e r a t u r e r e v i e w i s c a t e g o r i z e d i n t h e f o l l o w i n g way. F i r s t , l i t e r a t u r e a d d r e s s i n g t h e s i g n i f i c a n c e o f work t o m e n t a l h e a l t h i s d i s c u s s e d . T h i s a r e a o f l i t e r a t u r e i s d i s c u s s e d because i t p r o v i d e s a r a t i o n a l e f o r e x a m i n i n g t h e v a r i a b l e o f work. Second, l i t e r a t u r e a d d r e s s i n g t h e c u r r e n t knowledge about work as r e l a t e d t o i n d i v i d u a l s w i t h s c h i z o p h r e n i a i s d i s c u s s e d . T h i s d i s c u s s i o n p r o v i d e s an u n d e r s t a n d i n g o f what knowledge i s a l r e a d y a v a i l a b l e and where t h e gaps i n knowledge e x i s t i n r e l a t i o n t o work e x p e r i e n c e s o f i n d i v i d u a l s w i t h s c h i z o p h r e n i a . The t h i r d a r e a o f l i t e r a t u r e a d d r e s s e d i s t h a t w h i c h p e r t a i n s t o t h e e x p e r i e n c e o f m e n t a l i l l n e s s as d e s c r i b e d from t h e p e r s p e c t i v e o f i n d i v i d u a l s w i t h m e n t a l d i s o r d e r s . T h i s body o f l i t e r a t u r e p r o v i d e s an u n d e r s t a n d i n g o f t h e gaps i n t h e knowledge r e l a t e d t o how m e n t a l l y i l l i n d i v i d u a l s a c t u a l l y p e r c i e v e t h e i r own e x p e r i e n c e s i n r e l a t i o n t o m e n t a l h e a l t h and i l l n e s s . S i g n i f i c a n c e o f Work  S i g n i f i c a n c e o f Work f o r t h e G e n e r a l P o p u l a t i o n A l a r g e body o f l i t e r a t u r e a d d r e s s e s t h e s i g n i f i c a n c e o f work t o t h e m e n t a l h e a l t h o f i n d i v i d u a l s . Many t h e o r i s t s w r i t e about t h e s i g n i f i c a n c e o f work. As Morgan (1983) reminds u s , " t h e h e a l t h - g i v i n g p r o p e r t i e s o f work have been r e c o g n i z e d s i n c e as l o n g ago as H i p p o c r a t e s and G a l e n . . . b u t i t s v a l u e has had t o be r e d i s c o v e r e d a g a i n and a g a i n by p i o n e e r s l i k e V a r v i e r - J o n e s and Woodhead (1918) i n t h e c a r e o f t h e p h y s i c a l l y i l l and John C o n o l l y (1847) and Simon o f G u t e r s l o h (1927) i n t h e c a r e o f t h e m e n t a l l y i l l " ( p.151). Westermeyer and Harrow (1987) w r i t e t h a t : T h e o r i s t s from F r e u d t o Marx have g i v e n work a c e n t r a l p l a c e i n human development. I n s t r u m e n t a l work performance can o f f e r t o i n d i v i d u a l s economic s e l f -s u f f i c i e n c y , s o c i a l s t a t u s , and t h e o p p o r t u n i t y t o i n t e r a c t w i t h o t h e r s . Work a l s o i n v o l v e s a g r e a t p r o p o r t i o n o f t h e t i m e i n p e o p l e ' s l i v e s . As such, i t can p r o v i d e a framework f o r o r g a n i z i n g t i m e a c r o s s 17 human l i f e c y c l e s , f o r g i v i n g s t r u c t u r e and meaning t o t h e d a y s , weeks and y e a r s o f p e o p l e ' s l i v e s (p.280). Work p l a y s a number o f i m p o r t a n t r o l e s i n human b e h a v i o r and, as a c e n t r a l element o f a d u l t l i f e , i t p r o v i d e s s t r u c t u r e f o r s o c i a l b e h a v i o r ( J a c o b s , 1988). I n most c u l t u r e s , work a c t i v i t i e s p l a y a s i g n i f i c a n t r o l e i n d e t e r m i n i n g s t a t u s among group members (Weiss & Reisman, 1961). H e w i t t (1949) s u g g e s t s t h a t work i s an e s s e n t i a l i n g r e d i e n t o f h e a l t h y l i f e , and t h a t p e o p l e s u f f e r i f t h e y a r e d e p r i v e d o f work. He argues t h a t work i s p a r t i c u l a r l y i m p o r t a n t f o r d i s a b l e d p e o p l e as t h r o u g h work t h e y can e x p e r i e n c e a marked improvement i n t h e i r p h y s i c a l and m e n t a l c o n d i t i o n . The impact o f l o n g - t e r m unemployment was s i m i l a r i n t h e 1930's and 1970's, s h a r i n g t h e same f e a t u r e s o f boredom, d e c l i n i n g s e l f - r e s p e c t and a p a t h e t i c r e s i g n a t i o n (Jahoda, 1979). Jahoda's e x a m i n a t i o n o f t h e e f f e c t s o f unemployment u n d e r s c o r e s t h e i m p o r t a n c e o f work f o r s t r u c t u r i n g t i m e , e n f o r c i n g a c t i v i t y , p r o v i d i n g s h a r e d e x p e r i e n c e s , l i n k i n g t h e i n d i v i d u a l t o e x t e r n a l g o a l s and c o n f e r r i n g p e r s o n a l s t a t u s and i d e n t i t y . O ther s t u d i e s on t h e e f f e c t s o f unemployment d u r i n g economic downturns n o t e i n c r e a s e s i n t h e i n c i d e n c e o f p h y s i c a l and m e n t a l i l l n e s s and o t h e r d i s t r e s s f o l l o w i n g j o b l o s s ( C a t a l a n o , Dooley & J a c k s o n , 1981; Dooley & C a t a l a n o , 1980). A r i n g (1974) p o i n t s o u t Goethe's c o n v i c t i o n t h a t employment i s n a t u r e ' s p h y s i c i a n and i s e s s e n t i a l t o human 18 h a p p i n e s s , as w e l l as Freud's b e l i e f t h a t work has a g r e a t e r e f f e c t t h a n any o t h e r t e c h n i q u e o f l i v i n g i n t h e d i r e c t i o n o f b i n d i n g t h e i n d i v i d u a l more c l o s e l y t o r e a l i t y . A c c o r d i n g t o Query (1968) , s e l f - i m a g e i s a f f e c t e d by p u r p o s e f u l a c t i v i t y s u c h as work. He w r i t e s , "work has meaning f o r t h e v a s t m a j o r i t y and unemployment a f f e c t s t h e s u b j e c t i v e i n f l u e n c e t h a t a p e r s o n b e l i e v e s he has on o t h e r p e o p l e " (p.158). I t i s p r o p o s e d by many ( C y n k i n , 1979; K i e l h o f n e r , 1977; Meyer, 1922; N e v i l l e , K r e i s b e r g & K i e l h o f n e r , 1985), t h a t work p l a y s an i m p o r t a n t r o l e i n t h e development and maintenance o f a h e a l t h y p e r s o n a l i t y . L a s t l y , i n h e r book The P s y c h o l o g y o f  O c c u p a t i o n s (1956), Anne Roe r e l a t e s Maslow's needs system t o work and c o n c l u d e s t h a t work i s p o t e n t i a l l y t h e most f r u i t f u l way t o f u l f i l l t h e needs a t each l e v e l o f Maslow's h i e r a r c h y o f needs. S i g n i f i c a n c e o f Work f o r P e o p l e w i t h a M e n t a l D i s o r d e r A n o t h e r body o f l i t e r a t u r e a d d r e s s e s t h e s i g n i f i c a n c e o f work t o t h e m e n t a l h e a l t h and community a d j u s t m e n t o f i n d i v i d u a l s w i t h m e n t a l d i s o r d e r s . The v a l u e o f work f o r many e x - p a t i e n t s i s i n c a l c u l a b l e . I t n o r m a l i z e s t h e i r image o f t h e m s e l v e s as a d u l t s c a p a b l e o f s e l f - s u p p o r t . As F r e u d s u g g e s t e d , work l i n k s p e r s o n s t o r e a l i t y , c o m p e l l i n g t h e n t o d e a l w i t h f a c t s , n o t f i c t i o n s . I t i s a b u l w a r k a g a i n s t r e g r e s s i o n . Through work, some ex-p a t i e n t s may become more r e c e p t i v e and a c c e s s i b l e t o o t h e r k i n d s o f h e l p . F i n a l l y some e x - p a t i e n t s , t h r o u g h work, may 19 b e g i n t o r e c o n s i d e r t h e i r v i e w s o f s o c i e t y i n more f r i e n d l y t e r m s ; s y m b o l i c a l l y , work o p p o r t u n i t i e s made a v a i l a b l e t o them can p r o v i d e f i r m e v i d e n c e t h a t we r e a l l y c a r e . S t u d i e s c o m p l e t e d as e a r l y as t h e 1960's demonstrate t h i s s i g n i f i c a n c e ( O l s h a n s k y , 1962 p. 3 5 ) . Brown, Bone, D a l i s o n and Wing (1966) and Monck (1963) d e m o n s t r a t e t h a t g a i n f u l employment i s a v a l u a b l e d i m e n s i o n i n t h e p o s t h o s p i t a l i z a t i o n a d j u s t m e n t o f i n d i v i d u a l s w i t h s c h i z o p h r e n i a . As p a r t o f a l a r g e r s t u d y , Monck c o l l e c t e d i n f o r m a t i o n on t h e work h i s t o r i e s o f 127 p a t i e n t s w i t h s c h i z o p h r e n i a . The p a t i e n t s were i n t e r v i e w e d two weeks, one month and t h e n one y e a r f o l l o w i n g d i s c a r g e from h o s p i t a l . Monck o b s e r v e s t h a t f o r a p r o p o r t i o n o f t h e p a t i e n t s employment was a n e c e s s a r y c o n d i t i o n o f s t a y i n g o u t o f h o s p i t a l . That i s , when t h e p a t i e n t c o n t i n u e d t o work though b e i n g o r becoming v e r y d i s t u r b e d , t h e r e l a t i v e ' s t o l e r a n c e f o r h i s d i s t u r b e d b e h a v i o r was i n c r e a s e d . As r e l a t i v e s e x p l a i n e d , t h e p a t i e n t ' s employment s h o r t e n e d t h e amount o f t i m e t h e y had t o spend w i t h him, and i t a f f i r m e d t h a t i n one r e s p e c t a t l e a s t he was s t i l l s o c i a l l y competant. From t h e p a t i e n t s ' p o i n t o f v i e w , g o i n g t o work o f f e r e d a means o f e s c a p i n g t h e i n f l u e n c e o f " n e g a t i v e " f a m i l y r e l a t i o n s h i p s . "These two c o n s i d e r a t i o n s o v e r l a p t h e normal h u m a n i t a r i a n and economic r e a s o n s f o r m a i n t a i n i n g d i s c h a r g e d m e n t a l p a t i e n t s , p a r t i c u l a r l y men i n open o r s h e l t e r e d employment" (p.109). Brown, Bone, D a l i s o n and Wing (1966) i n t e r v i e w e d a sub-group o f 177 p a t i e n t s from a l a r g e r s t u d y o f 339 p a t i e n t s and a s k e d them t o d e s c r i b e i n d e t a i l how t h e y had s p e n t t h e i r t i m e d u r i n g t h e p r e v i o u s week. Data a n a l y s i s r e v e a l e d t h a t unemployed i n d i v i d u a l s spend a v e r y h i g h p r o p o r t i o n o f t h e i r t i m e e i t h e r d o i n g n o t h i n g o r s i t t i n g i n f r o n t o f t h e t e l e v i s i o n s e t . The a u t h o r s s u g g e s t t h a t t h i s way o f l i f e i s u n l i k e l y t o s t i m u l a t e an i n t e r e s t i n l i f e o u t s i d e t h e home o r t o h e l p them overcome t h e i r h a n d i c a p s . They p o i n t out t h a t t h i s l i f e s t y l e i s l i t t l e d i f f e r e n t from t h a t o f s e v e r e l y h a n d i c a p p e d h o s p i t a l i z e d s c h i z o p h r e n i c p a t i e n t s f o r whom i n a c t i v i t y i s r e c o g n i z e d t o be a h a r m f u l t h i n g . They go on t o add t h a t "unemployment i s d e b i l i t a t i n g and may l e a d t o f u r t h e r breakdown. I t r e d u c e s an i n d i v i d u a l t o a s t a t e o f dependency w h i c h i s an i n s u l t t o h i s d i g n i t y and a c o n s t a n t r e m i n d e r o f h i s f a i l u r e " ( p . 7 2 ) . S i m i l a r r e s u l t s a r e d e s c r i b e d i n s t u d i e s c o mpleted i n t h e 1970s. Serban and Thomas (1974) f i n d t h a t work p l a y s a r o l e i n m a i n t a i n i n g t h e m e n t a l h e a l t h and p r e v e n t i n g h o s p i t a l r e a d m i s s i o n o f i n d i v i d u a l s w i t h s c h i z o p h r e n i a . D u r i n g t h e i r s t u d y t h e y q u e s t i o n e d 641 i n d i v i d u a l s w i t h s c h i z o p h r e n i a . On a d m i s s i o n and r e a d m i s s i o n t o h o s p i t a l , s u b j e c t s were q u e s t i o n e d i n r e l a t i o n t o t h e i r a t t i t u d e towards m e d i c a t i o n , a f t e r c a r e , employment, w e l f a r e and h o s p i t a l i z a t i o n . I n o r d e r t o d e t e r m i n e t h e e x t e n t t o w h i c h t h e s e v a r i a b l e s p r e d i c t r e a d m i s s s i o n , a d i s c r i m i n a n t f u n c t i o n a n a l y s i s was p e r f o r m e d . 21 Serban and Thomas f i n d t h a t unemployment and dependence on w e l f a r e a s s i s t a n c e r a n k as t h e two most d i s c r i m i n a t i n g v a r i a b l e s f o r d e t e r m i n i n g r e a d m i s s i o n t o h o s p i t a l . They c o n c l u d e t h a t dependence on w e l f a r e promotes f u r t h e r d e t e r i o r a t i o n and c o n t r i b u t e s t o t h e i n d i v i d u a l ' s a l r e a d y n e g a t i v e s e l f - c o n c e p t and t h e s e i n t u r n c o n d i t i o n t h e i n d i v i d u a l t o a c c e p t t h e h o s p i t a l as t h e o n l y n o n - r e j e c t i n g s o c i a l i n s t i t u t i o n . Matthews (1980) f i n d s t h a t i n d i v i d u a l s w i t h s c h i z o p h r e n i a who p a r t i c i p a t e i n work e x p e r i e n c e s have a s i g n i f i c a n t i n c r e a s e i n t h e i r l e v e l o f s e l f - e s t e e m as compared t o c o n t r o l s u b j e c t s . T h i s f i n d i n g i s t h e r e s u l t o f Matthew's s t u d y o f t h e e f f e c t s o f i n v o l v e m e n t i n a work program on t h e s e l f - e s t e e m and s o c i a l b e h a v i o r s o f 25 i n d i v i d u a l s w i t h c h r o n i c s c h i z o p h r e n i a . He matched 25 e x p e r i m e n t a l s u b j e c t s w i t h 25 c o n t r o l s u b j e c t s and t e s t e d each s u b j e c t on a s e l f - c o n c e p t s c a l e p r i o r t o and f o l l o w i n g a t e n week work program. Those who p a r t i c i p a t e d i n t h e work program were found t o i n c r e a s e t h e i r l e v e l o f s e l f - e s t e e m s i g n i f i c a n t l y o v e r t h e t e n week p e r i o d , w h i l e t h e c o n t r o l s u b j e c t s d i d n o t . More r e c e n t r e s e a r c h c o n t i n u e s t o s u p p o r t t h e s e r e s u l t s . A c c o r d i n g t o Westermeyer and Harrow (1987) , work has t a k e n on an added i m p o r t a n c e as t h e l e n g t h o f h o s p i t a l c a r e has d i m i n i s h e d f o r many i n d i v i d u a l s w i t h c h r o n i c m e n t a l h e a l t h p r o b l e m s . They w r i t e t h a t " g i v e n t h e i m p o r t a n c e o f employment t o t h e s e l f - e s t e e m and f i n a n c i a l s e c u r i t y o f i n d i v i d u a l s i n t h e community... work a d j u s t m e n t i n p s y c h i a t r i c p a t i e n t s m e r i t s a g r e a t e r f o c u s o f c o n c e r n i n d i a g n o s i s , t h e r a p y and r e s e a r c h e f f o r t s " (p.298). Watts (1983) i s a l s o c o n v i n c e d t h a t work m e r i t s a g r e a t e r f o c u s o f c o n c e r n and he c a u t i o n s a g a i n s t a l a c k o f i n t e r e s t i n t h e r o l e o f work i n p s y c h i a t r i c r e h a b i l i t a t i o n . He argu e s t h a t work i s c e n t r a l t o t h e s e l f - r e s p e c t and s e l f - c o n f i d e n c e o f many p e o p l e and t h a t work i s a p a r t o f most p e o p l e s * a s p i r a t i o n s f o r t h e r e s u m p t i o n o f normal s o c i a l l i f e . I n d i s c u s s i n g i n d i v i d u a l s w i t h m e n t a l h e a l t h c o n c e r n s , Watts w r i t e s , " u n l e s s p a t i e n t s * employment d i f f i c u l t i e s a r e u n d e r s t o o d , r e h a b i l i t a t i o n e f f o r t may be d i r e c t e d a t a s p e c t s o f work f u n c t i o n i n g t h a t w i l l make o l n y a m a r g i n a l d i f f e r e n c e t o t h e i r e m p l o y a b i l i t y " (p.216). I t i s c l e a r from t h i s body o f l i t e r a t u r e t h a t work p l a y s a c e n t r a l r o l e i n t h e m e n t a l h e a l t h o f an i n d i v i d u a l as i t a f f e c t s s e l f - e s t e e m , s e l f - r e s p e c t and s e l f - c o n f i d e n c e . I t i s a l s o c l e a r t h a t work has p o t e n t i a l b e n e f i t i n t h e r e h a b i l i t a t i o n and community a d j u s t m e n t o f i n d i v i d u a l s who have m e n t a l h e a l t h problems. Work and S c h i z o p h r e n i a  Employment S t a t u s o f I n d i v i d u a l s w i t h S c h i z o p h r e n i a A l t h o u g h , as i n d i c a t e d i n t h e p r e v i o u s d i s c u s s i o n , work i s s i g n i f i c a n t t o t h e m e n t a l h e a l t h o f i n d i v i d u a l s , many i n d i v i d u a l s w i t h s c h i z o p h r e n i a a r e unemployed. Numerous s t u d i e s d e m o n s t r a t e t h a t i n d i v i d u a l s w i t h s c h i z o p h r e n i a have problems r e l a t e d t o o b t a i n i n g and r e t a i n i n g work ( B l e u l e r , 1978; Brown, Bone, D a l i s o n & Wing, 1966; G u r e l , 1965; H a l l , S m i t h , & Shimkunas, 19 66; H a r r i s , L i n k e r , N o r r i s & Shepherd, 1956; Harrow, G r i n k e r , S i l v e r s t e i n & Holzman, 1978; Harrow, G r i n k e r , S i l v e r s t e i n , Holzman & Carone, 1987; McGlashen, 1984; Westermeyer, Harrow & Carone, 1987; Tsuang, Woolson & F l e m i n g , 1979; Wold, R o s e n f e i l d & Dwight, 1982). One o f t h e f i r s t groups t o s t u d y t h e employment s t a t u s o f i n d i v i d u a l s w i t h s c h i z o p h r e n i a was t h e group o f H a r r i s , L i n k e r , N o r r i s and Shepherd (1956). They s t u d i e d 123 i n d i v i d u a l s w i t h s c h i z o p h r e n i a who had been h o s p i t a l i z e d and t r e a t e d w i t h i n s u l i n t h e r a p y f i v e y e a r s p r e v i o u s . They i n d i c a t e t h a t o n l y 45 p e r c e n t o f t h e p e o p l e were independent and employed o u t s i d e h o s p i t a l w h i l e 21 p e r c e n t were l i v i n g d e p e n d e n t l y i n t h e community and t h e r e m a i n i n g 3 4 p e r c e n t were h o s p i t a l i z e d . I n 1962, t h e V e t e r a n s A d m i n i s t r a t i o n i n t h e U n i t e d S t a t e s c o n d u c t e d a n a t i o n w i d e s t u d y o f employment and r e a d m i s s i o n among 720 r e c e n t l y r e l e a s e d p a t i e n t s w i t h s c h i z o p h r e n i a ( G u r e l , 1965). The r e s e a r c h sought t o s p e c i f y t h e e x t e n t o f p o s t h o s p i t a l employment and t h e f r e q u e n c y o f r e a d m i s s i o n . G u r e l r e p o r t s t h a t 50 p e r c e n t o f t h e p a t i e n t s were n o t employed a t a l l d u r i n g t h e 37 week f o l l o w u p p e r i o d . Brown, Bone, D a i l s o n and Wing (1966) r e p o r t s i m i l a r r e s u l t s from t h e i r f i v e y e a r f o l l o w - u p s t u d y o f 3 39 p a t i e n t s w i t h s c h i z o p h r e n i a . B a s i c i n f o r m a t i o n on employment was c o l l e c t e d by i n t e r v i e w s w i t h t h e p a t i e n t o r r e l a t i v e , and was supplemented by i n f o r m a t i o n from h o s p i t a l and employment exchange r e c o r d s . The p a t i e n t s , 147 men and 192 women, a r e i d e n t i f i e d as f i r s t a d m i t t e d o r p r e v i o u s l y a d m i t t e d . The most s t r i k i n g f i n d i n g i s t h a t , a t t h e end o f t h e f i v e y e a r s , 55 p e r c e n t o f a l l t h e men were o ut o f work. J u s t under h a l f o f t h e p r e v i o u s l y a d m i t t e d women were e i t h e r unemployed a t f o l l o w - u p o r were u n a b l e t o p e r f o r m t h e i r d o m e s t i c d u t i e s c o m p e t e n t l y . The a u t h o r s r e p o r t t h a t a co m p a r i s o n o f p r e and p o s t a d m i s s i o n o c c u p a t i o n shows t h a t t h r e e - q u a r t e r s t o f o u r -f i f t h s o f a l l p r e v i o u s l y a d m i t t e d p a t i e n t s had e i t h e r a d e c l i n e i n o c c u p a t i o n or. were umemployed by t h e end o f t h e s t u d y p e r i o d . Among t h e f i r s t a d m i s s i o n p a t i e n t s , one t h i r d t o one h a l f o f them had a d e c l i n e i n o c c u p a t i o n o r were umemployed by t h e end o f t h e s t u d y p e r i o d . A s t u d y by H a l l , S mith and Shi n k u n a s , a l s o p u b l i s h e d i n 1966, p r o v i d e s a d d i t i o n a l i n f o r m a t i o n on t h e p r e and p o s t h o s p i t a l work e x p e r i e n c e s o f i n d i v i d u a l s w i t h s c h i z o p h r e n i a . The a u t h o r s r e p o r t t h a t j o b d i f f i c u l t i e s were e x p e r i e n c e d by 60.1 p e r c e n t o f t h e p a t i e n t s i n t h e f i v e y e a r p e r i o d p r e c e e d i n g a d m i s s i o n t o h o s p i t a l . One y e a r a f t e r d i s c h a r g e , t h i s r a t e had i n c r e a s e d t o 72.3 p e r c e n t . They n o t e t h a t i t i s p a r t i c u l a r l y s t r i k i n g t h a t 29;5 p e r c e n t o f p a t i e n t s who were c l a s s i f i e d as s t e a d y w o r k e r s p r i o r t o h o s p i t a l i z a t i o n were c a t e g o r i z e d as nonworkers a f t e r an a c u t e e p i s o d e o f s c h i z o p h r e n i a . B l e u l e r (1978) d e s c r i b e s t h e r e s u l t s o f one o f t h e l o n g e s t f o l l o w - u p s t u d i e s o f s c h i z o p h r e n i c p a t i e n t s e v e r c o m p l e t e d . I n Z u r i c h , i n 1942, B l e u l e r began a s t u d y o f 208 p a t i e n t s . T w e n t y -three y e a r s l a t e r , i n 1965, he c o m p i l e d t h e e x t e n s i v e d a t a i n t o a book e n t i t l e d The S c h i z o p h r e n i c  D i s o r d e r s : Lonqterm P a t i e n t and F a m i l y S t u d i e s . A t t h e end o f t h e s t u d y p e r i o d , 3 4 p e r c e n t o f t h e p a r t i c i p a n t s were emp l o y a b l e and 12 p e r c e n t were p a r t l y e m p l o y a b l e . The s o c i a l p o s i t i o n o f 3 p e r c e n t o f t h e p a r t i c i p a n t s c o u l d n o t be d e t e r m i n e d , l e a v i n g 51 p e r c e n t who were unemployable. I t s h o u l d be n o t e d t h a t t h e s e f i g u r e s r e p r e s e n t e m p l o y a b i l i t y as opposed t o t h e p e r c e n t a g e who were a c t u a l l y employed. I t i s c l e a r from t h e a f o r e m e n t i o n e d s t u d i e s t h a t a l a r g e number o f i n d i v i d u a l s w i t h s c h i z o p h r e n i a a r e n o t w o r k i n g . How does t h i s compare t o t h e employment s t a t u s o f i n d i v i d u a l s w i t h o t h e r m e n t a l i l l n e s s e s ? S e v e r a l r e s e a r c h e r s have a t t e m p t e d t o answer t h a t q u e s t i o n and p r e s e n t e v i d e n c e t h a t s c h i z o p h r e n i a i s more h i g h l y c o r r e l a t e d w i t h i m p a i r e d work f u n c t i o n i n g t h a n a r e o t h e r p s y c h i a t r i c d i a g n o s e s . F o r example, i n t h e i r s t u d y o f young c l i e n t s w i t h s c h i z o p h r e n i a d u r i n g t h e e a r l y phase o f t h e i r d i s o r d e r , Harrow, G r i n k e r , S i l v e r s t e i n and Holzman (1978) a s s e s s e d 132 c l i e n t s a t t h e t i m e o f h o s p i t a l i z a t i o n and t h e n r e a s s e s s e d them an average o f 2.7 y e a r s a f t e r h o s p i t a l d i s c h a r g e . The sample i n c l u d e d 26 79 c l i e n t s w i t h s c h i z o p h r e n i a and 53 n o n s c h i z o p h r e n i c c l i e n t s . Assessment i n v o l v e d a d e t a i l e d e v a l u a t i o n o f s o c i a l , work and f a m i l y f u n c t i o n i n g , t h e c l i e n t s ' s u b j e c t i v e e v a l u a t i o n s o f t h e i r own m e n t a l h e a l t h , t h e c l i e n t s ' i n t e l l e c t u a l l e v e l , t h e i r use o f m e d i c a t i o n and t h e i r symptomatology. T h e i r s t u d y r e s u l t s i n d i c a t e t h a t c l i e n t s w i t h s c h i z o p h r e n i a have p o o r e r p o s t - h o s p i t a l a d j u s t m e n t as compared t o n o n s c h i z o p h r e n i c c l i e n t s and t h e a r e a showing one o f t h e l a r g e s t s i g n i f i c a n t d i f f e r e n c e s i s t h a t o f work f u n c t i o n i n g . T h i s d i f f i c u l t y i n work f u n c t i o n i n g i s p a r t i c u l a r l y s t r i k i n g among t h e males; t h r e e - f o u r t h s o f t h e men show a t l e a s t some d i f f i c u l t y , o r l e s s t h a n adequate f u n c t i o n i n g , i n performance o f t h e i r e x p e c t e d work r o l e . I n a second f o l l o w - u p s t u d y , Harrow and c o l l e a g u e s (1987) a g a i n f i n d t h a t t h e p o s t - a c u t e work f u n c t i o n i n g o f s c h i z o p h r e n i c c l i e n t s shows s i g n i f i c a n t d i f f e r e n c e s i n c o m p a r i s o n w i t h n o n s c h i z o p h r e n i c c l i e n t s . They i n d i c a t e . t h a t , when vi e w e d from a b r o a d e r p e r s p e c t i v e , t h e d a t a on t h e v a r i o u s a r e a s o f f u n c t i o n i n g r e i n f o r c e t h e i m p o r t a n c e o f work a d j u s t m e n t and s o c i a l p erformance. T h e i r f i n d i n g s s u g g e s t t h a t a l t h o u g h work and s o c i a l d y s f u n c t i o n i n g a r e o f t e n seen as s e c o n d a r y symptoms, d u r i n g t h e c o u r s e o f t h e d i s o r d e r t h e s e s e c o n d a r y f e a t u r e s may become e q u a l l y o r more i m p o r t a n t t h a n t h e p s y c h o t i c f e a t u r e s i n terms o f t h e i n d i v i d u a l p a t i e n t ' s o v e r a l l a d j u s t m e n t . S i m i l a r r e s u l t s a r e found by Tsuang, Woolson and F l e m i n g (1979), who d e s c r i b e t h e i r 30 t o 40 y e a r f o l l o w u p o f 685 p e o p l e w i t h s c h i z o p h r e n i a , mania, d e p r e s s i o n and n o n p s y c h i a t r i c c o n d i t i o n s . F o r t h e i r s t u d y , l o n g t e rm outcome was a n a l y z e d i n terms o f s u b j e c t s ' m a r i t a l , r e s i d e n t i a l , o c c u p a t i o n a l and p s y c h i a t r i c s t a t u s . U s i n g t h e c a t e g o r i e s o f good, f a i r , and poor, as r a t i n g s on each s u b j e c t f o r each v a r i a b l e , a mean r a t i n g f o r each d i a g n o s t i c group was o b t a i n e d . Compared t o t h e o t h e r groups w h i c h f e l l i n t o t h e f a i r o r good c a t e g o r i e s f o r t h e v a r i a b l e o f employment, t h e s c h i z o p h r e n i c group was r a t e d i n t h e poor c a t e g o r y . Wold, R o s e n f i e l d and Dwight (1982) a l s o f i n d t h a t t h e d i a g n o s i s o f s c h i z o p h r e n i a i m p a i r s work performance s i g n i f i c a n t l y more t h a n would be t h e case f o r o t h e r d i a g n o s t i c e n t i t i e s . They s t u d i e d t h e r e l a t i o n s h i p between work performance and d i a g n o s i s i n a community m e n t a l h e a l t h c l i n i c p o p u l a t i o n . Two hundred and e i g h t e e n c o n s e c u t i v e l y a d m i t t e d c l i e n t s were c l a s s i f i e d i n 13 d i a g n o s t i c c a t e g o r i e s . Each s u b j e c t was r a t e d as t o whether o r n o t work impairment was p r e s e n t . As t h e y r e p o r t , s c h i z o p h r e n i a and b i p o l a r d i s o r d e r s a r e found t o i m p a i r work performance s i g n i f i c a n t l y more t h a n o t h e r d i a g n o s t i c e n t i t i e s . S i m i l a r l y , s t u d i e s by B u e l l and Anthony (1973) and O l s h a n s k y , Grob and E k d a h l (1960) d e m o n s t r a t e t h a t a d i a g n o s i s o f s c h i z o p h r e n i a i s a p r e d i c t o r o f poor work performance. 28 W h i l e t h e p r e v i o u s s t u d i e s compare t h e employment s t a t u s o f i n d i v i d u a l s w i t h s c h i z o p h r e n i a t o t h a t o f i n d i v i d u a l s w i t h o t h e r p s y c h i a t r i c d i a g n o s e s , one s t u d y o f f e r s a d d i t i o n a l i n f o r m a t i o n on t h e d i f f e r e n c e between s c h i z o p h r e n i a and o t h e r forms o f i l l n e s s . R a t h e r t h a n comparing s c h i z o p h r e n i a and o t h e r d i a g n o s t i c c a t e g o r i e s , Westermeyer, Harrow and Carone (1987) compare t h e work f u n c t i o n i n g o f n o n - p s y c h o t i c i n d i v i d u a l s t o t h a t o f i n d i v i d u a l s w i t h s c h i z o p h r e n i a , a p s y c h o t i c d i s o r d e r . They d e s c r i b e t h e r e s u l t s o f t h e i r f o l l o w - u p s t u d y o f 53 i n d i v i d u a l s w i t h s c h i z o p h r e n i a and 49 n o n p s y c h o t i c i n d i v i d u a l s . P a r t i c i p a n t s were a s s e s s e d a t i n d e x h o s p i t a l i z a t i o n and t h e n r e a s s e s s e d i n two s u c c e s s i v e f o l l o w - u p i n t e r v i e w s two y e a r s a f t e r h o s p i t a l d i s c h a r g e , and t h e n a g a i n from f o u r t o f i v e y e a r s a f t e r h o s p i t a l d i s c h a r g e . A l l f o l l o w - u p i n t e r v i e w s i n v o l v e d d e t a i l e d e v a l u a t i o n o f s o c i a l , work and f a m i l y f u n c t i o n i n g , symptomatology and r e h o s p i t a l i z a t i o n . S t a t i s t i c a l t e s t s comparing t h e two groups o f c l i e n t s i n d i c a t e s i g n i f i c a n t d i f f e r e n c e s a t b o t h f o l l o w - u p a s sessments, w i t h s c h i z o p h r e n i c c l i e n t s showing p o o r e r f u n c t i o n i n g t h a n n o n - p s y c h o t i c c l i e n t s i n t h e a r e a o f work. A n o t h e r s t u d y t h a t p r o v i d e s r e s u l t s s i m i l a r t o a l l o f t h o s e j u s t d e s c r i b e d i s one d e s i g n e d by McGlashen (1984). I n c o n t r a s t t o t h e o t h e r s t u d i e s , however, McGlashen i n c o r p o r a t e s v o l u n t e e r work and s t u d y i n g i n h i s d e f i n i t i o n o f employment. F o r h i s s t u d y , employment r e f e r s t o w o r k i n g f o r 29 pay, p u r s u i n g s t u d i e s , c a r i n g f o r a h o u s e h o l d and r a i s i n g c h i l d r e n and engaging i n v o l u n t e e r work. H i s s t u d y i n v o l v e s a f i f t e e n y e a r f o l l o w - u p o f 226 c l i e n t s t r e a t e d a t C h e s t n u t Lodge, a s m a l l p r i v a t e p s y c h i a t r i c h o s p i t a l . The c l i e n t s , i n c l u d i n g 163 p e o p l e w i t h s c h i z o p h r e n i a , were a s s e s s e d f o r t h e amount o f t i m e s p e n t i n h o s p i t a l , number o f s o c i a l a c t i v i t i e s , e x p e r i e n c e o f symptoms, amount o f t i m e s p e n t i n a c t i v e employment and t h e i r r a t e o f g o b a l f u n c t i o n i n g . Even w i t h t h e b r o a d e r v i e w o f employment, compared t o t h e c l i e n t s i n o t h e r d i a g n o s t i c c a t e g o r i e s , t h e c l i e n t s w i t h s c h i z o p h r e n i a w o r k e d . l e s s f o r a s i g n i f i c a n t l y g r e a t e r f r a c t i o n o f t h e f o l l o w - u p p e r i o d . F a c t o r s H i n d e r i n g Employment As j u s t d e s c r i b e d , many s t u d i e s show t h a t i n d i v i d u a l s w i t h s c h i z o p h r e n i a have d i f f i c u l t y i n f i n d i n g and k e e p i n g a j o b . T h i s l e a d s t o t h e q u e s t i o n : what a r e t h e r e a s o n s t h a t t h e s e i n d i v i d u a l s have d i f f i c u l t y i n f i n d i n g and k e e p i n g work? S e v e r a l a u t h o r s and r e s e a r c h e r s p r o v i d e v i e w s on t h e r e a s o n s f o r work impairment i n t h i s p o p u l a t i o n . McCue and K a t z (1983) s u g g e s t t h a t b e h a v i o r a l symptoms such as d e l u s i o n s , h a l l u c i n a t i o n s , s o c i a l i s o l a t i o n , b i z a r r e b e h a v i o r s and r e s t l e s s n e s s i n h i b i t j o b a q u i s i t i o n and work a d j u s t m e n t . I t s h o u l d be n o t e d t h a t o t h e r s d i s a g r e e . A number o f s t u d i e s i l l u s t r a t e t h e l a c k o f r e l a t i o n s h i p between assessments o f p s y c h i a t r i c symptomology and f u t u r e work p e r f o r m a n c e ( E l l s w o r t h , F o s t e r , C h i l d e r s , A r t h u r , & K r o e k e r , 30 1968; G u r e l & L o r e i , 1972: L o r e i , 1967; M o l l e r , von Z e r s t e n , W e r n e r - E i l e r t , & Wuschenr-Stockheim, 1982: S c h w a r t z , Meyers, & A s t r a c h a n , 1975: S t r a u s s & C a r p e n t e r , 1974 ). F o r example, v o c a t i o n a l p e r formance f o r p a t i e n t s w i t h s c h i z o p h r e n i a does n o t c o r r e l a t e w i t h t h o u g h t d i s o r d e r s , d e p r e s s i o n , f l a t t e n e d e motion ( S t r a u s s & C a r p e n t e r , 1974), o r w i t h a n x i e t y , v e r b a l h o s t i l i t y and d e p r e s s i o n ( G u r e l & L o r e i , 1972); nor w i t h g l o b a l p s y c h o p a t h o l o g i c a l s t a t e ( M o l l e r , Von Z e r s t e n , Werner-E i l e r t & Wuschner-Stockheim, 1982). Wold, R o s e n f e l d and Dwight (1982), i n t h e s t u d y p r e v i o u s l y d i s c u s s e d , c o n c l u d e t h a t work performance i s n o t n e c e s s a r l y c o r r e l a t e d t o s e v e r i t y o f symptoms. Summarizing s t u d i e s t h a t l o o k a t p r e d i c t o r s o f work performance, Anthony and J a n s e n (1984) s u g g e s t t h a t , r a t h e r t h a n symtoms, a poor work h i s t o r y , i n a b i l i t y t o g e t a l o n g w i t h o t h e r s and poor e g o - s t r e n g t h i n t h e r o l e o f worker a r e more s t r o n g l y r e l a t e d t o l a c k o f s u c c e s s i n employment. Krupa and T h o r n t o n (1986) o f f e r f u r t h e r e x p l a n a t i o n s f o r t h e f a c t t h a t l a r g e numbers o f i n d i v i d u a l s w i t h s c h i z o p h r e n i a a r e unemployed. They w r i t e t h a t " hypohedonia w i l l a f f e c t t h e s c h i z o p h r e n i c c l i e n t ' s a b i l i t y t o f i n d s a t i s f a c t i o n and i n t e r e s t i n o c c u p a t i o n a l b e h a v i o r s " ( p . 7 ) . Hypohedonia, a d e c r e a s e i n t h e amount o f p l e a s u r e e x p e r i e n c e d , i s a f e a t u r e common t o a s i g n i f i c a n t p r o p o r t i o n o f p e o p l e w i t h s c h i z o p h r e n i a . Krupa and T h o r n t o n (198 6) c o n c l u d e t h a t h ypohedonia a f f e c t s t h e a b i l i t y o f an i n d i v i d u a l t o f i n d s a t i s f a c t i o n and i n t e r e s t i n work b e h a v i o r s and t h e r e f o r e has a l o n g s t a n d i n g and a d v e r s e i n f l u e n c e on e f f e c t i v e n e s s i n k e e p i n g a j o b . Westermeyer and Harrow (1987) d e s c r i b e a s t u d y t h e y d e s i g n e d t o r e s e a r c h f a c t o r s w h i c h might be i n v o l v e d i n t h e i m p a i r e d work f u n c t i o n i n g found i n many i n d i v i d u a l s w i t h s c h i z o p h r e n i a . A sample o f 125 form e r p s y c h i a t r i c i n p a t i e n t s , i n c l u d i n g 33 p e o p l e w i t h s c h i z o p h r e n i a , was f o l l o w e d up and s u b j e c t e d t o d e t a i l e d s t r u c t u r e d i n t e r v i e w s t o d e t e r m i n e p o s s i b l e f a c t o r s l e a a d i n g t o d e c l i n e i n work f u n c t i o n i n g . D u r i n g t h e i n t e r v i e w , c l i e n t s p r o v i d e d i n f o r m a t i o n on s p e c i f i c symptom/work l i n k a g e s i n e v e r y d a y work s e t t i n g s . C l i e n t s d e s c r i b e d s i t u a t i o n s i n w h i c h symptoms such as d e c r e a s e d c o n c e n t r a t i o n , p a r a n o i d i d e a t i o n and l e t h a r g y d i s r u p t e d work. F o l l o w i n g t h e i n t e r v i e w s , s u b j e c t s c o mpleted a w r i t t e n c h e c k l i s t w h i c h p r e s e n t e d s i x t e e n s p e c i f i c r e a s o n s f o r c u r r e n t work d i s r u p t i o n s i n c l u d i n g d i f f i c u l t y i n t h i n k i n g o r c o n c e n t r a t i n g , a n x i e t y , d e p r e s s i o n , d i s t r u s t o f o t h e r p e o p l e , m e d i c a t i o n s , l a c k o f energy, need t o a v o i d work s t r e s s , l i t t l e m o t i v a t i o n f o r w o r k i n g , l a c k o f j o b o p p o r t u n i t y , l a c k o f e d u c a t i o n o r j o b s k i l l s , d i s c r i m i n a t i o n , f e a r o f f a i l i n g , d i f f i c u l t i e s i n r e l a t i n g t o o t h e r p e o p l e , f e a r o f s o c i a l r e l a t i o n s h i p s and d r u g o r a l c o h o l problems. Two p a r t i c u l a r r e a s o n s d i s t i n g u i s h e d work i m p a i r e d i n d i v i d u a l s w i t h s c h i z o p h r e n i a from t h o s e w i t h o u t s c h i z o p h r e n i a . The form e r were more l i k e l y t h a n n o n s c h i z o p h r e n i c s t o i d e n t i f y d i s t r u s t o f o t h e r p e o p l e and m e d i c a t i o n s as d i s r u p t i v e t o work a d j u s t m e n t . The a u t h o r s i n d i c a t e t h a t , l o g i c a l l y , one m ight assume t h a t p e o p l e w i t h s c h i z o p h r e n i a would be more l i k e l y t o e x p e r i e n c e p a r a n o i d i d e a t i o n and t o t a k e m e d i c a t i o n t o c o n t r o l p s y c h o t i c symptoms. They s u r m i s e t h a t a n t i - p s y c h o t i c m e d i c a t i o n s may be more d i s r u p t i v e t o e f f e c t i v e work f u n c t i o n i n g t h a n many o t h e r t y p e s o f m e d i c a t i o n s . Based on t h e i n t e r v i e w d a t a , Westermeyer and Harrow (1987) c o n c l u d e t h a t symptoms pathognomonic o f s c h i z o p h r e n i a p l a y a major r o l e i n d i s r u p t i n g t h e c a p a c i t y f o r work. J e f f r i e s , Plummer, Seeman and T h o r n t o n (1990) i n i c a t e t h a t e x - p a t i e n t s a r e o f t e n a m b i v a l e n t about r e t u r n i n g t o t h e w o r k f o r c e and c i t e s e v e r a l a r e a s o f c o n c e r n such as t h e f o l l o w i n g : l a c k o f c o n f i d e n c e i n ones a b i l i t y t o cope w i t h t h e j o b , d i f f i c u l t y i n g e t t i n g up i n t h e morning and f a c i n g t i m e p r e s s u r e s , f e a r o f a l o n g t e rm commitment, s l o w n e s s , p r e o c u p a t i o n w i t h t h o u g h t , and moodiness. H a l l , S m i t h and Shimkunas (1966) w r i t e t h a t i n t e r f e r e n c e i n work performance i s o f t e n due t o s uch f a c t o r s as poor judgement from c o n c r e t e t h i n k i n g , l a c k o f i n i t i a t i v e , u n p r e d i c t a b l e b e h a v i o r , and abscence from work because o f p a r a n o i d f e a r s . O ther f a c t o r s , s u ch as l a c k o f e n t h u s i a s m and s e n s i t i v i t y t o c r i t i c i s m (Watts, 1978), f a t i g u a b i l i t y and i n a b i l i t y t o pace work and o r g a n i z e t a s k s (Wadsworth, W e l l s & S c o t t , 1962), and h y p e r s e n s i t i v i t y t o c e n s u r e (Rodnick & Garmezy, 1957), a r e c i t e d as f a c t o r s a c c o u n t i n g f o r d e f i c i t s i n work performance and employment s t a t u s . F a c t o r s F a c i l i t a t i n g Employment A n o t h e r body o f l i t e r a t u r e a d d r e s s e s f a c t o r s r e l a t e d t o good employment outcome. A b i l i t y t o f u n c t i o n s o c i a l l y w i t h o t h e r s seems t o improve t h e chances o f an i n d i v i d u a l m a i n t a i n i n g work. R a t i n g s of g e n e r a l s o c i a l f u n c t i o n i n g have been found t o c o r r e l a t e w i t h v o c a t i o n a l p e r formance ( G r i f f i t h s , 1974; G u r e l & L o r e i 1972; S t r a u s s & C a r p e n t e r , 1974; Sturm & L i p t o n , 1967). The c o n c e p t o f s o c i a l f u n c t i o n i n g i s d e s c r i b e d d i f f e r e n t l y i n each s t u d y . N o n e t h e l e s s , i n s p i t e o f t h e range o f i t e m s used t o t a p s o c i a l f u n c t i o n i n g , t h e s t u d i e s a r e v e r y s i m i l a r i n f i n d i n g a r e l a t i o n s h i p between s o c i a l a b i l i t y , f u t u r e v o c a t i o n a l p e r f o r m a n c e , and e f f o r t s t o improve i n d i v i d u a l s ' work h i s t o r i e s . A n o t h e r f a c t o r t h a t improves i n d i v i d u a l s ' chances o f f i n d i n g and k e e p i n g a j o b i s p a r t i c i p a t i o n i n c e r t a i n programs and s e r v i c e s . Wing (1960) d e m o n s t r a t e s t h a t i n d u s t r i a l work programs a r e e f f e c t i v e i n h e l p i n g i n d i v i d u a l s w i t h s c h i z o p h r e n i a o b t a i n work. S t e i n and T e s t (1976) d e s c r i b e a community t r e a t m e n t program f o r an e x p e r i m e n t a l group o f 65 a d u l t p s y c h i a t r i c p a t i e n t s . The e x p e r i m e n t a l group p a r t i c i p a t e d i n d a i l y a c t i v i t i e s , l e a r n e d l i v i n g s k i l l s and were h e l p e d t o f i n d j o b s o r s h e l t e r e d workshop placement. S t a f f gave o n - t h e - j o b s u p p o r t a f t e r placement, w i t h d a i l y c o n t a c t a t f i r s t , d i m i n i s h i n g as t h e p a t i e n t p r o g r e s s e d . R e s u l t s show t h e e x p e r i m e n t group has a s i g n i f i c a n t r e d u c t i o n i n symptoms, i s employed more, and s c o r e s h i g h e r i n s e l f -esteem and s a t i s f a c t i o n w i t h l i f e t h a n a c o n t r o l group o f 65 i n d i v i d u a l s . Seeman (1978) examined t h e r e l a t i v e e f f e c t i v e n e s s o f s p e c i a l t y c l i n i c s v e r s u s p r i v a t e p s y c h i a t r i c t r e a t m e n t f o r 30 c l i e n t s w i t h s c h i z o p h r e n i a . On d i s c h a r g e , she randomly a s s i g n e d t h e c l i e n t s t o e i t h e r t h e s p e c i a l i z e d a f t e r c a r e c l i n i c o r t o a p r i v a t e p s y c h i a t r i s t . Her a n a l y s i s i n d i c a t e s t h a t , a t t h e end o f s i x months, c l i n i c c l i e n t s spend s i g n i f i c a n t l y l e s s t i m e i n h o s p i t a l s and a r e s i g n i f i c a n t l y more o c c u p i e d i n employment o r i n s c h o o l t h a n a r e p r i v a t e c l i e n t s . She c o n c l u d e s t h a t t h e network o f s t a f f a i d s t h e c l i e n t ' s t r a n s i t i o n i n t o employment. D e n i c o l a (1980) d e s c r i b e s a s t u d y comparing t h e e f f e c t i v e n e s s o f f o u r d i f f e r e n t methods o f t r a i n i n g j o b i n t e r v i e w s k i l l s f o r c l i e n t s w i t h s c h i z o p h r e n i a . F i f t y c l i e n t s were a s s i g n e d t o t h r e e m o d e l l i n g c o n d i t i o n s e m p l o y i n g : 1) c e n s u r e p r a i s e r e i n f o r c m e n t o r p r a i s e and c e n s u r e , 2) a d i d a c t i c c o n d i t i o n i n w h i c h a v i d e o t a p e d i n s t r u c t i o n on j o b i n t e r v i e w b e h a v i o r was g i v e n , o r 3) a c o n t r o l group w h i c h saw an i r r e l e v a n t v i d e o t a p e . A b e h a v i o r a l i n t e r v i e w s c a l e was used as a dependant measure. R e s u l t s i n d i c a t e t h a t t h e c e n s u r e d model and t h e r e i n f o r c e d / c e n s u r e d model c o n d i t i o n s s i g n i f i c a n t l y improved t h e c l i e n t s ' s k i l l s r e l a t i v e t o t h e o t h e r groups. Many s t u d i e s demonstrate t h e e f f e c t i v e n e s s o f s h e l t e r e d workshops on i n d i v i d u a l s ' work performance and s o c i a l a d j u s t m e n t . W r i t i n g i n t h e 1950s, B e l l a k , B l a c k , L u r i e and M i l l e r (1956) d e s c r i b e t h e e f f e c t i v e n e s s o f a s h e l t e r e d workshop program and w r i t e " i n such programs, work assumes even more s o c i a l and p s y c h o l o g i c a l v a l u e because h e r e work h a b i t s a r e a q u i r e d i n t h e m i d s t o f an environment o f ease, t r u s t and f r i e n d s h i p " (p.296). Anthony and J a n s e n (1984) summarize t h e r e s u l t s o f v a r i o u s s t u d i e s and w r i t e t h a t t h e b e s t c l i n i c a l p r e d i c t o r o f f u t u r e work performance i s r a t i n g s o f a p e r s o n ' s work a d j u s t m e n t s k i l l s made i n a workshop s e t t i n g o r s h e l t e r e d j o b s i t e . I n s t u d i e s i n w h i c h work a d j u s t m e n t s k i l l s were a s s e s s e d , such s k i l l s were found t o be s i g n i f i c a n t l y r e l a t e d t o f u t u r e work performance (Cheadle, C u s h i n g , Drew, & Morgan, 1967; Cheadle & Morgan, 1972;). S t e i n (1984) p r o v i d e s a comprehensive l i s t o f programs d e s i g n e d t o h e l p p s y c h i a t r i c p a t i e n t s , i n c l u d i n g i n d i v i d u a l s w i t h s c h i z o p h r e n i a , t o r e a l i z e t h e i r work p o t e n t i a l . These i n c l u d e programs f o r e v a l u a t i o n o f s k i l l s and a p p t i t u d e s , o c c u p a t i o n a l i n f o r m a t i o n g r o u p s , i n d i v i d u a l p r e v o c a t i o n a l c o u n s e l i n g , v o c a t i o n a l t r a i n i n g , pre-employment group c o u n s e l l i n g , t r a n s i t i o n a l v o l u n t e e r work, s h e l t e r e d workshops, temporary t r y o u t work, and s p e c i a l placement. S t e i n (1984) d i s c u s s e s v a r i o u s s t u d i e s t h a t d e m o n s t r a t e t h e e f f e c t i v e n e s s o f t h e s e programs and c o n c l u d e s t h a t , i n g e n e r a l , t h e programs a r e v e r y e f f e c t i v e . F o r example, he d e s c r i b e s a s t u d y t o e v a l u a t e t h e e f f e c t i v e n e s s o f a t r a n s i t i o n a l v o l u n t e e r work program. The 1960's s t u d y i n v o l v e d 60 women who p a r t i c i p a t e d i n an i n f o r m a l r e s e a r c h p r o j e c t . A l l o f t h e women were d i a g n o s e d w i t h c h r o n i c s c h i z o p h r e n i a and had been h o s p i t a l i z e d from 15 t o 25 y e a r s . The s t u d y f i n d i n g s r e v e a l t h a t o u t o f t h e o r i g i n a l sample, 3 2 women were employed i n p r i v a t e i n d u s t r y , 4 were housewives, 8 d i d n o t improve, 5 were b e i n g p r e p a r e d f o r j o b placement, and 11 were s t i l l i n t h e p s y c h i a t r i c h o s p i t a l . S t e i n c o n c l u d e s t h a t t h e s t u d y d e m o n s t r a t e s t h e e f f e c t i v e n e s s o f s t r u c t u r e d t r a n s i t i o n a l v o u l u n t e e r work f o r h o s p i t a l i z e d p a t i e n t s . K u e h n e l , Liberman, S t o r z b a c h and Rose (1990) a l s o p r o v i d e a l i s t o f e f f e c t i v e programs. I n t h e i r r e s o u r c e book, t h e a u t h o r s p r o v i d e many examples o f what t h e y r e f e r t o as, h i g h q u a l i t y , e f f e c t i v e community s u p p o r t programs. One s e c t i o n o f t h e book d e a l s s p e c i f i c a l l y w i t h v o c a t i o n a l programs. The a u t h o r s i n c l u d e a d i s c u s s i o n o f t h e e v a l u a t i o n o f t h e s e r v i c e s , and i t i s c l e a r t h a t t h e programs a r e e f f e c t i v e i n h e l p i n g i n d i v i d u a l s o b t a i n and r e t a i n work. They d e s c r i b e , f o r example, Eden E x p r e s s I n c . , a n o n p r o f i t c o r p o r a t i o n t h a t p r o v i d e s a r e s t a u r a n t based v o c a t i o n a l t r a i n i n g program. They i n d i c a t e t h a t t h i s program has a h i g h s u c c e s s r a t e . I n a f o l l o w u p s u r v e y , 72 former c l i e n t s responded, o f w h i c h 84 p e r c e n t were a b l e t o m a i n t a i n j o b s o r were g o i n g t o s c h o o l . A s t u d y by Walker and McCourt (1965) d e m o n s t r a t e s t h e e f f e c t i v e n e s s o f s p e c i a l placement programs. I n c o m p l e t i n g a n a t i o n w i d e s t u d y t o e v a l u a t e t h e employment outcome o f 211 d i s c h a r g e d p a t i e n t s w i t h s c h i z o p h r e n i a , Walker and McCourt (1965) found t h a t , 53 p e r c e n t o f t h e p a t i e n t s had p a r t i c i p a t e d i n a v o c a t i o n a l r e h a b i l i t a t i o n program a t h e t h e h o s p i t a l , w h i l e 47 p e r c e n t were employed f o r a p e r i o d o f t i m e a f t e r d i s c h a r g e . The i n v e s t i g a t o r s c o n c l u d e t h a t t h e r e i s a need f o r much g r e a t e r use o f s p e c i a l employment c e n t e r s and/or placement c e n t e r s i n h e l p i n g t h e m e n t a l l y i l l t o s u c e s s f u l l y o b t a i n employment. v A n o t h e r f a c t o r r e l a t e d t o good employment outcome i s t h e p r e s e n c e o f a good work h i s t o r y . One o f t h e b e s t demographic p r e d i c t o r s o f f u t u r e work performance i s t h e p e r s o n ' s p r i o r employment h i s t o r y (Anthony & J a n s e n , 1984). S t u d i e s i n v e s t i g a t i n g t h e r e l a t i o n s h i p between p r e v i o u s employment h i s t o r y and f u t u r e v o c a t i o n a l performance show a s i g n i f i c a n t p o s i t i v e a s s o c i a t i o n between t h e two v a r i a b l e s ( L i p t o n & Kaden, 19 65; L o r e i , 1967; L o r e i & G u r e l , 1973; M o l l e r , von Z e r s t e n , W e r n e r - E i l e r t & Wuschner-Stockheim, 1982; S t r a u s s & C a r p e n t e r , 1974; Walker & McCourt, 1965). F o r example, L o r e i and G u r e l r e p o r t on t h e r e l a t i o n s h i p between employment and s e v e r a l demographic v a r i a b l e s o b t a i n e d from t h e p a t i e n t and o r r e c o r d s , a t t h e t i m e o f t h e p a t i e n t ' s r e l e a s e from 38 h o s p i t a l . The a u t h o r s r e p o r t t h a t " t h e r e s u l t s a r e e m i n e n t l y c o n s i s t e n t w i t h t h e e x p e c t a t i o n t h a t p a s t b e h a v i o r t e n d s t o be t h e b e s t p r e d i c t o r o f f u t u r e b e h a v i o r . The b e s t p r e d i c t o r o f amount o f work i n t h e f o l l o w - u p p e r i o d was t h e months o f f u l l - t i m e work i n t h e f i v e y e a r s p r i o r t o r e l e a s e " (p.427). W h i l e t h e employment h i s t o r y i s d e f i n e d somewhat d i f f e r e n t l y i n each o f t h e s e s t u d i e s , t h e r e s u l t s a r e q u i t e u n i f o r m . I n s u m m arizing t h e l i t e r a t u r e a d d r e s s i n g t h e r e l a t i o n s h i p o f work and s c h i z o p h r e n i a , s e v e r a l p o i n t s can be made. F i r s t , t h e r e i s abundant e v i d e n c e t h a t i n d i v i d u a l s w i t h s c h i z o p h r e n i a have problems f i n d i n g and k e e p i n g a j o b . T h i s f i n d i n g i s made e s p e c i a l l y c l e a r when t h e work h i s t o r i e s o f i n d i v i d u a l s w i t h s c h i z o p h r e n i a a r e compared t o t h e work h i s t o r i e s o f i n d i v i d u a l s who have o t h e r t y p e s o f m e n t a l d i s o r d e r s . Second, many f a c t o r s have a n e g a t i v e impact on t h e i n d i v i d u a l ' s a b i l i t y t o f i n d and keep a j o b . W h i l e t h e r e i s d i s a g r e e m e n t as t o w h i c h f a c t o r s have t h e s t o n g e s t i mpact, i t has been s u g g e s t e d t h a t p s y c h o t i c symptoms, s o c i a l d y s f u n c t i o n , l a c k o f c o n f i d e n c e , l a c k o f e n t h u s i a s m , s i d e e f f e c t s o f m e d i c a t i o n s , hypohedonia, and many o t h e r f a c t o r s a f f e c t t h e p e r s o n ' s a b i l i t y t o g e t and keep a j o b . A t h i r d p o i n t i s t h a t t h e r e a r e many f a c t o r s w h i c h may improve t h e i n d i v i d u a l ' s chances o f s u c c e s s f u l l y o b t a i n i n g and m a i n t a i n i n g employment. Some f a c t o r s , such as p r e v i o u s work h i s t o r y , d e s c r i b e i n t e r n a l c o n d i t i o n s t h a t may improve e m p l o y a b i l i t y , o t h e r f a c t o r s , such as s k i l l s t r a i n i n g 39 programs, p r e s c r i b e e x t e r n a l c o n d i t i o n s t h a t may improve e m p l o y a b i l i t y . R e f e r e n c e t o Work i n t h e E x p e r i e n t i a l L i t e r a t u r e W i t h i n t h e body o f l i t e r a t u r e j u s t d e s c r i b e d , t h e r e i s no d i s c u s s i o n o f t h e i n d i v i d u a l ' s p e r s p e c t i v e o f t h e e x p e r i e n c e o f o b t a i n i n g and r e t a i n i n g work. There seems t o be more c o n c e r n w i t h t h e numbers o f p e o p l e who work, how o f t e n t h e y work, and what f a c t o r s i n t e r f e r e w i t h work. There i s l e s s c o n c e r n w i t h t h e a c t u a l work e x p e r i e n c e s . One m ight ask whether t h e r e a r e s o u r c e s o f knowledge c o n c e r n i n g t h e e x p e r i e n c e s o f i n d i v i d u a l s w i t h s c h i z o p h r e n i a and whether t h e s e s o u r c e s d i s c u s s work. I n answer t o t h i s , t h e r e i s a body o f l i t e r a t u r e w h i c h d e c r i b e s t h e e x p e r i e n c e s o f i n d i v i d u a l s w i t h m e n t a l d i s o r d e r s , and a l a r g e p o r t i o n o f t h e l i t e r a t u r e p e r t a i n s t o i n d i v i d u a l s w i t h s c h i z o p h r e n i a . A p a r t from t h e p a t i e n t s who have w r i t t e n o f t h e i r e x p e r i e n c e s and t h e e x i s t e n t i a l t h e r a p i s t s whose b a s i c a p proach c e n t e r s on t r y i n g t o u n d e r s t a n d t h e p a t i e n t ' s p o i n t o f v i e w . . . t h e r e a r e two groups t h a t have b u s i e d t h e m s e l v e s w i t h m e n t a l i l l n e s s from t h e p a t i e n t ' s p e r s p e c t i v e . One i n c l u d e s w r i t e r s o f n o v e l s and p l a y s , f i l m makers and a few p s y c h i a t r i s t s . The o t h e r i s c o m p r i s e d o f s o c i a l s c i e n t i s t s (Sonn 1977, p.249)." Sonn i d e n t i f i e s t h r e e p o t e n t i a l s o u r c e s o f knowledge c o n c e r n i n g t h e e x p e r i e n c e s o f i n d i v i d u a l s w i t h m e n t a l i l l n e s s : t h e c l i e n t s ' f i r s t p e r s o n a c c o u n t s , t h e 40 p r o f e s s i o n a l s ' a c c o u n t s , and t h e l i t e r a r y a c c o u n t s . L i t e r a r y a c c o u n t s such as Kesey (1962) p r o v i d e l i t t l e i n f o r m a t i o n about t h e work e x p e r i e n c e o f p e o p l e w i t h s c h i z o p h r e n i a t h e r e f o r e d i s c u s s i o n w i l l f o c u s on t h e c l i e n t s ' and p r o f e s s i o n a l s ' a c c o u n t s . F i r s t P e r s o n A c c o u n t s T h e r e . a r e many f i r s t p e r s o n a c c o u n t s o f t h e e x p e r i e n c e o f l i v i n g w i t h m e n t a l i l l n e s s . Some i n d i v i d u a l s have w r i t t e n books d e c r i b i n g t h e i r e x p e r i e n c e ( B e e r s , 1953; G i b s o n , 1976; N o r t h , 1987; Sechehaye, 1951; S t e f a n , 1966; Vonnegut, 1975). Other f i r s t p e r s o n a c c o u n t s a r e i n c l u d e d i n books w r i t t e n by h e a l t h p r o f e s s i o n a l s (Freeman & Simmons, 1963; J e f f r i e s , Plummer, Seeman & T h o r n t o n , 1990; R u b i n , 1961). Among t h e s e f i r s t p e r s o n a c c o u n t s a r e a number w h i c h d e s c r i b e , i f o n l y b r i e f l y , some o f t h e work e x p e r i e n c e s o f t h e i n d i v i d u a l . B e e r s (1953) w r i t e s about h i s d i s c h a r g e from h o s p i t a l and h i s o b t a i n m e n t , t h r e e months l a t e r , o f a p o s i t i o n w i t h a f i r m f o r w h i c h he had worked p r e v i o u s t o h o s p i t a l i z a t i o n . I t was by t h e merest chance t h a t I made t h i s most f o r t u n a t e b u s i n e s s c o n n e c t i o n . ... Though p e r s o n s d i s c h a r g e d from m e n t a l h o s p i t a l s a r e u s u a l l y a b l e t o s e c u r e , w i t h o u t much d i f f i c u l t y , work as u n s k i l l e d l a b o r e r s , o r p o s i t i o n s where t h e r e s p o n s i b i l i t y i s s l i g h t , i t i s o f t e n n e x t t o i m p o s s i b l e f o r them t o s e c u r e p o s i t i o n s o f t r u s t (p.209) B e e r s i n d i c a t e s t h a t o f t e n i t i s d i f f i c u l t f o r f o r m e r p a t i e n t s t o f i n d employment because "an i n h e r e n t d r e a d o f i n s a n i t y l e a d s t o d i s t r u s t o f one who has had a m e n t a l breakdown" (p. 208). He a l s o s u g g e s t s t h a t an employers l a c k o f c o n f i d e n c e i n a f o r m e r p a t i e n t i s i n f l u e n c e d by t h e p a t i e n t ' s own l a c k o f s e l f - c o n f i d e n c e . I n terms o f h i s own e x p e r i e n c e , B e e r s found t h a t a "broad-minded" employer made procurement o f work l e s s d i f f i c u l t . S t e f a n (1966) d e s c r i b e s t h e o n s e t o f h i s i l l n e s s and t h e o c c u r r e n c e o f p a n i c a t t a c k s a t work. He d i s c u s s e s how he l o s e s h i s j o b as a r e s u l t o f t h e i l l n e s s and e x p l a i n s t h a t f o l l o w i n g a p e r i o d o f h o s p i t a l i z a t i o n he i s a b l e t o f i n d a p a r t t i m e j o b w i t h a modest s a l a r y . S t e f a n s u g g e s t s t h a t work p l a y s a s i g n i f i c a n t r o l e i n h i s a d j u s t m e n t t o community l i f e . He d e s c r i b e s h i s work w i t h s t u d e n t s and w r i t e s " t h e i r g r e a t e s t c o n t r i b u t i o n was g e t t i n g my mind o f f and away from m y s e l f , and t h a t , I t h i n k , i s what a s c h i z o p h r e n i c needs above a l l e l s e " (p. 221) . An i n t e r e s t i n g a c c o u n t o f t h e e x p e r i e n c e o f l i v i n g w i t h s c h i z o p h r e n i a i s p r o v i d e d by C a r o l N o r t h M.D. (1987). She d e s c r i b e s how, v e r y e a r l y i n l i f e , she became i l l . D e s p i t e h e r i l l n e s s , she i s a c c e p t e d i n t o a m e d i c a l program, and d e s p i t e e x p e r i e n c i n g h a l l u c i n a t i o n s and t h o u g h t d i s t u r b a n c e , she i s a b l e t o complete s e v e r a l terms o f t h e program. Her work e x p e r i e n c e as an e x t e r n i s d e s c r i b e d b r i e f l y . As a r e s u l t o f s i d e e f f e c t s o f h a l d o l , she e x p e r i e n c e s r e s t l e s s n e s s and f a i n t i n g d u r i n g t h a t j o b . The a u t h o r d e s c i b e s how h e r m e d i c a l s t u d i e s a r e i n t e r r u p t e d by a p e r i o d o f h o s p i t a l i z a t i o n . F o l l o w i n g t r e a t m e n t , she l e a r n s t h a t t h e m e d i c a l s c h o o l has b a r r e d h e r from r e a d m i s s i o n . H i g h l y m o t i v a t e d t o complete h e r m e d i c a l t r a i n i n g , N o r t h f i n d s a m e d i c a l s c h o o l w i l l i n g t o a c c e p t h e r as a s t u d e n t . The s t o r y c o n c l u d e s w i t h a b r i e f g l i m p s e i n t o h e r work as a p s y c h i a t r i c i n t e r n . P r o f e s s i o n a l s ' A c c o u n t s P r o f e s s i o n a l s who have w r i t t e n about t h e e x p e r i e n c e s o f i n d i v i d u a l s w i t h m e n t a l i l l n e s s i n c l u d e e x i s t e n t i a l t h e r a p i s t s , s o c i a l s c i e n t i s t s and p s y c h i a t r i s t s . F o r e x i s t e n t i a l t h e r a p i s t s such as L a i n g (1960), t h e f o c u s o f s t u d y i s t h e e x p e r i e n c e o f l i v i n g w i t h p s y c h o s i s and work e x p e r i e n c e s a r e n o t a major a r e a o f c o n c e r n . A l t h o u g h many s o c i a l s c i e n t i s t s ( C a u d i l l , 1958; Goffman, 1961; L e v i n s o n & G a l l a g h e r , 1964; P e r r u c c i , 1974). d e s c r i b e t h e e x p e r i e n c e o f l i v i n g i n m e n t a l i n s t i t u t i o n s , t h e y p r o v i d e a v e r y l i m i t e d d i s c u s s i o n o f t h e work e x p e r i e n c e s i n t h e s e i n s t i t u t i o n s . F o r example, Goffman (1961), i n d e s c r i b i n g t h e "ways o f making o u t i n a m e n t a l h o s p i t a l " , d i s c u s s e s how work a s s i g n m e n t s b e n e f i t p a t i e n t s i n s e c o n d a r y ways. P a t i e n t s w o r k i n g i n t h e k i t c h e n were i n t h e p o s i t i o n t o g e t e x t r a f o o d and p a t i e n t s w o r k i n g i n t h e l a u n d r y were a b l e t o o b t a i n a more f r e q u e n t s u p p l y o f c l e a n c l o t h e s . However, Goffman (1961) does n o t d e s c r i b e t h e p a t i e n t s ' e x p e r i e n c e s i n w o r k i n g i n t h e s e j o b s . L e v i n s o n ' s and G a l l a g h e r ' s (1964) s t u d y d e s c r i b e s t h e m e n t a l h o s p i t a l l i f e as i t i s e x p e r i e n c e d , u n d e r s t o o d , and r e sponded t o by i n d i v i d u a l p a t i e n t s i n a p u b l i c m e n t a l h o s p i t a l i n M a s s a c h u s e t t s i n 1957. The a u t h o r s were o n l y m i n i m a l l y i n t e r e s t e d i n t h e work e x p e r i e n c e s as e v i d e n c e d by t h e f a c t t h a t o n l y two o f t h e i t e m s on a 116 i t e m r o l e -c o n c e p t i o n i n v e n t o r y d e s c r i b e t h e i n d i v i d u a l • s p e r s p e c t i v e o f t h e u n p a i d work t h a t p a t i e n t s were e x p e c t e d t o do around t h e h o s p i t a l . The work e x p e r i e n c e i s d i s c u s s e d i n terms o f how i t a f f e c t s i n d i v i d u a l s ' p e r c e p t i o n s o f p a t i e n t h o o d . The a u t h o r s f i n d t h a t work p r o v i d e d an element o f n ormalcy i n an o t h e r w i s e u n u s u a l d a i l y r o u t i n e . P e r r u c c i ' s (1974) main o b j e c t i v e i s t o d e s c r i b e t h e s o c i a l s t r u c t u r e o f a m e n t a l h o s p i t a l and t h e r e a r e o n l y i n c i d e n t a l r e f e r e n c e s t o t h e p a t i e n t s ' work a s s i g n m e n t s i n t h e d e s c r i p t i o n o f a t y p i c a l day on a h o s p i t a l ward. There i s no r e f e r e n c e t o t h e p a t i e n t s ' p e r s p e c t i v e s o f t h e work a s s i g n m e n t s . The s t u d i e s j u s t p r e s e n t e d d e s c r i b e i n d i v i d u a l s ' e x p e r i e n c e s i n h o s p i t a l . There i s a p a u c i t y o f l i t e r a t u r e d i s c u s s i n g t h e community l i v i n g e x p e r i e n c e s o f i n d i v i d u a l s w i t h m e n t a l d i s o r d e r s . One o f t h e f i r s t books d e s c r i b i n g t h e community work e x p e r i e n c e s o f i n d v i d u a l s w i t h m e n t a l d i s o r d e r s was w r i t t e n by Simmons (1965). I n h i s book Work  and M e n t a l I l l n e s s . Simmons p r e s e n t s e i g h t c a s e s t u d i e s t o i l l u s t r a t e t h e ways i n w h i c h o c c u p a t i o n a l c a r e e r s o f s i n g l e and m a r r i e d men had w i t h s t o o d o r succumbed t o t h e i r m e n t a l i l l n e s s and h o s p i t a l i z a t i o n . Each man was i n t e r v i e w e d a t t h e end o f h i s h o s p i t a l s t a y and d u r i n g t h e p o s t h o s p i t a l p e r i o d . I n p r e s e n t i n g t h e d a t a , Simmons d i s c u s s e s s e v e r a l a s p e c t s o f t h e p a r t i c i p a n t s work e x p e r i e n c e s , i n c l u d i n g j o b s e e k i n g , j o b m o b i l i t y , j o b s a t i s f a c t i o n , j o b s k i l l s , commitment t o work and so on. The a u t h o r s i n t e n t i o n was t o d e s c r i b e t h e r e l a t i o n s h i p o f m e n t a l i l l n e s s and work, r a t h e r t h a n t h e r e l a t i o n s h i p o f s c h i z o p h r e n i a and work. One p a r t i c i p a n t i s d e s c r i b e d as s u f f e r i n g a s c h i z o p h r e n i c r e a c t i o n , b u t t h e d i a g n o s i s o f t h e o t h e r p a r t i c i p a n t s i s n o t c l e a r . W h i l e t h e book does n o t s p e c i f i c a l l y i l l u s t r a t e work e x p e r i e n c e s o f i n d i v i d u a l s w i t h s c h i z o p h r e n i a , t h e book i s n o t e w o r t h y , as i t p r o v i d e s a more d e t a i l e d d i s c u s s i o n o f work e x p e r i e n c e s t h a n do most o t h e r books. As n o t e d , Simmon's book d e s c i b e s t h e e x p e r i e n c e s o f men. A n o t h e r book d e s c r i b e s t h e e x p e r i e n c e s o f women w i t h m e n t a l i l l n e s s (Warren, 1987). The i n t e r v i e w s , on w h i c h Warren's s t u d y i s based, were conducted between 1957 and 19 61, and a g a i n i n 1972 by a team o f r e s e a r c h e r s a s s o c i a t e d w i t h t h e U n i v e r s i t y o f C a l i f o r n i a . The purpose o f Warren's i n t e r p r e t i v e s t u d y i s t o p r o v i d e an u n d e r s t a n d i n g o f t h e s o c i a l and h i s t o r i c a l p r o c e s s t h r o u g h w h i c h c e r t a i n w i v e s i n t h e 1950's became "madwives". A s m a l l p a r t o f Warren's d i s c u s s i o n d e a l s w i t h t h e work e x p e r i e n c e s o f t h e women. The women's work e x p e r i e n c e s a r e d e s c r i b e d as b e i n g t y p i c a l o f t h e women o f t h e f i f t i e s i n t h a t t h e y a l l gave up w o r k i n g e i t h e r as soon as t h e y g o t m a r r i e d o r when t h e y had t h e i r f i r s t c h i l d . A l s o t y p i c a l o f t h e f i f t i e s was t h e husbands' v i e w t h a t t h e y were t h e s o l e p r o v i d e r . The men b e l i e v e d t h a t w i v e s who worked s y m b o l i z e d t h e husband's inadequacy and r o l e f a i l u r e . Many o f t h e women f a c e d d i s a p p r o v a l , r e l u c t a n t a p p r o v a l o r am b i v a l e n c e c o n c e r n i n g t h e i r d e s i r e t o work. Warren n o t e s t h a t t h e i d e a o f work r e p r e s e n t e d a f a n a t s i z e d way o u t o f f i n a n c i a l and e m o t i o n a l t r o u b l e s f o r many o f t h e women. The women, who were a l l o w e d t o g a i n employment, found t h a t t h e i r work was i n t e r r r u p t e d by h o s p i t a l i z a t i o n . A g r e a t e r p o r t i o n o f t h e work r e l a t e d d i s c u s s i o n c e n t e r s on t h e work as h o u s e w i f e and mother. I n terms o f t h i s work, Warren e x p l a i n s t h a t a f t e r a p e r i o d o f h o s p i t a l i z a t i o n , t h e women f e l t s t a n g e and a l i e n i n t h e i r r o l e s . A n o t h e r p o i n t t h e a u t h o r makes i s t h a t t h e performance o f housework and c h i l d c a r e assumed i m p o r t a n c e i n assessment o f t h e womens' m e n t a l s t a t e . A n o t h e r c o n t i b u t i o n , d e s c r i b i n g t h e community e x p e r i e n c e s o f p e o p l e w i t h m e n t a l i l l n e s s , i s made by E s t r o f f (1981) i n h e r book, Making; i t C r a z y . However, w h i l e she d e s c r i b e s v a r i o u s s o c i a l a s p e c t s o f l i f e f o r a group o f i n d i v i d u a l s w i t h m e n t a l d i s o r d e r s , h e r comments about t h e i r work e x p e r i e n c e s a r e v e r y b r i e f . I n s u m m arizing t h e r e f e r e n c e t o work i n t h e e x p e r i e n t i a l l i t e r a t u r e , s e v e r a l p o i n t s can be made. The f i r s t p e r s o n a c c o u n t s p r o v i d e t h e b e s t i n s i g h t i n t o some o f t h e e f f e c t s o f t h e i l l n e s s on work. However, because t h e a u t h o r s ' do n o t i n t e n d t o s p e c i f i c a l l y d e s c r i b e work, i t t e n d s t o be mentioned b r i e f l y a t b e s t . Most p r o f e s s i o n a l s , w r i t i n g about t h e e x p e r i e n c e s o f p e o p l e w i t h s c h i z o p h r e n i a , d i s c u s s h o s p i t a l e x p e r i e n c e s and r e f e r o n l y m i n i m a l l y t o work. P r o f e s s i o n a l s who w r i t e about work do n o t f o c u s s p e c i f i c a l l y on i n d i v i d u a l s w i t h s c h i z o p h r e n i a , and p r o f e s s i o n a l s who w r i t e about i n d i v i d u a l s w i t h s c h i z o p h r e n i a do n o t f o c u s s p e c i f i c a l l y on work. Thus, t h e r e i s l i t t l e i n t h e e x p e r i e n t i a l l i t e r a t u r e t h a t d e s c r i b e s t h e work e x p e r i e n c e s o f i n d i v i d u a l s w i t h s c h i z o p h r e n i a . A l t h o u g h h e a l t h p r o f e s s i o n a l s emphasize t h e need f o r s t u d i e s i n w h i c h i n d i v i d u a l s w i t h m e n t a l d i s o r d e r s a r e i n t e r v i e w e d d i r e c t l y c o n c e r n i n g t h e i r e x p e r i e n c e s (Boker & B r e n n e r , 1987; M c C r a n i e & M i z e l l , 1978; S t r u p p & H a d l e y , 1977), i t i s c l e a r from t h e l i t e r a t u r e t h a t h e a l t h p r o f e s s i o n a l s have n e g l e c t e d t h i s t y p e o f s t u d y i n so f a r as i t r e l a t e s t o t h e q u e s t i o n o f work. P a t i e n t s p r o v i d e most o f t h e l i t e r a t u r e c o n c e r n i n g t h e i l l n e s s e x p e r i e n c e and w i t h i n t h i s t h e r e i s m i n i m a l r e f e r e n c e t o work e x p e r i e n c e . Summary T h i s c h a p t e r has r e v i e w e d t h e l i t e r a t u r e c o n t r i b u t i n g t o knowledge and u n d e r s t a n d i n g o f t h e work e x p e r i e n c e s o f i n d i v i d u a l s w i t h s c h i z o p h r e n i a . I n summarizing t h e l i t e r a t u r e r e v i e w , t h e f o l l o w i n g c o n c l u s i o n s can be made about t h e c u r r e n t body o f knowledge: t h e r e i s s t r o n g e v i d e n c e o f t h e i m p o r t a n c e o f work t o t h e m e n t a l h e a l t h o f i n d i v i d u a l s w i t h s c h i z o p h r e n i a ; many i n d i v i d u a l s w i t h s c h i z o p h r e n i a have d i f f i c u l t y i n m a i n t a i n i n g a j o b ; most work r e l a t e d r e s e a r c h f o c u s e s on a r e a s o t h e r t h a n i n d i v i d u a l s ' p e r s p e c t i v e s ; and no a u t h o r s o r r e s e a r c h e r s d e c r i b e t h e e x p e r i e n c e o f o b t a i n i n g and r e t a i n i n g work from t h e p e r s p e c t i v e o f i n d i v i d u a l s w i t h s c h i z o p h r e n a . W h i l e i t i s c l e a r t h a t work p l a y s a i n s t r u m e n t a l r o l e i n m a i n t a i n i n g t h e m e n t a l h e a l t h o f i n d i v i d u a l s w i t h s c h i z o p h r e n i a , l i t t l e e f f o r t has been made t o u n d e r s t a n d t h e i n d i v i d u a l ' s own p e r s p e c t i v e o f what i t i s l i k e l o o k i n g f o r and k e e p i n g a j o b when d i a g n o s e d w i t h t h i s i l l n e s s . S t u d y i n g t h e e x p e r i e n c e o f t h e i n d i v i d u a l from h i s / h e r own p e r s p e c t i v e can c o n t r i b u t e t o o p t i m i z i n g p r o f e s s i o n a l c a r e f o r t h i s group o f p e o p l e . 48 Chapter 3 Method I n t r o d u c t i o n Phenomenology was t h e r e s e a r c h method used f o r t h i s s t u d y . T h i s method was chosen f o r a n s w e r i n g t h e r e s e a r c h q u e s t i o n because o f i t s u n i q u e f o c u s on d e s c r i b i n g e x p e r i e n c e as i t i s l i v e d by p e o p l e . The f o l l o w i n g c h a p t e r d e s c r i b e s t h e i m p l e m e n t a t i o n o f t h e p h e n o m e n o l o g i c a l approach i n c l u d i n g p a r t i c i p a n t s e l e c t i o n , d a t a c o l l e c t i o n and a n a l y s i s , and e t h i c a l c o n s i d e r a t i o n s . As a r e s e a r c h method, phenomenology i s no l e s s r i g o r o u s t h a n o t h e r r e s e a r c h methods, however t h e p r o c e d u r e s used by t h e r e s e a r c h e r a r e d i f f e r e n t t h a n t h o s e commonly used (Dzurec & Abraham, 1986) t h e r e f o r e an e x p l a n a t i o n o f some o f t h e d i f f e r e n c e s i s p r o v i d e d as t h e s e a r e a s a r e d i s c u s s e d . S e l e c t i o n o f P a r t i c i p a n t s I n q u a l i t a t i v e r e s e a r c h , many o f t h e p r i n c i p l e s o f s a m p l i n g used i n q u a n t i t a t i v e r e s e a r c h do n o t a p p l y ; f o r example random s a m p l i n g would p r o v e i n e f f e c t i v e . I n t h e p h e n o m e n o l o g i c a l method, s u b j e c t s a r e s e l e c t e d on t h e b a s i s o f t h e i r e x p e r i e n c e w i t h t h e phenomena b e i n g s t u d i e d ; t h a t i s , s u b j e c t s a r e chosen who a r e * e x p e r t s ' i n t h e a r e a under i n v e s t i g a t i o n and who w i l l f a c i l i t a t e t h e r e s e a r c h e r ' s u n d e r s t a n d i n g o f t h e phenomena (Anderson, 1985). T h i s p r o c e s s by w h i c h p a r t i c i p a n t s a r e s e l e c t e d by v i r t u e o f t h e i r a b i l i t y t o a r t i c u l a t e t h e answer t o t h e r e s e a r c h q u e s t i o n i s 49 r e f e r r e d t o as " t h e o r e t i c a l s a m p l i n g " ( S p r a d l e y , 1979). T h e o r e t i c a l o r p u r p o s i v e s a m p l i n g p e r m i t s s e l e c t i o n o f i n f o r m a n t s who w i l l most f a c i l i t a t e t h e development o f t h e emerging c o n c e p t s . T h i s s a m p l i n g approach was chosen because a d e s c r i p t i o n o f t h e e x p e r i e n c e o f o b t a i n i n g and r e t a i n i n g work was b e s t a c h i e v e d t h r o u g h p e o p l e who c o u l d e x p r e s s i t v e r b a l l y i n a way t h a t was u n d e r s t a n d a b l e . S u b j e c t s chosen t h r o u g h t h i s t y p e o f s a m p l i n g d e s i g n have s p e c i f i c c h a r a c t e r i s t i c s o r knowledge w h i c h w i l l add t o , s u p p o r t , o r , i n n e g a t i v e c a s e s , r e f u t e t h e t h e o r y , t h u s e n h a n c i n g t h e r e s a r c h e r ' s u n d e r s t a n d i n g ( F i e l d & Morse, 1985). A n o t h e r d i f f e r e n c e i n t h e s a m p l i n g d e s i g n used f o r a q u a l i t a t i v e as opposed t o a q u a n t i t a t i v e method i s t h a t t h e number o f p a r t i c i p a n t s i s s m a l l . "Sample s i z e s i n q u a l i t a t i v e r e s e a r c h a r e t y p i c a l l y s m a l l because o f t h e l a r g e volume of v e r b a l d a t a t h a t must be a n a l y z e d and because q u a l i t a t i v e r e s e a r c h t e n d s t o emphasize i n t e n s i v e and p r o l o n g e d c o n t a c t s w i t h s u b j e c t s " ( S a n d e l o w s k i , 1986, p.31). A n o t h e r f e a t u r e o f t h e s a m p l i n g p r o c e s s used i n phenomenology i s t h a t t h e sample s i z e i s n o t d e c i d e d i n advance bu t i s d e t e r m i n e d by t h e r e s e a r c h needs (Morse, 1986) . P a r t i c i p a n t s a r e i n i t i a l l y c hosen because o f t h e i r a b i l i t y t o p r o v i d e knowledge and u n d e r s t a n d i n g o f t h e e x p e r i e n c e b e i n g s t u d i e d . A d d i t i o n a l s u b j e c t s a r e s e l e c t e d u n t i l no new i n f o r m a t i o n was b e i n g p r o v i d e d ( S a n d e l o w s k i , 1986). As s u g g e s t e d by Morse (198 6 ) , adequacy o f s a m p l i n g i s e v a l u a t e d by t h e q u a l i t y and c o m p l e t e n e s s o f i n f o r m a t i o n r a t h e r t h a n by t h e number o f s u b j e c t s . F o r t h i s s t u d y , p u r p o s i v e s a m p l i n g was used. The sample s i z e was n o t d e t e r m i n e d i n advance but was based on c o m p l e t e n e s s o f d a t a and u l t i m a t e l y t h e sample s i z e was s m a l l i n c o m p a r i s o n t o t h e sample s i z e o f most q u a n t i t a t i v e s t u d i e s . I m p l e m e n t a t i o n o f t h e s a m p l i n g d e s i g n j u s t d e s c r i b e d began w i t h t h e development o f s p e c i f i c c r i t e r i a f o r s e l e c t i o n . T h i s a i d e d t h e p u r p o s i v e s e l e c t i o n o f s u b j e c t s as i t c i r c u m s c r i b e d t h e p o p u l a t i o n b o r d e r s . C r i t e r i a f o r S e l e c t i o n The f o l l o w i n g seven c r i t e r i a p r o v i d e d t h e g u i d e l i n e s f o r s e l e c t i o n o f s t u d y p a r t i c i p a n t s . The p a r t i c i p a n t s had t o have been d i a g n o s e d w i t h s c h i z o p h r e n i a f o r a t l e a s t one y e a r . T h i s was an i m p o r t a n t c r i t e r i a as p a r t i c i p a n t s were r e q u i r e d who c o u l d speak t o t h e t o p i c . T h e r e f o r e , t h e r e must have been a s u f f i c i e n t t i m e p e r i o d f o r t h e p a r t i c i p a n t s t o have e x p e r i e n c e d what i t i s l i k e t o t r y t o o b t a i n and/or r e t a i n work when one has been d i a g n o s e d w i t h s c h i z o p h r e n i a . P a r t i c i p a n t s had t o be between t h e ages o f n i n e t e e n and s i x t y - f i v e . As t h e s t u d i e d c o n c e r n e d a d u l t s who had r e c e n t l y been t r y i n g t o o b t a i n work o r had been w o r k i n g , r e t i r e d i n d i v i d u a l s were n o t i n c l u d e d . The t h i r d c r i t e r i a was t h a t p a r t i c i p a n t s had t o acknowledge t h e d i a g n o s i s o f s c h i z o p h r e n i a . The p a r t i c i p a n t s 51 had t o p r o v i d e t h e p e r s p e c t i v e o f i n d i v i d u a l s w i t h s c h i z o p h r e n i a , t h e r e f o r e i t was i m p o r t a n t t h a t t h e y had been i n f o r m e d o f t h e d i a g n o s i s and d i d n o t deny t h e d i a g n o s i s . A n o t h e r c r i t e r i a was t h a t t h e p a r t i c i p a n t s had t o be p h y s i c a l l y a c c e s s i b l e t o t h e r e s e a r c h e r . F o r t h i s r e a s o n a l l p a r t i c i p a n t s had t o l i v e i n t h e G r e a t e r Vancouver R e g i o n a l D i s t r i c t . S i n c e t h e r e s e a r c h e r , who speaks o n l y E n g l i s h , w ould be c o n d u c t i n g a l l t h e i n t e r v i e w s and a n a l y z i n g a l l t h e d a t a , i t was e s s e n t i a l t h a t t h e p a r t i c i p a n t s speak E n g l i s h . I n d i v i d u a l s w i t h s c h i z o p h r e n i a may e x p e r i e n c e d e l u s i o n s o r o t h e r p s y c h o t i c symptoms t h a t i n t e r f e r e w i t h t h e a b i l i t y t o communicate r a t i o n a l l y and c o h e r e n t l y . P a r t i c i p a n t s had t o be a b l e t o p r o v i d e r a t i o n a l and c o h e r e n t r e s p o n s e s . T h e r e f o r e an i m p o r t a n t c r i t e r i a was t h a t p a r t i c i p a n t s d i d h o t have symptoms t h a t i n t e r f e r e d w i t h t h e a b i l i t y t o g i v e an a r t i c u l a t e d e s c r i p t i o n o f t h e e x p e r i e n c e . The f i n a l c r i t e r i a was t h a t p a r t i c i p a n t s had t o have had r e c e n t , s u c c e s s f u l o r u n s u c c e s s f u l e x p e r i e n c e i n o b t a i n i n g and/or r e t a i n i n g work i n s e t t i n g s o t h e r t h a n s h e l t e r e d workshops. I n o t h e r words, i n d i v i d u a l s who had never a t t e m p t e d t o o b t a i n o r r e t a i n work were e x c l u d e d . I was i n t e r e s t e d i n work e x p e r i e n c e s i n w h i c h t h e i n d i v i d u a l had t o compete w i t h t h e g e n e r a l p o p u l a t i o n t h e r e f o r e a t l e a s t some o f t h e i n d i v i d u a l ' s work e x p e r i e n c e had t o have been i n s e t t i n g s o t h e r t h a n s h e l t e r e d workshops. 52 S u b j e c t R e c r u i t m e n t P a r t i c i p a n t s were n o t known p r e v i o u s l y t o t h e r e s e a r c h e r . I n i t i a l l y , s u b j e c t r e c r u i t m e n t o c c u r r e d t h r o u g h t h e a s s i s t a n c e o f t h e group, F r i e n d s o f S c h i z o p h r e n i c s (F.O.S.). A f t e r o b t a i n i n g a p p r o v a l from t h e r e g i o n a l o f f i c e o f F.O.S., t h e r e s e a r c h e r c o n t a c t e d t h e p r e s i d e n t s o f v a r i o u s F.O.S. c h a p t e r s i n t h e Vancouver a r e a , p r o v i d e d i n f o r m a t i o n about t h e s t u d y and r e q u e s t e d p e r m i s s i o n t o a t t e n d t h e v a r i o u s c h a p t e r m e e tings f o r t h e purpose o f d i s c u s s i n g t h e s t u d y . A l l c h a p t e r p r e s i d e n t s gave p e r m i s s i o n and t h e r e s e a r c h e r a t t e n d e d t h e m e e t i n g s , gave an e x p l a n a t i o n o f t h e s t u d y and e n l i s t e d t h e members' a s s i s t a n c e i n i d e n t i f y i n g s u i t a b l e c a n d i d a t e s . Members were a s k e d t o i d e n t i f y i n d i v i d u a l s who met t h e c r i t e r i a , ask t h e s e i n d i v i d u a l s i f t h e y would be i n t e r e s t e d i n p a r t i c i p a t i n g i n t h e s t u d y and g i v e i n t e r e s t e d i n d i v i d u a l s a l e t t e r o f i n t r o d u c t i o n (AppendixA) and a c o n s e n t f o r t e l e p h o n e c o n t a c t form (Appendix B ) . As a consequence o f t h i s p r o c e d u r e , two i n d i v i d u a l s r e t u r n e d t h e form and two o t h e r s t e l e p h o n e d t h e r e s e a r c h e r d i r e c t l y . No o t h e r c a n d i d a t e s c o n t a c t e d t h e r e s e a r c h e r f o l l o w i n g t h i s r e c r u i t m e n t t h r o u g h F.O.S.. There a r e s e v e r a l p o s s i b l e r e a s o n s f o r t h e poor r e s p o n s e . From t a l k i n g w i t h p e o p l e a t t h e F.O.S. m e e t i n g s , i t was a p p a r e n t t h a t many o f t h e i r f a m i l y members who had s c h i z o p h r e n i a were c u r r e n t l y r e c e i v i n g t r e a t m e n t and/or were unemployed. W h i l e t h o s e i n 53 a t t e n d a n c e a t F.O.S. were v e r y e n t h u s i a s t i c about t h e s t u d y , t h e y i n d i c a t e d t h a t t h e i r f a m i l y members may be t o o i l l o r t o o embarassed t o p a r t i c i p a t e . T h i s l a t t e r p o i n t was v a l i d a t e d by some o f t h e p a r t i c i p a n t s i n t h e s t u d y . They mentioned t h a t t h e y knew o t h e r p e o p l e who met t h e c r i t e r i a f o r s e l e c t i o n , b u t t h e s e p e o p l e were embarassed about b e i n g unemployed and d e c l i n e d t o p a r t i c i p a t e . I n a d d i t i o n , s e v e r a l p a r t i c i p a n t s s a i d t h a t , as a consequence o f h a v i n g s c h i z o p h r e n i a , t h e y found i t v e r y d i f f i c u l t t o meet new p e o p l e . Some p o t e n t i a l c a n d i d a t e s may have found i t t o o s t r e s s f u l t o p a r t i c i p a t e . A n o t h e r r e a s o n f o r t h e poor r e s p o n s e was s u g g e s t e d i n t h e comments o f a woman whose d a u g h t e r was i n t e r e s t e d i n p a r t i c i p a t i n g . T h i s mother e x p r e s s e d c o n c e r n t h a t p a r t i c i p a t i o n i n t h e s t u d y may be t o o u p s e t t i n g f o r h e r d a u g h t e r . When t h e r e s e a r c h e r mentioned t h e d i f f i c u l t y i n r e c r u i t i n g s u b j e c t s t o a n o t h e r p a r t i c i p a n t , an i n t e r e s t i n g r e s p o n s e ensued. I w ouldn't have been a b l e t o do i t t h e n [when younger and more i l l ] s i m p l y because I would have had t o been g e t t i n g something out o f i t , because I was so needy. I t h i n k i f you were ' o f f e r i n g everyone who d i d t h i s f i f t y bucks o r something you'd g e t a l o t o f p e o p l e w i l l i n g t o do i t . But f o r me t h e reward i s t h a t perhaps I've e d u c a t e d you i n some way and y o u ' l l go on and e d u c a t e o t h e r n u r s e s , so t h a t ' s reward f o r me. Whereas when yo u ' r e s t i l l c o n f u s e d and y o u ' r e s t i l l t r y i n g t o f i n d y o u r p l a c e and y o u ' r e not r e a l l y c o n f i d e n t o r s e c u r e i n who you a r e , i t s h a r d t o g i v e , and i t s l i k e you have t o be g e t t i n g something from i t o r i t s l i k e "why do i t ? " Because o f t h e i n a d e q u a t e r e s p o n s e from t h i s r e c r u i t m e n t a p p r o a c h , I d e c i d e d t o c o n t a c t o t h e r community o r g a n i z a t i o n s i n o r d e r t o e n l i s t f u r t h e r p a r t i c i p a n t s . S t a f f p e r s o n s a t t h e f o l l o w i n g o r g a n i z a t i o n s were c o n t a c t e d : C o a s t F o u n d a t i o n , P i o n e e r House, K e t t l e F r i e n d s h i p S o c i e t y , New View S o c i e t y and M e n t a l P a t i e n t s A s s o c i a t i o n . As w e l l , one p s y c h i a t r i s t i n p r i v a t e p r a c t i c e was c o n t a c t e d . The s t a f f p e o p l e and t h e p h y s i c i a n were g i v e n i n f o r m a t i o n about t h e s t u d y . They were asked t o i d e n t i f y i n d i v i d u a l s who met t h e c r i t e r i a and g i v e them t h e l e t t e r o f i n t r o d u c t i o n and t h e c o n s e n t f o r t e l e p h o n e c o n t a c t form. F o l l o w i n g t h e s e e f f o r t s , t h r e e more c a n d i d a t e s c o n t a c t e d t h e r e s e a r c h e r — o n e v i a t e l e p h o n e and two v i a t h e c o n s e n t form. As each one o f t h e seven c a n d i d a t e s c o n t a c t e d t h e r e s e a r c h e r , t h e y were g i v e n f u r t h e r i n f o r m a t i o n about t h e p u r p o s e s and b e n e f i t s o f t h e s t u d y and about t h e ways t h e i r r i g h t s would be p r o t e c t e d . A l s o a t t h i s t i m e , t h e r e s e a r c h e r v a l i d a t e d t h a t t h e i n d i v i d u a l s d i d meet t h e s e l e c t i o n c r i t e r i a . A l l p e r s o n s c o n t a c t e d met t h e s t u d y c r i t e r i a and a l l a g r e e d t o p a r t i c i p a t e i n t h e s t u d y . F o l l o w i n g a s e r i e s o f i n t e r v i e w s w i t h t h e seven p a r t i c i p a n t s , t h r e e more p a r t i c i p a n t s were r e c r u i t e d . A f r i e n d o f one o f t h e s u b j e c t s i n d i c a t e d i n t e r e s t i n t h e s t u d y . As he met t h e c r i t e r i a f o r p a r t i c i p a t i o n and was vi e w e d as b e i n g a v a l u a b l e c o n t r i b u t o r , he became a c a n d i d a t e f o r p a r t i c i p a t i o n . He was viewed as a v a l u a b l e c o n t r i b u t o r because he was m a r r i e d and t h e r e f o r e c o u l d p r o v i d e a p e r s p e c t i v e d i f f e r e n t from t h a t o f t h e o t h e r p a r t i c i p a n t s who were a l l u n m a r r i e d . The r e s e a r c h e r p r o v i d e d t h e c a n d i d a t e w i t h i n f o r m a t i o n about t h e s t u d y and t h e ways h i s r i g h t s would be p r o t e c t e d , and answered h i s q u e s t i o n s about t h e s t u d y . He agr e e d t o be i n t e r v i e w e d and became t h e e i g h t h p a r t i c i p a n t . I n a d d i t i o n , two o t h e r p a r t i c i p a n t s were r e c r u i t e d . Only two women had been i n t e r v i e w e d up t o t h a t p o i n t and t h e r e s e a r c h e r wanted t o ensure t h a t t h e female p e r s p e c t i v e was a d e q u a t e l y r e p r e s e n t e d . The r e s e a r c h e r asked t h e female p a r t i c i p a n t s and a s t a f f member a t one o f t h e community o r g a n i z a t i o n s t o i d e n t i f y women who might be i n t e r e s t e d i n p a r t i c i p a t i n g i n t h e s t u d y . As a r e s u l t , two more femal e c a n d i d a t e s c o n t a c t e d t h e r e s e a r c h e r . The c a n d i d a t e s were g i v e n t h e same i n f o r m a t i o n about t h e pur p o s e s and b e n e f i t s o f t h e s t u d y and about t h e ways t h e i r r i g h t s would be p r o t e c t e d . The c a n d i d a t e s met t h e s e l e c t i o n c r i t e r i a and agr e e d t o p a r t i c i p a t e . T h i s b r o u g h t t h e t o t a l number o f p a r t i c i p a n t s t o t e n . By t h e t i m e I completed t h e i n t e r v i e w s w i t h t h e s e t e n p a r t i c i p a n t s , no new i n f o r m a t i o n was b e i n g g i v e n and t h e r e f o r e no f u r t h e r s u b j e c t s were r e c r u i t e d . C h a r a c t e r i s t i c s o f P a r t i c i p a n t s The f o l l o w i n g d i s c u s s i o n p r o v i d e s a d e s c r i p t i o n o f t h e c h a r a c t e r i s t i c s o f t h e p a r t i c i p a n t s . "The q u a l i t a t i v e r e s e a r c h e r must c l e a r l y d e l i n e a t e t h e c h a r a c t e r i s t i c s o f t h e p a r t i c i p a n t s and t h e i r p l a c e i n t h e s o c i a l s e t t i n g . I n f o r m a t i o n may change o v e r time...Knowing t h e c i r c u m s t a n c e s and t h e i n f o r m a n t h e l p s t o ac c o u n t f o r d i s a g r e e m e n t s i n d i f f e r e n t a c c o u n t s o f t h e same c u l t u r e " ( F i e l d & Morse, 1985, p. 9 4 ) . A i n d i c a t e d , a t o t a l o f t e n i n d i v i d u a l s , s i x men and f o u r women p a r t i c i p a t e d i n t h e s t u d y . P a r t i c i p a n t s r anged i n age from 24 t o 43 w i t h an average age o f 33. A l l were E n g l i s h s p e a k i n g and a l l b u t one were b o r n i n Canada. The i n d i v i d u a l n o t b o r n i n Canada was a r e c e n t immigrant from B r i t a i n . The m a j o r i t y , e i g h t , were s i n g l e and ne v e r m a r r i e d . One male p a r t i c i p a n t was d i v o r c e d and a n o t h e r male p a r t i c i p a n t was m a r r i e d . Academic achievement ranged from grade e i g h t t o a u n i v e r s i t y degree. F i v e p a r t i c i p a n t s had co m p l e t e d h i g h s c h o o l and had gone on t o t a k e v a r i o u s c o u r s e s b u t had n o t c o m p l e t e d any p a r t i c u l a r program. One p e r s o n had r e c e n t l y r e c e i v e d a c o l l e g e d i p l o m a and t h r e e p e o p l e had, s e v e r a l y e a r s p r e v i o u s l y , o b t a i n e d u n i v e r s i t y d e g r e e s . I n terms o f employment, f o u r o f t h e men were w o r k i n g i n t h e g e n e r a l w o r k f o r c e , one was unemployed and one was w o r k i n g a c o u p l e h o u r s a day a t a s h e l t e r e d workshop. Of t h e f o u r women, two were w o r k i n g i n p a i d p a r t - t i m e employment, a t h i r d was engaged i n v o l u n t e e r work and a f o u r t h was unemployed a t t h e t i m e . A l l o f t h e unemployed i n d i v i d u a l s , as w e l l as t h e p e r s o n i n v o l v e d w i t h t h e s h e l t e r e d workshop, had p r e v i o u s l y worked i n t h e g e n e r a l w o r k f o r c e , w i t h t h e most r e c e n t j o b o c c u r r i n g from s e v e r a l months t o s e v e r a l y e a r s p r e v i o u s l y . C u r r e n t o c c u p a t i o n s o f t h e employed i n d i v i d u a l s i n c l u d e d o f f i c e w o r k e r , v o c a t i o n a l c o u n s e l l o r , s a l e s c l e r k , s e r v i c e c l e r k , c a r p e n t e r , and c o n t r a c t e s t i m a t o r . N e i t h e r o f t h e p e o p l e w i t h u n i v e r s i t y degrees n or t h e i n d i v i d u a l w i t h t h e d i p l o m a were engaged i n work r e l a t e d t o t h e i r c o u r s e o f s t u d y . The number o f y e a r s s i n c e d i a g n o s i s r anged from one t o twenty-two y e a r s ; however p a r t i c i p a n t s o f t e n mentioned t h a t symptoms had begun s e v e r a l y e a r s p r i o r t o d i a g n o s i s . The o n s e t o f symptoms ranged from two t o t e n y e a r s p r i o r t o t h e t i m e o f a c t u a l d i a g n o s i s . T h i s i n f o r m a t i o n was t a k e n i n t o c o n s i d e r a t i o n d u r i n g t h e i n t e r v i e w as a l l p a r t i c i p a n t s r e l a t e d t h e i r work e x p e r i e n c e s from t h e t i m e o f i l l n e s s o n s e t r a t h e r t h a n from t i m e o f a c t u a l d i a g n o s i s . A l l b u t one o f t h e p a r t i c i p a n t s were p r e s c r i b e d a n t i p s y c h o t i c m e d i c a t i o n and many s e l f - r e g u l a t e d t h e dosage. S i x o f t h e p a r t i c i p a n t s l i v e d a l o n e , and t h e accommodations i n c l u d e d a hou s e k e e p i n g room, a r e n t a l a p artment, and a b o a t . One p a r t i c i p a n t l i v e d i n a group home. Two i n d i v i d u a l s s h a r e d a house w i t h f r i e n d s and t h e m a r r i e d p a r t i c i p a n t l i v e d i n an apartment w i t h h i s w i f e . F i v e p e o p l e had s u p p o r t e d h o u s i n g ; t h a t i s , t h e y p a i d one t h i r d o f t h e i r income f o r r e n t . 58 T h i s group o f p a r t i c i p a n t s may be d e s c r i b e d as w e l l e d u c a t e d and h i g h l y m o t i v a t e d . Most o f t h e p a r t i c i p a n t s had been i l l f o r s e v e r a l y e a r s b u t had e n t e r e d a p e r i o d i n w h i c h t h e y f e l t "more i n c o n t r o l " , " b e t t e r t h a n I've been i n y e a r s " , and " f e e l i n g p r e t t y good about t h i n g s " . Thus t h e sample r e p r e s e n t s a sub-group o f o l d e r , h e a l t h i e r and more m o t i v a t e d i n d i v i d u a l s w i t h s c h i z o p h r e n i a . Data C o l l e c t i o n and A n a l y s i s Data c o l l e c t i o n and d a t a a n l a y s i s f o r t h e p h e n o m e n o l o g i c a l method d i f f e r from approaches used i n q u a n t i t a t i v e i n v e s t i g a t i o n . One d i f f e r e n c e i s t h a t t h e method i s n o t a l i n e a r p r o c e s s , r a t h e r d a t a c o l l e c t i o n and d a t a a n l a y s i s p r o c e e d s i m u l t a n e o u s l y w i t h each i n f l u e n c i n g t h e o t h e r . A n o t h e r d i f f e r e n c e l i e s i n t h e s t r a t e g i e s used f o r d a t a c o l l e c t i o n . I n phenomenology, s e v e r a l s t r a t e g i e s can be used f o r d a t a c o l l e c t i o n : a s k i n g s u b j e c t s t o w r i t e down t h e i r e x p e r i e n c e s , o b s e r v i n g s u b j e c t s d u r i n g t h e e x p e r i e n c e , o r c o n d u c t i n g l e n g h t y i n t e r v i e w s i n w h i c h s u b j e c t s a r e encouraged t o d e s c r i b e t h e i r e x p e r i e n c e from t h e i r own p e r s p e c t i v e . T h i s v e r b a l d a t a s h o u l d be c o l l e c t e d i n a r e l a x e d atmosphere and s u f f i c i e n t t i m e s h o u l d be p r o v i d e d t o f a c i l i t a t e a complete d e s c r i p t i o n by t h e s u b j e c t (Burns & Grove, 1987). The d a t a g a t h e r e d u s i n g t h i s method a r e n o t l i m i t e d t o o b s e r v a b l e f a c t s b u t i n c l u d e a l l a v a i l a b l e 59 phenomena such as t h e s u b j e c t i v e meanings t h a t t h e e x p e r i e n c e had f o r t h e p a r t i c i p a n t (Omery, 1983). The r e s e a r c h e r i n v e s t i g a t e s s u b j e c t s ' c o n s c i o u s n e s s o f t h e w o r l d by b r a c k e t i n g ( s u s p e n d i n g what i s known about an e x p e r i e n c e ) , i n t u i t i n g ( v i e w i n g t h e e x p e r i e n c e from an u n r e s t r i c t e d p e r s p e c t i v e and becoming absorbed i n i t ) , a n a l y z i n g ( i d e n t i f y i n g r e c u r r i n g elements i n t h e e x p e r e i n c e i n r e t o s p e c t ) , and d e s c r i b i n g ( c o n v e y i n g what has been f o u n d ) . As a p a r t i c i p a n t o b s e r v e r , t h e r e s e a r c h e r d e t e r m i n e s answers t o q u e s t i o n s about t h e r e s e a r c h phenomenon by e s t a b l i s h i n g r a p p o r t w i t h s u b j e c t s and i n t e r a c t i n g u n o b t r u s i v e l y w i t h them. Q u e s t i o n s p l a n n e d i n i t i a l l y i n t h e s t u d y may change as t h e r e s e a r c h e r f i n d s t h a t t h e y do n o t a d d r e s s t h e r e a l i t y d e s c r i b e d by s u b j e c t s (Dzurec & Abraham 1986, p . 5 8 ) . I n t h i s s t u d y , d a t a c o l l e c t i o n began w i t h a s e r i e s o f i n t e r v i e w s w i t h t h e f i r s t seven p a r t i c i p a n t s . D u r i n g t h e f i r s t i n t e r v i e w s , p a r t i c i p a n t s were asked t o s i g n a w r i t t e n c o n s e n t (Appendix C ) . Once w r i t t e n c o n s e n t was o b t a i n e d , a u d i o - t a p i n g o f t h e i n t e r v i e w began. A b r i e f demographic d a t a s h e e t was c o mpleted a t t h e b e g i n n i n g o f t h e i n t e r v i e w and a d d i t i o n a l demographic d a t a was o b t a i n e d d u r i n g t h e c o u r s e o f t h e i n t e v i e w . A t t h e f i r s t i n t e r v i e w , b r o a d q u e s t i o n s t h a t d e f i n e t h e domain a r e asked ( F i e l d & Morse, 1985). Data r e l a t e d t o t h e r e s e a r c h q u e s t i o n were e l i c i t e d t h r o u g h a s e t o f b r o a d t r i g g e r q u e s t i o n s (Appendix E) t h a t p r o v i d e d a g e n e r a l s t r u c t u r e f o r t h e i n i t i a l i n t e r v i e w s . The i n t e r v i e w s were n o t s t a n d a r d i z e d ; r a t h e r t h e more s p e c i f i c q u e s t i o n s on t h e i n t e r v i e w g u i d e were used t o f a c i l i t a t e e x p l o r a t i o n o f c o n t e n t n o t o t h e r w i s e d e s c r i b e d by t h e i n f o r m a n t s . W i t h some p a r t i c i p a n t s , a b r o a d o p e n i n g q u e s t i o n was s u f f i c i e n t t o e l i c i t a l e n g t h y d e s c r i p t i o n o f t h e e x p e r i e n c e . W i t h o t h e r i n d i v i d u a l s , more t r i g g e r q u e s t i o n s were used t o i n i t i a t e d e s c r i p t i o n o f c e r t a i n c o n t e n t a r e a s . A l l p a r t i c i p a n t s appeared t o be c o m f o r t a b l e w i t h t h e f a c t t h a t t h e y were b e i n g t a p e - r e c o r d e d . A t no t i m e d i d any p a r t i c i p a n t r e q u e s t t h a t i t be t u r n e d o f f o r t h a t i n f o r m a t i o n be d e l e t e d . On one o c c a s i o n , when t h e i n t e r v i e w had ended, t h e i n f o r m a n t remembered a d d i t i o n a l i n f o r m a t i o n t h a t she wanted t o r e l a y and t h e t a p e - r e c o r d i n g was r e s t a r t e d . On s e v e r a l o c c a s i o n s , p a r t i c i p a n t s made p e r t i n e n t comments as t h e i n t e r v i e w e r was l e a v i n g . These comments, as w e l l as t h e r e s e a r c h e r ' s t h o u g h t s and i m p r e s s i o n s , were r e c o r d e d i n f i e l d n o t e s t h a t were w r i t t t e n f o l l o w i n g each i n t e r v i e w . The t a p e -r e c o r d e d i n t e r v i e w s were t h e n t r a n s c r i b e d v e r b a t i m . These t r a n s c r i p t s and t h e f i e l d n o t e s formed t h e d a t a base f o r t h i s t s t u d y . \ Congruent w i t h t h e p h e n o m e n o l o g i c a l approach, d a t a a n a l y s i s and d a t a c o l l e c t i o n p r oceeded s i m u l t a n e o u s l y . I n o t h e r words a s , each one o f t h e s e i n t e r v i e w t o o k p l a c e , a b e g i n n i n g a n a l y s i s was done. As t h e i n t e r v i e w s p r o g r e s s s e d , t h e r e s e a r c h e r was engaged i n b o t h d a t a c o l l e c t i o n and d a t a a n a l y i s . The a n a l y t i c p r o c e s s had an impact on d a t a c o l l e c t i o n as i t g u i d e d t h e f o c u s o f e x p l o r a t i o n . The t r a n s c r i p t s were s u b j e c t e d t o a n a l y i s u s i n g a method d e v e l o p e d by C o l a i z z i (1978). A l l o f t h e p a r t i c i p a n t s ' d e s c r i p t i o n s were r e a d i n o r d e r t o make sense o f them. S i g n i f i c a n t p h r a s e s o r s e n t e n c e s t h a t d i r e c t l y p e r t a i n e d t o t h e i n v e s t i g a t e d phenomenon were e x t r a c t e d . The meaning o f each s i g n i f i c a n t s t a t e m e n t was f o r m u l a t e d and o r g a n i z e d i n t o c l u s t e r s o f themes. These c l u s t e r s o f themes were r e f e r e d back t o t h e o r i g i n a l d e s c r i p t i o n s i n o r d e r t o v a l i d a t e them and t o n o t e any d i s c r e p a n c i e s among t h e v a r i o u s c l u s t e r s . The r e s u l t s were i n t e g r a t e d i n t o an e x h a u s t i v e d e s c r i p t i o n o f t h e i n v e s t i g a t e d t o p i c . The f i n a l s t e p i n C o l a z z i ' s method i s t o r e t u r n t o each p a r t i c i p a n t and v a l i d a t e t h e f i n d i n g s . A l l seven o f t h e p a r t i c i p a n t s were a v a i l a b l e f o r t h i s second round o f i n t e r v i e w s . D u r i n g t h e second round o f i n t e r v i e w s , t h e r e s e a r c h e r v a l i d a t e d t h e f i n d i n g s , c l a r i f i e d i n f o r m a t i o n , and a s k ed f u r t h e r q u e s t i o n s as n e c e s s a r y . 62 F o l l o w i n g t h i s s e r i e s o f i n t e r v i e w s , t h e t h r e e a d d i t i o n a l p a r t i c i p a n t s were r e c r u i t e d . F o r each o f t h e s e p a r t i c i p a n t s , one i n t e r v i e w was completed. I n i t i a l l y , t h e i n t e r v i e w t o o k t h e same form a t as t h e f i r s t i n t e r v i e w c o n d u c t e d w i t h each o f t h e o t h e r p a r t i c i p a n t s . I n o t h e r words, w r i t t e n c o n s e n t was o b t a i n e d p r i o r t o o n s e t o f t h e t a p e - r e c o r d i n g , t h e i n t e r v i e w q u e s t i o n s s e r v e d as a g e n e r a l g u i d e , and i n f o r m a n t s were p r o v i d e d t i m e t o d e s c r i b e t h e i r e x p e r i e n c e . A f t e r t h e p a r t i c i p a n t had t o l d h i s / h e r s t o r y , t h e r e s e a r c h e r d i s c u s s e d t h e f i n d i n g s o b t a i n e d from t h e i n i t i a l a n a l y s i s i n o r d e r t o v a l i d a t e t h e x f i t ' w i t h t h e i r e x p e r i e n c e . The t a p e d i n t e r v i e w s were t r a n s c r i b e d and a n a l y z e d i n t h e same manner as t h e p r e v i o u s i n t e r v i e w s . W h i l e no new i n f o r m a t i o n was o f f e r e d i n t h e p a r t i c i p a n t s ' s t o r i e s , t h e i r a c c o u n t s p r o v i d e d v a l i d a t i o n o f t h e a n a l y t i c a l r e s u l t s . Thus t h e s e t h r e e a d d i t i o n a l i n t e r v i e w s r e i n f o r c e d t h e r e s e a r c h e r ' s c o n f i d e n c e i n t h e comp l e t e n e s s o f t h e d a t a and t h e v a l i d i t y o f t h e f i n d i n g s . The complete p r o c e s s o f d a t a c o l l e c t i o n and a n a l y s i s t o o k p l a c e o v e r a f o u r month p e r i o d . I n any t y p e o f r e s e a r c h t h e i s s u e s o f o b j e c t i v i t y and s u b j e c t i v i t y , r e l i a b i l i t y and v a l i d i t y must be a d d r e s s e d . I n terms o f o b j e c t i v i t y , t h e purpose o f q u a l i t a t i v e r e s e a r c h i s n o t t o d e t e r m i n e o b j e c t i v e l y what happened b u t r a t h e r t o o b j e c t i v e l y r e p o r t t h e p a r t i c i p a n t s p e r c e p t i o n s ( F i e l d & Morse, 1985). F o r t h i s r e a s o n e x t e n s i v e measures were t a k e n t o v a l i d a t e w i t h p a r t i c i p a n t s t h a t t h e s t u d y ' s r e p o r t a c c u r a t e l y d e s c r i b e s t h e i r p e r c e p t i o n s . D u r i n g t h e r e v i e w o f t h e a n a l y s i s w i t h p a r t i c i p a n t s , t h e y commented, " t h a t c o v e r s e v e r y t h i n g " , " y a, t h a t sounds l i k e i t " , " I don't have a n y t h i n g e l s e t o add", "you p r e t t y w e l l summed i t up i n your summary t h e r e . " and so on. S u b j e c t i v i t y i n q u a l i t a t i v e r e s e a r c h "may be d e r i v e d from f i r s t l y t h e r e s e a r c h e r - a s - a n - i n s t r u m e n t , o r s e c o n d l y , f r om t h e q u a l i t y o f t h e e v i d e n c e o r t h e s u b j e c t i v e n a t u r e o f t h e r e s e a r c h t o p i c " ( F i e l d & Morse 1985, p.115). That i s , i n q u a l i t a t i v e r e s e a r c h t h e amount and q u a l i t y o f d a t a i s dependant on t h e a b i l i t y o f t h e r e s e a r c h e r t o e s t a b l i s h r a p p o r t and g a i n t h e t r u s t o f t h e i n f o r m a n t s ( F i e l d & Morse 1985). F o r t h i s r e a s o n , e f f o r t s were made t o d e v e l o p a r e l a x e d atmosphere and t o e s t a b l i s h r a p p o r t w i t h p a r t i c i p a n t s d u r i n g t h e i n i t a l phase o f t h e i n t e r v i e w . R a p p o r t was d e v e l o p e d w i t h p a r t i c i p a n t s as e v i d e n c e d by t h e i r w i l l i n g n e s s t o s h a r e t h o u g h t s and f e e l i n g s and by comments such as " i t s good t o have someone t o t a l k t o " and " I wouldn't be a b l e t o t a l k t o many p e o p l e about t h i s . " P a r t i c i p a n t s s p o n t a n e o u s l y s a i d t h a t t h e r e s e a r c h e r c o u l d r e t u r n f o r a d d i t i o n a l v i s i t s 64 o r t e l e p h o n e as n e c e s s a r y . S e v e r a l p e o p l e i n d i c a t e d t h a t t h e y f e l t good about b e i n g a b l e t o h e l p . R e l i a b i l i t y can be a f f e c t e d by t h e s a m p l i n g p r o c e d u r e s , t h e s o c i a l c o n t e x t and t h e c o n d i t i o n s under w h i c h d a t a a r e g a t h e r e d ( F i e l d & Morse, 1985). Sampling p r o c e d u r e s have a l r e a d y been a d d r e s s e d . The c o n d i t i o n s under w h i c h d a t a were g a t h e r e d i n c l u d e t h e f o l l o w i n g . I n t e r v i e w s r a n g e d from one hour t o t h r e e h o u r s and were co n d u c t e d , w i t h one e x c e p t i o n , a t t h e p a r t i c i p a n t s ' homes. One s e t o f i n t e r v i e w s t o o k p l a c e i n a room a t a l o c a l h o s p i t a l as i t was m u t u a l l y c o n v e n i e n t f o r t h e p a r t i c i p a n t and r e s e a r c h e r . A l l i n t e r v i e w s were c o n d u c t e d i n p r i v a t e . W i t h t h e e x c e p t i o n o f one o c c a s i o n , t h e r e was ample t i m e f o r t h e i n t e r v i e w so p a r t i c i p a n t s were n o t h u r r i e d and were a b l e t o t a l k as l o n g as t h e y wanted. The one e x c e p t i o n was t h a t a p a r t i c i p a n t had t o l e a v e an i n t e r v i e w a f t e r an hour i n o r d e r t o a t t e n d t o some p e r s o n a l b u s i n e s s . However, on t h e second i n t e r v i e w w i t h t h i s p a r t i c i p a n t , t h e r e were no t i m e c o n s t r a i n t s . V a l i d i t y i s t h e o v e r a l l c o n c e p t r e f e r i n g t o how good an answer a s t u d y y i e l d s , t h a t i s , does t h e answer p r o v i d e d by t h e r e s e a r c h r e p r e s e n t r e a l i t y ? Throughout t h e p r e s e n t a t i o n o f c h a p t e r f o u r , t h e f i n d i n g s a r e i l l u s t r a t e d w i t h v e r b a t i m e x c e r p t s from t h e p a r t i c i p a n t s ' a c c o u n t s . "The onus i s a l w a y s on t h e r e s e a r h c e r t o show how i n t e r p r e t a t i o n s o f t h e d a t a a r e a r r i v e d a t . I t i s f o r t h i s r e a s o n t h a t v e r b a t i m a c c o u n t s a r e used from p a r t i c i p a n t s i n a s t u d y t o s u b s t a n t i a t e t h e c l a i m s t h a t t h e r e s e a r c h e r makes about t h e d a t a " (Anderson & E l f e r t 1989, p.737). The a c c o u n t s p r o v i d e a v i v i d i l l u s t r a t i o n o f t h e r e s e a r c h e r ' s d e s c r i p t i o n o f t h e p a r t i c i p a n t s e x p e r i e n c e and e n a b l e s t h e r e a d e r t o a u d i t t h e " f i t " o f t h e d e s c r i p t i o n w i t h t h e o r i g i n a l d a t a from w h i c h i t was d e r i v e d ( S a n d e l o w s k i , 1986). E t h i c s and Human R i g h t s P r i o r a p p r o v a l f o r t h i s s t u d y was o b t a i n e d from t h e U n i v e r s i t y o f B r i t i s h Columbia's S c r e e n i n g Committee f o r R e s e a r c h I n v o l v i n g Human S u b j e c t s . The r i g h t s o f t h e p a r t i c i p a n t s were p r o t e c t e d i n t h e f o l l o w i n g ways: 1) A d e s c r i p t i o n o f t h e s t u d y and an e x p l a n a t i o n o f t h e r e s e a r c h e r ' s e x p e c t a t i o n s were g i v e n t o p a r t i c i p a n t s p r i o r t o o b t a i n i n g c o n s e n t (see Appendix A ) . 2) W r i t t e n c o n s e n t was o b t a i n e d from a l l p a r t i c i p a n t s p r i o r t o i n t e r v i e w i n g (see Appendix C ) . 3) P a r t i c i p a n t s were i n f o r m e d t h a t n o n - p a r t i c i p a t i o n i n t h e s t u d y would i n no way j e o p a r d i z e f u r t h e r community o r h o s p i t a l c a r e . 4) P r i o r t o each i n t e r v i e w , p a r t i c i p a n t s were reminded o f t h e i r r i g h t n o t t o p a r t i c i p a t e , and were i n f o r m e d t h a t t h e y c o u l d w i t h d r a w from t h e s t u d y a t any t i m e . 66 5) P a r t i c i p a n t s were i n f o r m e d t h a t t h e t a p e d i n t e r v i e w m a t e r i a l would be k e p t anonymous and c o n f i d e n t i a l , and t h a t t a p e s would be e r a s e d upon c o m p l e t i o n o f t h e s t u d y . 6) P a r t i c i p a n t s were i n f o r m e d t h a t t r a n s c r i p t s and w r i t t e n m a t e r i a l would n o t i n c l u d e any names o r i d e n t i f y i n g f a c t o r s . 7) P a r t i c i p a n t s were i n f o r m e d t h a t t h e r e a r e no e x p e c t e d r i s k s i n v o l v e d i n p a r t i c i p a t i o n i n t h e s t u d y . Summary T h i s c h a p t e r has d e s c r i b e d t h e method f o r t h i s s t u d y . The p h e n o m e n o l o g i c a l method p r o v i d e d d i r e c t i o n f o r d a t a c o l l e c t i o n and a n a l y s i s . P a r t i c i p a n t s were s e l e c t e d by v i r t u e o f t h e i r a b i l i t y t o d e s c r i b e t h e e x p e r i e n c e o f l o o k i n g f o r a j o b and w o r k i n g when one has s c h i z o p h r e n i a . Ten s u b j e c t s p a r t i c i p a t e d i n a t o t a l o f s e v e n t e e n i n t e r v i e w s o v e r a f o u r month p e r i o d . The d a t a base was c o m p r i s e d o f t r a n s c r i b e d a u d i o t a p e s and f i e l d n o t e s w r i t t e n f o l l o w i n g each i n t e r v i e w . Data a n a l y s i s o c c u r r e d c o n c u r r e n t l y w i t h d a t a c o l l e c t i o n and f o l l o w e d t h e f o r m a t d e v e l o p e d by C o l a z z i . The a n a l y t i c p r o c e s s had an impact on d a t a c o l l e c t i o n as i t g u i d e d t h e f o c u s o f e x p l o r a t i o n . The r e s u l t o f t h i s p r o c e s s i s t h e d e s c r i p t i o n o f t h e e x p e r i e n c e and t h e meaning o f t h e 67 e x p e r i e n c e o f o b t a i n i n g and r e t a i n i n g work from t h e p e r s p e c t i v e o f i n d i v i d u a l s w i t h s c h i z o p h r e n i a ; t h e a c c o u n t s o f w h i c h a r e p r e s e n t e d i n C h a p t e r 4. 68 Chapter 4 The I n d i v i d u a l s ' A c c o u n t s I n t r o d u c t i o n The a c c o u n t s o f t h e p a r t i c i p a n t s i n t h i s s t u d y make up t h e d e s c r i p t i o n o f t h e e x p e r i e n c e o f o b t a i n i n g and r e t a i n i n g work t h a t w i l l be p r e s e n t e d i n t h i s c h a p t e r . Each p a r t i c i p a n t d e s c r i b e d a s t o r y i n w h i c h t h e r e were some i n d i v i d u a l d i f f e r e n c e s . F o r example, t h e age o f i l l n e s s s o n s e t , t h e t y p e and s e v e r i t y o f symptoms, and t h e t y p e o f employment i n w h i c h p a r t i c i p a n t s were i n v o l v e d were d i f f e r e n t f o r each i n d i v i d u a l . However, c e r t a i n c o m m o n a l i t i e s e x i s t e d . I n t h i s d e s c r i p t i o n t h e s e c o m m o n a l i t i e s c o n s t i t u t e t h e e x p e r i e n c e and meaning o f l o o k i n g f o r a j o b and w o r k i n g from t h e p e r s p e c t i v e o f t h e p a r t i c i p a n t s . Throughout t h e i n t e r v i e w s , t h r e e major a r e a s were a d d r e s s e d by t h e p a r t i c i p a n t s . The p a r t i c i p a n t s d i d n o t l i m i t t h e m s e l v e s t o d e s c r i p t i o n s o f t h e work e x p e r i e n c e s , b u t spe n t a p a r t o f t h e t i m e d i s c u s s i n g t h e i l l n e s s ; t h a t i s , t h e y e x p l a i n e d what i t meant t o be i l l and t o be d i a g n o s e d w i t h s c h i z o p h r e n i a . A major c o n c e r n o f p a r t i c i p a n t s was t h e p u b l i c ' s l a c k o f knowledge and t h e m i s u n d e r s t a n d i n g r e l a t e d t o s c h i z o p h r e n i a . I t was s i g n i f i c a n t t o them t h a t " s c h i z o p h r e n i a " , n o t j u s t t h e work- r e l a t e d e x p e r i e n c e s o f someone w i t h t h e i l l n e s s , was u n d e r s t o o d . Thus t h e p a r t i c i p a n t s s p e n t t i m e d e s c r i b i n g what i t was l i k e t o l i v e w i t h s c h i z o p h r e n i a . F o r t h i s r e a s o n and because i t h e l p s t o e l u c i d a t e t h e impact o f s c h i z o p h r e n i a on w o r k - r e l a t e d e x p e r i e n c e s , t h e a c c o u n t s d e s c r i b i n g what i t i s l i k e t o have s c h i z o p h r e n i a w i l l p r e c e e d t h e d e s c r i p t i o n o f w o r k - r e l a t e d e x p e r i e n c e s . The w o r k - r e l a t e d e x p e r i e n c e s c o m p r i s e d t h e second l a r g e a r e a o f d a t a . The p a r t i c i p a n t s spoke o f t h e impact o f s c h i z o p h r e n i a on t h r e e g e n e r a l a r e a s : l o o k i n g f o r work, w o r k i n g day t o day work, and w o r k i n g t h r o u g h o u t t h e c o u r s e o f i l l n e s s . The l a t t e r r e f e r e d t o t h e impact o f s c h i z o p h r e n i a on t h e l o n g - t e r m p a t t e r n o f employment. When t a l k i n g about t h e s e e x p e r i e n c e s , p a r t i c i p a n t s d e s c r i b e d t h e i r e m o t i o n a l r e s p o n s e s t o t h e e x p e r i e n c e s and d i s c u s s e d t h e meaning t h a t work h o l d s f o r them. The t h i r d a r e a o f d a t a i n c l u d e d t h e e x p e r i e n c e s t h a t i n d i v i d u a l s had i n c o p i n g w i t h t h e i l l n e s s and w i t h work. That i s , t h e y d e s c r i b e d t h e v a r i o u s ways t h a t t h e y managed t o make work and s c h i z o p h r e n i a c o m p a t i b l e , i n c l u d i n g t h e ways and means by w h i c h i n d i v i d u a l s managed t o cope w i t h t h e i m p a c t o f t h e i l l n e s s on work. W h i l e each p a r t i c i p a n t had h i s / h e r own i n d i v i d u a l i z e d s t r a t e g i e s , t h e s t r a t e g i e s t h e y a r t i c u l a t e d can be grouped i n t o t h e f o l l o w i n g g e n e r a l c a t e g o r i e s : c o n t r o l l i n g i n f l u e n t i a l f a c t o r s , d e v e l o p i n g a p o s i t i v e a t t i t u d e , u s i n g s u p p o r t systems and s e l e c t i n g w o r k i n g c o n d i t i o n s . 70 The A c c o u n t s The I l l n e s s E x p e r i e n c e  B e i n g 111 The a c c o u n t s r e v e a l e d t h a t p a r t i c i p a n t s a p p r a i s e d t h e i l l n e s s i n terms o f i t s g e n e r a l meaning f o r t h e i r l i v e s . P a r t i c i p a n t s d e s c r i b e d v a r i o u s changes e x p e r i e n c e d w i t h t h e o n s e t o f t h e i l l n e s s . As i f t o r e i n f o r c e t h e r e s e a r c h e r ' s u n d e r s t a n d i n g t h a t changes had o c c u r r e d i n t h e i n d i v i d u a l ' s l i f e , p a r t i c i p a n t s r e f l e c t e d on what t h e i r l i f e was l i k e b e f o r e t h e y g o t s c h i z o p h r e n i a . I was always s u r e o f m y s e l f b e f o r e t h i s . Then I found t h a t I was becoming r e a l l y meek and l i k e w i t h d r a w n and r e a l l y s c a r e d o f p e o p l e . I've never been l i k e t h a t . I've always been r e a l l y o u t g o i n g . I a l w a y s , e v e r y day, I t h i n k back t o i n s t a n c e s , examples o f when I was g i v i n g and r e a l l y s o c i a l l y s k i l l e d . E v e ryday l o t s o f examples come i n t o my head. L i k e g o i n g t o dances, t a l k i n g w i t h my f r i e n d s f o r h o u r s , f e e l i n g good about m y s e l f — w h i c h i s l o n g gone now. But e v e r y day I t h i n k , why c a n ' t I be l i k e t h a t a g a i n ? Why d i d i t happen and e v e r y t h i n g ? Because a t one t i m e I was r e a l l y happy and g i v i n g and s o c i a l l y s k i l l e d . P r i o r t o d e v e l o p i n g s c h i z o p h r e n i a , I s u p p o s e d l y had what you would c a l l a normal e x p e r i e n c e o f r e a l i t y . L o o k i n g back a t what you'd c a l l n o r m a l , i t was r u n n i n g a company. Then I was, how would you p u t i t ? I was more c o n f i d e n t i s t h e t e r m I would u s e — more c o n f i d e n t i n m y s e l f , my p r e s e n c e , what I was d o i n g . F o r many o f t h e p a r t i c i p a n t s , t h e changes seem t o come about s u d d e n l y and u n e x p e c t e d l y . I t ' s l i k e somebody p u l l s a c a r p e t out from under you and t h e r e a l i t y o r t h e e x i s t e n c e t h a t you'd b u i l t y o u r w o r l d on s u d d e n l y g e t s s t r e t c h e d t o complete d i f f e r e n t p o l a r r e g i o n s . . . You end up s i t t i n g on t h e f l o o r s t a r t i n g a l l o v e r a g a i n , o r a t l e a s t l e a r n i n g how t o c o n t r o l t h e way you t h i n k . 71 You j u s t wake up one day as a t e e n a g e r and you r e a l i z e "oh oh" t h i n g s a r e n ' t r i g h t , and you have t h i s e x t r a burden t o c a r r y . I f e e l t h a t when t h e s e t h i n g s came i n my mind, t h a t I wondered, whats happening t o me? How come I g o t dead emotions? How come a l l o f a sudden I g e t t w i s t e d i d e a s , you know. One i n d i v i d u a l i n d i c a t e d t h a t t h e o n s e t t o o k a more s l o w and i n s i d i o u s c o u r s e . You don't r e a l l y say, I'm s i c k , I c a n ' t h a n d l e t h i s . You don't know what's happening t o you. I t sneaks up on you so s l o w l y . You become p s y c h o t i c so s l o w l y . You d on't r e a l i z e t h e r e ' s any o t h e r way t o l o o k a t t h e w o r l d . R e g a r d l e s s o f whether t h e o n s e t was sudden o r s l o w , t h e i l l n e s s e x p e r i e n c e i n v o l v e d many changes. Some p a r t i c i p a n t s e x p e r i e n c e d changes i n r e l a t i o n t o t h e i r s e n s o r y p e r c e p t i o n s . Your s e n s e s a r e t e l l i n g you a l l k i n d s o f w e i r d t h i n g s . . . From a normal p e r s o n , from what I remember, i s t h a t you have one s e t o f p e r c e p t i o n s . I n s c h i z o p h r e n i a t h e o r i g i n a l s e t g e t b r o k e n so t o speak and you d i s c o v e r t h a t t h e r e a r e d i f f e r e n t ways o f p e r c i e v i n g t h i n g s . I t p r o d u c e s a tremendous amount o f g r e y a r e a s . S e v e r a l p a r t i c i p a n t s had changes i n a u d i t o r y p e r c e p t i o n s and e x p e r i e n c e d a u d i t o r y h a l l u c i n a t i o n s . W i t h s c h i z o p h r e n i a you h a l l u c i n a t e , you h e a r t h i n g s and y o u r s e n s e s a r e t e l l i n g you t h i n g s t h a t a r e n ' t r e a l . Of c o u r s e I would h e a r t h i n g s a l l t h e t i m e . I would have a u d i t o r y i l l u s i o n s . I found t h a t I t h o u g h t everybody was s p e a k i n g about me. They were a u d i t o r y a l l t h e t i m e . Some p a r t i c i p a n t s d i s c o v e r e d changes i n t h e i r s e n s i t i v i t y t o sound, as one p a r t i c i p a n t e x p l a i n e d : I ' l l be s i t t i n g h e r e and I h e a r a c a r r e v up r e a l l y l o u d o u t s i d e and I'm l i k e , I'm t o o a l e r t t o i t . I t ' s l i k e h a v i n g a l l y o u r s i x senses coming a l i v e a t once. You h e a r a c r a c k a t t h e door and you t u r n t o i t . 72 As w e l l , many p a r t i c i p a n t s e x p e r i e n c e d changes i n v i s u a l p e r c e p t i o n s , as t h e f o l l o w i n g s t a t e m e n t e x e m p l i f i e s . L i k e my v i s i o n , my p e r c e p t i o n , l i k e I d i d n ' t have normal p e r c e p t i o n . I d i d n ' t have t h r e e d i m e n s i o n a l p e r c e p t i o n . I r e a l l y n o t i c e d — l i k e t h i s g r o c e r y s t o r e where I'd a l w a y s go, i t always used t o be f l a t and t h e n [ a f t e r m e d i c a t i o n ] I saw c o r n e r s . The b r i c k s s t o o d o u t . So I ' d wake up and t a k e my p i l l and i t was j u s t as i f you'd f o c u s e d a t e l e v i s i o n o r something. See when I was i l l I was a l w a y s f i g h t i n g t o g e t t h a t , b u t I was g e t t i n g worse and worse. Most p a r t i c i p a n t s a l s o e x p e r i e n c e d changes i n t h e i r u s u a l p a t t e r n s o f r e l a t i n g t o o t h e r s . , Some i n d i v i d u a l s became wi t h d r a w n , w h i l e o t h e r s found t h a t t h e y became d e f e n s i v e . O t h e r s e x p l a i n e d t h a t t h e y would become h y p e r a c t i v e around p e o p l e . When you do s u f f e r from s c h i z o p h r e n i a , t o meet someone new i s a n i g h t m a r e i n many ways. Because you've l o s t a l l y o u r t o o l s f o r s e n s i n g a n o t h e r human b e i n g - as f a r as v i s u a l and a u d i o . What you see, what you h e a r i s n ' t r e l i a b l e so you c a n ' t t e l l i f t h a t p e r s o n s c a r r y i n g a gun o r n o t b a s i c a l l y . So you become e x t r e m e l y d e f e n s i v e . I've n e v e r been a b l e t o be c l o s e t o p e o p l e , and t o u c h p e o p l e and t h i s i s s o r t o f s c h i z o p h r e n i a t o o , s o r t o f p u t t i n g up a w a l l w i t h p e o p l e , p u t t i n g up a w a l l . A n o t h e r t h i n g i s t h a t r e l a t i n g t o p e o p l e i s v e r y d i f f i c u l t because when you s u f f e r from s c h i z o p h r e n i a , what p e o p l e say can be i n t e r p r e t e d many d i f f e r e n t ways and w i t h s c h i z o p h r e n i a you t e n d t o i n t e r p r e t t h i n g s i n a s e m i p a r a n o i d way, l i k e t h e y ' r e d i r e c t e d a t you. I h a t e d i n t e r a c t i o n w i t h o t h e r p e o p l e because I g o t p a r a n o i d and I g o t hyper. Other p e o p l e make me hyper when I'm around t h e m — s t a r t g e t t i n g a l l e x c i t e d and w e i r d . And t h e n t h e more e x c i t e d I ' d g e t , t h e more p a r a n o i d I g e t . I was v e r y withdrawn. L i k e p e o p l e seemed a l o n g ways o f f t o me, so t h a t ' s how I a c t e d towards them. L i k e i f y o u ' r e s i t t i n g r i g h t t h e r e , I ' d t r e a t you as i f you were s i t t i n g as f a r away as t h e k i t c h e n , so you c a n ' t r e l a t e l i k e t h a t . And I know when I f i r s t t o o k t h e m e d i c a t i o n 73 t h a t e f f e c t would seem t o d i s a p p e a r . P e o p l e would be a t t h e p r o p e r d i s t a n c e and s t u f f . I t ' s a l m o s t a p h y s i c a l t h i n g . They seemed so f a r away. Changes i n t h i n k i n g and b e h a v i n g were a l s o e x p e r i e n c e d and some o f t h e s e were v e r y d r a m a t i c . I mean t h e r e was a c e r t a i n t i m e I ' d come home h e r e when I was r e a l l y bad, t h a t I ' d a c t u a l l y make [my f a m i l y member] go and s t a y a t a h o t e l w i t h me because I was so p a r a n o i d . I imagined p e o p l e w a t c h i n g t h e apartment and t h i n g s happening. A t t h i s t i m e I c o u l d n ' t s l e e p a t n i g h t because I would h e a r v o i c e s o u t s i d e and I t h o u g h t p e o p l e were t r y i n g t o g e t i n . I went as f a r as I was t h i n k i n g o f g e t t i n g weaponry and t h i n g s l i k e t h a t because I was so f r i g h t e n e d . I never a c t u a l l y d i d . O t h e r s e x p e r i e n c e d l e s s d r a m a t i c b u t no l e s s d i s r u p t i v e changes i n t h i n k i n g and b e h a v i n g . A n o t h e r problem w i t h s c h i z o p h r e n i a i s you t e n d — m y c o n c e n t r a t i o n t e n d e d t o be s c a t t e r e d and I c o n s i d e r e d m y s e l f i m p r a c t i c a l . L i k e I c o u l d n ' t l o o k a f t e r t h e normal t h i n g s a p e r s o n does t o s u r v i v e , l i k e c o o k i n g and c l e a n i n g and s t u f f l i k e t h a t . Some p a r t i c i p a n t s a l s o d e s c r i b e d how b e i n g i l l a f f e c t e d t h e i r e motions and mood. One p e r s o n s a i d he found he s t a r t e d h a v i n g mood swings . I t h i n k I g e t more f a t i g u e d t h a n t h e average p e r s o n , p a r t l y because I'm s c h i z o p h r e n i c and a l o w e r e d mood makes you more t i r e d , when y o u ' r e i n a d e p r e s s e d mood. I'm alw a y s i n a s l i g h t l y d e p r e s s e d mood e x c e p t when I g e t h i g h . When I g e t hyper t h a t ' s h a r d t o o because e v e r y t h i n g speeds up s o r t o f and i t ' s h a r d t o be t h a t way. So i t ' s h a r d f i n d i n g t h e r i g h t b a l a n c e , l i k e mood b a l a n c e . S e v e r a l p e o p l e s a i d t h e y would more e a s i l y become angr y . I was s i t t i n g h e r e one n i g h t and I j u s t c o u l d n ' t h a n d l e i t . I t h o u g h t I was g o i n g t o do somebody some harm. I was r e a l l y f r i g h t e n e d because p e o p l e were o u t s i d e . . . I was b u i l d i n g up t h i s m a s s i v e a g g r e s s i o n t o go o u t s i d e 74 and s t o p t h i s once and f o r a l l . Then i t r e a l l y h i t me. You've go t o do something about t h i s . You're way out o f l i n e . I t ' s t e r r i b l e t o have an o u t b u r s t where you s t a r t s a y i n g u n b e l i e v a b l e t h i n g s and y e l l i n g a t p e o p l e and s a y i n g i n s u l t i n g t h i n g s . I would j u s t — p r o b a b l y an i n n o c e n t r e m a r k — m a y b e — b u t a n y t h i n g would make me blow up. So I s t a y e d away from t h e i r p l a c e because I c o u l d n ' t c o n t r o l my temper when I was t h e r e . . . I j u s t argued. I y e l l e d a l o t and had temper t a n t r u m s . The m a j o r i t y o f p a r t i c i p a n t s found t h a t h a v i n g s c h i z o p h r e n i a meant h a v i n g a d e c r e a s e d t o l e r a n c e f o r s t r e s s . When a l o t o f p e o p l e e x p e r i e n c e s t r e s s , t h e y g e n e r a l l y s o r t o f g e t i r r i t a b l e . W i t h s c h i z o p h r e n i a , y o u r senses go o u t o f whack. You s t a r t h a l l u c i n a t i n g , s t a r t h e a r i n g t h i n g s , and s t r e s s can a f f e c t you q u i t e d i f f e r e n t l y . S t r e s s seems t o be a v e r y i m p o r t a n t p a r t o f m e n t a l i l l n e s s — b r e a k i n g down so e a s i l y . I t h i n k i t ' s — l i k e s c h i z o p h r e n i a t o me comes on when yo u ' r e s t r e s s e d o u t , when yo u ' r e d e p r e s s e d . A n y t h i n g t h a t i s n ' t g o i n g t o o w e l l , w o r k i n g t o o w e l l , seems t o t r i g g e r i t . As a r e s u l t o f t h e changes i n t h i n k i n g , p e r c e i v i n g , b e h a v i n g and changes i n s t r e s s t o l e r a n c e , some p a r t i c i p a n t s e x p e r i e n c e d p e r i o d s o f d r a m a t i c change i n t h e i r a b i l i t y t o f u n c t i o n . One p a r t i c i p a n t f e l t as t h o u g h t he had been " j u s t a v e g e t a b l e f o r a few y e a r s " . Other p e o p l e made comments t h a t i l l u s t r a t e d t h e change i n t h e i r a b i l i t y t o f u n c t i o n . I c o u l d n ' t r e a l l y f u n c t i o n . I wasn't a b l e t o cook meals o r do t h i n g s t h a t I needed t o do, normal t h i n g s . I was w a n d e r i n g around t h e c i t y , j u s t t o t a l l y o u t o f i t , n o t r e a l l y t a k i n g c a r e o f m y s e l f . I was l i v i n g w i t h my p a r e n t s and I j u s t managed a t home and r e a l l y wasn't a b l e t o do a n y t h i n g a t t h e t i m e . Many o f t h e changes j u s t d e s c r i b e d had an a f f e c t on p a r t i c i p a n t ' s s e l f - c o n f i d e n c e and s e l f - e s t e e m . S e v e r a l p a r t i c i p a n t s e x p l a i n e d t h a t , e s p e c i a l l y d u r i n g t h e f i r s t few y e a r s o f b e i n g i l l , t h e y had l o s t c o n f i d e n c e i n t h e i r a b i l i t i e s . One p e r s o n ' s comment i n d i c a t e s t h i s sense o f d i m i n i s h e d c o n f i d e n c e . What happens o r what I found happened i s t h a t c o n f i d e n c e goes because a l l o f a sudden y o u r senses a r e h o t g i v i n g you t h e r i g h t i n f o r m a t i o n . You c a n ' t t r u s t y o u r b r a i n . Then you l o s e c o n f i d e n c e i n what y o u ' r e s a y i n g , t h e d e c i s i o n s y o u ' r e making. One p a r t i c i p a n t e x p l a i n e d t h a t he b e l i e v e d l o s s o f c o n f i d e n c e made p e o p l e w i t h s c h i z o p h r e n i a f e e l s e l f - c o n s c i o u s . They're v e r y c o ncerned about how t h e y appear, because t h e y know t h e y ' r e n o t q u i t e r i g h t , so t h e y ' r e always f e a r f u l t h e y ' l l do something. S e l f - c o n s c i o u s n e s s i s a p a r t o f i t . O t h e r p a r t i c i p a n t comments i l l u s t r a t e t h e l o s s o f s e l f -esteem. They s a i d , " a t t h a t t i m e I had r e a l l y low s e l f -c o n f i d e n c e and s e l f - e s t e e m " , " you s o r t o f f e e l l i k e you've become a l e s s e r p e r s o n " , and "my s e l f - e s t e e m was r e a l l y low." I n a d d i t i o n t o t h e above changes, most p a r t i c i p a n t s a l s o e x p e r i e n c e d change i n r e l a t i o n t o t h e need f o r s l e e p and r e s t . One p a r t i c i p a n t s a i d , " I c a n ' t go w i t h o u t a n i g h t ' s s l e e p . I j u s t go p s y c h o t i c . " A n o t h e r p a r t i c i p a n t commented, " I f I m i s s a few h o u r s s l e e p on e i t h e r end and t h e n t h e n e x t n i g h t I'm n o t g e t t i n g any s l e e p and t h e n I'm t o t a l l y p s y c h o t i c . " 76 A n o t h e r change t h a t p a r t i c i p a n t s e n c o u n t e r e d was t h a t t h e y had t o d e a l w i t h t h e u n p r e d i c t a b l e n a t u r e o f t h e i l l n e s s . I t comes and goes. You g e t b e t t e r t h a n you f a l l back. You g e t b e t t e r t h a n you f a l l back. There were many t i m e s I t h i n k I'm i n f i n e shape, t h e n a week l a t e r I had a c o l l a p s e . I've had many t i m e s I t h o u g h t I was on t h e r o a d t o r e c o v e r y and t h e n I was r i g h t back t o sq u a r e one a g a i n a f t e r t h a t , so i t must have happened I don't know how many t i m e s . F o r some p a r t i c i p a n t s t h e u n p r e d i c t a b i l i t y o f t h e i l l n e s s c a u s e d them t o f e e l a n x i o u s . As one p a r t i c i p a n t e x p l a i n e d , t h e u n p r e d i c t a b i l i t y o f t h e i l l n e s s was a w o r r y because she ne v e r knew how l o n g an e p i s o d e would l a s t . I have tremendous a n x i e t y towards i t because I t h i n k how l o n g w i l l t h i s [ e p i s o d e ] l a s t ? W i l l i t l a s t a month, a week o r a y e a r ? I n a d d i t i o n t o a l l t h e o t h e r changes, t h e m a j o r i t y o f p a r t i c i p a n t s ' e x p e r i e n c e d changes i n energy and psychomotor a c t i v i t y , due t o s i d e e f f e c t s o f m e d i c a t i o n . W i t h t h e wrong m e d i c a t i o n , i t ' s j u s t l i k e t h e d r o w s i e s . That i s , i f I t a k e t o o much m e d i c a t i o n , I'm n o t r e a l l y c o n s c i o u s u n t i l e l e v e n o ' c l o c k and y o u ' r e s i t t i n g t h e r e w i t h y o u r head down and t h e b r a i n i s n o t c a p a b l e o f — i t ' s l i k e you j u s t c a n ' t o p e r a t e l i k e t h a t . You c a n ' t j u s t t hrow i t i n t o h i g h speed. J u s t g e t t i n g up i n t h e morning a t 7 o ' c l o c k when you ' r e t a k i n g t h e d r u g s . U n b e l i e v a b l e . L i k e I was always groggy i n t h e m o r n i n g — d i d n ' t f e e l l i k e d o i n g much. [My t h e r a p y program] opened a t n i n e each morning. I used t o g e t a r i d e from a guy who l i v e d o u t h e r e , and i t was h a r d waking up t h e n t o o . I had t o wake up a t seven each day so once I g o t my m e d i c a t i o n r e d u c e d I found i t e a s i e r t o g e t i n t o i t e a r l i e r . The a n t i d e p r e s s a n t h o l d s me back a l i t t l e b i t . But t h e h a l d o l and t h e b e n z t r o p i n e h a v i n g t o be on t h a t f u l l t i m e , i t h o l d s me b a c k — h a l f a m i l e [ o f r u n n i n g ] and I've g o t t o s t o p t o c a t c h my b r e a t h . One p a r t i c i p a n t e x p l a i n e d t h a t she had t o t o l e r a t e t e r r i b l e s i d e e f f e c t s o f t h e m e d i c a t i o n . The s i d e e f f e c t s were so t e r r i b l e , t h e s h a k i n g . And we c o u l d n ' t g e t t h e dose h i g h enough t o work w i t h o u t t h e s i d e e f f e c t s . I g o t tremendous s h a k i n g and so t h e y had t o s t o p t h o s e . P a r t i c i p a n t s d e s c r i b e d some o f t h e i r e m o t i o n a l r e s p o n s e s t o b e i n g i l l . Some p a r t i c i p a n t s d e s c r i b e d t h e embarrassment t h e y f e l t when t h e y t h o u g h t back t o t h e b e h a v i o r d u r i n g a c u t e e p i s o d e s . As one p a r t i c i p a n t s a i d , "Sometimes by y o u r s e l f , you t h i n k o f t h i n g s you d i d i n t h e i l l n e s s and you g o — I d i d t h a t . I f e e l so s t u p i d . " A n o t h e r p a r t i c i p a n t e x p l a i n e d t h a t she f e l t b a d l y about t h e way she had t r e a t e d p e o p l e when she was a c u t e l y i l l . She s t a t e d , " I was s t i l l b o t h e r e d by a l o t o f t h e t h i n g s I ' d done when I was i l l . I had a good f r i e n d who I ' d h u r t . " S e v e r a l p a r t i c i p a n t s d e s c r i b e d f e e l i n g s o f f r u s t r a t i o n w i t h t h e l a c k o f improvement i n t h e i r i l l e s s . T h i s i s f r u s t r a t i o n . Because I've been l i k e t h i s f o r 23 y e a r s and I've th o u g h t o f dozens o f p e o p l e t h a t have g o t b e t t e r i n t h a t t i m e , you k n o w — t h a t had t h e same symptoms as me o r worse, y e t I ne v e r g o t b e t t e r . O r d i n a r y m e d i c a t i o n s such as c h l o r p r o m a z i n e and so on d i d n ' t seem t o do v e r y much f o r me. And t h a t caused even more d e s p a i r because I t h o u g h t , oh my goodness, t h e m e d i c a t i o n s t h a t a r e supposed t o work a r e n ' t w o r k i n g f o r me. I n d e s c r i b i n g what i t meant t o be i l l , some i n d i v i d u a l s u s ed e x p r e s s i o n s , such as "pure h e l l " , " a n i g h t m a r e " , and " t o t a l l y t e r r i f y i n g . " These e x p r e s s i o n s s u g g e s t t h e f e a r and a n g u i s h w h i c h some p a r t i c i p a n t s e x p e r i e n c e d a t c e r t a i n t i m e s . r 78 A n o t h e r p a r t i c i p a n t summed up h i s e x p e r i e n c e o f b e i n g i l l by s a y i n g , "So s c h i z o p h r e n i a i s j u s t a v e r y p a i n f u l s i t u a t i o n . " P a r t i c i p a n t s a l s o d e s c r i b e d v a r i o u s p o i n t s o f t h e i r i l l n e s s e x p e r i e n c e . As j u s t mentioned, some p a r t i c i p a n t s i n d i c a t e d t h a t a t c e r t a i n p o i n t s t h e i r i l l n e s s was l i k e "a n i g h t m a r e . " Most o f t e n t h e y were r e f e r r i n g t o t h e f i r s t s e v e r a l y e a r s o f t h e i l l n e s s . The f i r s t s e v e r a l y e a r s , f o r many p a r t i c i p a n t s were t h e w o r s t , t h a t i s , t h e y were a c u t e l y i l l more o f t e n . P a r t i c i p a n t s made comments such a s , "When someone i s d i a g n o s e d w i t h s c h i z o p h r e n i a — w h e n he g e t s s i c k , t h e w o r l d d i s i n t e g r a t e s as t h e y know i t . " A n o t h e r p e r s o n , i n d e s c r i b i n g t h e f i r s t y e a r s o f b e i n g i l l s a i d , " I had some r e a l l y m i s e r a b l e t i m e s . " Some p a r t i c i p a n t s i n d i c a t e d t h a t t h e y f e l t more "out o f c o n t r o l " a t t h e b e g i n n i n g o f t h e i l l n e s s . A t a n o t h e r p o i n t o f t h e i l l n e s s s e v e r a l p a r t i c i p a n t s began t o d e s i r e knowledge about t h e i l l n e s s and began t o l e a r n how t o cope w i t h t h e i l l n e s s . I t h o u g h t l e t s go t o d a y c a r e and l e t s l e a r n more about t h i s . And I l e a r n e d more about my own c h e m i s t r y and I t h i n k i t becomes a p a r t o f you. There's a c e r t a i n p a r t o f you t h a t s a ys t h i s i s i m p o r t a n t because i t s p a r t o f me. So g r a d u a l l y i t s become a s t r o n g p o i n t o f me—my p e r s o n a l i t y . There i s a c h e m i c a l need t h e r e t h a t ' s p a r t o f me, and u n t i l t h e y f i n d t h e e x a c t gene and how t o t r e a t i t , i t w i l l a l ways be a p a r t o f me. You do f e e l , oh no, you've had t o s t a r t a l l o v e r a g a i n , b u t I'm g e t t i n g used t o t h a t f e e l i n g . And t h e one p o s i t i v e t h i n g I can say about t h a t i s t h a t because I'm g e t t i n g used t o t h a t now, i t ' s n o t such a blow as i t i s t h e f i r s t t i m e . The f i r s t t i m e i t ' s a t e r r i b l e shock, t h e second t i m e i t was a m i s e r a b l e shock, t h e t h i r d t i m e i t ' s j u s t a shock and t h e f o u r t h t i m e you s t a r t g e t t i n g used t o i t . So r i g h t now I know t h a t I can p u l l m y s e l f up a g a i n , w h i c h I d i d n ' t know t h e f i r s t 2 o r 3 t i m e s . I t h o u g h t , oh my l i f e i s r u i n e d . Now I know my l i f e i s n ' t r u i n e d . A number o f t h e p a r t i c i p a n t s d e s c r i b e d t h e i r e x p e r i e n c e a t a n o t h e r p o i n t o f t h e i l l n e s s . D u r i n g a p o i n t o f b e i n g i l l , t h e y f e l t more h e a l t h y and w e l l t h a n t h e y had a t o t h e r t i m e s . As mentioned i n c h a p t e r 3, many o f t h e p a r t i c i p a n t s made comments such a s , "Things a r e b e t t e r now t h a n t h e y have been f o r y e a r s . " A n o t h e r p e r s o n i n d i c a t e d t h a t he was f e e l i n g b e t t e r t h a n i n p r e v i o u s y e a r s . W e l l , p a r a n o i d s c h i z o p h r e n i a i s a v e r y s e r i o u s i l l n e s s . I seem t o be p u l l i n g o u t o f i t now t h a t I'm g e t t i n g o l d e r . I seem t o be more mature i n d e a l i n g w i t h i t . Some p a r t i c i p a n t s commented t h a t a t a c e r t a i n p o i n t o f t h e i l l n e s s t h e y were a b l e t o go beyond t h e n s e l v e s and s t a r t h e l p i n g o t h e r p e o p l e . One p e r s o n s a i d t h a t when he had a c c e p t e d t h e i l l n e s s , he was a b l e t o t h i n k about o t h e r p e o p l e . I t t o o k , w e l l , when I say complete a c c e p t a n c e , I ' d say about a y e a r a g o — b e c a u s e when i t • s c omplete you * r e a b l e t o go away from y o u r s e l f and c o n c e n t r a t e on o t h e r p e o p l e w i t h t h e i l l n e s s . And I t h i n k t h a t ' s when yo u ' r e f e e l i n g a c c e p t i n g — y o u ' r e a b l e t o go on. That p a r t i c u l a r p e r s o n and s e v e r a l o t h e r s i n d i c a t e d a d e s i r e t o h e l p o t h e r p e o p l e who have s c h i z o p h r e n i a . One p a r t i c u l a r i n s t a n c e — h e r son i s coming t o t h e m e e t i n g t o n i g h t a n d — b e c a u s e t h e r e was someone t h e o t h e r n i g h t a t [ t h e community meeting] who spoke o u t i n t h e m i d d l e o f t h e s e s s i o n , and he s a i d he has a son t h a t i s s c h i z o p h r e n i c and d o e s n ' t t a k e h i s meds sometimes. And one o f t h e guys s a i d , " w e l l maybe [my f r i e n d ] can t a l k t o him. And maybe i n a c o u p l e weeks I w i l l g e t a h o l d o f h i s son and t a l k t o him. 80 I t h i n k a b o u t — n o w I've come a l o n g way, and maybe I can h e l p o t h e r s c h i z o p h r e n i c s and maybe g i v e them some hope. One r e a s o n I wanted t o do t h i s , i s p a r t o f my, what I c a l l work, p a r t o f my u s e f u l n e s s . I f I can h e l p o t h e r p e o p l e , y o u n g s t e r s now who a r e g r o w i n g up and w i l l be d e v e l o p i n g t h i s i l l n e s s . . . S o I'm h o p i n g my e x p e r e i n c e i s coming t o be h e l p f u l t o younger p e o p l e who a r e g o i n g t h r o u g h t h i s — a n d I w i s h I had known t h e f i r s t y e a r o r two when I was i l l . Two p a r t i c i p a n t s s u g g e s t e d t h a t p e o p l e who have s c h i z o p h r e n i a s h o u l d h e l p p e o p l e , who don't have t h e i l l n e s s , t o l e a r n more about i t . One o f them made t h e f o l l o w i n g comment. T h i s i s one t h i n g t h a t I ' d l i k e t o have seen i s p e o p l e who have become i l l can go a r o u n d — s a y t a l k i n g t o h i g h s c h o o l s and c l e a r up t h e problems so t h a t t h e r e a r e n ' t m i s c o n c e p t i o n s about t h e word. I n summary, b e i n g i l l meant e x p e r i e n c i n g changes i n t h i n k i n g p e r c e i v i n g , and b e h a v i n g . Each p e r s o n e x p e r i e n c e d v a r i o u s symptoms and t h e n a t u r e o f t h e symptoms was d i f f e r e n t f o r each p e r s o n . Changes o c c u r r e d i n r e l a t i o n s h i p s w i t h o t h e r p e o p l e . Some p a r t i c i p a n t s w i t h d r e w from r e l a t i o n s h i p s because o f p a r a n o i a . O t h e r s e x p e r i e n c e d t e n s i o n i n r e l a t i o n s h i p s because o f mood changes and o t h e r s l o s t c o n f i d e n c e i n i n t e r a c t i n g w i t h p e o p l e . Many found t h a t , a t t i m e s , t h e i r a b i l i t y t o t o l e r a t e s t r e s s was a f f e c t e d . Each d e s c r i b e d how t h i s a f f e c t e d t h e i r a b i l i t y t o f u n c t i o n . F o r many, b e i n g i l l meant h a v i n g t o d e a l w i t h u n p r e d i c t a b l e e p i s o d e s and t r o u b l e s o m e s i d e e f f e c t s o f m e d i c a t i o n . As w e l l , f o r many b e i n g i l l meant f e e l i n g embarrassed about c e r t a i n b e h a v i o r s and f e e l i n g f r u s t r a t e d w i t h t h e l a c k o f improvement i n h e a l t h . 81 P a r t i c i p a n t s d e s c r i b e d e x p e r i e n c e s t h e y ' d had a t v a r i o u s p o i n t s o f t h e i l l n e s s . S e v e r a l e x p l a i n e d t h a t t h e f i r s t few y e a r s had been t h e w o r s t . Some p a r t i c i p a n t s d e s c r i b e d p e r i o d s d u r i n g w h i c h t h e y had d e v e l o p e d a d e s i r e t o l e a r n more about t h e i l l n e s s , and a number s a i d t h a t a t a c e r t a i n p o i n t t h e y had a c q u i r e d an i n t e r e s t i n h e l p i n g o t h e r s t o l e a r n about s c h i z o p h r e n i a . B e i n g Diagnosed • I n a d d i t i o n t o d e s c r i b i n g what i t meant t o be i l l , p a r t i c i p a n t s d e s c r i b e d what i t meant t o be d i a g n o s e d w i t h s c h i z o p h r e n i a . H a v i n g t h e name " s c h i z o p h r e n i a " a t t a c h e d t o t h e i l l n e s s was a s i g n i f i c a n t p a r t o f t h e i l l n e s s e x p e r i e n c e . Two o f t h e p a r t i c i p a n t s e x p l a i n e d t h a t , i n i t i a l l y , t h e y were r e l i e v e d t o f i n a l l y know "what was wrong." They had l i v e d w i t h t h e i l l n e s s f o r a p e r i o d o f t i m e w i t h o u t knowing what was wrong o r how t o g e t h e l p . E v e n t u a l l y t h e s e i n d i v i d u a l s came t o b e l i e v e , as d i d t h e o t h e r p a r t i c i p a n t s , t h a t h a v i n g t h e d i a g n o s i s o f s c h i z o p h r e n i a was "a bad t h i n g " . Some p a r t i c i p a n t s i n d i c a t e d t h a t t h e y and t h e i r f a m i l y f e l t s h ocked o r st u n n e d when t h e y r e a l i z e d what t h e d o c t o r had s a i d t o them. I t h i n k when t h e y f i r s t g e t t h e i l l n e s s i t j u s t h i t s you. I t ' s l i k e w h o a — I ' v e been l a u g h i n g a t t h e s e p e o p l e t h a t have t h i s i l l n e s s , f o r y e a r s , and now you say I g o t i t . I n f a c t my p a r e n t s were i n shock when t h e d o c t o r t o l d them t h a t ' s what I had. Because t h e y ' d p i c t u r e d p e o p l e i n l o c k e d rooms and d r o o l i n g i n t h e c o r n e r . 82 I t h i n k I c o u l d d e a l w i t h somebody t e l l i n g me I have c a n c e r , a l o t e a s i e r t h a n b e i n g what I am. Most p a r t i c i p a n t s e x p l a i n e d t h a t when g i v e n t h e d i a g n o s i s o f s c h i z o p h r e n i a t h e y f e l t t h e y had been " l a b e l l e d " w i t h a " t e r r i b l e word" t h a t had " t e r r i b l e c o n n o t a t i o n s " . As one p a r t i c i p a n t s a i d , " I t h i n k t h e word " s c h i z o p h r e n i a " i s t h e r e w i t h " c h i l d m o l e s t e r " and "mass murderer." A n o t h e r p a r t i c i p a n t echoed t h i s comment when he s a i d , "You mi g h t as w e l l s ay "mass murderer" o r " p e d o p h i l e " o r something. "Many p a r t i c i p a n t s i n d i c a t e d t h a t t h e y t h o u g h t t h e p u b l i c a s s o c i a t e d " s c h i z o p h r e n i c s " w i t h o t h e r dangerous p e o p l e , as t h e f o l l o w i n g two s t a t e m e n t s i l l u s t r a t e ; "They t h i n k we're a l l p s y c h o t i c k i l l e r s " and "They t h i n k we're dangerous." One p a r t i c i p a n t t h o u g h t t h a t t h e word was so bad t h a t a new one s h o u l d be used i n s t e a d . I t h i n k i t ' s t h e name t h a t s c a r e s p e o p l e . I t s c a r e s my own p a r e n t s . They s t i l l don't l i k e t h a t w o r d — don't use i t v e r y much. So I t h i n k t h a t word has g o t t o have a m u l t i m i l l i o n d o l l a r campaign t o c l e a n i t up, o r g e t a new one w h i c h would be a l o t cheaper. Many p a r t i c i p a n t s responded t o t h e d i a g n o s i s by r e j e c t i n g i t and r e j e c t i n g t h e t r e a t m e n t t h a t would re m i n d them o f t h e d i a g n o s i s . I've had t h i s " g o i n g a g a i n s t t h e d o c t o r s " f i v e y e a r s ago back i n '86, and g o i n g a g a i n s t my p a r e n t s — n o , no, I don't need m e d i c a t i o n . I found o ut t h e h a r d way t h a t you do need [ t h e m e d i c a t i o n ] . And I had a n o t h e r p s y c h o t i c e p i s o d e and I ended up back i n h o s p i t a l and t h e d o c t o r said,"we can p u t you i n R i v e r v i e w , i s t h a t what you want?" J u s t k i n d o f an u l t i m a t u m . I p e r s o n a l l y have a g r e a t d e a l o f t r o u b l e a c c e p t i n g t h e f a c t t h a t I'm s c h i z o p h r e n i c . I don't want t o be s c h i z o p h r e n i c . G i v e me a break. T h i s i s n ' t h a p pening 83 t o me. So you s o r t o f f e e l l i k e i t s a v e r y n e g a t i v e t h i n g — a v e r y bad t h i n g t o happen. A t one t i m e I was v e r y v e r y c o n c e r n e d about b e i n g a m e n t a l p a t i e n t and a l o t o f t h a t f o r me w a s — I was a m e n t a l p a t i e n t f o r as l o n g as I k e p t t a k i n g t h e d r u g s , r i g h t . I made a s t r o n g c o n n e c t i o n between t a k i n g drugs and b e i n g m e n t a l p a t i e n t and I j u s t d i d n ' t want t o be t h a t . Because t h e y viewed t h e word as b e i n g n e g a t i v e , some p a r t i c i p a n t s d i d n o t want t o t e l l many p e o p l e about t h e i r d i a g n o s i s . One p a r t i c i p a n t t h o u g h t i t would r u i n h e r l i f e i f p e o p l e knew about h e r d i a g n o s i s . I don't want t o r u i n t h e r e s t o f my l i f e and my c a r e e r by h a v i n g a t e r r i b l e d i a g n o s i s a t t a c h e d t o i t , because r e a l l y t h a t would r u i n my l i f e I would say. Some p a r t i c i p a n t s h e s i t a t e d t o t e l l o t h e r p e o p l e , because of u n c e r t a i n t y o f how t h e s e p e o p l e would r e s p o n d . As one i n d i v i d u a l s a i d , " I ' v e never mentioned t h e word s c h i z o p h r e n i a . I wouldn't have any f r i e n d s . They'd be o f f . " O t h e r comments i n d i c a t e d u n c e r t a i n t y about o t h e r p e o p l e s ' r e s p o n s e s . I'm n o t s u r e how I f e e l about p e o p l e knowing I have s c h i z o p h r e n i a . I was w a t c h i n g TV a week back and i t was some r e l i g i o u s "who-ha". The poor guy i s s i t t i n g up t h e r e and t h e y had a c a p t i o n u n d e r n e a t h t h a t s a i d s c h i z o p h r e n i c . And t h e n t h e y moved t o t h e n e x t one and i t was some woman .b l a b b i n g about b e i n g d e p r e s s e d . And t h e n t h e y s a i d , "how can we h e l p t h e s e p e o p l e ? " W e l l you know i t ' s l i k e a l l o f a sudden we're what needs t o be t a k e n c a r e o f . You f e e l you have t o keep up a normal l i f e s t y l e . I t ' s v e r y h a r d t o e x p l a i n why you don't work, y o u ' r e n o t f u n c t i o n i n g w i t h o u t s p i l l i n g t h e b e a n s — I have an i l l n e s s and I c a n ' t — b e c a u s e t h e r e i s s t i l l a l a r g e s t i g m a a t t a c h e d . I n f a c t my p a r e n t s would say, " w e l l don't say t h a t t o somebody". And t h e y were c o v e r i n g up f o r me a c o u p l e o f y e a r s t o o , because t h e y t h o u g h t i t was temporary and t h e y d i d n ' t want t o say, 84 "oh yes our [ d a u g h t e r ] has s c h i z o p h r e n i a " , and t h e y ' l l s ay "oh my goodness!" and "oh t h a t ' s t o o bad. S h e ' l l spend t h e r e s t o f h e r l i f e i n h o s p i t a l " o r something. So t h e r e ' s been a tremendous c o v e r i n g up o f i t a l l t h e t i m e . P a r t i c i p a n t s i n d i c a t e d t h a t t h e y f e l t f r u s t r a t i o n w i t h t h e p u b l i c ' s m i s u n d e r s t a n d i n g o f t h e t e rm " s c h i z o p h r e n i a . " They b e l i e v e d t h e p u b l i c was v e r y m i s i n f o r m e d about t h e t r u e n a t u r e o f t h e i l l n e s s and some p a r t i c i p a n t s f e l t annoyed w i t h t h e way p e o p l e used t h e word. When you g i v e somebody t h e t i t l e s c h i z o p h r e n i c , t h e p e r s o n on t h e s t r e e t r e a l l y d o e s n ' t know what i s b e i n g s a i d . You know e v e r y b o d y — l i k e k i d s say, "oh he's s c h i z o p h r e n i c " — i t ' s s o r t o f a common e x p r e s s i o n , w i t h o u t r e a l l y knowing what i t means. I t h i n k a l o t o f t h a t r e a l l y c a r r i e s on i n t o a d u l t h o o d and t h e y t r e a t you a b n o r m a l l y . E v e r y once i n a w h i l e I h e a r p e o p l e u s i n g t h e word s c h i z o p h r e n i a i n a c o m p l e t l y wrong manner and i t annoys me, because t h e s e a r e w e l l e d u c a t e d p e o p l e and t h e y r e a l l y don't know. They s t i l l t h i n k i t means b l a c k and w h i t e . You don't h e a r them s a y i n g I had a d i a b e t i c k i n d o f day. I h e a r d someone s a y i n g I had a s c h i z o p h r e n i c k i n d o f day and I l o o k e d a t them and t h o u g h t , "oh no you  d i d n ' t ! Oh no you d i d n ' t ! " I t h i n k i n g e n e r a l t h e p u b l i c i s g r o s s l y m i s i n f o r m e d . I t h i n k one o f t h e r e a s o n s f o r t h a t i s when you say s c h i z o p h r e n i a t h e y t e n d t o t h i n k o f extreme c a s e s t h a t e x i s t . Yes t h e r e a r e some s c h i z o p h r e n i c s who a r e r e a l l y q u i t e o u t o f t o u c h w i t h r e a l i t y , b u t t h e r e a r e a l o t o f s c h i z o p h r e n i c s who a r e h i g h f u n c t i o n i n g , who do as w e l l i f n o t b e t t e r t h a n a l o t o f normal p e o p l e so t o speak. B e i n g d i a g n o s e d w i t h s c h i z o p h r e n i a a f f e c t e d many p a r t i c i p a n t s ' s e l f - e s t e e m . T h i s a l s o a f f e c t e d t h e i r d e c i s i o n t o a v o i d t e l l i n g p e o p l e about t h e d i a g n o s i s . As soon as you say y o u ' r e s c h i z o p h r e n i c , you f e e l t h i s p a r l o w e r t h a n everybody e l s e . You s o r t o f f e e l l i k e you've become a l e s s e r p e r s o n . 85 Some p a r t i c i p a n t s e v e n t u a l l y came t o terms w i t h t h e d i a g n o s i s . F o r some, coming t o terms meant v i e w i n g s c h i z o p h r e n i a as a m e d i c a l problem. I don't t h i n k i t s such a b i g d e a l anymore. I've s e e n — remove t h e s t i g m a o f s c h i z o p h r e n i a , i t s a d i s e a s e . I hope i t w i l l change i n t h e n e x t few y e a r s and p e o p l e w i l l r e a l i z e t h a t i t i s j u s t a c h e m i c a l problem. I t ' s n o t some s t r a n g e t e r r i b l e t h i n g . F o r o t h e r s , coming t o terms meant v i e w i n g t h e word as a r e f l e c t i o n o f s o c i e t y ' s need t o l a b e l and c a t e g o r i z e . Two p a r t i c i p a n t s s a i d t h a t i t was " s o c i e t y ' s p r oblem." I n o t h e r words, t h e y acknowledged t h e i r i l l n e s s , b u t n o t t h e " l a b e l . " One p a r t i c i p a n t came t o terms w i t h t h e word " s c h i z o p h r e n i a " by a c c e p t i n g i t as a r e f l e c t i o n o f h i s " u n i q u e n e s s . " He s a i d t h a t he had always been " d i f f e r e n t " and t h a t d i d n ' t b o t h e r him. I n summary, f o r t h e s e p a r t i c i p a n t s , b e i n g d i a g n o s e d w i t h s c h i z o p h r e n i a meant b e i n g g i v e n a n e g a t i v e and h i g h l y s t i g m a t i z e d l a b e l . They b e l i e v e d t h a t t h e g e n e r a l p u b l i c was v e r y m i s i n f o r m e d about s c h i z o p h r e n i a and t h a t t h e g e n e r a l p u b l i c t h o u g h t p e o p l e w i t h s c h i z o p h r e n i a were dangerous. Some p a r t i c i p a n t s f e l t shocked by t h e d i a g n o s i s and many, i n i t i a l l y , r e j e c t e d i t and t h e t r e a t m e n t . Because o f u n c e r t a i n t y about t h e r e s p o n s e t h e y would r e c i e v e , p a r t i c i p a n t s d i d n o t want t o t e l l many p e o p l e about t h e i r d i a g n o s i s . Some p a r t i c i p a n t s e v e n t u a l l y came t o terms w i t h t h e d i a g n o s i s and found a way t o d e a l w i t h i t . 86 I n c o n c l u s i o n , each p a r t i c i p a n t d e s c r i b e d how b e i n g i l l meant e x p e r i e n c i n g changes i n a r e a s such as t h i n k i n g , p e r c e i v i n g , r e l a t i n g , b e h a v i n g , s t r e s s t o l e r a n c e , s e l f -c o n f i d e n c e , s e l f - e s t e e m , and need f o r s l e e p . W h i l e each p a r t i c i p a n t e x p e r i e n c e d a number o f t h e s e c h a r a c t e r i s t i c changes, t h e n a t u r e o f t h e changes were u n i q u e f o r each p e r s o n . A d d i t i o n a l l y , f o r some, changes were b r o u g h t about by s i d e e f f e c t s o f m e d i c a t i o n and by t h e u n p r e d i c t a b i l i t y o f t h e i l l n e s s e p i s o d e s . Many p a r t i c i p a n t s d e s c r i b e d t h e i r e m o t i o n a l r e s p o n s e s t o b e i n g i l l . S e v e r a l p a r t i c i p a n t s d e s c r i b e d v a r i o u s p o i n t s o f t h e i l l n e s s e x p e r i e n c e . Some s a i d t h a t d u r i n g t h e f i r s t few y e a r s t h e y f e l t worse t h a n a t o t h e r t i m e s . Some a l s o mentioned t h a t a t a c e r t a i n p o i n t t h e y wanted t o l e a r n more about t h e i l l n e s s . S e v e r a l s a i d t h e y were i n t e r e s t e d i n h e l p i n g o t h e r s l e a r n about s c h i z o p h r e n i a . P a r t i c i p a n t s s a i d t h a t b e i n g d i a g n o s e d w i t h s c h i z o p h r e n i a meant b e i n g l a b e l l e d w i t h a n e g a t i v e , s t i g m a t i z e d d i a g n o s i s t h a t was m i s u n d e r s t o o d and p e r c e i v e d by t h e p u b l i c t o be a s s o c i a t e d w i t h dangerous b e h a v i o r . Because o f t h e n e g a t i v e c o n n o t a t i o n s o f t h e d i a g n o s i s , many e x p r e s s e d u n c e r t a i n t y about t e l l i n g o t h e r p e o p l e about t h e d i a g n o s i s . F o r some, t h e i n i t i a l r e ponse t o t h e d i a g n o s i s was shock and r e j e c t i o n . E v e n t u a l l y some i n d i v i d u a l s came t o terms w i t h t h e d i a g n o s i s and found a c o m f o r t a b l e way t o v i e w t h e d i a g n o s i s . 87 W o r k - r e l a t e d E x p e r i e n c e P a r t i c i p a n t s d e s c r i p t i o n s o f t h e i l l n e s s e x p e r i e n c e were i n t e r s p e r s e d w i t h i n t h e d e s c r i p t i o n s o f t h e w o r k - r e l a t e d e x p e r i e n c e . Many p a r t i c i p a n t s began d i s c u s s i o n o f t h e work-r e l a t e d e x p e r i e n c e by d e s c r i b i n g what t h e y were d o i n g a t t h e t i m e t h e y f i r s t g o t i l l . T h i s o f t e n l e a d t o a d i s c u s s i o n o f t h e e x p e r i e n c e o f l o o k i n g f o r work. L o o k i n g f o r Work F o r some i n d i v i d u a l s , t h e o n s e t o f t h e i l l n e s s o c c u r r e d d u r i n g e d u c a t i o n a l programs a t u n i v e r s i t y o r c o l l e g e . The f i r s t t i m e I r e a l l y became i l l was a t u n i v e r s i t y when I s t a r t e d t o he a r v o i c e s and was s l e e p i n g most o f t h e day. And f r i e n d s s u g g e s t e d t h a t I go t o see a d o c t o r and I guess you'd say t h a t ' s t h e f i r s t t i m e I became i l l — b u t I wasn't w o r k i n g as I s a i d , I was i n s c h o o l . When I was 24, I was i n b a k i n g s c h o o l and I knew I needed some k i n d o f h e l p . And I knew I needed t o change t h e way I was f e e l i n g . F o r o t h e r s t h e o n s e t was d u r i n g a p e r i o d o f employment. I worked as a desk c l e r k a t a n a t i o n a l p a r k , and t h e n I worked i n an i c e f a c t o r y i n a n a t i o n a l p a r k — a n d I j u s t s t a r t e d t o g e t t h e symptoms. I f i r s t o f a l l s t a r t e d f e e l i n g t h a t p e o p l e were t r y i n g t o d r u g me t h r o u g h my f o o d . . . I was a c t u a l l y w o r k i n g a t t h e t i m e . I n most c a s e s , o n s e t o f t h e i l l n e s s r e s u l t e d , e v e n t u a l l y , i n t h e p e r s o n h a v i n g t o s t o p o r q u i t work o r s c h o o l . As one p a r t i c i p a n t s a i d , "so t h a t f o r c e d me t o l e a v e t h i s j o b because o f t h e p e o p l e t h e r e . I had no t r u s t f o r them." P a r t i c i p a n t s who were i n s c h o o l a l s o found t h a t t h e i l l n e s s d i s r u p t e d t h e i r p l a n s . 88 My mom d e c i d e d i t would be a good i d e a i f I went i n t o t h e h o s p i t a l , j u s t t o see what was g o i n g on. So t h e y booked me i n t o t h e h o s p i t a l and I had t o p u l l o ut o f s c h o o l . Some i n d i v i d u a l s were a b l e t o resume s c h o o l o r g e t a new j o b r i g h t away. I g o t f i r e d . So t h e n t h a t v e r y day I went t o p i c k up my dog. He was a t t h e k e n n e l . . . I s a i d , " I j u s t g o t f i r e d " , and she s a i d , "oh we need somebody." So I s t a r t e d w o r k i n g f o r h e r i n t h e k e n n e l . But t h e y were r e a l l y n i c e about i t a t [ t h e c o l l e g e ] because t h e y l e t me come back t o f i n i s h : o f f t h e h a l f t h a t I m i s s e d — a f t e r I had t h e a t t a c k , when I was d i a g n o s e d w i t h s c h i z o p h r e n i a — a n d I s t i l l went back t o s c h o o l . F o r o t h e r s t h e o n s e t o f t h e i l l n e s s p r e c l u d e d work p l a n s f o r a l o n g e r p e r i o d o f t i m e . I t i n t e r f e r r e d w i t h t h e s c h o o l and t h e j o b s t h a t summer. Fo r i n s t a n c e I d i d n ' t work t h a t summer because I wasn't f e e l i n g v e r y w e l l . So I guess you'd say i t i n t e r f e r e d w i t h my p l a n s t o work even though I wasn't w o r k i n g a t t h e t i m e . I had a nervous breakdown when I was 21, w h i c h l e a d t o a s u i c i d e a t t e m p t and e v e r y t h i n g e l s e . And a f t e r t h a t I was so d e p r e s s e d and t h e symptoms were so s e v e r e t h a t I c o u l d n ' t work f o r s e v e r a l y e a r s . Some o f t h e p a r t i c i p a n t s resumed s c h o o l b u t t h e n e v e n t u a l l y s t a r t e d l o o k i n g f o r work. No p a r t i c i p a n t s resumed t h e work t h e y ' d had p r i o r t o o n s e t o f t h e i l l n e s s . F o r most p a r t i c i p a n t s , t h e n , t h e o n s e t o f i l l n e s s s i g n a l l e d t h e b e g i n n i n g o f t h e e x p e r i e n c e o f l o o k i n g f o r work. I n j o b h u n t i n g , p a r t i c i p a n t s used methods open t o t h e g e n e r a l p u b l i c such as r e s p o n d i n g t o newspaper adds, a p p l y i n g 89 a t t h e Canada Employment and I m m i g r a t i o n Commission ( C . E . I . C . ) / t a l k i n g t o f r i e n d s , and pounding t h e pavement t o seek o u t p r o s p e c t i v e employers. Some o f them have a c t u a l l y been g o i n g around t o s t o r e s and l e a v i n g my resume. One o r two I have found by ads. One o f my good j o b s was t h r o u g h a f r i e n d who t o l d me something was coming a v a i l a b l e . One o f them was l i t e r a l l y t a l k i n g t o a s t o r e owner and s a y i n g I was l o o k i n g f o r a j o b . And t h e y were l o o k i n g f o r someone t o t y p e and i t j u s t worked out l i k e t h a t . . . A l o t o f them was s c r a m b l i n g around m y s e l f . F o r i n s t a n c e g o i n g t o t h e department o r g o i n g t o t h e s t o r e — f i n d i n g o u t p l a c e s t h a t I t h o u g h t I might l i k e t o work and g o i n g t o them. V e r y r a r e l y had i t been t h r o u g h t h e employment c e n t e r — b u t u s u a l l y on my own, b e g g i n g . L o o k i n g i n t h e paper f o r d i f e r e n t j o b o p p o r t u n i t i e s . There a r e a number o f b u s i n e s s e s you can s t a r t w i t h j u s t a few d o l l a r s . I've g o t t e n a l o t o f i t t h r o u g h t h e employment c e n t e r . You see a j o b on t h e b o a r d , a n d — l i k e t h e j o b I've g o t now, i t s a i d f i v e d o l l a r s t o s t a r t , and I t h o u g h t w e l l I can s t a r t w i t h t h a t and work my way up. O t h e r s made use o f s e r v i c e s g e a r e d towards i n d i v i d u a l s w i t h m e n t a l h e a l t h problems, such as j o b c l u b s and r e h a b i l i t a t i o n s e r v i c e s and o t h e r s community m e n t a l h e a l t h s e r v i c e s . I j u s t k e p t t r y i n g a l l t h e s e j o b s , and went t o t h e j o b c l u b and found something I l i k e d t o d o — j u s t l i k e t r y i n g o u t d i f f e r e n t j o b s . I went t o [a community program] and d i d a c o u r s e t h e r e . They g e t you an a c t u a l j o b . They g o t me a j o b . The j o b c l u b I went t o — i t s a s p e c i a l i z e d j o b c l u b . W e l f a r e pays them f o r g e t t i n g w e l f a r e p e o p l e on j o b s , and t h e y a l s o t a k e s p e c i a l needs p e o p l e . P a r t i c i p a n t s i n d i c a t e d t h a t a t t i m e s i t was n o t d i f f i c u l t t o f i n d a n o t h e r j o b . I j u s t go g e t t h e m — g o down t o t h e j o b c e n t e r and i f I see one I l i k e — t a l k t h e guy i n t o g i v i n g i t t o me. What anybody can do. So you haven't had any d i f f i c u l t y 90 g e t t i n g j o b s ? No, b u t t h e n I don't t h i n k t h a t I'm t h a t a c u t e a c a s e and when I go f o r a j o b , I've ne v e r been i n a p o s i t i o n where I'm i l l a t t h e t i m e . I f UI r a n o u t I ' d go on w e l f a r e , b u t I was ne v e r on w e l f a r e f o r more t h a n a month o r so...By t h e n I would have found a n o t h e r j o b . There were s e v e r a l e x p l a n a t i o n s f o r t h e l a c k o f d i f f i c u l t y i n f i n d i n g work. Some p a r t i c i p a n t s were i n v o l v e d i n l o o k i n g f o r work i n t h e 1970's, and as one p a r t i c i p a n t e x p l a i n e d , " j o b s weren't t o o h a r d t o g e t i n t h o s e days, back i n t h e 70's, e a r l y 70's." A t o t h e r t i m e s , i t was a m a t t e r o f b e i n g a t t h e r i g h t p l a c e a t t h e r i g h t t i m e , as t h e f o l l o w i n g s t a t e m e n t e x e m p l i f i e s . I k i n d o f w a l k e d i n t h e r e and I t h o u g h t i f I ' d be w o r k i n g t h e r e I ' d be l u c k y — w e l l I ' l l go f o r t h e i n t e r v i e w anyway...I t a l k e d t o him, and he d i d n ' t l o o k a t my work h i s t o r y o r anything...He s a i d you g e t t h i s j o b and how about you s t a r t tomorrow. Y e t a n o t h e r e x p l a n a t i o n f o r t h e l a c k o f d i f f i c u l t y i n f i n d i n g work i s t h a t p a r t i c i p a n t s would o f t e n t a k e any t y p e o f j o b . As one p a r t i c i p a n t s a i d , " I k e p t w o r k i n g a t a n y t h i n g I c o u l d do." She added l a t e r , " E v e r y t i m e I g e t o u t o f a j o b — I would go t o manpower and say, ok I ' l l t r y t h i s . " A n o t h e r p a r t i c i p a n t ' s comment r e f l e c t s t h e a t t i t u d e t h a t , a t t i m e s , any j o b was b e t t e r t h a n no j o b . But when y o u ' r e i l l any j o b , any apartment, any c a r , a n y t h i n g i s f i n e . I t s j u s t a m a t t e r o f d i f f e r e n t l e v e l s . I guess i t ' s human n a t u r e . I f you don't have any j o b , two days a week l o o k s good. I f you have a two days a week j o b , you might want t h r e e , f o u r , o r f i v e days a week. A t o t h e r t i m e s f i n d i n g a j o b was more d i f f i c u l t . One p a r t i c i p a n t mentioned t h a t i t was h a r d t o g e t a j o b a t t h e 91 c u r r e n t t i m e because, as he s a i d , " t h e r e ' s t h e f a c t t h a t Canada's i n r e c e s s i o n and unemployment i s so h i g h . " P a r t i c i p a n t s a l s o found i t d i f f i c u l t t o f i n d a j o b when t h e y were l o o k i n g f o r a j o b t h a t met c e r t a i n c r i t e r i a . I t ' s v e r y h a r d t o g e t i n t o t h e s e p l a c e s l i k e t h e [ g a l l e r y ] . And i t s h a r d t o g e t a j o b a t something you want, r i g h t away. So I k e p t w a i t i n g and w a i t i n g . There j u s t d o e s n ' t seem t o be enough p a r t - t i m e j o b s o ut t h e r e . I c o u l d n ' t make i t on my own. I c o u l d n ' t f i n d a p a r t - t i m e j ob. I've always had t r o u b l e f i n d i n g p a r t t i m e work. I t seems l i k e f i n d i n g t h e c o r r e c t j o b s i t u a t i o n on my own w i t h o u t b e i n g i n a s u p p o r t i v e work p r o g r a m — i t ' s a l m o s t i m p o s s s i b l e t o f i n d t h a t k i n d o f easy t a s k s i t u a t i o n w i t h o u t t o o much s t r e s s o r s t r a i n . I n a p p l y i n g f o r j o b s , two a r e a s o f c o n c e r n were e v i d e n t ; t h e j o b i n t e r v i e w and f i l l i n g o u t t h e m e d i c a l i n f o r m a t i o n on t h e a p p l i c a t i o n form. F o r some, one o f t h e d i f f i c u l t p a r t s about l o o k i n g f o r work was t h e j o b i n t e r v i e w . One p a r t i c i p a n t i n d i c a t e d t h a t he d i d n ' t want t o overemphasize h i s s k i l l s because he might g e t a j o b t h a t was t o o d i f f i c u l t . J o b i n t e r v i e w s were always t o u g h because I always f e l t — l i k e I had h i g h q u a l i f i c a t i o n s , g r a d e s , academic w i s e , b u t I d i d n ' t want t o s e l l m y s e l f t o o much because t h e t h e y — b e c a u s e I had t h i s problem. But I c o u l d n ' t r e a l l y m e n t i o n t h a t I had t h i s — s o i f I s o l d m y s e l f t o o m u c h — t h e n I j u s t q u i t o r something. A n o t h e r p a r t i c i p a n t ' s comment e x e m p l i f i e s t h e d i f f i c u l t y t h a t s e v e r a l p a r t i c i p a n t s had i n d e t e r m i n i n g how t o e x p l a i n p e r i o d s o f unemployment. I t ' s h a r d enough t o g e t a j o b f o r a normal p e r s o n — t h e r e ' s c o m p e t i t i o n . But i f you have e x t r a t h i n g s t o t r y and e x p l a i n — w h y a r e t h e r e gaps i n y o u r resume?, why don't you have v e r y many r e f e r e n c e s ? , what d i d you do 92 f o r t h e t h r e e y e a r s when t h e r e ' s n o t h i n g on y o u r r e s u m e ? — a l l t h e s e l i t t l e t h i n g s . And you have t o t h i n k o f ways t o e x p l a i n them. Some p a r t i c i p a n t s d e a l t w i t h t h e d i f f i c u l t i e s j u s t d e s c r i b e d by c o v e r i n g up t h e i r unemployment. I t r i e d t o say I was n o r mal. I t r i e d t o f i l l i n my work r e c o r d — a l l t h e b l a n k s p o t s — m a k e a resume and f i l l i n a l l t h e b l a n k s p o t s . The d e c i s i o n o f whether t o t e l l a p r o s p e c t i v e employer about t h e i l l n e s s was a n o t h e r c o n c e r n . As p r e v i o u s l y d i s c u s s e d , p a r t i c i p a n t s f e l t as i f t h e y had been l a b e l l e d w i t h a t e r r i b l e word and t h e y were c o n c e r n e d about t e l l i n g p e o p l e t h e i r d i a g n o s i s . T h i s a f f e c t e d t h e i r b e h a v i o r when a p p l y i n g f o r j o b s . W i t h t h e e x c e p t i o n o f two s p e c i f i c s i t u a t i o n s , i n a l l t h e many j o b a p p l i c a t i o n s no p a r t i c i p a n t i n f o r m e d p r o s p e c t i v e employers about t h e i l l n e s s . One p a r t i c i p a n t e x p l a i n e d t h a t she would t e l l a p r o s p e c t i v e employer about h e r i l l n e s s , because she t h o u g h t she c o u l d h e l p t h a t p e r s o n l e a r n about t h e i l l n e s s . She added t h a t i f an employer w o u l d n ' t h i r e h e r s i m p l y because she has s c h i z o p h r e n i a , she wouldn't want t o work f o r t h a t employer. I f t h e employer wants t o l e a r n something about s c h i z o p h r e n i a , I can h e l p them l e a r n . I f he d i d n ' t a c c e p t i t I w ouldnt want t o work t h e r e anyway. I n t h e second s i t u a t i o n , t h e p a r t i c i p a n t i n d i c a t e d t h a t he had been so d e s p e r a t e f o r a j o b t h a t he d e c i d e d i t might a c t u a l l y h e l p i f he t o l d a s t a f f p e r s o n a t Employment and I m m i g r a t i o n Canada (E.I.C.) t h a t he had s c h i z o p h r e n i a . He 93 d i s c l o s e d t h e i n f o r m a t i o n t o a s t a f f p e r s o n a t C.E.I.C. and t h e p e r s o n gave him a j o b . As mentioned, f r e q u e n t l y p a r t i c i p a n t s d i d n o t i n f o r m p r o s p e c t i v e employers about t h e i l l n e s s . P a r t i c i p a n t s made s t a t e m e n t s s u c h a s : " I don't t e l l my b o s s e s I'm s c h i z o p h r e n i c ; " " I am s t i l l w o r r i e d i f I t o o k a n o t h e r j o b . I w o u l d n ' t t e l l anybody;" "When I a p p l i e d f o r t h e j o b , I d i d n ' t t e l l them. I d i d n ' t t e l l them a n y t h i n g ; " and "They don't know I'm s c h i z o p h r e n i c . I haven't t o l d them." There were s e v e r a l r e a s o n s c i t e d f o r n o t i n f o r m i n g t h e employer. P a r t i c i p a n t s b e l i e v e d t h a t i f t h e y t o l d t h e employer t h e y wouldn't g e t h i r e d . You c a n ' t do a l o t o f j o b s i f you have t h e l a b e l s c h z i o p h r e n i a a t t a c h e d . You j u s t don't g e t h i r e d . I t ' s h a r d g e t t i n g a j o b a t t h e b e s t o f t i m e s b u t t o l e t somebody know you've g o t problems, i t ' s even h a r d e r . And i t ' s v e r y e m b a r r a s s i n g t o — v e r y e m b a r r a s s i n g . T h i n k o f t h e chances o f g e t t i n g a j o b i f you p u t down s c h i z o p h r e n i a on an a p p l i c a t i o n . I t h i n k most resumes go i n t o t h e garbage i n t h e f i r s t p l a c e b u t t h a t one w i l l g e t burned i n t h e c i g a r e t t e a s h t r a y . I t ' s j u s t n o t a n i c e t h i n g . A few p a r t i c i p a n t s t h o u g h t t h a t some employers might h i r e them. But even t h e s e p a r t i c i p a n t s t h o u g h t t h a t most employers w o u l d n ' t h i r e a p e r s o n w i t h s c h i z o p h r e n i a . P e o p l e a r e i n d i v i d u a l s . L i k e one employer might g i v e you a break a c t u a l l y — i f say an i n t e r v i e w e r h a d — o r say an employer had p e r s o n a l e x p e r i e n c e w i t h s c h i z o p h r e n i a , you know. He might t a k e p i t y on you o r something, I don't know. I don't t h i n k i t would work out i n most c a s e s t h o u g h — m i g h t j u s t say f o r g e t i t . 94 Some p a r t i c i p a n t s b e l i e v e d t h a t even i f t h e y had b e t t e r q u a l i f i c a t i o n s t h a n o t h e r a p p l i c a n t s , because o f t h e i r i l l n e s s , t h e y wouldn't g e t h i r e d . I f I come o u t w i t h grades o f 95 p e r c e n t i n e v e r y t h i n g I d i d , and a guy came out w i t h 75 p e r c e n t and he had no m e n t a l i l l n e s s , and I had a m e n t a l i l l n e s s , and we b o t h went f o r t h e same j o b , who would you g i v e t h e j o b t o ? Many p a r t i c i p a n t s t h o u g h t t h e y wouldn't g e t h i r e d , i f t h e y s a i d t h e y had s c h i z o p h r e n i a , because t h e employer would doubt t h e i r a b i l i t y t o f u n c t i o n s a f e l y and r e s p o n s i b l y . There must be a number o f j o b s say where s a f e t y i s i n v o l v e d , where t h e y wouldn't want t o t a k e a chance o f h a v i n g y o u — o r say d e a l i n g w i t h c h i l d r e n o r d e a l i n g w i t h m a c h i n e r y — w h e r e i f y o u r p e r c e p t i o n s a r e o u t , t h e y don't want you e n d a n g e r i n g o t h e r p e o p l e . L i k e some o f us a r e i n p o s i t i o n s o f r e s p o n s i b i l i t y and i f t h e y don't know t o o much about m e n t a l i l l n e s s t h e n r i g h t away t h e y ' r e g o i n g t o back o f f , i f t h e y know you have one. E s p e c i a l l y i f y o u ' r e b o o k k e e p i n g — a l l t h o s e books and a c c o u n t s and s t u f f . . . L i k e t h e y t h i n k y o u ' r e g o i n g c r a z y o r something. They won't g i v e you t h e r e s p o n s i b i l i t y . . . So I t h i n k i t s a l e g i t i m a t e c o n c e r n about t e l l i n g y o u r employer. I f I ' d a d m i t t e d i t i n a j o b i n t e r v i e w , t h e y may have had second t h o u g h t s and w o r r i e d whether I c o u l d do t h e j o b and n o t h i r e d me f o r t h a t r e a s o n . A l s o , i t was p e r c e i v e d t h a t i n t h e w o r k p l a c e , w i t h t h e bottom l i n e b e i n g p r o f i t , employers wouldn't want t o h i r e someone who m i g h t g e t i l l and n o t be a b l e t o h a n d l e t h e i r s h a r e o f t h e work. See t h e employer i s t r y i n g t o make you work 110 p e r c e n t so he can make a p r o f i t . And y o u ' r e g o i n g t o go t o him and say I can o n l y work 70 p e r c e n t . U m — t h e r e ' s a r e a l p r o b l e m r i g h t t h e r e . I know i f I e v e r employed anybody i n p r i v a t e b u s i n e s s , I'm i n b u s i n e s s t o compete w i t h o t h e r companies t h a t a r e g o i n g f u l l s t i n k and p u t t i n g o u t 110 p e r c e n t . And you g o t somebody o n l y c a p a b l e o f p u t t i n g o u t 70 p e r c e n t . T h a t ' s d i f f i c u l t , because t h a t 95 a f f e c t s t h e p e o p l e around you as w e l l . I t ' s l i k e i f t h e r e ' s a whole bunch o f you s i t t i n g a t d i f f e r e n t d e sks i n an o f f i c e and t h i s one guys c h e c k i n g o u t e v e r y second a f t e r n o o n because he do s e n ' t f e e l w e l l , hay everybody's g o i n g t o f e e l a l i t t l e o u t o f j o i n t . B e i n g b u s i n e s s o r i e n t e d , I know t h a t I'm g o i n g t o l o s e more money on t h e guy t h a t ' s g o t a m e n t a l i l l n e s s t h a n I have on t h e guy t h a t d o e s n ' t . T h a t ' s t h e way I would l o o k a t i t . So I t h i n k t h a t way. I j u s t c a n ' t h e l p t h i n k i n g I wouldn't t e l l them. P a r t i c i p a n t s f e l t t h a t l a c k o f knowledge and m i s u n d e r s t a n d i n g of t h e i l l n e s s a f f e c t e d employers' d e c i s i o n s about h i r i n g someone w i t h s c h i z o p h r e n i a . I f you t e l l them yo u ' r e s c h i z o p h r e n i c t h e n t h e y ' l l r e a l l y g e t w o r r i e d and r e a l l y t h e y don't know what i t i s t h a t t h e y ' r e w o r r i e d about. They j u s t h e a r d t h i s word and i t ' s p r o b a b l y been mi s u s e d o r whatever. I f I was t o a p p l y somewhere a g a i n — h o w u n d e r s t a n d i n g would t h e one who i s g o i n g t o h i r e m e — w o u l d he be a b l e t o u n d e r s t a n d t h a t t h e m e d i c a t i o n r e a l l y does c o n t r o l i t . The common i m p r e s s i o n t h e n , was t h a t t h e y w o u l d n ' t g e t h i r e d i f p e o p l e knew t h e y had s c h i z o p h r e n i a . Some s p e c u l a t e d t h a t even i f t h e y d i d g e t h i r e d , h a v i n g i n f o r m e d t h e employer about t h e i l l n e s s , t h e y would be t r e a t e d " d i f f e r e n t l y " . T h a t ' s a n o t h e r r e a s o n I t h i n k I don't t e l l p e o p l e about my i l l n e s s . Because i f t h e y know a n y t h i n g t h e y say, " I s t h i s t o o h a r d f o r you?" " I s t h a t t o o h a r d f o r you?" I mean, i f you t o l d t h e g e n e r a l o f f i c e p e r s o n e l t h a t was t h e problem, and t h e y weren't aware o f i t , you'd f r e a k them o u t . I f you worked i f a b i g o f f i c e t h a t employed a l o t o f p e o p l e and i t was common knowledge t h a t y o u x r e s c h i z o p h r e n i c , I t h i n k t h e y would t r e a t you a l i t t l e d i f f e r e n t . 96 One p a r t i c i p a n t d e s c r i b e d a s i t u a t i o n from h i s own work e x p e r i e n c e i n w h i c h a co-worker w i t h s c h i z o p h r e n i a was t r e a t e d " d i f f e r e n t l y " . W e l l when I was w o r k i n g a t s h i p p i n g and r e c i e v i n g a n o t h e r guy g o t h i r e d who was s c h i z o p h r e n i c . The boss used t o t a l k t o him a l l t h e t i m e as i f he was a dumby and he ne v e r s t o p p e d . He was always e x p l a i n i n g and r e -e x p l a i n i n g t h i n g s t o him. I c o u l d n ' t h a n d l e t h a t . Some p a r t i c i p a n t s were c o n c e r n e d about c o - w o r k e r s ' r e p o n s e s . F o r example, one p e r s o n was w o r r i e d about c o - w o r k e r s u s i n g t h e i n f o r m a t i o n t o t a k e advantage o f him. One o f t h e t h i n g s t h a t r e a l l y s c a r e s me about t e l l i n g p e o p l e y o u ' r e s c h i z o p h r e n i c i s t h a t t h e y can r e a l l y t u r n a g a i n s t you. There's a l o t o f s c a r r y p e o p l e o ut t h e r e . There's a l o t o f n a s t y v i n d i c t i v e p e o p l e . . . I don't r e a l l y want p e o p l e t o know because t h e y c o u l d m a n i p u l a t e you so e a s i l y i f yo u ' r e f e e l i n g bad and t h e y wanted t o . A n o t h e r p a r t i c i p a n t was w o r r i e d t h a t c o - w o r k e r s would h o l d him i n low esteem, i f t h e y knew about h i s i l l n e s s . I t r e d u c e s y o u r c r e d i b i l i t y . When you work f o r somebody, I don't c a r e what p o s i t i o n y o u ' r e i n , and t h e h i g h e r up you go i n a company o r a p r o f e s s i o n s u p p o s e d l y you have ah—now when you have s c h i z o p h r e n i a you remove you c r e d i b i l i t y . They v i e w you as a weak l i n k . P a r t i c i p a n t s d i d n o t i n f o r m p r o s p e c t i v e employers about t h e i l l n e s s because t h e y b e l i e v e d t h a t t h e y w o u l d n ' t g e t h i r e d , o r i f h i r e d , t h e y would be t r e a t e d d i f f e r e n t l y . Some p a r t i c i p a n t s had a n o t h e r r e a s o n f o r n o t i n f o r m i n g p r o s p e c t i v e e m p l o y e r s . They b e l i e v e d t h a t i n f o r m a t i o n about m e d i c a l p r o b l e m s , such as s c h i z o p h r e n i a , was p e r s o n a l and had n o t h i n g t o do w i t h t h e j o b . 97 L i k e t h a t ' s s o r t o f your p e r s o n a l l i f e and you s h o u l d n ' t have t o go t o y o u r boss u n l e s s i t a f f e c t s y o u r work and t h a t s o r t o f t h i n g . You've g o t enough w o r r i e s as i t i s , r a t h e r — r a t h e r t h a n s a y i n g , "by t h e way I'm s c h i z o p h r e n i c . " "Oh r e a l l y ! W e l l we won't see you tomorrow." You don't need t h a t . I f a p e r s o n i s n ' t d o i n g w e l l a t t h e i r j o b , maybe t h e y need t o be l a i d o f f . T h a t ' s f o r a n y b o d y — b u t n o t j u s t because you've g o t t h e name a t t a c h e d t o i t . I d on't t h i n k t h e y need t o know. I t h i n k t h a t ' s s omething t h a t ' s p r i v a t e . I don't t h i n k i t would h e l p a t a l l t o l e t them know. One p a r t i c i p a n t s a i d she had asked o t h e r p e o p l e whether t h e y t o l d employers about t h e i r s c h z o p h r e n i a . They a l s o t h o u g h t t h e i l l n e s s was p r i v a t e and d i d n ' t need t o be r e v e a l e d . I a s k ed them what t h e y ' d done about t e l l i n g t h e i r employer and t h e y s a i d , "No. I t ' s none o f t h e i r b u s i n e s s as l o n g as you do y o u r j o b . " Some p a r t i c i p a n t s d i d n o t l i k e h a v i n g t o c o n c e a l t h e i l l n e s s . As one i n d i v i d u a l s a i d , " I don't t h i n k I ' d l i k e l y i n g about i t . "Other p a r t i c i p a n t s f e l t c o m f o r t a b l e w i t h t h i s d e c i s i o n . So I chose n o t t o t e l l them when I went t o t h e s h i p p i n g and r e c i e v i n g . I d i d n ' t want them t o know. They weren't aware o f i t . Cause I s o r t o f r e j e c t i t . From what I've seen o f o t h e r p e o p l e , t h e y ' r e n o t a c c e p t e d . So I j u s t t r y t o go my merry way. T r y t o a v o i d i t . Most were c e r t a i n t h a t i t was t h e b e s t d e c i s i o n . They say, "have t h e r e been any s e r i o u s m e d i c a l problems i n t h e p a s t ? " and I e i t h e r l e f t i t b l a n k , w h i c h I don't know i f I s h o u l d o r s h o u l d n o t have. But I ' d p u t d e p r e s s i o n . D e p r e s s i o n seems t o be a n i c e c o v e r up, o r c h r o n i c f a t i g u e syndrome; a n y t h i n g . . . So I d i d t h e b e s t t h i n g t o do. 98 I n summary, t h e o n s e t o f i l l n e s s s i g n a l l e d f o r a l l p a r t i c i p a n t s t h e b e g i n n i n g o f an e x p e r i e n c e o f r e p e a t e d l y l o o k i n g f o r work. P a r t i c i p a n t s used a wide range o f r e s o u r c e s when l o o k i n g f o r work, i n c l u d i n g s p e c i a l i z e d employment s e r v i c e s and i n f o r m a l n e t w o r k i n g . They made use of s e r v i c e s a v a i l a b l e t o t h e g e n e r a l p u b l i c as w e l l as s e r v i c e s d e s i g n e d f o r p e o p l e w i t h m e n t a l i l l n e s s . A t c e r t a i n t i m e s i t was n o t d i f f i c u l t f i n d i n g a j o b , p a r t i c u l a r l y i n t h e 1970*s and p a r t i c u l a r l y when p a r t i c i p a n t s a c c e p t e d any j o b . A t o t h e r t i m e s i t was more d i f f i c u l t t o f i n d a j o b , p a r t i c u l a r l y when p a r t i c i p a n t s were more s e l e c t i v e about t h e work c o n d i t o n s . P a r t i c i p a n t s d i d n o t u s u s a l l y i n f o r m p r o s p e c t i v e employers about t h e i l l n e s s . The t h r e e r e a s o n s f o r n o t t e l l i n g employers i n c l u d e d ; t h e y w o u l d n ' t g e t h i r e d , t h e y would be t r e a t e d d i f f e r e n t l y , and t h e y d i d n ' t need t o g i v e p e r s o n a l i n f o r m a t i o n t o employers. P a r t i c i p a n t s had d i f f i c u l t y knowing how t o d e a l w i t h q u e s t i o n s about t h e i r a b i l i t i e s and about t h e i r work h i s t o r y . Some - p a r t i c i p a n t s " c o v e r e d up" t h e i r i l l n e s s by f i l l i n g i n gaps i n t h e resume. O t h e r s t o l d employers t h a t t h e y had some o t h e r i l l n e s s . W o r king Day t o Day As i n d i c a t e d from t h e p r e v i o u s d i s c u s s i o n , a l l t h e p a r t i c i p a n t s had been a b l e t o o b t a i n j o b s . P a r t i c i p a n t s d e s c r i b e d some o f t h e i r day t o day e x p e r i e n c e s a t t h e s e j o b s . Many o f t h e changes e x p e r i e n c e d w i t h t h e i l l n e s s a f f e c t e d t h e 99 day t o day j o b e x p e r i e n c e . F o r some, t h e changes i n t h i n k i n g and p e r c i e v i n g a f f e c t e d t h e d e s i r e t o go t o work. I f o u n d t h a t I t h o u g h t everybody was s p e a k i n g about me. So t h a t was r e a l l y h a r d t o g e t up and go t o work e v e r y d a y , because you always f e l t bad about g o i n g t o work. I f e l t f a i r l y u n r e a l b e i n g t h e r e . I f e l t l i k e I was a c t i n g t o be t h e r e b e c a u s e — f i r s t o f a l l , p a r t o f my symptoms was t h a t I had a s t r a n g e f e e l i n g o f b e i n g h e r e a t a l l . I mean b e i n g a person...So b e i n g a p e r s o n i n t h i s r o l e was even h a r d e r t h a n b e i n g i n my room where I. w o u l d n ' t have t o p r e t e n d w i t h anybody. I know t h a t I'm g o i n g t o go i n t o t h a t [ p a r a n o i a ] . I know i t ' s g o i n g t o g e t bad. You pop a p i l l b u t you know t h a t i t t a k e s q u i t e a w h i l e t o work and you don't want t o go t o work. You don't want t o be around p e o p l e . You f e e l l i k e you j u s t want t o s t a y home and do n o t h i n g . Once a t work changes i n t h i n k i n g and p e r c e i v i n g sometimes made i t d i f f i c u l t t o do t h e j o b e f f e c t i v e l y . The i l l n e s s i n t e r f e r e d w i t h some i n d i v i d u a l s ' m o t i v a t i o n and energy needed t o b e g i n t h e work. There's a n o t h e r p a r t t h a t comes i n t o p l a y a t work and t h a t i s — i t ' s n o t day dreaming and i t ' s n o t s l e e e p i n g . Something e l s e where y o u ' l l be s i t t i n g a t t h e desk b l a n k . I t ' s k i n d o f a no m o t i v a t i o n , and y o u ' l l s i t t h e r e f o r an hour o r two, s l i g h t l y dose and i t ' s l i k e , t h e b r a i n j u s t k i n d o f s h u t s down. A t o t h e r t i m e s t h e s e changes i n t e r f e r e d w i t h t h e a b i l i t y t o c a r r y out work t a s k s . I t ' s d e f i n i t l y h a r d t o work when yo u ' r e f e e l i n g bad. I t ' s h a r d t o t h i n k s t r a i g h t . I t ' s h a r d t o o r g a n i z e . I t ' s h a r d t o p u t t h i n g s i n p e r s p e c t i v e o f what has t o be done f i r s t . I f you've g o t t h i s s t u f f r a c i n g around i n y o u r head--p e o p l e want t o k i l l you, and t h i s guy [ t h e employer] he's o n l y s e n d i n g me h e r e because he wants t o s e t me up; so I'm a l o n e t h e r e . You know t h a t k i n d o f t h i n g . I t ' s v e r y h a r d t o c o n c e n t r a t e on what y o u ' r e d o i n g because so much e l s e i s r u n n i n g around i n y o u r head. 100 The d e c r e a s e d a b i l i t y t o t o l e r a t e s t r e s s a f f e c t e d work as w e l l . Sometimes t h e work environment and work e x p e c t a t i o n s became overwhelming f o r a number o f p a r t i c i p a n t s . I s t a r t e d w i t h t h e l e t t e r s , and I s t a r t e d d o i n g q u i t e h a p p i l y , and t h e n o f c o u r s e t h e man came around and s a i d , "we'd l i k e you t o go a b i t f a s t e r " , because i t was p i l i n g up. I guess I was s l o w i n g down. The more r e p e t i t i v e i t became, I would s t a r t l o o k i n g a t t h e l e t t e r s and I c o u l d n ' t r e a d . As t h e h o u r s went on, i t was l i k e l o o k i n g a t a f o r e i g n language. So v i s u a l t h i n g s s t a r t e d happening because I was i n a h u r r y and because o f t h e r e p e t i t i v e n e s s o f i t and t h e s t r e s s o f b e i n g a c c u r a t e [and] p u t t i n g i t i n t h e r i g h t s l o t . I s h u t down j u s t l i k e a computer you might say, where I c o u l d n ' t r e a d , and so i t went so p a i n f u l l y s l o w t h a t I s t a r t e d g e t t i n g p a n i c k y b e c a u s e — I ' l l g e t s c o l d e d because I c a n ' t do t h i s , so a t l u n c h t i m e I s a i d , "I'm s o r r y I c a n ' t do t h i s , " and I went home. As i n d i c a t e d i n t h e above d e s c r i p t i o n , t h e s t r e s s from t h e work s i t u a t i o n sometimes b r o u g h t out p s y c h o t i c symptoms such as v i s u a l h a l l u c i n a t i o n s o r i l l u s i o n s . A t o t h e r t i m e s t h e p s y c h o s i s came about w i t h o u t a p p a r e n t s t r e s s and r e n d e r e d t h e p e r s o n i m c a p a b l e o f w o r k i n g t h u s , t h e u n p r e d i c t a b i l i t y o f t h e e p i s o d e s a f f e c t e d t h e work e x p e r i e n c e . I remember one day I was i n t h e o f f i c e t a l k i n g on t h e phone. I t was l i k e my h e a d — t h e i n s i d e o f my head r o l l e d o v e r , l i t e r a l l y . S o r t o f s h i f t e d . You know what, you e v e r seen a p i l o t ? A j e t p i l o t has a helmet w i t h a b i g v i s e r t h a t d i p s down. I t was l i k e t h e whole i n s i d e o f my head d i p p e d f o r w a r d and I b a s i c a l y was d r a p e d o v e r t h e desk, no energy. I remember t h i s chap I know, and h i s eyes were l i k e p i n k p e a r l s you know. He l a t e r s a i d t h a t I was f a i r l y c o h e r e n t b u t n o t r e a l l y t o o i n t u n e w i t h what was g o i n g on, and he was t a l k i n g l i k e -- i t was l i k e i f I was s t a n d i n g i n a d i f f e r e n t room and he was t a l k i n g t o someone e l s e . I ended up h a v i n g a breakdown a t work, where I went t o t h e bathroom and t o o k t o o t h b r u s h e s and haircombs and t h r e w them i n t h e garbage. And t h e r e was an o l d p a i r o f 101 shoes and I s l i c e d them up and o v e r t u r n e d t h e garbage and I w a s — I don't know whether I was h a l l u c i n a t i n g , but I had t h i s r u s h o f energy and I t h o u g h t I had t o so something on my own. Oth e r changes t h a t a f f e c t e d t h e work e x p e r i e n c e i n c l u d e d t h e changes i n s e n s i t i v i t y t o s t i m u l i . Those who had an i n c r e a s e d s e n s i t i v i t y t o l i g h t and sound found t h a t i t made some j o b s d i f f i c u l t t o do. I worked a t t h e p a c k i n g house and I had t o wear e a r p l u g s . L i k e t h e y had machinery n o i s e j u s t c o n s t a n t l y and i f I hadn't worn e a r p l u g s I'm s u r e I c o u l d n ' t have done t h e j o b . Even now when I'm w o r k i n g — l i k e t h e o t h e r day I was t r y i n g t o work on t h e computer and t h e r e was a l o t o f c l i e n t s coming and t a l k i n g t o me. L i k e a f a m i l y came i n w i t h two l i t t l e k i d s and I found i t v e r y d i f f i c u l t . I d on't know whether my eyes were b o t h e r i n g me o r t h e n o i s e o f t h e p h o t o c o p i e r , b u t t h a t j o b o n l y l a s t e d f o u r h o u r s . . . I t was a l s o i n an e n c l o s e d environment where t h e r e were a l o t o f n o i s e s such a s — l i k e a i r c o n d i t i o n e r s and so on. They t e n d t o b o t h e r me. I've alway s been b o t h e r d a l i t t l e b i t by a r t i f i c i a l l i g h t s . . . . S o t h e o u t s i d e n o i s e s and t h e b i t i f t h e f l i c k e r i n g o f t h e l i g h t s b o t h e r e d me. The c a s h i e r j o b s were, I t h i n k , i r r i t a t i n g because o f t h e c o n s t a n t n o i s e o f t h e machine. The t i c k - t i c k - t i c k o f t h e b u t t o n s and t h e n o i s e from t h e c a s h drawer and t h e n o i s e i n t h e s t o r e . . . I t wasn't a p e a c e f u l environment. And r a t h e r t h a n t u n i n g t h o s e o u t , t h o s e became t o o much i n t h e m s e l v e s , o I guess o t h e r p e o p l e t u n e them o u t — t h e y seemed t o be t o o overwhelming. As i n d i c a t e d from t h e a c c o u n t s p r o v i d e d , t h e n a t u r e o f t h e changes i n t h i n k i n g , p e r c e i v i n g , s e n s i t i v i t y t o s t i m u l i , and so on a f f e c t e d each p a r t i c i p a n t s work e x p e r i e n c e s by i n t e r f e r r i n g , a t t i m e s , w i t h t h e d e s i r e t o go t o work and t h e a b i l i t y t o f u n c t i o n a t work. A l s o i n c l u d e d i n t h e a c c o u n t s o f t h e i l l n e s s e x p e r i e n c e were d e s c r i p t i o n s o f changes r e s u l t i n g from m e d i c a t i o n use. Some o f t h e p a r t i c i p a n t s 102 f o u n d t h a t t h e s e changes a l s o a f f e c t e d t h e day t o day work e x p e r i e n c e . Many s a i d t h a t s i d e e f f e c t s o f m e d i c a t i o n , s p e c i f i c a l l y t h e changes t o energy l e v e l a f f e c t e d t h e work e x p e r i e n c e , p a r t i c u l a r l y a t t h e b e g i n n i n g o f t r e a t m e n t when t h e i n d i v i d u a l was f i n d i n g t h e optimum dosage. The f i r s t s i x months, I was so s l e e p y and so s l o w and e v e r y t h i n g . That never happened t o me b e f o r e and I t h o u g h t I might never work a g a i n . I was t a k i n g 5 mg o f h a l d o l w h i c h i s q u i t e a low amount, i n t a b l e t form. But I c o u l d n ' t work. I c o u l d n ' t do a n y t h i n g . I was l i k e a zombie. I was so l e t h a r g i c . I'm v e r y a c t i v e when I'm a t w o r k — v e r y f a s t . I r e a l l y l i k e t o g e t t h i n g s done q u i c k and I j u s t c o u l d n ' t . So I a c t u a l l y j u s t k e p t coming home. I' d d r i v e t o work i n t h e morning and I * d g e t t h e r e and 1 1 d s t a r t t o work and I ' d be so drugged out and I had t o come home. I f i n d I'm more upbeat i f I'm n o t on a n t i p s y c h o t i c s . . . A n d t h e r e ' s some p h y s i c a l work i n v o l v e d w i t h — w e l l w i t h s p e e d i l y g e t t i n g g r i p s on c l u b s and making s u r e you do i t i n a r e a s o n a b l e t i m e . You're w o r k i n g w i t h o t h e r p e o p l e t h a t a r e — m o s t o f them r e a l l y a r e n ' t on any m e d i c a t i o n s — m a y b e t a k i n g v i t a m i n s . . . They're r e a l l y n o t on any m e d i c a t i o n s and you b e i n g on m e d i c a t i o n you have t o h a v e — y o u a l r e a d y know what y o u r normal was and you have t o t h i n k , I'm d o i n g t h i s so slow...And t h e y ' r e t e l l i n g you t h e customers coming b a c k — h a v e you g o t t h a t done y e t . I f I'm on my meds, somebody might say, "come on move eh", b u t you c a n ' t go a g a i n s t t h e meds. The meds c o n t r o l e v e r y t h i n g i n y o u r body b o t h m e n t a l l y and p h y s i c a l l y . Some p a r t i c i p a n t s n o t i c e d o t h e r s i d e e f f e c t s o f t h e m e d i c a t i o n , such as a s t u f f y nose o r a d r y mouth, when t h e y were a t work. These d i d n o t seem t o a f f e c t j o b p e rformance b u t were more o f a n u i s a n c e . I t ' s l i k e my mouth hangs open h a l f t h e t i m e , because I c a n ' t b r e a t h e t h r o u g h my nose because i t s a l l c l o g g e d up. Everyone a t work i s always t e l l i n g me y o u ' r e c a t c h i n g f l i e s . I know but I c a n ' t h e l p i t . 103 I g e t i t [a d r y mouth] more i f I'm on more meds o r t h e more I t a l k . . . L i k e I keep i t [a d r i n k ] i n t h e back. I don't l i k e t o e a t i n f r o n t o f c u s t o m e r s . When I go back t o g e t something I ' l l have a s i p . Because a l l I need i s a l i t t l e b i t o f t i m e and t h e n I can go back and t a l k . As j u s t d i s c u s s e d , p a r t i c i p a n t s d e s c r i b e d how b e i n g i l l a f f e c t e d t h e day t o day work e x p e r i e n c e . P a r t i c i p a n t s a l s o d i s c u s s e d how b e i n g d i a g n o s e d w i t h s c h i z o p h r e n i a a f f e c t e d t h e work e x p e r i e n c e . The r e a d e r w i l l r e c a l l t h a t p a r t i c i p a n t s t h o u g h t t h e y had been l a b e l l e d w i t h a s t i g m a t i z e d d i a g n o s i s . Because o f t h e p e r c e i v e d s t i g m a a t t a c h e d t o s c h i z o p h r e n i a , most p a r t i c i p a n t s d i d n o t i n f o r m employers about t h e i l l n e s s . T h i s i n t u r n had an impact on d a i l y work e x p e r i e n c e s . S i n c e p a r t i c i p a n t s d i d n o t want t o t e l l c o - w o r k e r s about t h e i r i l l n e s s , t h e y had t o d e a l w i t h d i f f i c u l t work s i t u a t i o n s a l o n e . There were t i m e s when I j u s t c o u l d n ' t cope. L i k e you've g o t t o a c t l i k e n ormal. L i k e p e o p l e come and t a l k t o you and you've g o t t o a c t l i k e e v e r y t h i n g ' s ok. You c a n ' t r e a l l y t u r n around t o t h e s e p e o p l e a t work and say, " q u i c k man, I t h i n k somebody's t r y i n g t o k i l l me." That was a l o t o f p r e s s u r e . I f you don't t e l l them y o u ' r e s c h i z o p h r e n i c , you've g o t t o s a y, " l o o k , I'm i l l . " And t h e y say, " w e l l you g e t back t o work. Whats wrong w i t h you?" You don't want t o appear t o be d i f f e r e n t o r a n y t h i n g . One t i m e when I had a s t r e s s a t t a c k and my c h e s t t i g h t e n e d up, t h e y t h o u g h t I was h a v i n g a h e a r t a t t a c k . That was j u s t as w e l l because I d i d n ' t want t o t e l l them about my i l l n e s s . Because t h e y d i d n ' t want employers and c o - w o r k e r s t o know t h a t t h e y had s c h i z o p h r e n i a , many p a r t i c i p a n t s f e l t as though t h e y were p u t t i n g on a f a c a d e o r p r e t e n d i n g t o be normal and t h i s i n t r o d u c e d a d d i t i o n a l s t r e s s . 104 I've been w e l l enough t o p r e t e n d t h a t I'm n o t i l l a t a l l . So t h e r e ' s t h e s t r e s s o f b e i n g — o f o n l y b e i n g say 70 p e r c e n t w e l l b u t t r y i n g t o f u n c t i o n a t 100 p e r c e n t . So t h a t 30 p e r c e n t i s a r e a l s t r e s s f a c t o r and t h e n i t was v e r y h a r d t o e x p l a i n . I was v e r y o f t e n f a t i g u e d o r d i d n ' t want t o do e x t r a t h i n g s . L i k e t h e y ' d say can you work as a s p a r e , and I ' d always say no. A number e x p l a i n e d t h a t w h i l e t h e y were p r e t e n d i n g t o be n o r m a l , t h e y w o r r i e d about what co-workers t h o u g h t o f them and t h e i r work performance. Your mind's c o n s t a n t l y c l u e i n g i n t o — d o t h e y t h i n k I'm normal? T h i s f a c a d e problem i s n o t j u s t w i t h an employer. I t ' s b a s i c a l l y t h e whole i l l n e s s . A p e r s o n wants t o keep up appearances. But a t t h e same t i m e you s o r t o f — y o u know y o u ' r e n o t f u n c t i o n i n g r i g h t , so you f e e l l i k e y o u ' r e p r e t e n d i n g t o be b e t t e r t h a n you a r e . I f e l t l i k e I was i n a p l a y . And a t home I t o o k o f f t h e costume and c o u l d be m y s e l f a g a i n . So t h e r e was a l o t o f , as I say, p r e t e n d . And i t t o o k a l o t o f energy. And a l o t o f t i m e I s p e n t t h i n k i n g how I appeared t o everyone e l s e . By t h a t I mean I was d o i n g my work but t h i n k i n g , i s t h a t p e r s o n t h i n k i n g t h a t I'm g o i n g f a s t enough on t h e c a s h and n o t making any m i s t a k e s and b e i n g a good s a l e s p e r s o n ? I s t h e manager w a t c h i n g me? A l l t h e s e t h i n g s were g o i n g o n — v e r y s e l f - c o n s c o u s . Not o n l y d i d p a r t i c i p a n t s w o r r y about what co - w o r k e r s t h o u g h t o f them and t h e i r j o b performance s e v e r a l were c o n c e r n e d t h a t t h e employer and co-workers would d i s c o v e r t h e i r s e c r e t . There's one guy t h e r e t h a t must know, because h i s b r o t h e r used t o l i v e i n one o f t h e s e houses. I don't know i f h i s b r o t h e r has s c h i z o p h r e n i a , b u t h i s b r o t h e r knows me t h r o u g h [ t h e c l u b h o u s e ] so he k n o w s — u n l e s s he has f i r s t hand e x p e r i e n c e o f what i t s l i k e because o f h i s b r o t h e r . . . S o I g o t a l i t t l e w o r r i e d when I found out t h a t — o h no, he's g o i n g t o t e l l t h e r e s t o f t h e p e o p l e I work w i t h , and t h e y ' d go, "oh r e a l l y . " So, I don't know. So f a r so good. P e o p l e t h a t I know—when t h e customer comes i n and I know them, I g e t nervous t h a t t h e s t a f f w i l l f i n d out...Guys t h a t I know from [ t h e c l u b h o u s e ] come i n and t h e y keep me r u n n i n g , b u t I don't t h i n k t h e y ' l l s a y, "oh he's s c h i z o " . 105 As d e s c r i b e d , b e i n g i l l and b e i n g d i a g n o s e d w i t h s c h i z o p h r e n i a a f f e c t e d t h e day t o day work e x p e r i e n c e s . F r e q u e n t l y , b e i n g i l l and b e i n g " l a b e l l e d " r e s u l t e d i n t h e p e r s o n h a v i n g t o t a k e a break d u r i n g t h e workday, h a v i n g t o q u i t o r b e i n g f i r e d . Some p a r t i c i p a n t s e x p l a i n e d t h a t because o f t h e problems r e l a t e d t o b e i n g i l l , t h e y had t o t a k e a br e a k from work i n t h e m i d d l e o f t h e workday. One t i m e I had t o ask t h e f i r s t a i d a t t e n d a n t t o l e t me go i n one o f t h e rooms and have a r e s t f o r an hour o r so, because I was so s t r e s s e d on t h e j o b and I c o u l d n ' t keep up. Most i n d i v i d u a l s had q u i t a number o f j o b s because o f changes i n t h i n k i n g , p e r c e i v i n g and r e l a t i n g , and changes i n t o l e r a n c e f o r s t r e s s . W i t h some o f t h e s e e p i s o d e s I've had, where I t o o k o f f , where I t h o u g h t p e o p l e were t r y i n g t o murder me, I ' d j u s t q u i t i n t h e m i d d l e o f t h e day and r u n o f f i n t o t h e c i t y . E v e r y t i m e I g o t a j o b , I ' d g e t p a r a n o i d t h a t p e o p l e were t a l k i n g b e h i n d my back, s a y i n g n a s t y t h i n g s about me and s t u f f . And t h e n I 'd g e t w o r r i e d about whether I c o u l d do t h e j o b r i g h t , and t h e n I ' d q u i t . So I d i d t h a t on about 3 o r 4 j o b s . A l o t o f p e o p l e work f o r 3 o r 4 days a t a t i m e and t h e n c o u l d n ' t t a k e anymore. You're e n t h u s i a s t i c b e f o r e you s t a r t i t and you make i t t h r o u g h 3 o r 4 days t h e n t h e s t r e s s g e t s t o you. One p a r t i c i p a n t e x p l a i n e d how t h e s t r e s s o f h i d i n g t h e i l l n e s s s and p r e t e n d i n g t o be "normal" a f f e c t e d h e r a b i l i t y t o m a i n t a i n a j o b . I want t o appear normal t o everybody and t o be p l e a s a n t and t o c o n c e n t r a t e w h i l e a l l t h i s , a l l t h e s e p r o b l e m s , were g o i n g on i n s i d e . So t h e r e was t h e s t r e s s o f t h i n k i n g t h i n g s and f e e l i n g t h i n g s and t r y i n g t o keep a normal f a c a d e t o everybody so t h a t somebody d o e s n ' t come 106 up t o me and say, "whats g o i n g on? Maybe you s h o u l d n ' t be w o r k i n g . " I wanted t o g e t o v e r my p r o b l e m s , b u t t h e y c a u g h t up w i t h me and t h e n a t some p o i n t I t h o u g h t o f r u n n i n g o u t o f t h e r e , b u t I ' d u s u a l l y w a i t u n t i l t h e end of t h e day. And t h e n t h e n e x t day I ' d phone i n and say, " s o r r y , I c a n ' t make i t i n t o work anymore." Some p a r t i c i p a n t s d e s c r i b e d how t h e changes b r o u g h t about by t h e i l l n e s s s r e s u l t e d i n t h e i r b e i n g f i r e d . I s t a r t e d g e t t i n g p a r a n o i d o f t h e boss and s t u f f and maybe s u l k i n g w i t h t h e customers so I g o t f i r e d . I worked as a d i s h w a s h e r b u t I was a c t i n g so s t r a n g e and making obscene g e s t u r e s and s t u f f so t h e y f i r e d me. W h i l e no one wanted t o t e l l a p r o s p e c t i v e employer about t h e i r i l l n e s s , s e v e r a l employers e v e n t u a l y l e a r n e d t h a t t h e i n d i v i d u a l had s c h i z o p h r e n i a . Two i n d i v i d u a l s d e c i d e d t o t e l l t h e i r employers and a n o t h e r had a breakdown a t work r e s u l t i n g i n t h e employer's awareness o f t h e i l l n e s s . Two o t h e r s u b j e c t s d e c i d e d t o c o n f i d e i n c o - w o r k e r s . P a r t i c i p a n t s r e c i e v e d v a r i o u s r e s p o n s e s from employers and c o - w o r k e r s . Some p a r t i c i p a n t s e x p l a i n e d t h a t t h e i r employer responded i n a s u p p o r t i v e manner. I d i d t e l l [my employer] t h a t I was s c h i z o p h r e n i c and he was v e r y h e l p f u l . That was a t [ t h e employer's] c o n s t r u c t i o n [company]. But he o n l y knew v e r y l a t e r on. P r o b a b l y s i x o r seven months a f t e r I worked f o r him. But me and [ t h e employer] a c t u a l l y became q u i t e good f r i e n d s . He was my boss b u t he became a good f r i e n d . L i k e she's a good judge o f c h a r a c t e r . She's a good manager. She knows how I work and s t u f f . So I f e e l good i n a way about t h a t because, even though I'm s c h i z o p h r e n i c , she s t i l l w i l l g i v e me more r e s p o n s i b i l i t y w h i c h i s what I need i n a j o b t o o . Because I'm h i g h l y e d u c a t e d — b u t you don't g e t p e o p l e l i k e t h a t e v e r y day. I t o l d my s u p e r v i s o r i n t h e m a i l room t h a t I had e m o t i o n a l problems. T h i s made him more u n d e r s t a n d i n g 107 towards me. But a f t e r a w h i l e I was s t i l l p a r a n o i d about everybody i n t h e o f f i c e and I was alw a y s l a t e f o r work q u i t e o f t e n . I t was a temporary j o b , b u t t h e y were s t i l l g o i n g t o t r y — m y s u p e r v i s o r was s t i l l g o i n g t o t r y and g e t me on f u l l , on r e g u l a r . . . O t h e r p a r t i c i p a n t s d e s c r i b e d s i t u a t i o n s i n w h i c h employers and c o - w o r k e r s seemed t o be a m b i v a l e n t o r u n c e r t a i n about how t h e y f e l t . T here i s someone a t work, t h a t I work w i t h most o f t h e t i m e , and he goes, "Don't t a l k about i t i n f r o n t o f t h e customers i f you can a v o i d i t . " He d o e s n ' t mind i f i t ' s maybe one customer and I'm t a l k i n g about i t i n a l i g h t s o r t o f way b u t , he s a i d , " I t c o u l d s c a r e some customers o f f because you say t h a t word and p e o p l e t h i n k — y o u m i g h t as w e l l say you've g o t dynamite i n y o u r hand o r some t h i n g . " One p a r t i c i p a n t i n d i c a t e d t h a t , i n i t i a l l y , t h e employer was u p s e t when he l e a r n e d about t h e i n d i v i d u a l ' s i l l n e s s . He goes, "What t h e h e l l i s g o i n g on h e r e ? How come I d i d n ' t know?" He s a y s , " I mean you can s o r t o f check o u t a n y t i m e . " I s a y s , " I t was my own f a u l t f o r n o t t a k i n g my meds." He f e l t a l i t t l e funny. I gave him a pamphlet on what i t was about. Whether he u n d e r s t o o d i t — t w o and a h a l f y e a r s and d o i n g my j o b and I guess he s a i d , " W e l l he's d o i n g f i n e so f a r , i f t h e s t u p i d i d i o t t a k e s h i s meds." L a t e r t h i s employer d i d n o t show much c o n c e r n about t h e f a c t t h a t t h e employee had s c h i z o p h r e n i a . I gave him t h e pamphlet. He ne v e r a s k e d — n e v e r mentioned i t s i n c e . We never r a i s e t h e s u b j e c t . I t ' s a l m o s t l i k e i t never happened. We had a c o u p l e o f t a l k s about what i t i s n ' t — r e a l l y I'm n o t g o i n g t o f a l l down f r o t h i n g on t h e c o n v e n t i o n f l o o r o r something, b u t — I don't know, we never s a t down and d i s c u s s e d i t . The o f f i c e t e n d s t o be v e r y i m p e r s o n a l . There's s o r t o f — y o u l e a v e y o u r s t u f f a t t h e door. A n o t h e r p a r t i c i p a n t found t h a t when she i n f o r m e d e m p l o y e r s , t h e y were unconcerned. 108 I've found as I go t h r o u g h t h e y e a r s — a s l o n g as you do y o u r j o b — y o u don't do a n y t h i n g t h a t ' s t o o o b v i o u s l y d i f f e r e n t t h a n anybody e l s e , most p e o p l e a r e happy w i t h you. Even i f you t e l l d i f f e r e n t p e o p l e about y o u r i l l n e s s , i f y o u ' r e a c t i n g i n a way t h a t ' s a c c e p t a b l e t o them, t h e y d o n ' t — t h e y l e a v e y o u — a n y w a y s , t h e y t h i n k y o u ' r e f i n e . One p a r t i c i p a n t e x p l a i n e d t h a t she t h o u g h t an employer had been u n s u p p o r t i v e . She s a i d t h a t she had been l a i d o f f s h o r t l y a f t e r she had c o n f i d e d i n a co-worker and t o l d him about h e r i l l n e s s . She s t a t e d , " I had a j o b p r e v i o u s t o t h a t where I t o l d them, and I'm p r e t t y s u r e t h a t ' s when I g o t l a i d o f f . I t s h a r d t o know what t o do." I n a l l b u t t h i s l a s t s i t u a t i o n , when p a r t i c i p a n t s i n f o r m e d e mployers about t h e i r i l l n e s s , t h e i r j o b s were m a i n t a i n e d . I t s h o u l d be n o t e d t h a t i n a l l b u t t h e l a s t s i t u a t i o n , i n w h i c h t h e i n d i v i d u a l had o n l y worked f o r a few weeks, p a r t i c i p a n t s had worked f o r t h e employer f o r s e v e r a l months and, i n some c a s e s , s e v e r a l y e a r s . I t s h o u l d a l s o be p o i n t e d o u t t h a t one p a r t i c i p a n t q u i t h i s j o b and was r e h i r e d l a t e r by an employer who knew about t h e i n d i v i d u a l ' s i l l n e s s . W h i l e p a r t i c i p a n t s were concerned about i n f o r m i n g e mployers, t h o s e who d i d so a f t e r w o r k i n g f o r s e v e r a l months, t e n d e d t o be met w i t h s u p p o r t i v e , o r a t l e a s t n o t d e t r i m e n t a l r e s p o n s e s . P a r t i c i p a n t s had v a r i o u s ways o f r e s p o n d i n g t o coworkers and employers f o l l o w i n g t h e d i s c l o s u r e . One p a r t i c i p a n t a v o i d e d t h e use o f t h e word " s c h i z o p h r e n i a " and f o c u s e d on a m e d i c a l e x p l a n a t i o n o f h i s i l l n e s s . 109 I t e l l p e o p l e I t a k e an a n t i p s y c h o t i c d r u g . And as soon as you use t h e word " p s y c h i a t r y " t h e y k i n d o f g e t a l i t t l e funny. And I say t h e r e a s o n f o r t h a t i s b a s i c a l l y my b r a i n p r oduces t o o much dopamine, and i t j u s t compensates, b l o c k s i t o u t . And t h e y seem t o be q u i t e happy w i t h t h a t . I t h i n k i f you use t h e word s c h i z o p h r e n i a , t h e y t e n d t o r e a l l y g e t funny because t h e y ' v e h e a r d t h e word, b u t t h e y have r e a l l y no i d e a what i t means o r what i t s about. So I j u s t t e l l them b a s i c a l l y about my b r a i n p r oduces t o o much o f one t y p e o f c h e m i c a l and t h a t s i t . And I t a k e t h e s e p i l l s t o combat i t and t h e y ' r e much h a p p i e r w i t h t h a t e x p l a n a t i o n t h a n t o t e l l them y o u ' r e s c h i z o p h r n e i c . A n o t h e r p a r t i c i p a n t used humor as a way o f d e a l i n g w i t h t h e s i t u a t i o n . He k n o w s— I guess I t o l d him [my co-worker] b e f o r e I t o l d h i s f a t h e r [ t h e e m p l o y e r ] . . . I guess j u s t making a j o k e o u t o f i t and s a y i n g , "but I'm n o t c r a z y . " And I s a i d , "so don't t e l l y o u r dad." And he j u s t l a u g h e d , and t h e y don't make a b i g t h i n g o f i t , so I don't keep b r i n g i n g i t up. W h i l e i t may appear t h a t t h e p a r t i c i p a n t ' s work e x p e r i e n c e s were u n p l e a s a n t , p a r t i c i p a n t s d i d sometimes f i n d work t h a t was s a t i s f y i n g . The o n l y s u c e s s f u l j o b I had d u r i n g t h a t p e r i o d was a t t h e [summer e v e n t ] as a s e c u r i t y guard...Which I d i d t h a t f o r about t e n summers a n d — ah, j u s t s t a n d i n g t h e r e I d i d n ' t have t o w o r r y about m u c h — j u s t s t a n d i n g t h e r e . E x c e p t I was s t i l l w o r r i e d about what p e o p l e t h o u g h t o f m e — p a r a n o i d s t i l l . B u t , my f e e t — I g o t t i r e d . I d i d n ' t have t o — n o one c o u l d t e l l t o o much about me, so I s u r v i v e d f o r a s e c u r i t y g u a r d . One j o b t h a t worked o ut v e r y w e l l f o r me, was a j o b where I was my own boss and I was d o i n g an i n v e n t o r y f o r some a r t work...So t h a t j o b was t h e b e s t because I was my own bo s s . Of t h o s e p a r t i c i p a n t s who were c u r r e n t l y w o r k i n g , s e v e r a l s a i d t h a t t h e y e n j o y e d t h e i r j o b . I l i k e t h e p a r t - t i m e work I'm d o i n g now because i t ' s i n t h e m e n t a l h e a l t h f i e l d where I want t o w o r k . . . I t ' s v e r y r e w a r d i n g . 110 L i k e I'm i n an o f f i c e a l l t h e t i m e now. T h a t ' s ok. And I l i k e my work. I l i k e my j o b . I t ' s i n t e r e s t i n g , but t h e r e ' s a l o t o f o t h e r t h i n g s I'm i n t e r e s t e d i n . So maybe t h e r e ' s a few y e a r s i n t h e r e — t h e n l o o k around o r something. The f o l l o w i n g summarizes t h e p a r t i c i p a n t ' s day t o day work e x p e r i e n c e s . B e i n g i l l a f f e c t e d t h e day t o day work e x p e r i e n c e . That i s , each p e r s o n ' s work e x p e r i e n c e was a f f e c t e d by t h e n a t u r e o f t h e changes i n t h i n k i n g , p e r c e i v i n g and r e l a t i n g , s t r e s s t o l e r a n c e , and energy and psychomotor a c t i v i t y . Each p e r s o n ' s r e s p o n s e t o b e i n g d i a g n o s e d w i t h s c h i z o p h r e n i a a f f e c t e d t h e i r work e x p e r i e n c e . Some p a r t i c i p a n t s , i n t r y i n g t o h i d e t h e i r d i a g n o s i s , had t o d e a l w i t h a d d i t i o n a l s t r e s s and wo r r y . Many p a r t i c i p a n t s had t o q u i t , o r were f i r e d from t h e i r j o b s . When employers were i n f o r m e d o f t h e i n d i v i d u a l ' s i l l n e s s , some were s u p p o r t i v e , o t h e r s were somewhat a m b i v a l e n t and one seemed u n s u p p o r t i v e . A l l b u t t h i s l a t t e r employer had been a p p r i s e d o f t h e s i t u a t i o n s e v e r a l months o r y e a r s a f t e r h i r i n g t h e i n d i v i d u a l and had c o n t i n u e d t h e i n d i v i d u a l ' s employment. F o l l o w i n g d i s c l o s u r e o f t h e i r d i a g n o s i s , many p a r t i c i p a n t s c o n t i n u e d t o a v o i d t h e use o f t h e word " s c h i z o p h r e n i a . " One p a r t i c i p a n t u s e d m e d i c a l terms when d i s c u s s i n g h i s i l l n e s s . One used humor when d i s c u s s i n g h i s i l l n e s s . S e v e r a l p a r t i c i p a n t s had, i n t h e p a s t , found a j o b o r two t h a t was s a t i s f a c t o r y . Of t h o s e c u r r e n t l y w o r k i n g , s e v e r a l s t a t e d t h a t t h e y e n j o y e d t h e i r work. I l l W o rking Year t o Year I t i s e v i d e n t from t h e p r e v i o u s d i s c u s s i o n t h a t most p a r t i c i p a n t s changed j o b s many t i m e s . They e x p e r i e n c e d what one p a r t i c i p a n t r e f e r r e d t o as a " r o c k y r o a d " i n terms o f employment. T h i s r o c k y r o a d i n c l u d e d p e r i o d s o f unemployment, w h i c h f o r some were q u i t e l e n g t h y . One p a r t i c i p a n t , who hadn't worked f o r f i v e y e a r s , s t a t e d , "now I c a n ' t t a k e work a t a l l , n o t a t a l l . " A n o t h e r p a r t i c i p a n t , t hough c u r r e n t l y w o r k i n g , had gone t h r o u g h many p e r i o d s o f unemployment when he was younger. He s t a t e d , " I guess you c o u l d say t h e symptoms were so s e v e r e t h a t I c o u l d n ' t keep w o r k i n g a t a l l . " D u r i n g p e r i o d s o f unemployment, some p a r t i c i p a n t s were i n h o s p i t a l . One i n d i v i d u a l s a i d , " I wasn't w o r k i n g because I was i n and out o f t h e h o s p i t a l e v e r y few months o r s o . " A t t i m e s , p a r t i c i p a n t s were w e l l enough t o l i v e a t home, b u t were n o t w e l l enough t o work. One p a r t i c i p a n t ' s comment e x m p l i f i e s t h e s t a t e m e n t s o f s e v e r a l o t h e r s . I've been c o p i n g w i t h t h e day t o day c o p i n g . T h i n g s l i k e p a r k i n g and t r a f f i c and c o o k i n g f o r y o u r s e l f and a l l t h e l i t t l e day t o day t h i n g s seem t o be enough, and w o r k i n g seems t o j u s t p u t me o v e r b o a r d . D u r i n g p e r i o d s when t h e y c o u l d work, most p a r t i c i p a n t s had gone t h r o u g h many j o b s . Some had so many j o b s t h a t t h e y s a i d i t was "hard t o keep t r a c k . " I m m e d i a t e l y a f t e r I g o t d i a g n o s e d I had a l o t o f j o b s , u n t i l I g o t i n w i t h [ t h e community s e r v i c e ] . But I've done a l o t o f d i f f e r e n t j o b s . 112 There were so many i t ' s h a r d t o keep t r a c k . Because I c a n ' t say t h a t I had o n l y one j o b e v e r y summer. There were s e v e r a l t h a t o n l y l a s t e d a s h o r t p e r i o d o f t i m e . I've changed j o b s so o f t e n t h a t I always l i k e l o o k i n g f o r a j o b . S o r t o f l i k e g o i n g t o manpower i s a smorgasboard o r something. C o n s i d e r i n g t h a t many o f t h e p a r t i c i p a n t s were i n t h e i r t h i r t i e s and f o r t i e s , i t i s n o t s u r p r i s i n g t h a t t h e y had worked a t many j o b s . However, even t h e younger p a r t i c i p a n t s had h e l d many j o b s . The youngest p a r t i c i p a n t had h e l d s i x j o b s s i n c e becoming i l l . The i n d i v i d u a l who had been i l l f o r o n l y two y e a r s had h e l d t h r e e j o b s d u r i n g t h a t t i m e p e r i o d . A n o t h e r n o t a b l e p o i n t i s t h a t p a r t i c i p a n t s ' j o b changes were n o t c a r e e r moves. That i s , t h e y were n o t o f t e n j o b changes w i t h i n t h e same o r r e l a t e d f i e l d o f work. P a r t i c i p a n t s h e l d numerous u n r e l a t e d t y p e s o f j o b s . The e a r l i e r ones t h a t I a p p l i e d f o r , because I d i d n ' t have much e x p e r e i n c e , were m o s t l y s a l e s p e r s o n , c a s h i e r j o b s . . . S o I've had a g r a b bag o f e x p e r i e n c e h e r e and t h e r e . I t t o o k a w h i l e t o f i n d what I n e e d e d — g a r d e n i n g wasn't i t . I ' d been d o i n g t h a t and banquet s e t ups, by y o u r s e l f . . . I ' d been d o i n g t h a t — s o I ' d worked a t a gas s t a t i o n , d e l i v e r e d p i z z a , b u t t h e r e ' d been o t h e r j o b s t h a t I ' d had. I had a paper r o u t e , bus boy, c o o k i n g a t [a r e s t a u r a n t ] and t h e n c o o k i n g a t [ a n o t h e r r e s t a u r a n t ] , t h e n a t s h i p p i n g and r e c i e v i n g and now a t [a s t o r e ] . So t h a t ' s about s i x j o b s a f t e r I g o t s i c k . As d i s c u s s e d b e f o r e , many o f t h e p a r t i c i p a n t s had r e p e a t e d l y q u i t j o b s . Some n o t i c e d t h a t e v e n t u a l l y t h e number o f a v a i l a b l e j o b s d i m i n i s h e d due t o b e i n g f i r e d from a j o b o r q u i t t i n g . Each t i m e a p a r t i c i p a n t l e f t a j o b , i t meant 113 a n o t h e r door was c l o s e d . As one p a r t i c i p a n t e x p l a i n e d , t h e i n d i v i d u a l would n o t l i k e l y be o f f e r e d a j o b t h e r e a g a i n . A l s o y o u r l i s t o f g o i n g back t o t h e s e p l a c e s becomes s h o r t e r and s h o r t e r because y o u ' r e a bad employee. And a l l o f a sudden you c a n ' t a p p l y f o r a p o s t o f f i c e j o b and you c a n ' t a p p l y a t t h a t c h a i n s t o r e , and you c a n ' t a p p l y t h e r e because you screwed up. W h i l e g o i n g t h r o u g h t h i s p a t t e r n o f s t a r t i n g and s t o p p i n g many j o b s i n d i v i d u a l s d i s c o v e r e d w h i c h t y p e s o f j o b s and work c o n d i t i o n s s h o u l d be a v o i d e d . I n some c a s e s t h e p e r s o n r e a l i z e d t h a t c e r t a i n j o b o r c a r e e r g o a l s would have t o be changed. I t ' s a b i t d e p r e s s i n g because o f a l l t h e dreams I had as a c h i l d . I know I'm g o i n g t o be d i f f e r e n t n o w — t h a t I'm g o i n g t o have t o a c c e p t t h a t even i f I do g e t a j o b t h a t i t may n o t be t h a t e x c i t i n g o r have advances i n i t t o r i s e up t h e l a d d e r , because t h e s t r e s s would be t o o g r e a t . So I've had t o humble m y s e l f t o an e x t e n t and t h i n k w e l l maybe I w i l l have t o be p o o r e r t h a n I t h o u g h t o r have a more s i m p l e c a r e e r t h a n I t h o u g h t . U n f o r t u n a t l y my problems have been a r o l l e r c o a s t e r . They come and go. And t h e y come back o f t e n enough t o t h i n k t h a t maybe I won't g e t t o do a l l t h e t h i n g s on my own t e r m s . I won't be a b l e t o do a l l t h e a m b i t i o n s t h a t I t h o u g h t because I was always smart so I had many a m b i t i o n s . I f e e l some r e g r e t t h a t I c a n ' t do what I m i g h t have been a b l e t o do when I g o t s i c k . L i k e I p r o b a b l y c o u l d have had a 30 o r 40 thousand d o l l a r a y e a r j o b . I f I wasn't s i c k , I c o u l d h a n d l e a l o t more s t r e s s t h a n I can. One p a r t i c i p a n t f e l t h e r a m b i t i o n s had i n c r e a s e d s i n c e t h e t i m e t h a t she had become i l l . I t h i n k I do have t h a t g o a l now. I n t h e p a s t my a r t was t h e most i m p o r t a n t t h i n g and I d i d j o b s t o pay t h e b i l l s . I wasn't m o t i v a t e d t o have a c a r e e r . L i k e now I w o u l d n ' t be c o n t e n t w i t h t h a t . So I t h i n k I'm a c t u a l l y more a m b i t i o u s . 114 A n o t h e r p a r t i c i p a n t s a i d t h a t o n l y a t c e r t a i n t i m e s was t h e r e a sense o f h a v i n g t o lo w e r a m b i t i o n s . When I was g e t t i n g d e p r e s s e d I t h i n k I f e l t t h a t way about a m b i t i o n s — l i k e s c h o o l , u n i v e r s i t y . So when I f e e l d e p r e s s e d , I t h i n k I've had t o l o w e r a m b i t i o n s , b u t o t h e r t i m e s I j u s t p u t i t o u t o f my mind r e a l l y . I n summary, many p a r t i c i p a n t s e x p e r i e n c e d p e r i o d s o f unemployment. When a b l e t o work, p a r t i c i p a n t s moved t h r o u g h numerous, u n r e l a t e d j o b s . Most p a r t i c i p a n t s i n d i c a t e d t h a t t h e i r j o b o p t i o n s d e c r e a s e d as t h e y f e l t u n a b l e t o r e t u r n t o j o b s t h e y had q u i t , and as t h e y l e a r n e d w h i c h work c o n d i t i o n s s h o u l d be a v o i d e d . Some p a r t i c i p a n t s f e l t d i s a p p o i n t e d t h a t t h e y had t o d e c r e a s e t h e i r j o b g o a l s . O t h e r s f e l t encouraged t h a t t h e y c o u l d s t i l l a c h i e v e t h e i r g o a l s and a m b i t i o n s . R esponding t o t h e Work E x p e r i e n c e P a r t i c i p a n t s d e s c r i b e d e m o t i o n a l r e s p o n s e s t o t h e work e x p e r i e n c e s j u s t d i s c u s s e d . Some o f t h e work e x p e r i e n c e s r e s u l t e d i n t h e p a r t i c i p a n t s f e e l i n g d i s c o u r a g e d , d i s a p p o i n t e d and e m o t i o n a l l y d e v a s t a t e d . W e l l i t was d e v a s t a t i n g f o r me because I alw a y s used t o w i n awards f o r good conduct and s t u f f when I was a younger k i d , and I was g e t t i n g good g r a d e s . And t h e n t o q u i t a j o b was r e a l l y d e v a s t a t i n g . The symptoms were so s e v e r e t h a t I c o u l d n ' t hack i t o u t . So I must have q u i t t w e n t y d i f f e r e n t j o b s o r so, and g o t f i r e d about f i v e t i m e s t o o . T h a t ' s even worse. W e l l t h a t ' s d e v a s t a t i n g t o o . So i t was a g r e a t d i s a p p o i n t m e n t a f t e r I g r a d u a t e d . I n s t e a d o f w o r k i n g a g a i n — w h e n I s t a r t e d h a v i n g p r o b l e m s — w h e n I was g e t t i n g d r e s s e d t o go t o work and I s t a r t e d c r y i n g o r f e e l i n g b l a n k o r r o b o t l i k e . I was d r i v i n g t o work and I went j u s t c o m p l e t l y b l a n k . And t h e f i r s t t h i n g I t h o u g h t was "oh no, oh no. I t ' s coming back a g a i n . Oh f o r heavens s a k e s . " 115 But t h e r e i s a l o t o f d e p r e s s i o n because o f d i s a p p o i n t m e n t s . And t h e r e a s o n I went back t o u n i v e r s i t y was t o make a l i f e f o r m y s e l f . So I'm n o t s a y i n g i t was a waste, but i t seems l i k e a waste so f a r . I had t o q u i t t h a t j o b and I h aven't worked s i n c e . I t has t o do w i t h f e a r o f i t because as I've s a i d , I've had t o q u i t so many t i m e s , whether i t ' s a few h o u r s o r a few months t h a t I g e t d i s c o u r a g e d and t h i n k I'11 n e v e r be a b l e t o work. Some p a r t i c i p a n t s a l s o f e l t a c e r t a i n amount o f embarrassment about n o t b e i n g a b l e t o work. Embarrassment was p a r t i c u l a r l y a c u t e when f r i e n d s o r a c q u a i n t a n c e s asked about work. One p a r t i c i p a n t ' s s t a t e m e n t i l l u s t r a t e s how o t h e r p a r t i c i p a n t s d e s c r i b e d t h e s i t u a t i o n . There was t h a t f e e l i n g o f embarrassment. I c o u l d n ' t keep u p — a n d e x p l a i n i n g t o p e o p l e — t h i s happened r e c e n t l y . E x p l a i n i n g t o p e o p l e I h a v e n ' t seen f o r y e a r s what y o u ' r e d o i n g . You're t h i n k i n g , oh I'm d o i n g n o t h i n g . But I j u s t say, "I'm i l l u s t r a t i n g " , so i t keeps them q u i e t and I don't have t o go i n t o f u r t h e r d i s c u s s i o n . Because I c a n ' t say, " w e l l a c t u a l l y I h a v e n ' t worked f o r two y e a r s . I j u s t watch TV and q u i l t . " Because t h e y would l o o k a t you v e r y s t r a n g e l y and say, "oh s o r r y I a s k e d . " I n a d d i t i o n , some p a r t i c i p a n t s i n d i c a t e d t h a t i t was e m b a r r a s s i n g t o meet former c o - w o r k e r s , e s p e c i a l l y i f t h e employment had ended b a d l y . So you s t a r t a v o i d i n g t h o s e p l a c e s and h o p i n g you don't see anybody you knew a t work. So t h e r e ' s a l l t h e s e l i t t l e t h i n g s r e l a t e d t o i t . You p u t y o u r s e l f i n h i d i n g e v e r y t i m e you have a f a i l u r e . I c a n ' t even a s s o c i a t e w i t h them now. I f I see them on t h e s t r e e t , as soon as t h e y t a l k t o me, I f e e l awkward. I don't want t o t a l k t o t h e s e p e o p l e . They d i s t u r b me and t h e y b r i n g i t a l l back. A n o t h e r e m o t i o n a l r e s p o n s e t h a t some p a r t i c i p a n t s e x p e r i e n c e d was g u i l t . Some p a r t i c i p a n t s f e l t g u i l t y about n o t w o r k i n g . 116 T h e re's q u i t e a b i t o f g u i l t comes when you t h i n k , gee i f o n l y I t r i e d a l i t t l e b i t h a r d e r and I can do i t — a n d I j u s t i g n o r e d t h e symptoms and I c o u l d manage. I f e l t t h a t my c o n s c i e n c e was s a y i n g you s h o u l d be w o r k i n g . You c a n ' t s i t a t home a l l day and watch TV. What w i l l y o u r f r i e n d s t h i n k . What w i l l y o u r resume l o o k l i k e i f y o u ' r e t h i r t y y e a r s o l d and you don't have any work e x p e r i e n c e . L e a v i n g j o b s and d e c r e a s i n g l i f e g o a l s a f f e c t e d t h e s e l f -esteem o f many o f t h e i n d i v i d u a l s . One i n d i v i d u a l ' s comment e x e m p l i f i e s t h e t y p e o f comments t h a t many p a r t i c i p a n t s made. There i s a g r e a t f e a r o f s t a r t i n g something, w i t h good i n t e n t i o n s , and f i n d i n g once a g a i n , f o r t h e t e n t h t i m e o r how many t i m e s have I b e e n — e l e v e n , t w e l v e , t h i r t e e n . Where w i l l i t end? W i l l I spend my whole l i f e jumping around l i k e t h i s ? Each t i m e your s e l f - e s t e e m goes down t h e d r a i n and — o h w e l l I ' l l be on w e l f a r e t h e r e s t o f my l i f e o r something because I j u s t c a n ' t cope. E i t h e r t h a t o r washing v e g e t a b l e s o r something minimum wage. As a l l t h e p a r t i c i p a n t s were i n t h e i r t w e n t i e s o r o l d e r , h a v i n g t o work minimum wage j o b s was c o n s i d e r e d p a r t i c u l a r l y d e m o r a l i z i n g . S e v e r a l p a r t i c i p a n t s t a l k e d about i n d i v i d u a l s who had r e c e n t l y been w o r k i n g a t minimum wage j o b s . One o f t h e f e l l o w s , he keeps t a l k i n g about g o i n g t o c o l l e g e and g o i n g t o s c h o o l , because he d o e s n ' t want t o s t a r t o f f making f o u r d o l l a r s washing d i s h e s a t [a f a s t f o o d r e s t a u r a n t ] . I mean, he's a l m o s t t h i r t y , and he's g o i n g t o be p u t i n w i t h t h e s e s i x t e e n y e a r o l d s . I mean, g r a n t e d he's t e n o r f i f t e e n y e a r s b e h i n d , b u t t h e e g o — d e m o r a l i z i n g t r i p . You see by b e i n g on w e l f a r e and h a v i n g h i s own l i t t l e w o r l d , he d o e s n ' t have t o d e a l w i t h t h a t s t r e s s . But i f he was s t u c k i n a k i t c h e n w ashing d i s h e s w i t h a bunch o f t e e n a g e r s and i f t h e y e v e r h e a r d he had s c h i z o p h r e n i a , he would be t h e t a r g e t f o r e v e r y j o k e i n t h e p l a c e . I don't know what i t ' s l i k e t o n o t have a j o b , b u t I know my f r i e n d , t h a t d i d n ' t want t o do t h i s , he s a y s , " i f t h e r e i s a k i n d c a r i n g God, why would he g i v e me a l l t h e s e f e e l i n g s and why would I n o t have a j o b t h a t I 117 would have some s e l f - w o r t h ? " Because he had worked e i g h t months as a bus boy and he's i n h i s t w e n t i e s , and he f e l t degraded a t t h e end. As i m p l i e d i n t h e above s t a t e m e n t , t h e p a r t i c i p a n t t h o u g h t i t was b e t t e r t o go on w e l f a r e t h a n t o a c c e p t a j o b t h a t was h u m i l i a t i n g and d e m o r a l i z i n g . S e v e r a l o t h e r p a r t i c i p a n t s echoed t h i s t h o u g h t . They s u g g e s t e d t h a t i n some c a s e s i t would be b e t t e r t o s t a y on w e l f a r e o r a p e n s i o n r a t h e r t h a n have t o f a c e t h e h u m i l i a t i o n o f minimum wage j o b s . As a n o t h e r p a r t i c i p a n t o b s e r v e d , " h i s easy way o u t i s s t a y i n g on w e l f a r e , because he doesn't have t o c o n f r o n t t h e r e a l w o r l d . " I n summary, many p a r t i c i p a n t s e x p e r i e n c e d d i s a p p o i n t m e n t , d i s c o u r a g e m e n t , embarrassment, and g u i l t i n r e l a t i o n t o t h e work e x p e r i e n c e s . Some found t h a t t h e i r s e l f - e s t e e m was a f f e c t e d because o f i n a b i l i t y t o m a i n t a i n employment. S e v e r a l s u g g e s t e d t h a t s e l f - e s t e e m was a l s o a f f e c t e d when an i n d i v i d u a l had t o work a t a j o b c o n s i d e r e d d e g r a d i n g . Some p a r t i c i p a n t s e x p l a i n e d t h a t i t would be b e t t e r t o l i v e on w e l f a r e t h a n t o a c c e p t such work. F i n d i n g Meaning i n Work D e s p i t e t h e d i f f i c u l t i e s and t h e e m o t i o n a l r e s p o n s e s r e l a t e d t o f i n d i n g and m a i n t a i n i n g work, p a r t i c i p a n t s i n d i c a t e d t h a t work h e l d a l o t o f meaning f o r them. A l l p a r t i c i p a n t s had a s t r o n g d e s i r e t o work. One p e r s o n s a i d t h a t even i f she d i d n ' t have t o work, she would c o n t i n u e w o r k i n g . I t h i n k i f I won t h e l o t t e r y I ' d s t i l l be w o r k i n g . I t ' s n o t a money thing...Now t h a t I have s o c i a l s k i l l s , I 118 want t o be w i t h p e o p l e . I want t o work w i t h p e o p l e . So i t ' s r e w a r d i n g n o t j u s t on a work l e v e l , b u t on an e m o t i o n a l o r s p i r i t u a l l e v e l . Some p a r t i c i p a n t s f e l t t h a t because o f b e i n g i l l , t h e y had a s t r o n g e r d e s i r e t o work t h a n many o t h e r p e o p l e . So you might be as good o r even b e t t e r t h a n a l o t o f w o r k e r s on y o u r good days, because t h e r e ' s t h a t e x t r a m o t i v a t i o n t o t r y and work. There's a l o t o f p e o p l e who've ne v e r been s i c k b e f o r e — j u s t t a k e work f o r g r a n t e d . Whereas, a p e r s o n who has been i l l , i s r e a l l y w a n t i n g i t t o work out and so t h e y p u t i n t h a t l i t t l e e x t r a e f f o r t . So t h a t ' s one t h i n g more I can say i s t h a t when t h e y a r e w o r k i n g , t h e y ' r e p r o b a b l y w o r k i n g v e r y w e l l . F o r many p a r t i c i p a n t s , work p r o v i d e d a sense o f purpose and d i r e c t i o n i n t h e i r l i v e s . When asked what work meant f o r him, one p a r t i c i p a n t s a i d , " I seems l i k e y o u ' r e g o i n g somewhere. I t seems l i k e t h e r e ' s a s t e p beyond and t h e r e i s a r e a s o n coming t h e n e x t day". A n o t h e r p a r t i c i p a n t • s comment c l e a r l y i l l u s t r a t e s t h e i m p o r t a n c e o f work f o r p r o v i d i n g p u r p o s e t o h e r l i f e . I s t i l l f e e l t h a t , yes t h e r e i s some purpose t o my e x i s t e n c e on t h i s p l a n e t . I don't j u s t e a t , s l e e p and watch TV. I am a w o r k i n g human b e i n g b e c a u s e — y o u t a k e anybody t h a t ' s unemployed, t h e h e a l t h i e s t p e r s o n i n t h e w o r l d , and t a k e them unemployed f o r a w h i l e . Say t h e y won a l o t t e r y , t h e y ' r e g o i n g t o be unhappy about i t . Because you can n o t s i t and s t a r e out t h e window. You have t o do something. T h a t ' s what b e i n g human i s a l l about. So no m a t t e r what l e v e l you a r e , i f y o u ' r e h e a l t h y o r y o u ' r e u n h e a l t h y o r s t r u g g l i n g somewhere i n between, t h e work, i t g i v e s some r e a s o n why you e x i s t — and f e e l i n g good a t t h e end o f t h e day. Maybe you made a d i f f e r e n c e t o an o l d p e r s o n , a c h i l d , maybe you c a n ' t -- I know one d o c t o r who s a y s when y o u ' r e w e l l , y o u ' r e p a y i n g income t a x . T h a t ' s t h e i r v a l u e i n s o c i e t y . T h a t ' s q u i t e humerous b u t — I ' m n o t p a y i n g income t a x r i g h t now, b u t i f I know t h a t I'm v o l u n t e e r i n g , I know t h a t I'm d o i n g something. 119 S e v e r a l p a r t i c i p a n t s e x p l a i n e d t h a t work was m e a n i n g f u l i n terms o f t h e f i n a n c i a l b e n e f i t s . F o r one p a r t i c i p a n t , unemployment and r e l i a n c e o f a p e n s i o n would r e s u l t i n major l o s s e s . He s t a t e d , " i f I wasn't w o r k i n g I ' d l o s e my l i v i n g q u a r t e r s . I ' d l o s e my v e h i c l e . " Other p a r t i c i p a n t s p r e f e r r e d t o work r a t h e r t h a n r e c e i v e w e l f a r e , i f t h e y c o u l d make a l i t t l e e x t r a money by d o i n g so. See I c o u l d make $560 a month on w e l f a r e , b u t i t j u s t w o u l d n ' t be t h e same. I t f e e l s a l o t b e t t e r t o s t a n d on y o u r own two f e e t — p l u s money. L i k e I don't make a l o t o f money. I t g i v e s me money f o r e x t r a s and s t u f f . L i k e I have a c o u p l e o f dogs t h a t my p a r e n t s t a k e c a r e o f . So I can f e e d them. I don't have a l o t o f money but I can e i t h e r save o r spend. T h a t ' s always been i m p o r t a n t t o me. One p a r t i c i p a n t i n d i c a t e d t h a t i t was w o r t h w h i l e w o r k i n g i f t h e j o b p r o v i d e d income " a t o r above t h e p o v e r t y l i n e . " He s t a t e d t h a t on a p e n s i o n , he c o u l d n ' t p r o v i d e f o r h i s needs. I'm on a h a n d i c a p p e n s i o n a t $664 a m o n t h — h a l f t h e p o v e r t y l i n e . And t o b a c c o keeps g o i n g up. And I know f o r a f a c t t h a t about 95 p e r c e n t o f m e n t a l p a t i e n t s smoke. And i t ' s e x p e n s i v e — t a k e s up a t l e a s t h a l f our s p e n d i n g income. A f t e r you pay r e n t , you g o t $365 d o l l a r s l e f t and smoking c o s t s about $200 a month. I n a d d i t i o n , p a r t i c i p a n t s ' comments i n d i c a t e d t h a t work p r o v i d e d some s t r u c t u r e t o t h e day. Something you base y o u r day a r o u n d — s t r u c t u r e s y o u r day and makes you f e e l l i k e you b e l o n g somewhere and g i v e s you an i d e n t i t y . G i v e s you a commitment t o d o i n g something. L i k e you have t o show up a t a c e r t a i n p l a c e a t a c e r t a i n t i m e , so t h a t becomes what you a r e i n a sense. I would become [when n o t w o r k i n g ] d i r e c t i o n l e s s and s o r t o f a f e e l i n g o f w a n d e r i n g a l l o v e r t h e p l a c e - ^ s o r t o f d r i f t i n g around, s o r t o f l o n e l y and d r i f t i n g around. 120 I n t h e above comment, t h e i n d i v i d u a l r e f e r s t o f e e l i n g " l o n e l y " when n o t w o r k i n g . S e v e r a l o t h e r s e x p l a i n e d t h a t work was i m p o r t a n t i n terms o f t h e s o c i a l r e l a t i o n s h i p s i t p r o v i d e d . I have t o be w o r k i n g . . . I f i t was w o r k i n g i n a f a c t o r y I wo u l d n ^ t l a s t . I've g o t t o have t h a t r a p p o r t w i t h p e o p l e . I've always been t h a t way . . . I ' v e g o t t o — n o one s h o u l d be i s o l a t e d . K e e p i n g i n c o n t a c t w i t h p e o p l e , and g o i n g o u t and e n j o y i n g i t , and g e t t i n g o u t o f t h e apartment, and g e t t i n g o u t o f t h e house i s v e r y i m p o r t a n t t o do. The s o c i a l p a r t o f i t [work] i n s m a l l doses. From p a r t i c i p a n t s ' s t a t e m e n t s i t seemed t h a t a n o t h e r p o s i t i v e a s p e c t o f t h e work e x p e r i e n c e was t h a t i t p r o v i d e d an i d e n t i t y . I n p a r t i c u l a r , some p a r t i c i p a n t s s a i d t h a t work h e l p e d them t o change t h e i r i d e n t i t y from t h a t o f a s i c k p e r s o n t o t h a t o f a w e l l p e r s o n . One t h i n g I found, t h a t even when I'm t a k i n g c o u r s e s o r g o i n g t o a [ t h e r a p y ] program, t h a t I don't f i n d t h e same s a t i s f a c t i o n because I'm r e c e i v i n g h e l p . I'm r e c e i v i n g a d v i c e from t h e d o c t o r s and t h e t h e r a p i s t , b u t I'm n o t g i v i n g a n y t h i n g , and I m i s s t h a t . I have a r e a l l y s t r o n g d e s i r e t o mix t h i s program w i t h v o l u n t e r i n g r i g h t now, because I f e e l l i k e I'm g e t t i n g a l l t h i s i n p u t , b u t w e l l I want t o be d o i n g something. I f e e l l i k e I'm b e i n g as a s i c k p e r s o n . I'm r e c i e v i n g a l l t h e t i m e , where a s , when I'm g i v i n g , I'm a w e l l p e r s o n . I went on UIC once a n d — s o r t o f t h i s s t r a n g e frame o f mind you g e t i n t o where t h e governments p a y i n g you a w e l f a r e check and you can d e v e l o p t h i s , "somebody owes me a l i v i n g " k i n d o f a t t i t u d e . That i s r e a l l y u n h e a l t h y . To be on w e l f a r e , m e n t a l h a n d i c a p p e n s i o n , unemployment i s v e r y d e m o r a l i z i n g . Something v e r y p o s i t i v e about knowing you can work. That was f o r me a b i g s t e p i n , n o t so much i n h e a l i n g , b u t more i n r e b u i l d i n g . I have a h a n d i c a p , y e t be a b l e t o s u p p o r t y o u r s e l f , t a k e c a r e o f y o u r s e l f . T h a t ' s v e r y p o s i t i v e element. 121 I was a b l e t o g e t a h a n d i c a p p e n s i o n . I t means t h a t you have more money i f y o u ' r e on w e l f a r e . But a c c o r d i n g t o t h e s o c i a l s e r v i c e s and h o u s i n g , t h e y b e l i e v e you a r e unemployable and you w i l l n e ver h o l d down a j o b . So t h a t k i n d o f message i s i n y o u r head. So you have t o say I am g o i n g t o g e t o f f w e l f a r e . I am g o i n g t o h o l d down a j o b . I am g o i n g t o break away from t h e system. And a l s o f o r me i t ' s i m p o r t a n t f o r me t o g i v e back some o f what I've t a k e n from t h e system and t h a t ' s r e a l l y i m p o r t a n t t o me. I t ' s p a r t o f b e i n g a c o n t r i b u t i n g member o f s o c i e t y . The above s t a t e m e n t i n c l u d e s a n o t h e r t h o u g h t t h a t many p a r t i c i p a n t s e x p r e s s e d . Many s t a t e d t h a t when t h e y were on unemployment o r w e l f a r e t h e y were a "burden on s o c i e t y . " So work was a l s o m e a n i n g f u l i n terms o f t h e a f f e c t i t had on s e l f - e s t e e m . P a r t i c i p a n t s f e l t t h a t , when w o r k i n g , t h e y were w o r t h w h i l e , c o n t i b u t i n g members o f s o c i e t y . I f e l t I was b e g i n n i n g down a p a t h o f e m p l o y m e n t — l i k e I was w o r t h something, because I was g e t t i n g p a i d f o r what I d i d . There's k i n d o f a l i t t l e t h i n g t h e r e w h i c h i s k i n d o f l i k e a p o s i t i v e t h i n g . A number o f p a r t i c i p a n t s found t h a t when unemployed t h e y had poor s e l f - e s t e e m . F o r example one p e r s o n s a i d , " I t k i n d o f s n o w b a l l s when y o u ' r e n o t w o r k i n g . You f e e l worse about y o u r s e l f . " I t seemed, from t h e i r s t a t e m e n t s t h a t t h e esteem b o o s t i n g e f f e c t o f work was v e r y s i g n i f i c a n t because o f t h e tremendous impact o f s c h i z o p h r e n i a on t h e i n d i v i d u a l ' s s e l f -esteem. One p e r s o n ' s comment i l l u s t r a t e s t h i s . You do a good j o b — e i t h e r you know i t o r y o u r boss t e l l s you, so t h a t h e l p s y o u r s e l f - e s t e e m . I t h i n k t h a t ' s r e a l l y i m p o r t a n t because when yo u ' r e i l l y o u r s e l f -esteem t a k e s such a b a t t e r i n g . Through no f a u l t o f your own. J u s t because you have an i l l n e s s . Because i t ' s such a funny d i s e a s e . You know p e o p l e don't s a y — w e l l l i k e d i a b e t e s , i f you have d i a b e t e s t h e y don't blame you f o r i t . I f you have s c h i z o p h r e n i a and you y e l l a t 122 them, t h e y don't blame y o u r i l l n e s s , t h e y blame you o r i f t h e y do blame y o u r i l l n e s s , t h e y ' r e s t i l l mad a t you. So y o u r s e l f - e s t e e m i s a f f e c t e d . The f o l l o w i n g comments p r o v i d e good examples o f t h e e x p l a n a t i o n s o f t h e s e p a r t i c i p a n t s about t h e meaning t h a t work h e l d f o r them. S e l f - e s t e e m , g e n e r a l w e l l - b e i n g , b e i n g a b l e t o f e e l good about y o u r s e l f — a n d i f you f e e l good about y o u r s e l f , you p r o b a b l y a r e c a p a b l e o f f e e l i n g good about someone e l s e . I f you don't f e e l good about y o u r s e l f , y o u ' r e n o t g o i n g t o i n t e r a c t w i t h t h e r e s t o f mankind, humanity, v e r y w e l l a t a l l . I've met some s c h i z o p h r e n i c s who don't work. They're on w e l f a r e and t h e y l i v e i n a k i n d o f an a l m o s t a c h i l d e x i s t e n c e . They're b e i n g t a k e n c a r e o f . They're b e i n g p a r e n t e d . I t [ w e l f a r e ] t a k e s c a r e o f t h e i r r o o f o v e r t h e i r head and t h e i r f o o d b u t i t d o esn't do a n y t h i n g t o r e s t o r e t h e human, t h e body, b a s i c a l y . Something t o prove--and because I don't want t o be a burden t o s o c i e t y — m a k e my own way, pay my own t a x e s a n d — s e l f - e s t e e m — b u i l d i t up. And a l s o so I don't have t o l i v e on h a l f t h e p o v e r t y l i n e . Thus, p a r t i c i p a n t s were v e r y m o t i v a t e d t o work. Many s a i d t h a t work was m e a n i n g f u l i n terms o f p r o v i d i n g purpose and s t r u c t u r e t o t h e i r l i v e s and p r o v i d i n g f i n a n c i a l b e n e f i t s and s o c i a l r e l a t i o n s h i p s . A n o t h e r i m p o r t a n t a s p e c t o f work was t h e e f f e c t i t had on c h a n g i n g t h e p e r s o n ' s i d e n t i t y from t h a t o f a s i c k p e r s o n t o t h a t o f a w e l l p e r s o n . Because o f t h e n e g a t i v e e f f e c t o f s h c i z o p h r e n i a on t h e i n d i v i d u a l s ' s e l f - e s t e e m , work was c o n s i d e r e d v e r y s i g n i f i c a n t . A l l p a r t i c i p a n t s i d e n t i f i e d t h e p o s i t i v e e f f e c t t h a t work had on s e l f - e s t e e m . I n c o n c l u s i o n , t h e p a r t i c i p a n t s ' d e s c r i p t i o n s o f t h e w o r k - r e l a t e d e x p e r i e n c e r e v e a l s t h e f o l l o w i n g f i n d i n g s . S e v e r a l p a r t i c i p a n t s i n d i c a t e d t h a t when any j o b was 123 c o n s i d e r e d a c c e p t a b l e , i t was n o t t o o d i f f i c u l t t o o b t a i n work. When j o b s w i t h c e r t a i n w o r k i n g c o n d i t i o n s were d e s i r e d , i t was more d i f f i c u l t t o f i n d work. A common way t o f i n d work was t o make use o f a wide range o f r e s o u r c e s i n c l u d i n g t h o s e a v a i l a b l e t o t h e g e n e r a l p u b l i c and t h o s e d e v e l o p e d f o r p e o p l e w i t h s p e c i a l needs. A d d r e s s i n g j o b s k i l l s , gaps i n resumes, and t h e d i a g n o s i s were common a r e a s o f c o n c e r n i n t h e j o b a p p l i c a t i o n p r o c e s s . Many assumed t h a t r e v e a l i n g t h e d i a g n o s i s would j e o p a r d i z e employment and would r e s u l t i n b e i n g t r e a t e d " d i f f e r e n t l y . " They c o n s i d e r e d i t w i s e t o " c o v e r up" t h e i l l n e s s . Each p a r t i c i p a n t ' s a c c o u n t r e v e a l e d t h a t t h e n a t u r e o f t h e i r i l l n e s s and t h e i r r e s p o n s e t o b e i n g d i a g n o s e d w i t h s c h i z o p h r e n i a a f f e c t e d t h e d e s i r e t o go t o work, t h e a b i l i t y t o do j o b t a s k s , and t h e c o m f o r t l e v e l a t work. A number o f p a r t i c i p a n t s p r e t e n d e d t o be "normal" a t work and w o r r i e d about b e i n g "found o u t . " T h i s i n c r e a s e d j o b s t r e s s . F o r most i n d i v i d u a l s b e i n g i l l and b e i n g d i a g n o s e d w i t h s c h i z o p h r e n i a r e s u l t e d i n h a v i n g t o t a k e b r e a k s d u r i n g t h e work day, b e i n g f i r e d o r h a v i n g t o q u i t . W h i l e i t i n v o l v e d a g r e a t d e a l o f t r e p i d a t i o n , i n f o r m i n g an employer about t h e i l l n e s s was n o t n e c e s s a r i l y d e t r i m e n t a l , e s p e c i a l l y i f a good work r e c o r d had a l r e a d y been a c h i e v e d w i t h t h a t employer. A l t h o u g h i t was n o t always easy, p e o p l e were a b l e t o f i n d j o b s t h a t were s a t i s f a c t o r y and even e n j o y a b l e . P a r t i c i p a n t s ' a c c o u n t s r e v e a l e d t h a t b e i n g i l l r e s u l t e d i n 124 b e i n g unemployed f o r p e r i o d s o f t i m e , s t a r t i n g and s t o p p i n g many j o b s , w o r k i n g a t many d i f f e r e n t t y p e s o f j o b s , and c h a n g i n g employment a m b i t i o n s . F o r t h e m a j o r i t y o f p a r t i c i p a n t s t h e w o r k - r e l a t e d e x p e r i e n c e s , p a r t i c u l a r l y g o i n g t h r o u g h many j o b s , r e s u l t e d i n f e e l i n g s o f d i s c o u r a g m e n t , d i s a p p o i n t m e n t , embarrassment and g u i l t . M o t i v a t i o n t o work was q u i t e h i g h f o r most p a r t i c i p a n t s d e s p i t e t h e employment d i f f i c u l t i e s . The p a r t i c i p a n t s e x p l a i n e d t h a t work was m e a n i n g f u l f o r p r o v i d i n g p u rpose and s t r u c t u r e t o l i f e , f o r f i n a n c i a l b e n e f i t s , and f o r s o c i a l r e l a t i o n s h i p s . Many s a i d t h a t because o f t h e impact o f i l l n e s s and d i a g n o s i s on i d e n t i t y and s e l f - e s t e e m , work was e s p e c i a l l y i m p o r t a n t . The m a j o r i t y s a i d t h a t work improved s e l f - e s t e e m , acknowledged t h e i r independant i d e n t i t y , and made them f e e l l i k e t h e y were a c o n t r i b u t i n g member o f s o c i e t y . The C o p i n g E x p e r i e n c e S u c e s s f u l l y c o p i n g w i t h t h e i l l n e s s improved t h e chances o f b e i n g a b l e t o o b t a i n and m a i n t a i n work. S u c e s s f u l l y c o p i n g w i t h work improved t h e h e a l t h o f t h e p a r t i c i p a n t as i t i n c r e a s e d s e l f - e s t e e m , p r o v i d e d purpose and an i d e n t i t y and i n c r e a s e d s o c i a l r e l a t i o n s h i p s . So t h e i l l n e s s and work were v e r y much i n t e r w o v e n and f a c t o r s a f f e c t i n g one a l s o a f f e c t e d t h e o t h e r . 125 C o n t r o l l i n g I n f l u e n t i a l F a c t o r s Many p a r t i c i p a n t s found t h a t , as t i m e went by, t h e y d e v e l o p e d an i n c r e a s e d a b i l i t y t o manage f a c t o r s r e l a t e d t o work and i l l n e s s . One o f t h e key elements o f management was t h a t i t was self-management. I n d i v i d u a l s v e r y much wanted t o c o n t r o l t h e f a c t o r s r a t h e r t h a n have someone e l s e , such as p r o f e s s i o n a l s o r f a m i l y , t a k e c o n t r o l . As one p a r t i c i p a n t s a i d , " T h i s i s t h e whole p o i n t — i s t h i s a b i l i t y t o l o o k a f t e r y o u r s e l f — t o manage y o u r s e l f . " One o f t h e most i m p o r t a n t a s p e c t s o f b e i n g a b l e t o s e l f -manage was g a i n i n g c o n t r o l o f t h e m e d i c a t i o n s . H a v i n g c o n t r o l o v e r dosage meant h a v i n g some c o n t r o l o v e r symptoms and s i d e - e f f e c t s . A l t h o u g h a c e r t a i n amount o f u n p r e d i c t a b i l i t y s t i l l e x i s t e d , c o n t r o l l i n g symptoms improved t h e chance o f b e i n g a b l e t o work. As w e l l , c o n t r o l l i n g t h e s i d e - e f f e c t s improved t h e chances o f b e i n g a b l e t o f u n c t i o n a t work. P r o b a b l y t h e s i d e e f f e c t s o f t h e d rugs i s r e a l l y t h e most d i f f i c u l t p a r t — t h e g r o g g i e s . And i f you don't have y o u r m e d i c a t i o n under c o n t r o l y o u ' r e n o t g o i n g anywhere. T h a t ' s t h e f i r s t t h i n g — m a n a g e y o u r m e d i c a t i o n . I f you've g o t somebody e l s e t e l l i n g you what y o u ' r e t a k i n g , y o u ' r e n o t g o i n g anywhere, because y o u ' r e g i v i n g them t h e r e s p o n s i b i l i t y . You've g o t t o manage y o u r meds. The m e d s — f i n d i n g a b a l a n c e t h a t you know i s r i g h t and n o t what someone e l s e t h i n k s . Because you know what's g o i n g on i n s i d e y o u r body. A p e r s o n has t o — w i t h a l i t t l e l u c k he can f i n d a f a i r l y d e c e n t — a f a i r l y a p p r o p r a t e l e v e l o f m e d i c a t i o n w h i c h won't make him t o o groggy o r t o o s l u g g i s h . You have t o f i n d t h e r i g h t dose, and i f y o u ' r e n o t on t h e r i g h t dose i t ' s h e l l . . . [ Y o u ] want t o g e t t h e r i g h t dose. 126 Most p a r t i c i p a n t s found t h a t i t t o o k t i m e t o f i n d t h e r i g h t dose o f m e d i c a t i o n . I t t o o k t i m e f o r me t o r e a l l y a c c e p t and f i n d a b a l a n c e w i t h my m e d i c a t i o n — t o l e t me c o n t r o l i t — t o l e t me f i n d , o v e r a p e r i o d o f t i m e , how much I need and what's r i g h t . I've been on t h e h a l d o l f o r f o u r y e a r s now and I'm s t i l l t r y i n g t o f i n d a b a l a n c e o f what i s r i g h t f o r m e — a n d h a v i n g t o t a k e t h e r i g h t amount e v e r y n i g h t . R a t h e r t h a n h a v i n g t o go o f f i t and t h e n h a v i n g t o — l i k e t a k e t o o much. So I'm s t i l l t r y i n g t o f i n d t h a t b a l a n c e . P a r t i c i p a n t s had t h e i r own system and r o u t i n e s f o r t a k i n g m e d i c a t i o n . Some j u s t t o o k i t when t h e y f e l t t h e y needed i t . O t h e r s would t a k e i t e v e r y o t h e r day o r e v e r y n i g h t , and so on. I f you have a h a l l u c i n a t i o n , you know you've g o t t o e i t h e r t a k e y o u r h a l d o l — a n d i f you t a k e y o u r h a l d o l l a s t n i g h t — t a k e y o u r b e n z t r o p i n e t o d a y . Because, I've found i n t a k i n g t h e b e n z t r o p i n e t h e way I was t a k i n g i t -- i n t h e l a s t s i x months o r s o — t h e h a l d o l I would t a k e a l l a t n i g h t . . . T h a t ' s were i t ' s i m p o r t a n t — w h e r e t h e m e d i c a t i o n t h a t makes you s l e e p y , t r y and t a k e t h a t a t n i g h t — a n d t h e a m i t r i p t y l i n e and t h e h a l d o l t a k e t h a t a t n i g h t . And I found t a k i n g t h e b e n z t r o p i n e — t h e c o g e n t i n — i n t h e morning, t h a t b r i n g s me up a l i t t l e b i t . I'm t r y i n g t o t a k e i t a t e i g h t o ' c l o c k each n i g h t t o r e s e m b l e what t h e y were d o i n g a t t h e b o a r d i n g home. L i k e make s u r e i t s on a r e g u l a r b a s i s . He [ t h e d o c t o r ] a c t u a l l y t o l d me, " f i n e i f y o u ' r e c o m f o r t a b l e w i t h n o t t a k i n g y o u r meds, t h e n don't t a k e them. When you need them t a k e them." So t h a t ' s what I do. I j u s t go day t o day now, and i f I don't f e e l ok, w e l l — p o p a p i l l . . As p r e v i o u s l y mentioned, s e v e r a l p a r t i c i p a n t s d e s c r i b e d how b e i n g i l l meant d e a l i n g w i t h changes i n t h e need f o r s l e e p . Over t h e y e a r s , a number had l e a r n e d t h a t c o n t r o l l i n g t h e amount o f s l e e p h e l p e d them t o s t a y w e l l . They i n d i c a t e d 127 t h a t b a l a n c i n g s l e e p p a t t e r n s and g e t t i n g a good n i g h t ' s s l e e p h e l p e d them f e e l b e t t e r and i n c r e a s e d t h e i r a b i l i t y t o g e t up, go t o work and f u n c t i o n e f f e c t i v e l y . S l e e p i s i m p o r t a n t . You need enough [ m e d i c a t i o n ] t o have t h a t f u l l n i g h t s l e e p . T h a t ' s t h e one t h i n g I found w i t h t h i s i l l n e s s i s t h a t you r e a l l y need i t t o p u t you t o s l e e p — t o p u t you out a c e r t a i n a m o u n t — n o t t o zonk you o u t so y o u ' r e zonked f o r t h e n e x t few days b u t you need enough t o h e l p you s l e e p . I t h i n k i f y o u ' r e m e n t a l l y i l l , you have more t r o u b l e w i t h y o u r s l e e p p a t t e r n s — n o t as r e g u l a r as t h e y s h o u l d be. So r e g u l a r s l e e p i s i m p o r t a n t . Anytime t h a t I've had t o go d i s r u p t my s l e e p — s a y an e s s a y due o r out w i t h f r i e n d s New Y e a r s E v e — w h e r e I'm ou t l a t e — t h e n e x t few days j u s t a r e r e a l l y h a r d . S l e e p i s v e r y i m p o r t a n t — k e e p i n g on a r e g u l a r b a s i s . And when I can, I t r y t o nap i n t h e a f t e r n o o n o r j u s t s i t down and r e l a x i n a c h a i r . A f u l l day i s j u s t t o o many t h i n g s g o i n g on, and I have t o g e t away. T h a t ' s why s l e e p i s so i m p o r t a n t . You have t o g e t down t o z e r o a g a i n , so I can s t a r t t h e n e x t day. As i n d i c a t e d i n t h e above s t a t e m e n t , t a k i n g a r e s t d u r i n g t h e day was a l s o c o n s i d e r e d an i m p o r t a n t way o f c o p i n g w i t h t h e i l l n e s s . Most p a r t i c i p a n t s t r i e d t o b a l a n c e t h e amount o f t i m e s p e n t i n a c t i v i t y and r e s t . One p a r t i c i p a n t e x p l a i n e d t h a t , when he found work s t r e s s f u l , he made s u r e t h a t he g o t enough p h y s i c a l and m e n t a l r e s t [ s i c ] . T r y i n g t o do y o u r work and h a v i n g t h i s i n y o u r mind, i t does p r o b a b l y d r a i n you. N o r m a l l y i f I've had a bad day, I come home and I j u s t s i t on t h e couch and v e g e t a t e . A n o t h e r way t h a t p a r t i c i p a n t s e n j o y e d " r e s t " was t h r o u g h a change o f a c t i v i t i e s . P a r t i c i p a n t s e x p l a i n e d t h a t i t was i m p o r t a n t t o b a l a n c e work a c t i v i t i e s w i t h l e i s u r e a c t i v i t i e s . I t h i n k t h a t depending on what t h e j o b i s — o u t s i d e o f t h a t — t h e y s h o u l d n ' t deny t h e i r own i n t e r e s t s t h e y had 128 b e f o r e t h e y g o t s c h i z o p h r e n i a . I t h i n k s c h i z o p h r e n i c s s h o u l d be encouraged t o do t h i n g s . So what i f t h e y ' r e n o t making a n y t h i n g o u t o f i t f i n a n c i a l l y , as f a r as o u t s i d e o f a j o b goes. They might have enjoyment. R u n n i n g — i t s k i n d o f l i k e — s a m e as my t r u m p e t — I k i n d o f make i t a t r e a t , because i t ' s n o t work and because t h e r e s no p r e s s u r e i n v o l v e d w i t h i t . I save t h e p r e s s u r e f o r work. I t h i n k p e o p l e a r e more i n t e r e s t e d i n what t h e y ' r e g o i n g t o do w i t h t h e i r l e i s u r e t i m e . I t h i n k what I do w i t h my l e i s u r e t i m e — p l a y i n g S o f t b a l l and camping, s t u d y i n g f r e n c h and I'm t r y i n g t o w r i t e a n o v e l and s t u f f l i k e that...What I do w i t h my l e i s u r e t i m e i s g e t t i n g more i m p o r t a n t t o me t h a n what I do a t work. Most p a r t i c i p a n t s s a i d t h a t i t was n o t j u s t t h e amount o f t i m e s p e n t i n l e i s u r e a c t i v i t i e s , b u t i t was a l s o t h e type o f l e i s u r e a c t i v i t y t h a t was i m p o r t a n t . They acknowledged t h e i m p o r t a n c e o f c h o s i n g h e a l t h - o r i e n t e d l e i s u r e a c t i v i t i e s , t h a t i s , a c t i v i t i e s t h a t improved one's m e n t a l and p h y s i c a l h e a l t h . One p e r s o n i n p a r t i c u l a r s a i d t h a t she was now more c o n s c i o u s o f c h o o s i n g h e a l t h - o r i e n t e d a c t i v i t i e s t h a n i n t h e p a s t . R e c e n t l y I g o t a membership a t t h e "Y" and I'm w o r k i n g o u t . And I changed t h a t around from where b e f o r e I'd s a y , " l e t ' s go t o t h e b a r " , now I say, " l e t s go f o r a w a l k . " I don't r e g r e t g o i n g t o b a r s . I t was f u n t i m e s . T h i s i s f u n t o o . F e e l i n g h e a l t h y — f e e l i n g good about m y s e l f and knowing I'm d o i n g something t h a t ' s good f o r me. A n o t h e r p a r t i c i p a n t ' s comment i l l u s t r a t e s t h e s i g n i f i c a n c e o f l e i s u r e a c t i v i t i e s f o r p r e v e n t i n g boredom and i t ' s a s s o c i a t e d p r o b l e m s . There's always about f i f t e e n m i l l i o n books I want t o r e a d , so I'm always i n t e r e s t e d i n t h i s o r t h a t — m u s i c , p l a y i n g w i t h languages. So t h e r e ' s a l w a y s p l e n t y o f t h i n g s t o be i n t e r e s t e d i n ; So I t h i n k boredom i s a b i g p r o blem as t o g e t t i n g a l o t o f p e o p l e i n t o t r o u b l e . They c a n ' t cope w i t h a j o b o r a n y t h i n g , so t h e y d r i f t 129 around and t h e y g e t bo r e d and t h e y g e t i n t o d r ugs o r a l c o h o l and t h a t c o m p l i c a t e s e v e r y t h i n g . Smoking a l l t h e t i m e — a n d i t c o m p l i c a t e s e v e r y t h i n g . A n o t h e r a r e a i n w h i c h many p a r t i c i p a n t s found c o n t r o l i m p o r t a n t was t h e i r d i e t . E a t i n g a s u f f i c i e n t amount o f f o o d as w e l l as e a t i n g " h e a l t h y " meals m a i n t a i n e d m e n t a l and p h y s i c a l h e a l t h t h u s e n a b l i n g t h e p e r s o n t o work. I s t a r t e d e a t i n g more q u i c k f o o d s because I was so busy a t s c h o o l t h a t I had no t i m e f o r l u n c h — o r go f o r a c o f f e e o r j u i c e i n s t e a d o f a f u l l d i n n e r . So my d i e t went d o w n h i l l . My v i t a m i n s went d o w n h i l l . My s t r e s s went u p h i l l . So I'm s u r e t h a t had something t o do w i t h r e l a p s e — p u s h i n g m y s e l f t o o h a r d and n o t t a k i n g i t easy enough. Because I t r u l y b e l i e v e i t ' s a m e d i c a l problem and you have t o t r e a t i t m e d i c a l l y — w i t h t h e r i g h t c h e m i c a l s and t h e r i g h t l i f e s t l y e and push t h a t t o o h a r d and i t b r e a k s down c o m p l e t l y . You j u s t have t o f i n d t h e r i g h t l e v e l and keep t o t h a t — l o t s o f s l e e p and good f o o d and normal h o u r s . Some p a r t i c i p a n t s found t h a t c e r t a i n f o o d s were worse t h a n o t h e r s , as one p e r s o n s a i d , " I f I have t o o much c o f f e e o r pop t h e n I c a n ' t s l e e p and i t g e t s worse." As w e l l , o n e p a r t i c i p a n t s a i d t h a t adequate i n t a k e was p a r t i c u l a r l y i m p o r t a n t when he was on m e d i c a t i o n . I f you don't e a t , you j u s t s o r t o f f a d e away from t h e w o r l d . You s l e e p a l o t more. Your meds a r e s o r t o f t a k i n g o v e r — i n s t e a d o f you. One p a r t i c i p a n t ' s s t a t e m e n t i l l u s t r a t e s t h e c o m p l e x i t y o f f a c t o r s i n f l u e n c i n g t h e i n d i v i d u a l s ' h e a l t h . I n h i s comment, he mentions a l l t h e f a c t o r s w h i c h have t o be c o n t r o l l e d . I n a d d i t i o n , he p o i n t s o u t how s t r e s s f u l i t i s t o manage t h e s i t u a t i o n . The a verage p e r s o n who's n o n s c h i z o p h r e n i c can go o u t and p a r t y u n t i l 2 o r 3 o ' c l o c k i n t h e morning and p u t i n a r e a s o n a b l e days work. The p e r s o n w i t h s c h i z o p h r e n i a 130 r e a l l y needs t h a t s l e e p , because i f you don't g e t t h a t you can r e a l l y have problems. So you have a r e s p o n s i b i l i t y t o t a k e m e d i c a t i o n , g e t enough s l e e p , watch y o u r d i e t . Which a g a i n i s a n o t h e r r e s p o n s i b i l i t y w h i c h t h e normal p e r s o n d o e s n ' t h a v e — w h i c h can i n c r e a s e t h e s t r e s s l e v e l a g a i n because you know you have s c h i z o p h r e n i a and you have t o have s l e e p . You j u s t have t o be more aware o f t h e s e t h i n g s . You r e a l l y do have t o w o r r y about y o u r s e l f . One o f t h e f i r s t s t e p s t o becoming a human b e i n g a g a i n i s managing y o u r m e d i c a t i o n . And you have t o t a k e c o n t r o l , because you know y o u r own needs and most s c h i z o p h r e n i c s t a k e what t h e y ' r e t o l d . You know what you need t o l i v e t h e way you want t o l i v e . I n summary, most p a r t i c i p a n t s e x p l a i n e d t h a t t h e y wanted t o s e l f - m a n g e t h e i r i l l n e s s . They f e l t t h a t i t was i m p o r t a n t t o have c o n t r o l , as t h e y were t h e most aware o f t h e i r own needs. P a r t i c i p a n t s s a i d t h a t t h e i r h e a l t h was improved when t h e y c o n t r o l l e d t h e m e d i c a t i o n s , s l e e p and r e s t , use o f l e i s u r e t i m e and d i e t . U s i n g S u p p o r t Systems From t h e a c c o u n t s , i t appeared t h a t t h r e e t y p e s o f s u p p o r t s were c o n s i d e r e d i m p o r t a n t t o t h e p a r t i c i p a n t s i n t h e s t u d y ; f a m i l y and f r i e n d s , community s e r v i c e s , and f i n a n c i a l a i d . Because o f a l l t h e d i f f i c u l t i e s a s s o c i a t e d w i t h h a v i n g t h e i l l n e s s , h a v i n g s u p p o r t from f a m i l y and f r i e n d s was v e r y s i g n i f i c a n t . I n a d d i t i o n , because o f t h e d i f f i c u l t y i n r e l a t i n g t o o t h e r s , b r o u g h t about by t h e i l l n e s s , t h e f a m i l y and f r i e n d s had t o be p a r t i c u l a r l y s e n s i t i v e t o t h e i n d i v i d u a l ' s needs. H a v i n g f r i e n d s and f a m i l y h e l p e d i n d i v i d u a l s t o r e m a i n i n t o u c h w i t h r e a l i t y and d e a l w i t h changes i n t h i n k i n g and p e r c e i v i n g . 131 H a v i n g a few s t a b l e p e o p l e i n my l i f e — s o m e b o d y a t work who i s aware o f y o u r c o n d i t i o n and i s v e r y s t a b l e . A s u p p o r t g r o u p — p e o p l e who don't n e c e s s a r i l y have e m o t i o n a l ups and d o w n s — t h a t a r e v e r y s t a b l e p e o p l e . Get a bunch o f t h o s e i n y o u r l i f e t h e n you can i d e n t i f y r e a l i t y . As w e l l as h e l p i n g them t o m a i n t a i n r e a l i t y o r i e n t a t i o n , many i n d i c a t e d t h a t f a m i l y and f r i e n d s were needed i n o r d e r f o r them t o f e e l c o m f o r a t b l e b e i n g around p e o p l e . As t h e f o l l o w i n g s t a t e m e n t s i l l u s t r a t e , s e v e r a l p a r t i c i p a n t s found t h a t h a v i n g s o c i a l r e l a t i o n s h i p s improved t h e chances o f b e i n g a b l e t o work w i t h p e o p l e . I h a t e d i n t e r a c t i o n w i t h o t h e r p e o p l e because I g o t p a r a n o i d and I g o t h y p e r . . . I t ' s s e t t l e d down now t h a t I have more s o c i a l c o n t a c t s . So t h a t ' s a good p o i n t , because I had no s o c i a l l i f e a t a l l . So I s t i l l l i k e b e i n g somewhat s o l i t a r y i n what I'm d o i n g , so I can c o n c e n t r a t e . O t h e r w i s e I g e t e a s i l y d i s t r a c t e d — b u t when I was p a r a n o i d i t was h o p e l e s s . I ' d j u s t q u i t . I ' d t h i n k t h e y were t a l k i n g b e h i n d my back...So h a v i n g s o c i a l s u p p o r t i s r e a l l y i m p o r t a n t because once you i n t e r a c t w i t h p e o p l e f o r a w h i l e t h e n y o u ' r e n o t so a f r a i d o f p e o p l e . You know what t o e x p e c t . I c o u l d work w i t h o t h e r p e o p l e now, p r o b a b l y . When I had no s o c i a l l i f e a t a l l , i t was i m p o s s i b l e . S o c i a l r e l a t i o n s h i p s had t o come f i r s t — a n d d e v e l o p i n g s k i l l s . And b e i n g a t [ t h e c l u b h o u s e ] h e l p e d . P a i d work had t o come a f t e r I had some c o n f i d e n c e and s o c i a l r e l a t i o n s h i p s . P a r t i c i p a n t s r e c e i v e d h e l p from f r i e n d s o r f a m i l y when o b t a i n i n g j o b s . The i n d i v i d u a l s ' p a r e n t s would encourage them t o t r y a g a i n , o r f r i e n d s would s u g g e s t a v a i l a b l e j o b s . Dad b e i n g t h e r e a l i s t i n my l i f e came i n t o t h e room, and he s a i d [son] I t h i n k [ t h e s t o r e ] i s g o i n g t o f o r g e t about you, so you b e t t e r go l o o k f o r a j o b . So i t was back t o t h e b o a r d s . T h i n g s t h a t have h e l p e d me f i n d a j o b — w o u l d be p r o b a b l y my mom and dad on my f i r s t j o b anyways, because I d i d n ' t want a j o b when I f i r s t g o t a j o b . And my mom would 132 s a y , " you've g o t t o go back and keep g o i n g back and b u g g i n g t h e m . " — a n d s t u f f l i k e t h a t . And I d i d t h a t , and g o t a j o b one summer. When I was l i v i n g a t [ t h e group home] and I was l o o k i n g f o r a j o b — m y b e s t f r i e n d had g o t t e n a j o b and he was s t i l l l i v i n g t h e r e . He k e p t t e l l i n g m e — a n d t h e r e was s o r t o f a c o m p e t i t i o n t h e r e — h e ' d say, "you're g o i n g t o f i n d a j o b . " W e l l a l o t o f p e o p l e around h e r e r e a d t h e morning paper and say t o somebody i n t h e room, " l o o k a t t h i s j o b . Why don't you l o o k i n t o i t . " — o r t h a t s o r t o f t h i n g happens. "Why don't we l o o k i n t o i t . " - o r "Are you i n t e r e s t e d i n t h i s o r a r e you i n t e r e s t e d i n t h a t ? " — i n t h e morning paper e v e r y day. A p a r t from t h e s u p p o r t o f f a m i l y and f r i e n d s , t h e s u p p o r t p r o v i d e d by community s e r v i c e s was c o n s i d e r e d v a l u a b l e by many p a r t i c i p a n t s . T h e i r a c c o u n t s i n d i c a t e d t h a t community s e r v i c e s h e l p e d them d e a l w i t h t h e i l l n e s s and work. P a r t i c i p a n t s e x p l a i n e d t h a t community s e r v i c e s h e l p e d them t o l e a r n l i f e and work s k i l l s , t o b u i l d c o n f i d e n c e and s e l f - e s t e e m and t o l e a r n about t h e i l l n e s s . One p a r t i c i p a n t s a i d he had l e a r n e d about h i s i l l n e s s and t h e need t o t a k e m e d i c a t i o n , a t a h o s p i t a l day program. He added t h a t he d i d n ' t r e a l i z e how he had b e n e f i t e d u n t i l much l a t e r . I t ' s d a y c a r e w h i c h i s n e x t t o [ t h e h o s p i t a l ] . . . I d i d n ' t know what i t had done f o r me u n t i l t i m e had p a s t o n — u n t i l I had gone on t o o t h e r t h i n g s . And I t h i n k what i t r e a l l y d i d f o r m e — b e c a u s e I had made t h e d e c i s i o n — oh, I'm g o i n g t o t a k e t h e m e d i c a t i o n . A n o t h e r p e r s o n s a i d t h a t t h e group i n t e r a c t i o n a t a r e h a b i l i t a i o n program h e l p e d him g a i n c o n f i d e n c e and s e l f -esteem. A l l day I ' d be asked q u e s t i o n s back and f o r t h — a n d you'd s t a r t t o t r y t o f i n d t h e good i n them and you s t a r t b u i l d i n g t h a t p e r s o n up. And I guess you don't r e a l i z e i t , b u t t h e y ' r e b u i d i n g you up t o o . You s t a r t b u i l d i n g 133 t h a t p e r s o n up and t a l k i n g about t h e i r i n t e r e s t s — a n d I ' d be d o i n g t h a t a l l day-—and I d i d g e t something out o f i t . O t h e r s mentioned t h e p a r t i c u l a r s k i l l s t h a t t h e y had g a i n e d t h r o u g h community programs. When I was g o i n g t o [a r e h a b i l a t a t i o n program] I began t o become more s e l f - c o n f i d e n t — m o r e a s s e r t i v e w i t h s m a l l t h i n g s — j u s t b u i l d i n g up j o b s k i l l s and l i f e s k i l l s . W o rking i n t h e l u n c h u n i t f o r two y e a r s , I l e a r n e d how t o cook. P l u s I was i n t h e j a n i t o r i a l u n i t so I l e a r n e d how t o c l e a n . P l u s I have my apartment t o c l e a n r i g h t now. They t a u g h t me how t o do s t u f f l i k e t h a t . You need e x t r a h e l p i n t h a t i f y o u ' r e s c h i z o p h r e n i c . The community s e r v i c e s seemed t o p r o v i d e an a c c e p t a n c e n o t f o u n d e l s e w h e r e . No m a t t e r how low down you s i n k , t h e r e ' s a p l a c e t o go. T h a t ' s r e a l l y i m p o r t a n t , because so o f t e n p e o p l e g e t i s o l a t e d from t h e i r f a m i l i e s and t h e y have r e a l l y nowhere t o go o r nowhere t h e y f e e l i s t h e i r f a m i l y . They have a wide s u p p o r t i v e network [ a t t h e c l u b h o u s e ] . L i k e t h e y have l o t s o f b r e a k s so t h e y g e t t o smoke w i t h each o t h e r and have c o f f e e t o g e t h e r and so o n . . . I t ' s l i k e a s u p p o r t i v e environment. I had a sense o f b e l o n g i n g and no m a t t e r what I d i d I was a c c e p t e d t h e r e f o r who I was. I was a c c e p t e d as t h e w i t h d r a w n shy, c r a z y p e r s o n who c o u l d o n l y chop a few v e g e t a b l e s . H a v i n g a p l a c e t o go where t h e y d i d n ' t have t o " p r e t e n d " was i m p o r t a n t because, as d i s c u s s e d b e f o r e , many p a r t i c i p a n t s " p r e t e n d e d t o be n o r m a l " a t work. Those who went t o c l u b h o u s e s s a i d t h e y f e l t c o m f o r t a b l e t h e r e , because t h e y d i d n ' t have t o " h i d e " t h e i r i l l n e s s . I f i n d g o i n g up t o [ t h e c l u b h o u s e ] f i n e because you can r e l a x t h e r e . P e o p l e don't j u s t s i t around t a l k i n g about t h e i r i l l n e s s e s , b u t you can s t i l l t a l k about i t w i t h p e o p l e . I m o s t l y go t h e r e f o r s o c i a l t i m e s i n t h e 134 evening...Nobody r e a l l y t a l k s about t h e i r i l l n e s s a l o t . I t k i n d o f p u t s a l i t t l e p r e s s u r e on you, n o t s a y i n g a n y t h i n g a t work. F o r some p a r t i c i p a n t s , a t c e r t a i n t i m e s , t h e j o b s e s t a b l i s h e d by t h e community s e r v i c e were t h e most s u i t a b l e f o r me e t i n g t h e i n d i v i d u a l ' s needs. T h i s [ c l u b h o u s e ] t h a t I ' d been g o i n g t o , t h e y have low s t r e s s j o b s such as w o r k i n g on t h e n e w s l e t t e r , c l e a n i n g t h e k i t c h e n , c l e a n i n g t h e house. So you f e e l l i k e y o u ' r e w o r k i n g . You a c t u a l l y a r e w o r k i n g , b u t i t ' s f a i r l y low p r e s s u r e and you don't have t o phone i n s i c k o r you don't have t o wo r r y about e x p e c t a t o n s — s o everybody's q u i t e u n d e r s t a n d i n g . So i t ' s a n i c e b a l a n c e . The c l u b h o u s e i s where I work and I'm p r e t t y w e l l — I s o r t o f f i t i n up t h e r e and i t ' s v e r y s e c u r e . I don't r e a l l y know how I ' d do i n a n o t h e r s e t t i n g . On t h i s j o b h e r e , I've been w o r k i n g f o r 13 weeks w i t h o u t b e i n g — b u t i t ' s i n a s u p p o r t i v e work p r o g r a m — w i t h o u t m i s s i n g a day, o r b e i n g l a t e o r a n y t h i n g — d o my q u o t a e v e r y d a y , o f c a b l e s — i t ' s o n l y 4 h o u r s . I don't t h i n k I c o u l d do i t f o r e i g h t h o u r s F o r some t h e community s e r v i c e s p l a y e d a v e r y l a r g e r o l e i n t h e i r employment and h e a l t h s t a t u s , as one i n d i v i d u a l s a i d , " I was c l u e d o u t o f i t j u s t seven y e a r s ago and now t h e y — I p r e t t y w e l l owe e v e r y t h i n g I've done s i n c e t h e n t o them." The t h i r d a r e a o f s u p p o r t was f i n a n c i a l s u p p o r t . As w i t h t h e o t h e r t y p e s o f s u p p o r t , f i n a n c i a l s u p p o r t seemed t o h e l p many t h e i n d i v i d u a l s t o cope w i t h t h e i l l n e s s and m a i n t a i n h e a l t h , and i t i n f l u e n c e d t h e i n d i v i d u a l s ' work s t a t u s . F i n a n c i a l s u p p o r t came i n t h e form o f r e n t a l a s s i s t a n c e and d i r e c t income. Some p a r t i c i p a n t s s a i d t h a t s u p p o r t e d h o u s i n g a c t u a l l y s e r v e d as a m o t i v a t o r f o r them t o 135 g e t a j o b . They d i d n ' t have t o w o r r y about how much money t h e y made, so t h e y c o u l d g e t a p a r t - t i m e , low s t r e s s j o b and s t i l l a f f o r d " n i c e " accomodation. L i k e y o u ' r e o n l y p a y i n g t h i r t y p e r c e n t o f y o u r s a l a r y , t h e n you can a f f o r d t o do t h e low p a y i n g j o b s . T h i s p l a c e g i v e s you i n c e n t i v e t o g e t a j o b because y o u ' l l have more money—and t h e y o n l y r a i s e y o u r r e n t t o t h i r t y p e r c e n t . So i t ' s an i n c e n t i v e f o r me t o be p a y i n g more r e n t — b e c a u s e y o u ' r e p u l l i n g y o u r w e i g h t more. I t p r o t e c t s you i n a way. I f y o u ' r e h a v i n g t r o u b l e w i t h y o u r j o b , i t g i v e s you s e c u r i t y . Takes a l o a d o f f y o u r mind. S u i t a b l e h o u s i n g was c o n s i d e r e d s i g n i f i c a n t t o p a r t i c i p a n t s . One p e r s o n emphasized t h e i m p o r t a n c e o f h o u s i n g as she s a i d , " I t h i n k h a v i n g a p l a c e i s j u s t as i m p o r t a n t as h a v i n g a j o b . " S i m i l a r comments were made about p e n s i o n s . R e c e i v i n g a h a n d i c a p p e n s i o n made i t e a s i e r f o r i n d i v i d u a l s t o work a t low p a y i n g , low s t r e s s j o b s . L i k e i f somebody r e a l l y needs a h a n d i c a p p e n s i o n , t h e y s h o u l d have i t — w h o may be a b l e t o work p a r t t i m e , b u t w i l l n e v e r be a b l e t o s u p p o r t t h e m s e l v e s . I t h i n k t h e y s h o u l d be on a p e n s i o n and t h e n work as much as t h e y can. As i n d i c a t e d i n t h e p r e v i o u s comments, t h e r e n t a l a s s i s t a n c e , i n an i n d i r e c t way, h e l p e d t h e p e r s o n t o r e m a i n w e l l . I t d e c r e a s e d t h e s t r e s s a s s o c i a t e d w i t h f i n a n c i a l r e s p o n s i b i l i t i e s . The d i s a b i l t y p e n s i o n s a v a i l a b l e f o r i n d i v i d u a l s had a s i m i l a r e f f e c t . When you c a n ' t w o r k — a n d you don't have t o move o u t a l l o f a sudden [because o f t h e p e n s i o n ] — a n d t h e r e ' s t h a t b i t o f f l e x i b i l i t y i n t h a t p e n s i o n t o o . When you c a n ' t work you don't have t o r e a p p l y . I t comes back a u t o m a t i c a l l y , so you don't have t o go t h r o u g h a l l t h e paper work a g a i n . So t h a t works out v e r y w e l l . 136 The s i g n i f i c a n c e o f t h e s e f i n a n c i a l s u p p o r t s t o t h e w e l l b e i n g o f p a r t i c i p a n t s was made c l e a r i n t h e s t a t m e n t s o f two o f t h e p a r t i c i p a n t s . I t h i n k a t t h i s p o i n t I s h o u l d say a l o a d o f s t r e s s has come o f f me, because I've been a b l e t o g e t money from t h e g o v e r n m e n t — b e c a u s e I'm on d i s a b i l i t y . So t h a t ' s why I'm k e e p i n g an apartment. O t h e r w i s e I woul d n ' t be a b l e t o a f f o r d i t o f c o u r s e . My p a r e n t s were s u p p o r t i n g me, because I c o u l d n ' t make enough t o l i v e on my own. I was c o n s i d e r i n g moving back home w i t h them, b u t my d o c t o r s u g g e s t e d t h a t I keep my own p l a c e , because I become t o o dependent and t o o withdrawn i f I move home a g a i n . So she s u g g e s t e d t h a t I s h o u l d g e t t h i s — a n d so I c o u l d keep my own p l a c e . She hopes t h a t I w i l l g e t b e t t e r so t h a t I can g e t work. So t h a t ' s a tremendous s t r e s s o f f me. I t ' s t a k e n a l o t o f p r e s s u r e o f f me. L i k e b e f o r e when I was w o r k i n g , I ' d t h i n k I have t o e a r n a t l e a s t t e n d o l l a r s an h o u r — o r have t o have a good j o b o r I c a n ' t a f f o r d t o l i v e and so on. Here, i f I l o s e a j o b , t h e r e n t goes down. I f I g e t a j o b , t h e r e n t goes up....That's a b i g w e i g h t o f f y o u r s h o u l d e r s — b e c a u s e I know what t h e t e n d o l l a r an hour j o b s a r e l i k e . . . . T h e r e ' s a l o t o f p r e s s u r e . I n summary, many s a i d t h a t f a m i l y and f r i e n d s h e l p e d them t o s t a y i n t o u c h w i t h r e a l i t y and encouraged them t o f i n d work. From t h e i r a c c o u n t s , i t appeared t h a t d e v e l o p i n g s o c i a l r e l a t i o n s h i p s was an i m p o r t a n t s t e p i n p r o g r e s s i n g t o w o r k i n g w i t h o t h e r p e o p l e . The m a j o r i t y s a i d t h a t community s u p p o r t s were v a l u a b l e i n p r o v i d i n g u n c o n d i t i o n a l a c c e p t a n c e . They s a i d t h e y c o u l d r e l a x , and n o t have t o " p r e t e n d . " P a r t i c i p a n t s who a t t e n d e d community programs l e a r n e d l i f e s k i l l s and j o b s k i l l s , and found t h e i r s e l f - e s t e e m and s e l f -c o n f i d e n c e improved. F o r some p a r t i c i p a n t s , t h e community programs o f f e r e d t h e most s u i t a b l e work. F i n a n c i a l s u p p o r t , t h a t i s r e n t a l a s s i s t a n c e and income a s s i s t a n c e , made i t e a s i e r f o r some p a r t i c i p a n t s t o work as t h e y c o u l d work a t j o b s t h a t p a i d l e s s b u t were a l s o l e s s s t r e s s f u l . F i n a n c i a l a s s i s t a n c e was a l s o a b e n e f i t t o m e n t a l h e a l t h as i t d e c r e a s e d t h e p a r t i c i p a n t ' s f i n a n c i a l w o r r y . S e l e c t i n g Working C o n d i t i o n s P a r t i c i p a n t s i n d i c a t e d t h a t , as w e l l as c o n t r o l l i n g c e r t a i n f a c t o r s and u s i n g s u p p o r t systems, s e l e c t i n g j o b s w i t h s u i t a b l e w o r k i n g c o n d i t i o n s improved t h e i r chances o f b e i n g a b l e t o m a i n t a i n employment. As one p e r s o n s t a t e d , " C e r t a i n j o b s b r i n g o u t g r e a t e r problems t h a n o t h e r s . You need t o f i n d something t h a t you can manage." I t seemed t h a t , h a v i n g gone t h r o u g h s e v e r a l j o b s and h a v i n g l i v e d w i t h t h e i l l n e s s f o r a p e r i o d o f t i m e , i n d i v i d u a l s were a b l e t o d i s c e r n t h e i r own needs and a r e a s o f v u l n e r a b i l i t y . They were t h e r e f o r e a b l e t o i d e n t i f y work c o n d i t i o n s t h a t were t h e most f a v o r a b l e f o r them. One i n d i v i d u a l s comment i l l u s t r a t e s t h i s . I'm j u s t g e t t i n g c l o s e r t o knowing what my l e v e l s a r e . So i f I go i n t o a j o b i n t e r v i e w and t h e y t e l l me c e r t a i n t h i n g s and I know I c a n ' t do t h a t — w e l l , t h e r e ' s no p o i n t i n s a y i n g , y es I can do t h a t , because I know I won't be a b l e t o . P a r t i c i p a n t s i d e n t i f i e d c e r t a i n work c o n d i t i o n s t h a t t h e y c o n s i d e r e d when s e l e c t i n g a j o b . One was t h e amount and t y p e o f m e n t a l i n v o l v e m e n t . Some p r e f e r r e d work w i t h a moderate amount o f m e n t a l demand. When I was s t o c k i n g t h e s h e l v e s — y o u ' r e moving and i t ' s low l e v e l t h i n k i n g — b u t y o u r mind i s w o r k i n g , b u t i t ' s n o t o v e r w o r k i n g and i t ' s n o t u n d e r w o r k i n g . I t ' s j u s t w o r k i n g a t a medium l e v e l . And t i m e goes q u i c k l y . I f 138 y o u ' r e j u s t s t a n d i n g t h e r e , t h e t i m e goes so s l o w l y . T h a t ' s when y o u r mind s t a r t s p l a y i n g t r i c k s on you. So d o i n g t h i n g s on a low even l e v e l seems t o be t h e b e s t t h i n g — w i t h a l i t t l e v a r i a t i o n . To make t h e wrong d e c i s i o n — t h e n y o u ' r e r e a l l y g o i n g t o g e t y o u r s e l f i n t r o u b l e . So t h e k i n d o f work you've g o t t o s t a r t o f f w i t h i s n o t n e c e s s a r i l y a p h y s i c a l n o n t h i n k i n g j o b — b e c a u s e you do need t o t h i n k . You do need t o e x e r c i s e t h e b r a i n . Maybe something t h a t d o e s n ' t r e q u i r e d e c i s i o n — d o i n g t e c h n i c a l c a l c u l a t i o n s — o r s omething l i k e t h a t . N o t h i n g t h a t r e q u i r e s an o p i n i o n , because a l o t o f y o u r o p i n i o n s a r e based on y o u r f e e l i n g s about something. O t h e r s p r e f e r r e d work w i t h l i t t l e m e n t a l demand. I don't l i k e work t h a t i s m e n t a l l y demanding. I'm n o t s u r e what i t i s . I k i n d o f l i k e work t h a t ' s g o t a p h y s i c a l component t o i t — a n d a b i t o f a m e n t a l component t o o . I t ' s j u s t my p e r s o n a l p r e f e r e n c e . I l i k e t o do my own s t u f f and i f I'm t o o t i r e d o u t m e n t a l l y , I c a n ' t do what I want t o do on t h e s i d e . A n o t h e r a s p e c t o f work c o n d i t i o n s , t h a t p a r t i c i p a n t s c o n s i d e r e d , was t h e amount o f p h y s i c a l i n v o l v e m e n t i n t h e j o b . A g a i n , t h e r e were i n d i v i d u a l d i f f e r e n c e s i n t h e t y p e and amount o f p h y s i c a l i n v o l v e m e n t d e s i r e d . I j u s t t h o u g h t o f something I f i n d t h a t ' s v e r y i m p o r t a n t i s — when I'm w o r k i n g I want t o be d o i n g s o m e t h i n g . . . I want t o be e i t h e r d o i n g something w i t h my hands o r some a c t i v i t y — n o t as I s a i d v e r y r e p e t i t i v e , f a s t t y p e o f work, b u t something where I'm d o i n g s o m e t h i n g — r a t h e r t h a n say a s — l i k e a s a l e s p e r s o n , where I'm. s t a n d i n g around. I l i k e d t h e s e c u r i t y j o b because I w a l k e d around i n a c i r c l e a l l t h e t i m e and burned o f f a l o t o f energy t h a t way. I t g e t s r i d o f a l i t t l e b i t o f i r r i t a t i o n — b e c a u s e y o u ' r e d o i n g something r a t h e r t h a n j u s t s t a n d i n g t h e r e -j u s t t h i n k i n g a l l t h e t i m e . So t h e n a t u r e o f t h e work seems v e r y i m p o r t a n t . Some p a r t i c i p a n t s p r e f e r r e d a j o b w h i c h i n v o l v e d c o n t a c t w i t h a l i m i t e d number o f p e o p l e . 139 H a v i n g t o d e a l w i t h somebody i n t h e o f f i c e a l l t h e t i m e can g e t r e a l l y s t r e s s f u l . L i k e i f you were a w a i t r e s s o r a w a i t e r — a n d h a v i n g t o d e a l w i t h t h e p u b l i c — o r i n s a l e s . I t would be v e r y v e r y c o m p l i c a t e d . Because as a s a l e s p e r s o n y o u ' r e h a v i n g t o r e a d t h e p e r s o n and h a v i n g t o r e a c t , and w i t h s c h i z o p h r e n i a y o u r i n f o r m a t i o n y o u ' r e g e t t i n g i s a l l — o r can be i n c o r r e c t . You can r e a l l y g e t y o u r s e l f i n d i f f i c u l t y . So l i m i t i n g t h e number o f p e o p l e you have t o d e a l w i t h , i n i t i a l l y , i s a good d e c i s i o n . M o s t l y a j o b where you don't have t o be around p e o p l e . I'm s o c i a l l y h a n d i c a p p e d — e i t h e r n o t around p e o p l e h a r d l y a t a l l o r my own b u s i n e s s . O t h e r p a r t i c i p a n t s wanted t o work w i t h p e o p l e . One p e r s o n s a i d , about work, t h e " s o c i a l c o n t a c t i s v e r y r e w a r d i n g . " A n o t h e r p e r s o n s a i d , " I t becomes s o c i a l . . . I t ' s good t o be a b l e t o h e l p t h e c a s h i e r , and t h e y say t h a n k s and t h e y ' r e p o l i t e . " Y e t a n o t h e r i n d i v i d u a l s a i d , " I l i k e t o work around p e o p l e . . . I d e a l w i t h p e o p l e a l l day l o n g . " A n o t h e r a s p e c t t h a t i n d i v i d u a l s c o n s i d e r e d when a p p l y i n g f o r a j o b s was t h e t i m e o f day t h a t one had t o work. Some p a r t i c i p a n t s p r e f e r r e d r e g u l a r day s h i f t s r a t h e r t h a n e v e n i n g o r n i g h t s h i f t s . I worked g r a v e y a r d s h i f t a t t h e [ j o b ] l a s t summer and i t was t e r r i b l e , t e r r i b l e . I c o u l d n ' t have k e p t i t up f o r v e r y l o n g . So I t h i n k r e g u l a r h o u r s d u r i n g t h e day a r e i m p o r t a n t u n l e s s y o u ' r e a n i g h t p e r s o n . A n o t h e r p a r t i c i p a n t p r e f e r r e d t o work e v e n i n g s h i f t s . He s a i d , " I f i n d i t e a s i e r d o i n g s h i f t work t h a n w o r k i n g a t 7:30 i n t h e morning. I t s h a r d f o r me." S e v e r a l p a r t i c i p a n t s e x p l a i n e d t h a t when w o r k i n g d a y s h i f t , t h e y d i d n o t want t o s t a r t work t o o e a r l y . We s t a r t a t t e n o ' c l o c k . I f I wake up a t e i g h t o ' c l o c k , I don't have any r u s h t o g e t t h e r e . I don't s t a r t t i l l t e n o ' c l o c k . So a l a t e r s t a r t i n g t i m e i s b e t t e r f o r me 140 because I'm t e r r i b l e i n t h e morning. M o r n i n g i s my w o r s t t i m e . So t h a t works o u t n i c e t o o , s t a r t i n g a t t e n o ' c l o c k . I t e n d t o work b e s t i n t h e m i d d l e o f t h e day, 10 t o 3 seem t o be my b e s t h o u r s . So I t r y — w h e n I have t h e c h o i c e — I t r y t o do my a c t i v i t e s a t t h a t t i m e — a c e r t a i n t i m e when I'm more a l e r t . Mornings I'm s o r t o f s l u g g i s h . The number o f h o u r s o f work p e r day seemed t o be c r u c i a l . Some i n d i v i d u a l s f e l t c a p a b l e o f w o r k i n g o n l y two t o t h r e e h o u r s a day, w h i l e o t h e r s worked an e i g h t hour day. I t h i n k t h e r e s h o u l d be f l e x i b i l i t y i n how many ho u r s and how many days a week you work. Some day I might be c a p a b l e o f w o r k i n g a f u l l d a y — f u l l week. I t h i n k I c o u l d work f o r two o r t h r e e h o u r s at a t i m e . I t h i n k I c o u l d work maybe f o u r h o u r s a day, a t a j o b f o r f i v e days a w e e k — n o t o v e r t h a t . H a v i n g some f l e x i b i l i t y i n t h e work c o n d i t o n s was a l s o deemed n e c e s s a r y . One p a r t i c i p a n t s a i d t h a t i t was i m p o r t a n t t o have a j o b where she c o u l d t a k e a break as n e c e s s a r y . I f you need t o — y o u j u s t l a y down f o r an h o u r — g o out and t a k e a walk f o r a h a l f hour. T e l l y o u r boss y o u ' r e t a k i n g a b r e a k . Some p a r t i c i p a n t s s a i d i t would be d e s i r a b l e t o have a j o b w i t h some f l e x i b i l i t y i n t a s k s . On "good" days t h e i n d i v i d u a l c o u l d do more demanding t a s k s and on "poor" days, l e s s damanding t a s k s c o u l d be done. One p a r t i c i p a n t had f o u n d a j o b w i t h t h i s t y p e o f f l e x i b i l i t y . I have t h e a b i l i t y t o a d j u s t t h e day f a i r l y e a s i l y . I f I'm h a v i n g a bad day, I can v e r y e a s i l y s h i f t o f f something t h a t r e q u i r e s r e a l d e c i s i o n making i n t o some k i n d o f m e n i a l , j u s t numbers k i n d o f t a s k . 141 S e v e r a l p a r t i c i p a n t s e x p l a i n e d t h a t i t would be n i c e t o g e t a j o b t h a t p r o v i d e d f l e x i b i l i t y i n terms o f t a k i n g t i m e o f f from work. I t has t o be f l e x i b l e because i f I j u s t g i v e up o r s o mething l i k e t h a t — m a y b e j u s t walk o u t o r s o m e t h i n g — maybe I ' l l come t o my senses and come back a g a i n . So t h e r e has t o be f l e x i b i l i t y i n t h a t s ense. W i t h o u t w a r n i n g sometimes I j u s t have a problem. And t h e n t h e n e x t day I'm f i n e and work j u s t as w e l l as anybody e l s e . So t h e r e i s t h a t f l e x i b i l i t y t h a t ' s i m p o r t a n t . Each month i s so d i f f e r e n t . I don't know t h a t many o t h e r p e o p l e w i t h s c h i z o p h r e n i a — e x c e p t from c a s u a l c o n t a c t — s o I r e a l l y don't know how t h e i r e x p e r i e n c e s a r e . I presume t h a t t h e y f l u c t u a t e and have t h e i r good t i m e s and t h e i r bad t i m e s . W i t h many j o b s you have t o have a l l good t i m e s . You're n o t e xcused. You have t h e f l u f o r a few days b u t you c a n ' t t a k e t h e month o f f . I t ' s t h e f l e x i b i l i t y t h a t i s i m p o r t a n t t o o . I'm a c t u a l l y f a i r l y good a t what I do when I'm w e l l . I do a good j o b and e n j o y i t — b u t as I say b e c a u s e — i t goes up and down e v e r y month. As p r e v i o u s l y d i s c u s s e d , most p a r t i c i p a n t s d i d n o t want t o i n f o r m t h e i r employers about t h e i l l n e s s . However some p a r t i c i p a n t s i n d i c a t e d t h a t h a v i n g an employer who was u n d e r s t a n d i n g was i m p o r t a n t . W e l l i t ' s o n l y been i n r e c e n t y e a r s t h a t I've had h e l p — employers u n d e r s t o o d t h e p r o blem and t h e y would be more f l e x i b l e . J u s t knowing t h a t somebody knows you've g o t a p r o b l e m h e l p s . L i k e I've had h e l p i n t h e l a s t few y e a r s . A n o t h e r a s p e c t t h a t p a r t i c i p a n t s c o n s i d e r e d when l o o k i n g f o r a j o b was t h e t y p e and amount o f s u p e r v i s i o n . Most p a r t i c i p a n t s p r e f e r r e d low key s u p e r v i s i o n . As one p e r s o n s t a t e d , " I don't l i k e my boss l o o k i n g o v e r my s h o u l d e r a l l 142 t h e t i m e . " A n o t h e r p e r s o n s a i d she e n j o y e d a j o b i n w h i c h she had r e l a t i v e l y l i t t l e s u p e r v i s i o n . Nobody was h a n g i n g around w a t c h i n g me, so I would go from b u i l d i n g t o b u i l d i n g — a n d t h e r e was a l o t o f freedom i n t h a t j o b . I j u s t had t o r e p o r t back once a month how I was d o i n g — t o make s u r e I wasn't g e t t i n g b e h i n d . Even though many p a r t i c i p a n t s were u n c e r t a i n about t e l l i n g e m ployers about t h e i l l n e s s , a number o f p a r t i c i p a n t s wanted t o work w i t h employers who knew how t o communicate w i t h someone who has s c h i z o p h r e n i a . An employer might have t o e x p l a i n something more t h a n once. He might have t o e x p l a i n t h i n g s s e v e r a l t i m e s because my mind might be somewhere e l s e and I might m i s s t h e whole t h i n g — g i v e an e x p l a n a t i o n how t o do i t and I m i g h t m i s s t h e whole t h i n g — n o t p l u g g e d i n eh. I f he [ t h e employer] c r i t i c i z e s someone w i t h s c h i z o p h r e n i a , he might d e v a s t a t e t h e p e r s o n by s a y i n g t h e wrong t h i n g o r something. I f you employed a s c h i z o p h r e n i c and you were t o go i n t h e r e and say something t o h i m — h e might n o t be h e a r i n g what y o u ' r e s a y i n g . He might be i n t e r p r e t i n g i t i n c o r r e c t l y . T h e r e f o r e you have t o , i n i t i a l l y , b e f o r e you g e t i n t o any heavy d u t y w o r k — i s d e v e l o p a good r a p p o r t - w i t h t h a t p e r s o n so t h a t t h e y know w h e n — l i k e i f y o u ' r e t h e boss and i f you came on r e a l l y s t r o n g , you'd p r o b a b l y f r e a k t h e guy o u t . I f you came on w i s h y washy, he'd be j u s t as f r e a k e d o u t , because a t b o t h extremes y o u r n o t on s o l i d ground. You, t h e b o s s , have t o be v e r y c o n s i s t e n t , much more on s o l i d ground because he i s g o i n g t o use you as an anchor i n h i s l i f e . He [ t h e p e r s o n w i t h s c h i z o p h r e n i a ] c a n ' t r e a d between t h e l i n e s . And i f you [ t h e employer] come i n and make some h a l f a s s e d j o k e about something, he c o u l d i n t e r p r e t i t i n c o r r e c t l y . So t o employ a s c h i z o p h r e n i c , you have t o be v e r y s t r a i g h t f o r w a r d — v e r y h o n e s t w i t h t h e p e r s o n because t h e y can n o t r e l y on t h e i r — w h a t you might c a l l p e r i f e r a l s enses t o p i c k up second meanings on what you might be s a y i n g . 143 Y e t a n o t h e r a s p e c t t h e y c o n s i d e r e d was t h e m e a n i n g f u l n e s s o f t h e work. P a r t i c i p a n t s wanted t o o b t a i n work t h a t was e n j o y a b l e and o f p a r t i c u l a r i n t e r e s t t o them. You've g o t t o have something t h a t means something t o you e v e n t u a l l y down t h e r o a d . A n o t h e r t h i n g i s a j o b t h a t you e n j o y d o i n g . Not j u s t t h e r e t o p u t i n e i g h t h o u r s . A j o b t h a t a t t h e end o f t h e day you can say, " I d i d a good j o b . " I t ' s n i c e t o g e t a j o b t h a t y o u ' r e i n t e r e s t e d i n — n o t j u s t w alk i n t o a p l a c e — t a k e t h e j o b j u s t f o r t h e money--something t h a t you'd be i n t e r e s t e d i n d o i n g . A l t h o u g h i t was d i f f i c u l t t o f i n d work t h a t p r o v i d e d t h e r i g h t h o u r s , f l e x i b i l i t y , enjoyment and s u i t a b l e s u p e r v i s i o n , some p a r t i c i p a n t s e x p l a i n e d t h a t t h e y had, a t t i m e s , found work w i t h s u i t a b l e w o r k i n g c o n d i t i o n s . One p a r t i c i p a n t e x p l a i n e d t h a t v o l u n t e e r work, a l t h o u g h n o t p r o v i d i n g an income, was b e n e f i c i a l f o r i n c r e a s i n g s e l f - e s t e e m and s e l f -c o n f i d e n c e . I s t a r t e d w i t h t h e v o l u n t e e r work w h i c h i s alw a y s been e a s i e r — l e s s s t r e s s f u l — p a r t l y because I don't f e e l t r a p p e d i n i t and second o f a l l t h e h o u r s a r e s h o r t e r . And a l s o v o l u n t e e r j o b s have been f a i r l y p l e a s a n t t o do--so t h e y ' v e always been e a s i e r on me t h a n a j o b — e v e n a s i m p l e j o b . T h i s p a r t i c i p a n t e x p l a i n e d o t h e r b e n e f i t s o f d o i n g v o l u n t e e r work. And as a v o l u n t e e r I d i d n ' t have t o g i v e a resume. I j u s t had t o w r i t e i n an a p p l i c a t i o n form. So I d i d n ' t have t o go i n t o my p a s t work h i s t o r y . So t h a t saved me a l o t o f embarrassment about what I was d o i n g . So a f t e r 16 weeks I can say, " w e l l t h a t was g r e a t . I 'd l i k e t o c o n t i n u e on i n a n o t h e r a s s i g n m e n t " o r , "no, I'm n o t f e e l i n g t o o g r e a t . " I don't say t h a t — b u t i f I'm n o t f e e l i n g t o o g r e a t I might t a k e t h e n e x t few months o f f . So you've g o t a l o t o f f l e x i b i l t y t o r e - e v a l u a t e 144 e v e r y few m o n t h s — w i t h o u t a c t u a l l y q u i t i n g . You have t h a t freedom t o change o r t o l e a v e w i t h o u t any problems a t t a c h e d t o t h a t , whereas you c o u l d n ' t i f you were w o r k i n g . O t h e r s found t h a t s u p p o r t i v e work p r o v i d e d t h e b e s t employment o p p o r t u n i t y f o r them. I t p r o v i d e d t h e h o u r s , t h e low s t r e s s and t h e f l e x i b i l i t y t h a t was d e s i r e d . As w e l l , e mployers i n s u p p o r t i v e work programs were u n d e r s t a n d i n g and h e l p f u l . I t h i n k s u p p o r t i v e work programs a r e a good i d e a . I seem t o be d o i n g b e t t e r . I f I have an e p i s o d e t h e n I can c o m e — t h e y ' l l u n d e r s t a n d — a n d t h e n I can come back t o i t — b e g i v e n t h e j o b back a g a i n o r something. R i g h t now I'm d o i n g q u i t e w e l l . I'm w o r k i n g q u i t e s o l i d l y . A n o t h e r p a r t i c i p a n t s t a t e d t h a t commissioned s a l e s were a good s o u r c e o f employment. The b e s t t h i n g I can t h i n k o f i s a commissioned s a l e s — where y o u ' r e on y o u r own. T h a t ' s where I g a i n e d a l o t o f c o n f i d e n c e — w a s i n t e l e p h o n e s a l e s — b e c a u s e I c o u l d do i t a t my speed. I n summary, p a r t i c i p a n t s i d e n t i f i e d t h e i m p o r t a n c e o f f i n d i n g a j o b t h a t met t h e i n d i v i d u a l ' s needs. Hours o f work, m e n t a l and p h y s i c a l i n v o l v e m e n t , f l e x i b i l i t y , s u p e r v i s i o n , i n t e r e s t and enjoyment were a s p e c t s o f w o r k i n g c o n d i t i o n s t h a t p a r t i c i p a n t s c o n s i d e r e d when l o o k i n g f o r work. Some p a r t i c i p a n t s had found t h a t v o l u n t e e r work, s u p p o r t e d work, and commissioned s a l e s work met s e v e r a l o f t h e i r c r i t e r i a . M a i n t a i n i n g ; Optimism Towards t h e end o f t h e i n t e r v i e w s , p a r t i c u l a r l y t h e second i n t e r v i e w s , p a r t i c i p a n t s made s t a t e m e n t s t h a t 145 i n d i c a t e d t h e y f e l t more p o s i t i v e and h o p e f u l about t h e i l l n e s s and t h e work e x p e r i e n c e s and t h i s o p t i m i s m was seen as a way o f c o p i n g w i t h b o t h o f t h e s e e x p e r i e n c e s . There's always some l i t t l e b u b b l e o f o p t i m i s m . I guess ' t h a t ' s t h e h e a l t h y part...Where I can go down l i k e a t r e e i n a sto r m , b u t bounce up a g a i n . . . . S o i t — n o w I'm g e t t i n g a l i t t l e o l d e r I'm f e e l i n g more i n c o n t r o l — l i k e t h e t h i n g s I can do and c a n ' t do. J u s t because you q u i t u n i v e r s i t y d o e s n ' t mean y o u r l i f e i s f o r e v e r o v e r — a n d t o g e t v e r y v e r y d e p r e s s e d — t o know t h a t , y e s , t h e r e a r e p e o p l e who've been t h r o u g h t h i s and yes t h e y have become w e l l a g a i n — a n d j u s t t a k e i t e a s y . . . J u s t g e t back on y o u r f e e t a g a i n as soon as p o s s i b l e . And e n j o y t h e t i m e o f f you need t o r e c u p e r a t e — a n d don't r u s h i t . Take y o u r d o c t o r ' s a d v i c e . . . B u t t h e r e ' s some t y p e o f hope i n t h e f u t u r e . I guess i t ' s l i k e somebody who i s on c r u t c h e s . They know t h e y ' r e g o i n g t o f a l l once i n a w h i l e , b u t t h e y keep g e t t i n g up a g a i n . J u s t t r y n o t t o g e t d i s c o u r a g e d and when you a r e d i s c o u r a g e d , l e a n on o t h e r s f o r s u p p o r t — f a m i l y and y o u r f r i e n d s and t h e y ' l l say keep g o i n g . Because i t can be q u i t e d e p r e s s i n g — b u t you j u s t keep s a y i n g , I know I'm h e r e f o r a purpose. I know I have v a l u e . You have t o be y o u r own g r e a t e s t s e l f -esteem b o o s t e r — a n d j u s t t r y a g a i n — a n d a b i t o f a sense o f humor t o o . You do have t o say, w e l l — n o t t o t a k e e v e r y t h i n g as a l i f e and d e a t h d e c i s i o n . As t h e i n d i v i d u a l s u g g e s t e d i n t h e above comment, she f e l t she had t o be h e r own s e l f - e s t e e m b o o s t e r and g e n e r a t e some p o s i t i v e t h i n k i n g and o p t i m i s m . O t h e r s s h a r e d t h i s o p i n i o n . I t seemed t h a t i t was i m p o r t a n t t o g e n e r a t e p o s i t i v e t h i n k i n g on t h e i r own/ because o f t e n o t h e r s would n o t even r e a l i z e t h a t t h e p e r s o n needed encouragement. That i s , o t h e r p e o p l e would sometimes n o t u n d e r s t a n d what t h e i n d i v i d u a l was r e a l l y e x p e r i e n c i n g . Some p a r t i c i p a n t s s a i d t h a t , because t h e y d i d n ' t have an o b v i o u s p h y s i c a l d i s a b i l i t y , p e o p l e c o u l d n ' t t e l l t h a t t h e y were i l l and were s u f f e r i n g . 146 I r e g a i n e d my c o n f i d e n c e t h a t I c o u l d manage my r e a l i t y --manage my drugs—manage m y s e l f . . . T h a t i s a v e r y i m p o r t a n t l e s s o n — i s h a v i n g t h e c o n f i d e n c e you k n o w — y o u l o o k f i n e , y o u ' r e d o i n g f i n e . They have no i d e a what y o u ' r e d o i n g i n s i d e . You've g o t t o b u i l d i n e v e r y d a i l y a c t i v i t y a p o s i t i v e b u i l d i n g k i n d o f a t t i t u d e . The o p t i m i s m seemed t o p r o v i d e many p a r t i c i p a n t s w i t h t h e a b i l i t y t o p e r s e v e r e i n t h e f a c e o f c o n f l i c t . They had p e r s e v e r e d t h r o u g h d i f f i c u l t p e r i o d s o f i l l n e s s and p e r s e v e r e d i n t h e i r e f f o r t s t o f i n d and keep a j o b . I guess t h e p e o p l e who work, r e a l l y want t o work. I f you don't want t o work, you can f i n d l o t s o f e x c u s e s n o t t o . L i k e t h a t p e r s e v e r a n c e i s r e a l l y i m p o r t a n t , because i f you f e e l t h e symptoms o f y o u r i l l n e s s — [ f o r ] some p e o p l e , i t can be r e a l l y s c a r r y and [ f o r ] o t h e r s i t ' s q u i t e u n c o m f o r t a b l e . And i f you don't p e r s e v e r e w i t h i t , and you j u s t g i v e up w i t h t h e f i r s t l i t t l e symptom, i t w i l l g e t worse. But i f you t e s t y o u r l i m i t s a l l t h e t i m e , y o u ' l l f i n d a p l a c e f o r y o u r s e l f . You have t o keep t r y i n g u n t i l you f i n d a j o b t h a t s u i t s you and where t h e y l i k e you as w e l l . You might have t o t r y a l l d i f f e r e n t j o b s — d i f f e r e n t l e v e l s o f j o b s , p a r t t i m e , f u l l t i m e — u n t i l you f i n d o u t what you can h a n d l e . And you have t o be f l e x i b l e enough t o t r y i t . Maybe some o f us t h a t a r e w o r k i n g a r e s u c e s s f u l because we p e r s e v e r e d . I t h i n k t h e r e ' s a l o t o f wear and t e a r i n d a i l y l i f e nowadays. The average p e r s o n has t o p e r s e v e r e t o o , t h r o u g h a heck o f a l o t . I f you have a m e n t a l i l l n e s s , you have t o p e r s e v e r e even more, and h o p e f u l l y g e t s t r o n g e r by i t . . . S o what you s u r v i v e makes you s t r o n g e r as t h e y say. S e v e r a l i n d i v i d u a l s s a i d t h e y p r o g r e s s e d g r a d u a l l y as t h e y p e r s e v e r e d i n g e t t i n g work. P a r t i c i p a n t s made comments such a s , " I t o o k i t i n s t e p s " and " a l l you can do i s work y o u r way up t o something t h a t works." I t ' s l i k e a s t e p p i n g p r o c e s s . L i k e when you g e t s c h i z o p h r e n i a , you j u s t don't go i n t h e h o s p i t a l f o r s i x months, come out and g e t t h e same j o b you had b e f o r e . I t d o e s n ' t work t h a t way. You're so s h o t because o f 147 b e i n g o u t o f work f o r a l o n g t i m e — t h e m e d i c a t i o n you're t a k i n g — y o u r b r a i n i s mush and you have t o go back up t h e l a d d e r . Then you have t o r e e s t a b l i s h y o u r own s e l f - c o n f i d e n c e i n w o r k i n g . And i t t o o k me, p r o b a b l y , about f i v e y e a r s , s l o w l y w o r k i n g back up t h r o u g h — s t a r t o f f w i t h a j o b t h a t i s n ' t t o o demanding. P a r t o f t h e r e a s o n t h a t t h e s e p a r t i c i p a n t s were p o s i t i v e and m o t i v a t e d c o u l d stem from t h e f a c t t h a t most o f them had worked p r i o r t o becoming i l l . They had some s k i l l s , c o n f i d e n c e , and a b i l i t i e s t h a t j u s t had t o be r e g a i n e d o r s h o r e d up. We had a l i f e b e f o r e s c h i z o p h r e n i a and we had some s u c e s s e s and you p e r s e v e r e . You had a l i f e b e f o r e s c h i z o p h r e n i a , so you know what i t ' s l i k e — r e l a t i o n s h i p s o r a j o b — a n d you go from t h e r e . I t h i n k t h e way I was b e f o r e i n f l u e n c e d my b e h a v i o r — because I was always w o r k i n g . So you t h i n k i f you were 15 when you g o t i l l , i t would have been d i f f e r e n t ? Yes, because I wouldn't have known how t o h o l d down a j o b . I wouldn't have had i n c e n t i v e t o h o l d down a j o b . T h a t ' s what a l o t o f t h o s e guys a t [ t h e c l u b h o u s e ] - — t h a t ' s t h e i r problem. T h a t ' s why [ t h e c l u b h o u s e ] i s t h e r e , b a s i c a l l y , t o work f o r them...so I t h i n k what you've d e v e l o p e d — w h a t you had b e f o r e hand i s i m p o r t a n t . I was l u c k y I g o t s i c k when I was 25 i n s t e a d o f when I was 15 b e c a u s e — l i k e I worked from t h e t i m e I was 1 6 — l i k e p a r t t i m e j o b s a f t e r s c h o o l and I went t o u n i v e r s i t y u n t i l I was 22. One p a r t i c i p a n t d e s c r i b e d some f r i e n d s who had become i l l w i t h s c h i z o p h r e n i a when t h e y were i n t h e i r t e e n s . He e x p l a i n e d t h a t he t h o u g h t i t was much more d i f f i c u l t f o r them t o work because t h e y d i d not have j o b s k i l l s and because t h e y had n e v e r e x p e r i e n c e d t h e f e e l i n g o f b e i n g independant and e a r n i n g an income p r e v i o u s t o becoming i l l . 148 I f you had somebody l i k e m y s e l f who has s c h i z o p h r e n i a , who k n o w s — o r has been down t h e p a t h t o g e t back t o where he w a s — w h e r e a s , t h e s e p e o p l e have g o t t o go where t h e y ' v e n e v e r been b e f o r e , so t o speak. P a r t i c i p a n t s s a i d t h a t t h e t y p e o f p e r s o n t h e y were p r i o r t o becoming i l l i n f l u e n c e d t h e way t h e y d e a l t w i t h t h e i l l n e s s and w i t h work. As one p e r s o n s a i d , "What you a r e b e f o r e you become i l l i s v e r y i m p o r t a n t . " Other p e o p l e made s i m i l a r comments. I've g o t a l o t o f m o t i v a t i o n anyway. I'm always t r y i n g s omething. I always was t h a t way. My p a r e n t s s o r t o f b u i l t i t i n t o m e — t h e work e t h i c and t r y i n g and a l l t h a t s t u f f . So t h e way I was b e f o r e d i d i n f l u e n c e a l o t t h e way I responded t o my i l l n e s s . And I was s t i l l t h e same p e r s o n r e a l l y . I n summary, p a r t i c i p a n t s s a i d t h a t i t was i m p o r t a n t t o be o p t i m i s t i c and p e r s e v e r e t h r o u g h d i f f i c u l t i l l n e s s and work s i t u a t i o n s . As s c h i z o p h r e n i a i s an i l l n e s s t h a t i s not r e a d i l y a p p a r e n t , p a r t i c i p a n t s found t h a t p e o p l e d i d n o t r e a l i z e t h e y were " s u f f e r i n g . They f e l t t h e y had t o be t h e i r own b e s t s e l f - e s t e e m b o o s t e r s . S e v e r a l s a i d t h a t t h e y t h o u g h t t h e y had managed t o d e a l w i t h t h e i l l n e s s and be m o t i v a t e d t o work because o f who t h e y were and what t h e y had a c c o m p l i s h e d p r i o r t o becoming i l l . They f e l t t h a t h a v i n g m a s t e r e d c e r t a i n s k i l l s and h a v i n g d e v e l o p e d c e r t a i n p e r s o n a l i t y c h a r a c t e r i s t i c s , i n f l u e n c e d t h e way t h e y r esponded t o b e i n g i l l and t o work. I n c o n c l u s i o n , t h e p a r t i c i p a n t s ' d e s c r i p t i o n s o f t h e c o p i n g e x p e r i e n c e r e v e a l t h e f o l l o w i n g f i n d i n g s . Many 149 p a r t i c i p a n t s e x p l a i n e d t h a t self-management o f t h e i l l n e s s was a v a l u e d g o a l . W h i l e b e i n g s t r e s s f u l and c o m p l i c a t e d , h a v i n g c o n t r o l o v e r m e d i c a t i o n s , s l e e p , r e s t , l e i s u r e t i m e and d i e t improved h e a l t h and i n c r e a s e d t h e chance o f b e i n g a b l e t o work. Each p e r s o n had t h e i r own ways o f c o n t r o l l i n g t h e s e f a c t o r s . A number o f p a r t i c i p a n t s s a i d t h a t h a v i n g s o c i a l r e l a t i o n s h i p s a i d e d t h e maintenance o f r e a l i t y o r i e n t a t i o n , t h e obtainment o f j o b s , and t h e a b i l i t y t o work w i t h p e o p l e . Many s a i d t h a t r e g a i n i n g s o c i a l s k i l l s and s o c i a l competance was an i m p o r t a n t s t e p i n i m p r o v i n g t h e a b i l i t y t o o b t a i n and r e t a i n work. The m a j o r i t y o f p a r t i c i p a n t s c o n s i d e r e d t h e community s e r v i c e s t o be v a l u a b l e . The s e r v i c e s were seen t o p r o v i d e u n c o n d i t i o n a l a c c e p t a n c e , t h e o p p o r t u n i t y t o l e a r n l i f e and j o b s k i l l s , and s u i t a b l e employment. F i n a n c i a l s u p p o r t i n t h e form o f h o u s i n g and income a s s i s t a n c e was c o n s i d e r e d v a l u a b l e by many because i t i n c r e a s e d t h e o p p o r t u n i t y t o work a t l e s s s t r e s s f u l , low p a y i n g j o b s . S e v e r a l p a r t i c i p a n t s s a i d t h a t f i n a n c i a l s u p p o r t was s i g n i f i c a n t f o r m e n t a l w e l l b e i n g because i t d e c r e a s e d f i n a n c i a l w o r r y . Most i n d i v i d u a l s i n d i c a t e d t h a t c a r e f u l l y s e l e c t i n g w o r k i n g c o n d i t i o n s improved t h e chances o f b e i n g a b l e t o m a i n t a i n employment. P a r t i c i p a n t s e x p l a i n e d t h a t i t was i m p o r t a n t t o c o n s i d e r t h e j o b s m e n t a l , p h y s i c a l and s o c i a l r e q u i r e m n e t s , h o u r s o f work, f l e x i b i l i t y o f work and t i m e o f f , t y p e o f s u p e r v s i o n and i n t e r e s t and enjoyment. Because 150 each p e r s o n had u n i q u e needs f o r h o u r s o f work, t y p e o f s u p e r v i s i o n and so on, i t was c o n s i d e r e d i m p o r t a n t t o f i n d a j o b u n i q u e l y t a i l o r e d f o r t h e i n d i v i d a u l . V o l u n t e e r work, s u p p o r t e d work, and commisioned s a l e s were seen by a number of p e o p l e t o be u s e f u l s o u r c e s o f work. S e v e r a l p a r t i c i p a n t s s a i d t h a t t h e s e t y p e s o f j o b s i n c r e a s e d s e l f - e s t e e m and s e l f -c o n f i d e n c e w h i l e p r o v i d i n g f l e x i b i l i t y i n terms o f h o u r s o f work, t y p e o f s u p e r v i s i o n and work c o n d i t i o n s . A number o f p e o p l e s a i d t h a t m a i n t a i n i n g a p o s i t i v e o u t l o o k and p e r s e v e r i n g t h r o u g h d i f f i c u l t t i m e s were n e c e s s a r y c o p i n g s t r a t e g i e s . P r o g r e s s i n g g r a d u a l l y i n o b t a i n i n g employment g o a l s was a d v i s e d by s e v e r a l p e o p l e . The j o b s k i l l s , l i f e e x p e r i e n c e , and p e r s o n a l i t y c h a r a c t e r i s t i c s a c q u i r e d p r i o r t o i l l n e s s o n s e t were seen t o i n f l u e n c e r e s p o n s e s t o i l l n e s s and work. Summary The p r e s e n t a t i o n o f t h e p a r t i c i p a n t s 1 a c c o u n t s r e v e a l s t h a t t h r e e t h r e a d s were i n t e r w o v e n t h r o u g h o u t t h e i r a c c o u n t s . The i n d i v i d u a l ' s u n i q u e e x p e r i e n c e w i t h i l l n e s s , t h e s o c i a l i n f l u e n c e s such as s t i g m a and community s u p p o r t , and t h e l o n g - t e r m n a t u r e o f t h e i l l n e s s were themes common t o each o f t h e t h r e e a r e a s o f e x p e r i e n c e . To summarize t h e a c c o u n t s , each o f t h e s e w i l l be a d d r e s s e d . The Unique I n d i v i d u a l P a r t i c i p a n t s d e s c r i b e d t h e c h a r a c t e r i s t i c symptoms a s s o c i a t e d w i t h s c h i z o p h r e n i a . That i s , t h e y d e s c r i b e d 151 changes i n t h i n k i n g , p e r c e i v i n g , r e l a t i n g and b e h a v i n g , as w e l l as changes i n s e l f - c o n f i d e n c e , s t r e s s t o l e r a n c e , mood and need f o r s l e e p . However, f o r each p a r t i c i p a n t t h e n a t u r e o f t h e change was u n i q u e . F o r example, a l l p a r t i c i p a n t s e x p e r i e n c e d p e r c e p t u a l changes, b u t some had d i f f i c u l t y w i t h i n c r e a s e d s e n s i t i v i t y t o sound and o t h e r s had d i f f i c u l t y w i t h v i s u a l a c u i t y . I n a d d i t i o n each symptom was e x p e r i e n c e d i n a s u b j e c t i v e way. One p e r s o n w i t h i n c r e a s e d s e n s i t i v i t y t o sound f o u nd i t v e r y t r o u b l e s o m e . A n o t h e r s a i d i t b o t h e r e d h e r b u t she was a b l e t o i g n o r e i t . Each p a r t i c i p a n t ' s work e x p e r i e n c e s were a f f e c t e d by t h e i r u n i q u e e x p e r i e n c e w i t h t h e i l l n e s s . F o r example, t h o s e who had d i f f i c u l t y w i t h s e n s i t i v i t y t o sound found i t p a r t i c u l a r l y t r o u b l e s o m e t o work i n a n o i s e y environment. O t h e r s found t h a t t h e v i s i o n p roblems made work d i f f i c u l t . Many o t h e r symptoms were e x p e r i e n c e d i n u n i q u e i n d i v i d u a l ways each i n d i v i d u a l . Everyone n o t i c e d problems i n r e l a t i n g t o p e o p l e , b u t f o r some t h e major cause o f t h e problem was p a r a n o i a and f o r o t h e r s t h e major problem was l a c k o f c o n f i d e n c e b r o u g h t on by s e n s o r y changes. Those who e x p e r i e n c e d p a r a n o i a found t h a t sometimes t h e y would become angry w i t h c o - w o r k e r s o r employers and would e v e n t u a l l y have t o q u i t t h e j o b . Those who l a c k e d c o n f i d e n c e found i t d i f f i c u l t t o a c c e p t a j o b i n v o l v i n g a l o t o f c o n t a c t w i t h p e o p l e . So i n many ways t h e e x p e r i e n c e o f o b t a i n i n g and r e t a i n i n g work was i n f l u e n c e d by t h e i n d i v i d u a l ' s u n i q u e e x p e r i e n c e o f t h e symptoms. 152 A n o t h e r a s p e c t t h a t was d i f f e r e n t f o r each p e r s o n was t h e c o u r s e o f i l l n e s s , i n c l u d i n g s e v e r i t y and number o f a c u t e e p i s o d e s , and t h e o v e r a l l p a t t e r n o f i l l n e s s . Some p a r t i c i p a n t s had e x p e r i e n c e d many a c u t e p s y c h o t i c e p i s o d e s and had s p e n t l o n g p e r i o d s o f t i m e i n h o s p i t a l and community c a r e . These i n d i v i d u a l s had l o n g p e r i o d s o f unemployment. O t h e r p a r t i c i p a n t s had fewer a c u t e e p i s o d e s and managed t o c o n t i n u e w o r k i n g w i t h o n l y s h o r t p e r i o d s away from work. I n terms o f t h e p a t t e r n o f i l l n e s s , some had been v e r y i l l f o r a few y e a r s and t h e n remained w e l l f o r many y e a r s . O t h e r s had been i l l f o r many y e a r s and had, f o r o n l y a few y e a r s , f e l t w e l l . The work e x p e r i e n c e was i n f l u e n c e d by t h e p a t t e r n o f i l l n e s s i n t h a t p e r i o d s o f f e e l i n g w e l l seemed t o be r e l a t e d t o more s u c c e s s f u l employment e x p e r i e n c e s . C o p i n g e f f o r t s were a n o t h e r a s p e c t t h a t was u n i q u e f o r each i n d i v i d u a l . Awareness and use o f e f f o r t s t o cope w i t h t h e i l l n e s s v a r i e d from p e r s o n t o p e r s o n . Awareness o f t h e f a c t o r s a f f e c t i n g t h e i l l n e s s , and e f f o r t s t o cope w i t h t h e i l l n e s s were i d e n t i f i e d as b e i n g h e l p f u l i n m a i n t a i n i n g h e a l t h . M a i n t a i n i n g h e a l t h improved t h e chances o f m a i n t a i n i n g work. So when i n d i v i d u a l s had g a i n e d a good u n d e r s t a n d i n g o f t h e i r i l l n e s s and had l e a r n e d how t o cope w i t h i t , t h e y were p o t e n t i a l l y more s u c c e s s f u l w i t h o b t a i n i n g and r e t a i n i n g work. F o r example p a r t i c i p a n t s who had d e v e l o p e d i n s i g h t i n t o t h e f a c t o r s t h a t a f f e c t e d t h e i r i l l n e s s were more d i s c e r n i n g when i t came t o j o b h u n t i n g . 153 They would chose j o b s t h a t met t h e i r needs and t h u s would have a g r e a t e r chance o f r e t a i n i n g t h e j o b . A n o t h e r example i s t h a t p a r t i c i p a n t s who i d e n t i f i e d s p e c i f i c ways t o manage t h e i r m e d i c a t i o n and reduce s t r e s s found t h e y c o u l d cope b e t t e r w i t h work and had a b e t t e r chance o f m a i n t a i n i n g work. Other a s p e c t s t h a t were u n i q u e f o r each p e r s o n were t h e i r p r e v i o u s l i f e and work e x p e r i e n c e s . Many p a r t i c i p a n t s b e l i e v e d t h a t t h e e x p e r i e n c e s t h e y ' d had p r i o r t o becoming i l l a f f e c t e d t h e i r m o t i v a t i o n t o work, t h e i r j o b h u n t i n g s k i l l s , t h e i r a b i l i t y t o d e a l w i t h day t o day work, and t h e i r p e r s e v e r a n c e i n t h e j o b market. H a v i n g d e v e l o p e d good work h a b i t s and/or h a v i n g l i v e d i n d e p e n d a n t l y p r i o r t o becoming i l l were vi e w e d as b e i n g r e l a t e d t o s u c c e s s i n o b t a i n i n g and r e t a i n i n g work. A n o t h e r a s p e c t t h a t was u n i q u e f o r each p e r s o n was t h e number o f s o c i a l s u p p o r t s and t h e i n d i v i d u a l ' s s o c i a l s k i l l s . These i n f l u e n c e d t h e work e x p e r i e n c e i n t h e f o l l o w i n g ways. P a r t i c i p a n t s who had g a i n e d o r r e g a i n e d s o c i a l s k i l l s and had a s u p p o r t i v e s o c i a l network s a i d t h e y were more a b l e t o d e a l w i t h work s i t u a t i o n s , p a r t i c u l a r l y t h o s e i n v o l v i n g p e o p l e . S e v e r a l p a r t i c i p a n t s s a i d t h e y had d i f i c u l t y w o r k i n g d u r i n g p e r i o d s when t h e y were s o c i a l l y u n s k i l l e d . Those p a r t i c i p a n t s who c o n t i n u e d t o have d i f f i c u l t y w i t h s o c i a l r e a l t i o n s h i p s e x p r e s s e d c o n c e r n about w o r k i n g w i t h p e o p l e . Those who had r e g a i n e d t h e i r c o n f i d e n c e i n i n t e r a c t i n g w i t h p e o p l e were a b l e t o a c c e p t j o b s i n v o l v i n g i n t e r a c t i o n w i t h 154 p e o p l e . Thus t h e i n d i v i d u a l s ' e x p e r i e n c e w i t h s o c i a l s k i l l s and s o c i a l r e l a t i o n s h i p s was r e f l e c t e d i n t h e i r e x p e r i e n c e i n o b t a i n i n g and r e t a i n i n g work. From t h e above d i s c u s s i o n , i t i s a p p a r e n t t h a t a number o f a s p e c t s were e x p e r i e n c e d i n a u n i q u e way by each p a r t i c i p a n t . T h e i r u n i q u e e x p e r i e n c e s w i t h symptoms, c o u r s e o f i l l n e s s , c o p i n g e f f o r t s and s o c i a l r e l a t i o n s h i p s i n f l u e n c e d t h e i n d i v i d u a l s ' e x p e r i e n c e i n o b t a i n i n g and r e t a i n i n g work. When c o n s i d e r e d i n t h i s way, i t i s a p p a r e n t t h a t t h e e x p e r i e n c e o f o b t a i n i n g and r e t a i n i n g work i s b e s t viewed w i t h i n t h e i n d i v i d u a l c o n t e x t . The S o c i a l I n f l u e n c e s Throughout t h e a c c o u n t s , t h e impact o f s o c i a l i n f l u e n c e s on t h e p a r t i c i p a n t s ' e x p e r i e n c e s was e v i d e n t . Most p a r t i c i p a n t s spoke o f t h e s o c i a l s t i g m a a t t a c h e d t o t h e word s c h i z o p h r e n i a . They s a i d t h e word had n e g a t i v e c o n n o t a t i o n s and t h e y f e l t t h e y had been " l a b e l l e d . " Many e x p r e s s e d c o n c e r n and f r u s t r a t i o n w i t h t h e myths and m i s c o n c e p t i o n s s u r r o u n d i n g t h e i l l n e s s . They t h o u g h t t h e p u b l i c a s s o c i a t e d s c h i z o p h r e n i a w i t h dangerous b e h a v i o r . P a r t i c i p a n t s e x p e c t e d t o r e c e i v e n e g a t i v e r e s p o n s e s when t h e y t o l d p e o p l e about t h e i r d i a g n o s i s . S e v e r a l p a r t i c i p a n t s s a i d t h e y would l o s e f r i e n d s and would be t r e a t e d i n a s t e r e o t y p i c a l manner. As a r e s u l t many s a i d ythey d i d n o t want t o i n f o r m p e o p l e about t h e i l l n e s s . These p e r s p e c t i v e s o f s o c i a l s t i g m a and t h e e x p e c t a t i o n s about p e o p l e s ' r e p o n s e s i n f l u e n c e d t h e i r work e x p e r i e n c e . When l o o k i n g f o r work, many p a r t i c i p a n t s a v o i d e d 155 d i s c u s s i o n o f s c h i z o p h r e n i a by a p p l y i n g f o r j o b s w i t h i n f o r m a l a p p l i c a t i o n p r o c e s s e s , by f i l l i n g i n t h e gaps i n t h e i r resume, and by l e a v i n g b l a n k o r a l t e r i n g i n f o r m a t i o n on t h e m e d i c a l a p p l i c a t i o n . Many p a r t i c i p a n t s d i d n o t d i s c l o s e t h e i r i l l n e s s d u r i n g j o b i n t e r v i e w s because t h e y t h o u g h t t h e y w o u l d n ' t be h i r e d . They b e l i e v e d t h e employer would r e s p o n d t o them i n t h e s t e r e o t y p i c a l y n e g a t i v e mannner. They b e l i e v e d t h e employer would assume t h a t t h e y c o u l d n ' t work s a f e l y and r e s p o n s i b l y and wouldn't h i r e them. A number o f p a r t i c i p a n t s s a i d t h a t , because t h e y d i d not want employers t o know about t h e i l l n e s s , t h e y p r e t e n d e d t o be "normal". M a i n t a i n i n g t h e f a c a d e sometimes made t h e work environment u n c o m f o r t a b l e . P a r t i c i p a n t s were s e l f - c o n s c i o u s , and t h e y w o r r i e d t h a t t h e i r j o b performance would b e t r a y them. They w o r r i e d about b e i n g "found o u t . " They had t o d e a l w i t h symptoms o r work problems b r o u g h t on by t h e i l l n e s s , i n i s o l a t i o n . These c o n c e r n s made work more s t r e s s f u l l and some p a r t i c i p a n t s q u i t work due t o t h e s t r e s s . Some employers e v e n t u a l l y l e a r n e d about t h e i l l n e s s ; w h i l e p a r t i c i p a n t s e x p e c t e d a n e g a t i v e r e s p o n s e , t h e employer was o f t e n s u p p o r t i v e o r a t l e a s t unconcerned. I t seemed t h a t s o c i a l s t i g m a had l e s s e f f e c t when t h e employer had come t o know t h e p e r s o n , and t h e p e r s o n had d e v e l o p e d a good work r e c o r d . N o n e t h e l e s s s , because o f t h e b e l i e f t h a t t h e y would be t r e a t e d " d i f f e r e n t l y , " some p a r t i c i p a n t s remained c a u t i o u s about d i s c u s s i n g t h e i r i l l n e s s w i t h c o - w o r k e r s . One 156 p a r t i c i p a n t u sed m e d i c a l t e r m i n o l o g y and d i s c u s s e d "dopamine" r a t h e r t h a n s c h i z o p h r e n i a . A n o t h e r used humor as a way o f d e a l i n g w i t h p e o p l e ' s c o n c e r n s about t h e d i a g n o s i s . From t h e p a r t i c i p a n t s ' a c c o u n t s , i t i s c l e a r t h a t t h e s o c i a l s t i g m a o f s c h i z o p h r e n i a had an impact on t h e i r w o r k - r e l a t e d b e h a v i o r . The second s o c i a l a s p e c t t h a t i n f l u e n c e d t h e p a r t i c i p a n t s ' e x p e r i e n c e was t h e degree o f community s u p p o r t . P a r t i c i p a n t s d e s c r i b e d how community s u p p o r t s a f f e c t e d t h e i r i l l n e s s s , work and c o p i n g e x p e r i e n c e . A number o f i n d i v i d u a l s e x p l a i n e d t h a t v a r i o u s community s u p p o r t s h e l p e d them t o l e a r n about t h e i l l n e s s , h e l p e d them t o l e a r n how t o cope t h e i l l n e s s , and h e l p e d them t o f i n d and m a i n t a i n j o b s . I n r e f l e c t i n g on t h e i r p a s t and c u r r e n t e x p e r i e n c e w i t h community s u p p o r t , p a r t i c i p a n t s g e n e r a l l y d e s c r i b e d t h e v a l u e o f t h e s e s e r v i c e s . I n terms o f o b t a i n i n g work, s e v e r a l p a r t i c i p a n t s found t h a t community s e r v i c e s a i d e d them i n f i n d i n g s u i t a b l e work. Those who used j o b - f i n d i n g c l u b s and community m e n t a l h e a l t h s e r v i c e s s a i d t h a t t h e y c o u l d more e a s i l y f i n d work t h a t was s u i t a b l e . F o r example, one p a r t i c i p a n t e x p l a i n e d t h a t b e f o r e he went t o a community s u p p o r t program he c o u l d n ever f i n d a p a r t - t i m e j o b w i t h t h e s p e c i f i c work c o n d i t i o n s he d e s i r e d . Community s u p p o r t a l s o a f f e c t e d t h e e x p e r i e n c e o f o b t a i n i n g work as i t i n f l u e n c e d some i n d i v i d u a l s ' m o t i v a t i o n t o work. That i s , a c c o r d i n g t o s e v e r a l p a r t i c i p a n t s , t h e s u p p o r t e d h o u s i n g and f i n a n c i a l 157 a s s i s t a n c e i n c r e a s e d m o t i v a t i o n t o work and i n c r e a s e d t h e o p p o r t u n i t y t o f i n d s u i t a b l e work. Those who a t t e n d e d day programs and o t h e r r e h a b i l i t a i o n programs s a i d t h a t t h e programs h e l p e d them t o r e t a i n work. S e v e r a l p a r t i c i p a n t s e x p l a i n e d t h a t t h r o u g h community s e r v i c e s t h e y had l e a r n e d l i f e and j o b s k i l l s t h a t h e l p e d them t o be a b l e t o cope w i t h work. Some had l e a r n e d p a r t i c u l a r j o b s k i l l s t h a t i n c r e a s e d t h e i r e m p l o y a b i l i t y . Many p a r i c i p a n t s a t t r i b u t e d t h e i r improved s o c i a l s k i l l s and t h e i r a c q u i r e d s o c i a l network t o t h e community s e r v i c e s . As mentioned p r e v i o u s l y , h a v i n g s o c i a l s k i l l s improved t h e chance o f b e i n g a b l e t o work. Thus, i n t h i s way, community s u p p o r t i n f l u e n c e d t h e i r a b i l i t y t o r e t a i n work. Some p a r t i c i p a n t s had l e a r n e d more about t h e i r i l l n e s s and m e d i c a t i o n use i n community programs. As mentioned, t h e y i n d i c a t e d t h a t knowing how t o manage m e d i c a t i o n s i n c r e a s e d t h e chances o f m a i n t a i n i n g h e a l t h and t h u s i n c r e a s e d t h e chance o f w o r k i n g . So a g a i n , community s u p p o r t s i n f l u e n c e d t h e work e x p e r i e n c e . A d d i t i o n a l l y , some community s e r v i c e s p r o v i d e d l e i s u r e a c t i v i t i e s , h e l p e d p a r t i c i p a n t s i n c r e a s e t h e i r c o n f i d e n c e and s e l f - e s t e e m , and p r o v i d e d u n c o n d i t i o n a l a c c e p t a n c e . A l l o f t h e s e f a c t o r s i n f l u e n c e d t h e p e r s o n ' s h e a l t h and h e l p e d them, i n d i r e c t l y , t o r e t a i n work. I n terms o f t h e t y p e s o f s u p p o r t s used, t h e r e were some d i f f e r e n c e s . S e v e r a l p a r t i c i p a n t s made use o f community s e r v i c e s a v a i l a b l e t o t h e g e n e r a l p u b l i c . Most had, a t 158 v a r i o u s t i m e s , made use o f community m e n t a l h e a l t h programs. A s m a l l e r number d i s c u s s e d t h e i r i n v o l v e m e n t w i t h consumer i n i t i a t e d s e r v i c e s such as F.O.S. and p e e r s u p p o r t groups. So w h i l e p a r t i c i p a n t s s a i d t h a t community s u p p o r t s were h e l p f u l , t h e i r e x p e r i e n c e s v a r i e d a c c o r d i n g t o t h e t y p e o f s u p p o r t s used and t h e degree t o w h i c h t h e s u p p o r t s were used. T h i s was s i g n i f i c a n t t o n o t e because i n d i v i d u a l s ' e x p e r i e n c e s w i t h o b t a i n i n g and r e t a i n i n g work seemed t o be i n f l u e n c e d by t h e t y p e and amount o f s u p p o r t s used. Based on t h e p a r t i c i p a n t s ' a c c o u n t s , i t would seem t h a t community s u p p o r t and s o c i a l s t i g m a had a g r e a t d e a l o f i n f l u e n c e on t h e i r work e x p e r i e n c e . I t i s a p p a r e n t t h a t , i n o r d e r t o g a i n a f u l l a p p r e c i a t i o n o f t h e e x p e r i e n c e o f o b t a i n i n g and r e t a i n i n g work, i t i s i m p e r a t i v e t o u n d e r s t a n d t h e impact o f t h e s o c i a l c o n t e x t . The Long-term N a t u r e o f t h e I l l n e s s Throughout t h e i r a c c o u n t s p a r t i c i p a n t s d e s c r i b e d t h e e f f e c t o f h a v i n g a l o n g - t e r m i l l n e s s . They d e s c r i b e d t h e on g o i n g symptoms, t h e l e n g t h y c o u r s e o f t h e i l l n e s s , and t h e on g o i n g need f o r m e d i c a t i o n and s u p p o r t . P a r t i c i p a n t s a l s o d i s c u s s e d t h e u n p r e d i c t a b l e n a t u r e o f t h e i l l n e s s . Not o n l y d i d t h e y have t o l i v e w i t h o n g o i n g symptoms b u t t h e y had t o l i v e w i t h t h e p o t e n t i a l r e o c c u r r e n c e o f a c u t e e p i s o d e s . H a v i n g an i l l n e s s w i t h no c u r e meant h a v i n g t o acccomodate t h e i l l n e s s i n t h e i r l i f e . 159 The l o n g - t e r m n a t u r e o f t h e i l l n e s s d r a m a t i c a l l y a f f e c t e d t h e p a r t i c i p a n t s ' work e x p e r i e n c e s . R a t h e r t h a n e x p e r i e n c i n g an a c u t e i l l n e s s t h a t b r i e f l y i n t e r r u p t e d work, t h e s e p a r t i c i p a n t s e x p e r i e n c e d o n g o i n g symptoms and e p i s o d e s t h a t p u n c t u a t e d t h e i r work e x p e r i e n c e o v e r a l o n g p e r i o d o f t i m e . T h i s o n g o i n g s t r u g g l e t o work l e a d t o f e e l i n g s o f d i s c o u r a g e m e n t and emabarrassment, and r e s u l t e d i n d e c r e a s e d s e l f - e s t e e m . Because o f t h e c o n t i n u o u s u n p r e d i c t a b l e e p i s o d e s , some p a r t i c i p a n t s had l o s t j o b s and had e x p e r i e n c e d p e r i o d s o f unemployment. F o r some, s t a r t i n g and s t o p p i n g j o b s , due t o t h e ongoing symptoms, r e s u l t e d i n f e e l i n g s o f d i s c o u r a g m e n t and f r u s t r a t i o n . One p e r s o n was a n x i o u s about s t a r t i n g a n o t h e r j o b because a n o t h e r a c u t e e p i s o d e m i g h t o c c u r . She b e l i e v e d t h a t she would have t o r e l i v e t h e d i s a p p o i n t m e n t o f q u i t t i n g y e t a n o t h e r j o b . As t h e y e a r s went on, a number o f p a r t i c i p a n t s found t h a t j o b a v a i l a b i l i t y and employment a m b i t i o n s changed. These changes r e s u l t e d i n some p a r t i c i p a n t s f e e l i n g d i s a p p o i n t e d . H a v i n g a l o n g - t e r m i l l n e s s a f f e c t e d t h e i d e n t i t y o f many p a r t i c i p a n t s . They saw t h e m s e l v e s as " s i c k p e r s o n s " who were a burden on s o c i e t y . I n a d d i t i o n , h a v i n g a c h r o n i c i l l n e s s t h a t d i s r u p t e d work f o r l o n g p e r i o d s o f t i m e a f f e c t e d p a r t i c i p a n t s ' f i n a n c i a l s t a t u s . B o t h o f t h e above a f f e c t e d t h e i n d i v i d u a l ' s s e l f - e s t e e m . Changes i n i d e n t i t y , f i n a n c i a l s t a t u s and s e l f - e s t e e m i n f l u e n c e d t h e meaning o f work f o r many p a r t i c i p a n t s . Many p a r t i c i p a n t s s a i d t h a t work was 160 m e a n i n g f u l f o r c h a n g i n g i d e n t i t y from t h a t o f a s i c k p e r s o n t o a w e l l p e r s o n , f o r i m p r o v i n g f i n a n c i a l s t a t u s and f o r i n c r e a s i n g s e l f - e s t e e m . Because o f i t s e f f e c t on t h e meaning o f work, t h e l o n g - t e r m i l l n e s s i n d i r e c t l y a f f e c t e d t h e p a r t i c i p a n t s ' m o t i v a t i o n t o work. I n o t h e r words, most p a r t i c i p a n t s were v e r y m o t i v a t e d t o work and some o f t h a t m o t i v a t i o n c o u l d be a t t r i b u t e d t o t h e need t o improve i d e n t i t y , f i n a n c e s and s e l f - e s t e e m t h a t were a f f e c t e d by l o n g - t e r m i l l n e s s . A n o t h e r outcome o f h a v i n g a l o n g - t e r m i l l n e s s was t h a t p a r t i c i p a n t s e v e n t u a l l y d e v e l o p e d ways t o accomodate t h e i l l n e s s i n t h e i r l i v e s . From t h e p a r t i c i p a n t s ' a c c o u n t s , i t seemed t h a t many had d e c i d e d t o l e a r n about t h e i l l n e s s and t o t a k e c o n t r o l o f managing t h e i l l n e s s . The m a j o r i t y had d e v e l o p e d ways t o cope w i t h t h e i l l n e s s and t o cope w i t h work. Some had d e v e l o p e d an o p t i m i s t i c a t t i t u d e and had d e c i d e d t o p e r s e v e r e w i t h t h e i r g o a l s f o r employment. From t h e p a r t i c i p a n t s ' a c c o u n t s , i t seems t h a t s c h i z o p h r e n i a , as a l o n g - t e r m i l l n e s s , d r a m a t i c a l l y a f f e c t s t h e e x p e r i e n c e o f o b t a i n i n g and r e t a i n i n g work. F o r t h i s r e a s o n t h e e x p e r i e n c e o f o b t a i n i n g and r e t a i n i n g work s h o u l d be v i e w e d w i t h i n t h e c o n t e x t o f l o n g - t e r m i l l n e s s . T h i s c h a p t e r has p r e s e n t e d t h e a c c o u n t s o f t h e p a r t i c i p a n t s i n t h i s s t u d y . T h e i r a c c o u n t s a d d r e s s e d t h r e e a r e a s o f e x p e r i e n c e ; t h e e x p e r i e n c e o f b e i n g i l l , t h e work-r e l a t e d e x p e r i e n c e , and t h e c o p i n g e x p e r i e n c e . Three themes 161 were i n t e r w o v e n t h r o u g h o u t t h e s e e x p e r i e n c e s ; ^ t h e u n i q u e i n d i v i d u a l , t h e s o c i a l i n f l u e n c e s , and t h e l o n g - t e r m n a t u r e o f t h e i l l n e s s . Because o f t h e i n f l u e n c e o f t h e s e t h r e e a s p e c t s , i t i s a p p a r e n t t h a t t h e e x p e r i e n c e o f o b t a i n i n g and r e t a i n i n g work i s b e s t viewed w i t h i n t h e i n d i v i d u a l , s o c i a l , and l o n g - t e r m i l l n e s s c o n t e x t s . 162 C h a p t e r 5 D i s c u s s i o n o f F i n d i n g s I n t r o d u c t i o n As j u s t d i s c u s s e d , each p a r t i c i p a n t ' s e x p e r i e n c e w i t h o b t a i n i n g and r e t a i n i n g work was i n f l u e n c e d by h i s / h e r i n d i v i d u a l e x p e r i e n c e w i t h symptoms, c o u r s e o f i l l n e s s , c o p i n g e f f o r t s , s o c i a l s k i l l s , s o c i a l network, and p r e m o r b i d l i f e e x p e r i e n c e . I n a d d i t i o n , each p a r t i c i p a n t ' s work e x p e r i e n c e was i n f l u e n c e d by t h e f a c t t h a t he/she l i v e d w i t h a l o n g - t e r m i l l n e s s and e x p e r i e n c e d v a r y i n g degrees o f s o c i a l s t i g m a and s o c i a l s u p p o r t . I t appears t h a t an u n d e r s t a n d i n g o f t h e i n d i v i d u a l , s o c i a l and l o n g - t e r m i l l n e s s c o n t e x t s p r o v i d e s a u s e f u l framework f o r u n d e r s t a n d i n g t h e e x p e r i e n c e o f o b t a i n i n g and r e t a i n i n g work w i t h s c h i z o p h r e n i a . T h i s c h a p t e r d i s c u s s e s t h e i n d i v i d u a l , s o c i a l and l o n g - t e r m i l l n e s s c o n t e x t s i n r e l a t i o n t o t h e l i t e r a t u r e a d d r e s s e d i n c h a p t e r 2, as w e l l as a d d i t i o n a l l i t e r a t u r e . The I n d i v i d u a l C o n t e x t  The I n d i v i d u a l E x p e r i e n c e The a c c o u n t s o f t h e s e i n d i v i d u a l s and t h e many a u t o b i o g r a p h i c a l a c c o u n t s such as N o r t h (1987), Sechehaye (1951), S t e f a n (1966) and o t h e r s make i t c l e a r t h a t each p e r s o n w i t h s c h i z o p h r e n i a e x p e r i e n c e s t h e i l l n e s s i n a un i q u e way. F o r each p a r t i c i p a n t i n t h i s s t u d y , t h e n a t u r e o f t h e symptoms, c o u r s e o f i l l n e s s , c o p i n g e f f o r t s , s o c i a l s k i l l s and p r e m o r b i d e x p e r i e n c e s were u n i q u e . O f t e n though, i t 163 a p p e a r s t h a t p r o f e s s i o n a l m e d i c a l and n u r s i n g l i t e r a t u r e f o c u s e s on t h e c h a r a c t e r i s t i c f e a t u r e s o f t h e i l l n e s s and o f f e r s l i t t l e d i s c u s s i o n o f t h e s u b j e c t i v e n a t u r e o f t h e symptoms o r t h e u n i q u e e x p r e s s i o n o f t h e i l l n e s s i n each c l i e n t . As Walsh (1985) w r i t e s , "we t e n d t o lump t h e m e n t a l l y i l l t o g e t h e r as one amorphous b l o b . . . " (p.148). There a r e some, however, who acknowledge t h e i m p o r t a n c e o f i d e n t i f y i n g each c l i e n t ' s u n i q u e e x p e r i e n c e w i t h t h e symptoms. As McGlashen and K e a t s (1989) w r i t e , s c h i z o p h r e n i a may be common, but i t i s an i n d i v i d u a l d i s e a s e . I n t h e i r book t h e y d e s c r i b e t h e c a s e h i s t o r i e s o f f o u r p e o p l e . They o b s e r v e t h a t w h i l e t h e f o u r c l i e n t s s h a r e t h e d i a g n o s i s o f s c h i z o p h r e n i a , t h e r e i s much d i v e r s i t y i n t h e i r e x p e r i e n c e o f t h e symptoms. They s u g g e s t t h a t i t i s i m p o r t a n t t o l o o k beyond t h e f o r m a l d i a g n o s i s t o t h e c l i e n t ' s e x p e r i e n c e o f t h e i l l n e s s w h i c h h i g h l i g h t s t h e u n i q u e a s p e c t s o f s c h i z o p h r e n i a i n each c l i e n t . I n terms o f symptoms, H a f e z , Frank and D o c h e r t y (1990) w r i t e t h a t i t i s n o t s u f f i c i e n t t o i n f o r m f a m i l i e s o f common s i g n s and symptoms s i g n a l i n g r e o c c u r r e n c e o f t h e i l l n e s s because n o t a l l c l i e n t s show t h e m a n i f e s t a t i o n s commonly d i s c u s s e d . They w r i t e t h a t d i f f e r e n t i n d i v i d u a l s show u n i q u e c l u s t e r s o f symptoms, and add t h a t t h e s e d i f f e r e n c e s between c l i e n t s u n d e r s c o r e t h e v a l u e o f a c q u i r i n g a t h o r o u g h knowledge o f each c l i e n t ' s e x p e r i e n c e o f i l l n e s s . 164 O t h e r s , such as Liberman e t a l . (1987), T o r r e y (1988) and S c h e i d (1990), remind us t h a t no one symptom o r s i g n i s found i n a l l c l i e n t s w i t h s c h i z o p h r e n i a and t h e n a t u r e o f t h e symptoms can be q u i t e d i f f e r e n t from one p e r s o n t o t h e n e x t . As T o r r e y (1988) e x p l a i n s , some c l i e n t s have more o f one k i n d o f symptom, o t h e r c l i e n t s have more o f a n o t h e r k i n d o f symptom. Some symptoms, l i k e h a l l u c i n a t i o n s , a r e assumed t o be e x p e r i e n c e d by a l l p e o p l e w i t h s c h i z o p h r e n i a , b u t a r e found i n o n l y 50 t o 75 p e r c e n t o f t h e s e c l i e n t s ( S c h i e d , 1990). Even i f c l i e n t s have t h e same symptom, t h e n a t u r e o f t h e symptom v a r i e s from p e r s o n t o p e r s o n . Liberman e t a l . (1987) and Wing (1987) p o i n t o u t t h a t t h e symptoms o f s c h i z o p h r e n i a may be m a n i f e s t e d i n v a r y i n g d e g r e s s o f s e v e r i t y f o r v a r y i n g d u r a t i o n s . Wing (1987) w r i t e s t h a t symptoms such as h a l l u c i n a t i o n s v a r y from one extreme t o t h e o t h e r . He e x p l a i n s t h a t a t one extreme t h e y a r e overwhelming i n t h e i r i m p a ct and dominate b e h a v i o r and a t t h e o t h e r extreme t h e i n d i v i d u a l can choose how much t o a t t e n d t o them. T h i s v a r i a b i l i t y i n t h e n a t u r e o f symptoms was e v i d e n t i n t h e a c c o u n t s o f p a r t i c i p a n t s i n t h i s s t u d y . One c l i e n t s a i d he n e v e r had h a l l u c i n a t i o n s . A n o t h e r s a i d he h e a r d v o i c e s f a i r l y o f t e n b u t was n o t b o t h e r e d by them, and a n o t h e r s a i d t h a t i n t h e p a s t h a l l u c i n a t i o n s had been v e r y t r o u b l e s o m e . F o r one p e r s o n h a l l u c i n a t i o n s i n t e r f e r e d w i t h work and f o r t h e o t h e r , h a l l u c i n t a t i o n s were n o t d i s r u p t i v e t o work. For each o f t h e s e p e o p l e t h e n , t h e b e s t way t o a p p r e c i a t e t h e 165 impact o f t h e i r symptoms on work e x p e r i e n c e i s t o u n d e r s t a n d t h e e x a c t n a t u r e o f t h e symptoms f o r each p e r s o n . As n o t e d i n c h a p t e r 2, t h e r e i s some di s a g r e e m e n t i n t h e l i t e r a t u r e as t o t h e impact o f symptoms on t h e work e x p e r i e n c e . Some say t h a t symptoms a r e one o f t h e most d i s r u p t i v e f a c t o r s and o t h e r s d i s a g r e e . I t may be l e s s i m p o r t a n t t o argue whether symptoms such as h a l l u c i n a t i o n s a f f e c t work as i t i s t o u n d e r s t a n d t h e n a t u r e o f each c l i e n t ' s symptoms. One c l i e n t ' s work e x p e r i e n c e may be d r a s t i c a l l y a f f e c t e d by h a l l u c i n a t i o n s and a n o t h e r p e r s o n , a l s o e x p e r i e n c i n g h a l l u c i n a t i o n s , may e n c o u n t e r few problems. A n o t h e r a s p e c t t h a t was u n i q u e f o r each p e r s o n i n t h e s t u d y and i n f l u e n c e d t h e work e x p e r i e n c e was t h e c o u r s e o f i l l n e s s . I t appears t h a t i t i s i m p o r t a n t t o acknowledge t h e u n i q u e c o u r s e o f i l l n e s s because o f i t s e f f e c t on t h e work e x p e r i e n c e . However, as i s t h e c a s e w i t h symptoms o f s c h i z o p h r e n i a , t h e r e o f t e n a r e assu m p t i o n s made about t h e c o u r s e o f s c h i z o p h r e n i a . I t i s o f t e n e r r o n e o u s l y t h o u g h t t h a t t h e i l l n e s s t a k e s a c h a r a c t e r i s t i c d e b i l i t a t i n g c o u r s e . Some, such as McGlashen and K e a t s (1989) and H a f e z , Frank and D o c h e r t y (1990), i n d i c a t e t h a t i t i s i m p o r t a n t t o acknowledge t h a t each c l i e n t has a un i q u e c o u r s e o f i l l n e s s . J e f f r i e s and c o l l e a g u e s (1990) amd Ciompi (1986) mention t h a t t h e r e i s no one common o r s p e c i f i c c o u r s e o f i l l n e s s f o r s c h i z o p h r e n i a . The e x a m i n a t i o n o f i n d i v i d u a l l i f e h i s t o r i e s r e v e a l many d i f f e r e n t and complex p a t t e r n s o f a d j u s t m e n t o v e r 166 t i m e (Boker, B r e n n e r , G e r s t n e r , K e l l e r , M u l l e r & S p i c h t i g , 1984; Westermeyer, Harrow & Carone, 1987). I n a d d i t i o n , many v a r i a b l e s have been i d e n t i f i e d as i n f l u e n c i n g t h e c o u r s e o f i l l n e s s . The i n d i v i d u a l ' s sense o f h i s / h e r own v a l u e a l s o p l a y s a c r u c i a l r o l e i n t h e outcome o f s c h i z o p h r e n i a (Barham,1984). S t r a u s s , H a f e z , Lieberman and H a r d i n g (1985) say t h a t c l i e n t s may have an a c t i v e r o l e i n t h e c o u r s e o f i l l n e s s , as t h e i r s t r e n g t h s and v u l n e r a b i l i t i e s change o v e r t i m e , and t h e s e i n f l u e n c e t h e c o u r s e o f i l l n e s s . O t her v a r i a b l e s t h a t have been i d e n t i f i e d as a f f e c t i n g t h e c o u r s e o f i l l n e s s i n c l u d e f a m i l y environment (Vaughn & L e f f , 1979), l i f e e v e n t s (Day, 1981), s o c i a l s u p p o r t s (Cohen & S o k o l o v s k y , 1978), and p s y c h o s o c i a l t r e a t m e n t (Maher & Gunderson, 1979). C i o m p i (1986) p o i n t s o u t t h a t , g i v e n t h e g r e a t v a r i e t y o f i n f l u e n c e s on t h e c o u r s e o f i l l n e s s , i t would be i n a c c u r a t e t o c l a i m a p r e d i c t a b l e c o u r s e . A t h i r d a s p e c t t h a t was u n i q u e f o r each p a r t i c i p a n t was t h e c o p i n g e f f o r t s . P a r t i c i p a n t s ' a c c o u n t s r e v e a l e d t h a t t h e i r c o p i n g s t r a t e g i e s c o u l d be b r o a d l y grouped i n t o c e r t a i n c a t e g o r i e s . However, each p e r s o n had h i s / h e r own p a r t i c u l a r s t r a t e g i e s , and t h e e x t e n t t o w h i c h each p e r s o n had d e v e l o p e d c o p i n g s t r a t e g i e s was d i f f e r e n t . Indeed t h e f a c t t h a t t h e s e i n d i v i d u a l s spoke o f c o p i n g e f f o r t s may be s u r p r i s i n g t o some. S e l z e r , S u l l i v a n , C a r s k y & T e r k e l s e n (1989) p o i n t out t h a t h o s p i t a l and community s t a f f d e monstrate a tendency t o 167 speak o f t h e p a t i e n t as a v i c t i m o f a b i o l o g i c a l i l l n e s s , w i t h o u t g i v i n g a t t e n t i o n t o t h e a d a p t i v e r e s p o n s e o r s u r v i v a l s t r a t e g i e s employed by p a t i e n t s t o cope w i t h t h e i l l n e s s . As Cohen and Berk (1985) w r i t e , t h e r a p i s t s o f t e n assume t h a t t h e y have a l l t h e answers and t h e c l i e n t has none. These a u t h o r s add t h a t c u r r e n t d a t a i n d i c a t e many p e o p l e w i t h s c h i z o p h r e n i a d e v e l o p a wide v a r i e t y o f c o p i n g mechanisms t o d e a l w i t h d i f f e r e n t t y p e s o f symptoms. They say t h a t m e n t a l h e a l t h w o r k e r s s h o u l d be s e n s i t i z e d t o t h e need t o e x p l o r e t h e v a r i o u s c o p i n g s t y l e s t h a t t h e s e c l i e n t s employ. They a l s o add t h a t d u r i n g t h e c o u r s e o f t h e i r s t u d i e s t h e y were s t r u c k by t h e i r c l i e n t s ' s u r p r i s e and p l e a s u r e t h a t anyone would d e v o t e t i m e t o e x a m i n i n g t h e methods t h a t t h e y had d e v i s e d f o r managing t h e i r symptoms. H a f e z , Frank and D o c h e r t y (1990) comment on t h e l a c k o f a t t e n t i o n p a i d t o c l i e n t s ' c o p i n g e f f o r t s . They w r i t e : U n f o r t u n a t e l y , t h e a c t i v e r o l e o f t h e p a t i e n t i n t h e r e c o v e r y from s e v e r e p s y c h i a t r i c i l l n e s s has been r e l a t i v e l y n e g l e c t e d . C o n c e p t u a l i z a t i o n o f t h e m e n t a l l y i l l p e r s o n as a h e l p l e s s v i c t i m o f a d i s e a s e , p a t h o g e n i c f a m i l y , o r s o c i a l environment i s so p e r v a s i v e t h a t good d a t a on how a p e r s o n may i n t e r a c t w i t h o r i n f l u e n c e t h e d i s e a s e p r o c e s s i s l a c k i n g . N o n e t h e l e s s , r e c e n t f i n d i n g s based on s i n g l e c a s e r e p o r t s , a u t o b i o g r a p h i c a l 168 d e s c r i p t i o n s and l o n g i t u d i n a l s t u d i e s p r o v i d e v a l u a b l e i n f o r m a t i o n on t h e a c t i v e r o l e o f t h e p a t i e n t i n r e c o v e r y from i l l n e s s (p.100). S t r a u s s , H a r d i n g , Hafez and Lieberman (1987) i n d i c a t e t h a t more e f f o r t s h o u l d be made t o acknowledge t h e c l i e n t ' s a t t e m p t s a t managing t h e i l l n e s s . They w r i t e , " I t i s q u i t e c l e a r and somewhat e m b a r r a s s i n g how p e r v a s i v e l y p a t i e n t i n i t i a t i v e , whether e f f e c t i v e o r n o t , goes u n n o t i c e d " ( p .163), T h e i r i n t e r e s t i n u n d e r s t a n d i n g t h e i r c l i e n t s * e f f o r t s a t self-managment grew from an e x p e r i e n c e w i t h a r e s e a r c h s u b j e c t . The s u b j e c t asked why t h e y had n e v e r i n q u i r e d about what she d i d t o i n f l u e n c e h e r i l l n e s s . S u b s e q u e n t l y , t h e y asked o t h e r s u b j e c t s about t h e i r e f f o r t s t o manage t h e i l l n e s s . The s u b j e c t s i n d i c a t e d s u r p r i s e , s i m i l a r t o t h a t o f Cohen and B e r k ' s s u b j e c t s , t h a t t h e r s e a r c h e r s would be i n t e r e s t e d , s i n c e no one had e v e r asked them b e f o r e . As i n d i c a t e d , when c l i n i c i a n s and r e s e a r c h e r s ask i n d i v i d u a l s w i t h s c h i z o p h r e n i a about c o p i n g e f f o r t s , t h e y f i n d t h a t t h e s e c l i e n t s do d e v e l o p a range o f c o p i n g s t r a t e g i e s . S t r a u s s , H a r d i n g , Hafez and Lieberman (1987) d i s c u s s f i n d i n g s from t h e i r s t u d i e s w h i c h p r o v i d e e v i d e n c e o f t h e a c t i v e r o l e o f t h e c l i e n t i n managing f a c t o r s w h i c h a f f e c t t h e i l l n e s s . They n o t e t h a t f a c t o r s from s l e e p t o hope, from p h y s i c a l h e a l t h t o courage, from m a t e r i a l r e s o u r c e s t o p s y c h o l o g i c a l energy can t a k e an a c t i v e r o l e i n 169 t h e r e c o v e r y p r o c e s s . Wing (1983; 1987)and Tsuang (1982) acknowledge t h a t c l i e n t s , sometimes a f t e r l o n g p e r i o d s o f i l l n e s s and o f t e n by t r i a l and e r r o r , b e g i n t o u n d e r s t a n d f a c t o r s t h a t make them worse o r b e t t e r . Wing (1987) i d e n t i f i e s f a c t o r s , p a r t i a l l y under t h e c l i e n t ' s c o n t r o l , t h a t s e r v e as a b a s i s f o r self-managment. These f a c t o r s i n c l u d e d e c i s i o n s about whether o r n o t t o t a k e m e d i c a t i o n , knowledge o f s i t u a t i o n s t h a t t r i g g e r decompensation, o p p o r t u n i t i e s f o r u t i l i z i n g one's t a l e n t and o p p o r t u n i t i e s f o r h e l p i n g o t h e r s t o u n d e r s t a n d t h e i l l n e s s . Many o f t h e s e same f a c t o r s were d e s c r i b e d by p a r t i c i p a n t s i n t h i s s t u d y . Boker (1987) a l s o w r i t e s about t h e c o p i n g e f f o r t s o f c l i e n t s w i t h s c h i z o p h r e n i a . I t would appear from B o k e r ' s a r t i c l e t h a t much o f t h e work toward i d e n t i f y i n g c l i e n t s ' e f f o r t s i n t h i s r e g a r d i s b e i n g u n d e r t a k e n by r e s e a r c h e r s i n Europe. He c i t e s a number o f European s t u d i e s (Boker & B r e n n e r , 1983; Lange, 1981; S u e l l w o l d , 1982) w h i c h have i d e n t i f i e d t h e self-managment i n i t i a t i v e o f p e o p l e w i t h s c h i z o p h r e n i a . O ther r e f e r e n c e s d i s c u s s i n g c l i e n t s ' e f f o r t s t o cope w i t h t h e i r s c h i z o p h r e n i a i n c l u d e Kanas and B a r r (1984), S t r a u s s , H a f e z , Lieberman and H a r d i n g (1985), and B r e n n e r , Boker, M u l l e r , S p i c h t i g and W u r g l e r (1987). There i s a l s o s u b s t a n t i a l e v i d e n c e t h a t p e o p l e w i t h s c h i z o p h r e n i a a r e a b l e t o d e v e l o p s t r a t e g i e s f o r managing t h e more d i f f i c u l t a s p e c t s o f t h e i l l n e s s , t h a t i s p s y c h o t i c symptoms ( B r i e r & S t r a u s s , 1983; F a l l o o n & T a l b o t , 1981; 170 G r o s s , 1987; Sommer & Osmond, 1983). F o r example F a l l o o n and T a l b o t (1981), i n a s t u d y o f p e o p l e s u f f e r i n g from p e r s i s t e n t a u d i t o r y h a l l u c i n a t i o n s , n o t e t h a t a l l s u b j e c t s employed c o p i n g s t r a t e g i e s t o r e d u c e t h e d i s a b i l i t y c a u s ed by t h e symptom. S t r a u s s e t a l . (1987) say t h a t t h e c l i e n t ' s r o l e i n t h e r e c o v e r y from p s y c h o s i s can range from m i n i m a l i n v o l v e m e n t , such as c o m p l i a n c e w i t h m e d i c a t i o n , t o f u l l and a c t i v e p a r t i c i p a t i o n i n t h e r e c o v e r y p r o c e s s . I n a d d i t i o n t o r e c o g n i z i n g t h e p r e s e n c e o f c l i e n t s * c o p i n g e f f o r t s , some a u t h o r s make o t h e r i n t e r e s t i n g p o i n t s . F o r example, B r e n n e r , Boker, M u l l e r , S p i c h t i g and W u r g l e r (1987) w r i t e t h a t , when a c l i e n t can c o n c e n t r a t e h i s / h e r s t r e n g t h and energy on t h e most e f f e c t i v e e f f o r t s , t h e e x p e r i e n c e s e r v e s t o s t r e h g h t e n h i s / h e r autonomy and s e l f -r e s p e c t , b o t h o f w h i c h can be s e v e r e l y damaged t h r o u g h t h e l o n g p e r i o d o f i l l n e s s . Cohen and Berk (1985) w r i t e t h a t , as more r e s e a r c h i s c o n d u c t e d i n t h i s a r e a , methods f o r augmenting p a t i e n t s c o p i n g mechanisms can become an i m p o r t a n t a d j u n c t t o t r a d i t i o n a l t r e a t m e n t . A f o u r t h a s p e c t t h a t was u n i q u e f o r each p a r t i c i p a n t was h i s / h e r p r e m o r b i d e x p e r i e n c e , i n c l u d i n g e x p e r i e n c e w i t h work. There i s e v i d e n c e i n t h e l i t e r a t u r e t h a t acknowledgment o f each c l i e n t ' s p r e v i o u s e x p e r i e n c e i s s i g n i f i c a n t , p a r t i c u l a r l y i n l i g h t o f t h e f a c t t h a t p r e v i o u s l i f e e x p e r i e n c e s i n f l u e n c e t h e i l l n e s s and employment outcomes. A h i s t o r y o f a d j u s t m e n t p r i o r t o o n s e t o f i l l n e s s i s a f a c t o r 171 d e t e r m i n i n g whether a p e r s o n w i l l have a good o r poor outcome ( C i o m p i , 1986; T o r r e y , 1988; Wing, 1978). As McGlashen and K e a t s (1989) i n d i c a t e , t h e more t h e p e r s o n has d e v e l o p e d t h e c a p a c i t y t o work and s o c i a l i z e b e f o r e t h e i l l n e s s , t h e b e t t e r i s t h e i r o v e r a l l s h o r t and l o n g - t e r m p r o g n o s i s . A l s o , t h e r e i s abundant e v i d e n c e t h a t p r e v i o u s j o b s t a b i l i t y i s a p r e d i c t o r o f s t a b l e work f o r c l i e n t s w i t h s c h i z o p h r e n i a (Anthony & B u e l l , 1974; Anthony & J a n s e n , 1984; C o l e , Brewer, A l l i s o n & B r a n c h , 1964; L o r e i & G u r e l , 1973; Monck, 1963). A f i n a l f a c t o r t h a t was d i f f e r e n t f o r each p e r s o n was t h e s o c i a l s k i l l s and s o c i a l network. Each p a r t i c i p a n t had h i s / h e r own l e v e l o f s k i l l , number and q u a l i t y o f r e l a t i o n s h i p s and t h i s v a r i e d t h r o u g h o u t t h e c o u r s e o f t h e i l l n e s s . O f t e n broadcomments a r e made about t h e s o c i a l s k i l l s ans r e l a t i o n s h i p s o f p e o p l e w i t h s c h i z o p h r e n i a . S t u d i e s have shown t h a t p e o p l e w i t h s c h i z o p h r e n i a have fewer s o c i a l n etworks ( F r o l a n d , B r o d s k y , O l s o n & S t e w a r t , 1979; G l e s s e r & G o t l s c h a l k , 1967; M a r c e l l a & Snyder, 1981) and many have d i f f i c u l t i e s i n s o c i a l i n t e r a c t i o n (Serban 1975, S t r a u s s , C a t p e n t e r & B a r t k o , 1974). Some ( B e l l a c k & Hersen, 1978; Hersen & B e l l a c k , 1976) i n d i c a t e t h a t poor s o c i a l f u n c t i o n i n g i s a h a l l m a r k o f s c h i z o p h r e n i a . There seems t o be such emphasis on d e s c r i b i n g t h e common s o c i a l s k i l l s and netwo r k s o f c l i e n t s w i t h s c h i z o p h e n i a t h a t t h e u n i q u e s o c i a l c h a r a c t e r i s t i c s o f i n d i v i d u a l s a r e r a r e l y c o n s i d e r e d . 172 I n d i v i d u a l i z e d I n t e r v e n t i o n From t h e l i t e r a t u r e , i t would appear t h a t t h e r e i s some acknowledgment o f t h e s u b j e c t i v e n a t u r e o f each i n d i v i d u a l ' s e x p e r i e n c e w i t h t h e symptoms and c o u r s e o f s c h i z o p h r e n i a . There i s a g r o w i n g awareness t h a t many c l i e n t s l e a r n i n d i v i d u a l ways t o cope w i t h t h e i r i l l n e s s , and t h e r e i s g e n e r a l r e c o g n i t i o n t h a t i t i s i m p o r t a n t t o be aware o f a each c l i e n t ' s p r e m o r b i d e x p e r i e n c e . There i s l e s s d i s c u s s i o n o f each c l i e n t s s o c i a l s k i l l s , w i t h t h e te n d e n c y b e i n g t o f o c u s on t h e common e x p e r i e n c e . Do p r o f e s s i o n a l s make use o f knowledge o f t h e un i q u e i n d i v i d u a l i n p r o v i d i n g h e a l t h c a r e , and s p e c i f i c a l l y employment g u i d a n c e , f o r p e o p l e w i t h s c h i z o p h r e n i a ? Some a u t h o r s i n d i c a t e t h a t t h e y seek an u n d e r s t a n d i n g o f each i n d i v i d u a l ' s e x p e r i e n c e and c i r c u m s t a n c e s , and base t h e i r c a r e on t h i s i n f o r m a t i o n . S e l z e r , S u l l i v a n , C a r s k y and T e r k e l s o n (1989) w r i t e t h a t t h e i r t r e a t m e n t method draws on t h e p r e m i s e t h a t an u n d e r s t a n d i n g o f t h e c l i e n t ' s s u b j e c t i v e e x p e r i e n c e o f symptoms and i l l n e s s p r o c e s s , c o n c e r n s w i t h autonomy and c o n t r o l , e m o t i o n a l r e s p o n s e s and so on, i s c r i t i c a l t o t h e q u a l i t y o f c a r e . They i n d i c a t e t h a t a c l i n i c i a n must be committed t o u n d e r s t a n d i n g each c l i e n t ' s e x p e r i e n c e o f t h e i l l n e s s , t h e i r a t t e m p t s t o cope w i t h t h e i l l n e s s and t h e i n d i v i d u a l ' s r e a c t i o n t o t h e i l l n e s s . S t e i n , Diamond and F a c t o r (1990) d e s c r i b e how t h e y p r o v i d e i n d i v i d u a l i z e d t r e a t m e n t programs f o r t h e i r c l i e n t s . 173 We c a r e f u l l y a s s e s s p a t i e n t s i n a b r o a d range o f a r e a s , from h o u s i n g and f i n a n c e s t o s o c a i l i z a t i o n and m e d i c a t i o n , The p a t i e n t ' s s k i l l s , m o t i v a t i o n , g o a l s and s u p p o r t s must a l l be c a r e f u l l y c o n s i d e r e d . We t h e n d e s i g n a program t o ensure t h a t t h e p a t i e n t has what he needs i n o r d e r t o make a s t a b l e a d j u s t m e n t t o community l i f e (p.217). They a l s o promote t h e c l i e n t ' s c o p i n g e f f o r t s , i n c l u d i n g c o n t r o l o f i n f l u e n t i a l f a c t o r s . They w r i t e t h a t t h e y do n o t a t t e m p t t o c o n t r o l c l i e n t s r e g a r d i n g m e d i c a t i o n d e c i s i o n s . They o f t e n a g r e e t o c l i e n t s ' r e q u e s t s f o r s m a l l changes i n m e d i c a t i o n because i t g i v e s a c l i e n t a r e a l and i m p o r t a n t sense o f c o n t r o l i n t h e i r t r e a t m e n t . L i berman e t a l . (1987) w r i t e t h a t i t i s u s e f u l t o v i e w c l i e n t s as a c t i v e p a r t i c i p a n t s i n t h e management o f t h e i r d i s o r d e r . T h e i r " v u l n e r a b i l i t y - s t r e s s - c o p i n g - c o m p e t a n c e model" f o r s c h i z o p h r e n i a p r o v i d e s d i r e c t i o n f o r a s s e s s i n g t h e i n d i v i d u a l ' s e x p e r i e n c e w i t h t h e i l l n e s s and f o r h e l p i n g t h e i n d i v i d u a l t o improve t h e i r own c o n t r i b u t i o n s t o managing t h e i l l n e s s . They acknowledge p e o p l e w i t h s c h i z o p h r e n i a have a r e d u c e d c a p a c i t y t o a c t e f f e c t i v e l y because o f c o g n i t i v e and b e h a v i o r a l impairment. However t h e y argue t h a t t h e s e c l i e n t s can e x e r c i s e c h o i c e , a c t upon t h e i r environment and p e r s o n a l i t y , and by so d o i n g i n f l u e n c e t h e i r i l l n e s s . They p o i n t o u t t h a t l e a r n i n g how t o cope w i t h t h e symptoms, manage 174 m e d i c a t i o n , and u t i l i z e p r o f e s s i o n a l r e s o u r c e s when n e c e s s a r y a r e i m p o r t a n t g o a l s f o r r e h a b i l i t a i o n . Barham (1984) a g r e e s t h a t community c a r e o f p e o p l e w i t h s c h i z o p h r e n i a s h o u l d be based on r e s p e c t f o r t h e c l i e n t as a " p e r s o n " and s h o u l d t a k e i n t o a c c o u n t t h e i n d i v i d u a l ' s aims, p u r p o s e s and s i t u a t i o n . He n o t e s t h a t t h e p r o m o t i o n o f v a r i o u s forms o f s e l f - c a r e i s a key component o f community c a r e p o l i c i e s , and he s u g g e s t s t h a t we need t o l e a r n more about t h e e x t e n t t o w h i c h p e o p l e w i t h s e v e r e m e n t a l d i s a b i l i t i e s m ight be i n v o l v e d more d i r e c t l y i n t h e i r own c a r e . S e l z e r , S u l l i v a n , C a r s k y & T e r k e l s e n (1989) n o t e t h a t i f c l i e n t s and c l i n i c i a n s a r e t o e s t a b l i s h a u s e f u l t r e a t m e n t a l l i a n c e , i t i s e s s e n t i a l t h a t c l i n i c i a n s seek an u n d e r s t a n d i n g o f t h e i r c l i e n t s ' v i e w s o f t h e m s e l v e s , i n c l u d i n g how t h e y u n d e r s t a n d t h e i r symptoms. They add t h a t t h e s u b j e c t i v e e x p e r i e n c e o f c l i e n t s s h o u l d be a d d r e s s e d , i n c l u d i n g c o n c e r n s about autonomy and c o n t r o l , symptoms, and i l l n e s s p r o c e s s . F i n a l l y , H a f e z , Frank and D o c h e r t y (1990) w r i t e t h a t i t i s e s s e n t i a l f o r t h e c l i n i c i a n t o make i n t e r v e n t i o n s t h a t a r e c o n t e x t u a l l y m e a n i n g f u l and t h a t a r e r e l e v a n t t o each c l i e n t i n h i s / h e r l i f e s i t u a t i o n . The above d i s c u s s i o n f o c u s e s on g e n e r a l h e a l t h c a r e i n t e r v e n t i o n s and r e h a b i l i t a t i o n measures. I s t h e r e r e f e r e n c e t o t h e i n d i v i d u a l needs o f c l i e n t s i n t h e v o c a t i o n a l r e h a b i l i t a i o n l i t e r a t u r e ? There i s some 175 d i s c u s s i o n i n t h e l i t e r a t u r e about t h e need t o p r o v i d e i n d i v i d u a l i z e d employment g u i d a n c e . T e s t and B e r l i n (1981) e x p l a i n t h a t , based on t h e i r c l i n i c a l o b s e r v a t i o n s and u n p u b l i s h e d d a t a , c a r e f u l c o n s i d e r a t i o n f o r i n d i v i d u a l p r e f e r e n c e s needs t o be g i v e n when p r o v i d i n g employment g u i d a n c e t o t h e c h r o n i c a l l y m e n t a l l y i l l . J a c o b s (1988) r e p o r t s on t h e s i g n i f i c a n c e o f i n d i v i d u a l i z e d assessment and i n t e r v e n t i o n i n c l u d i n g assessement o f work s k i l l s , work h i s t o r y , c u r r e n t l e v e l o f p s y c h o p a t h o l o g y , s o c i a l and f a m i l y s u p p o r t systems, and adequacy o f c o p i n g mechanisms. He w r i t e s t h a t : Even p a t i e n t s w i t h s i m i l a r j o b h i s t o r i e s and s o c i a l s k i l l s may r e a c t d i f f e r e n t l y t o s t r e s s and r e q u i r e d i f f e r e n t v o c a t i o n a l g o a l s . One p a t i e n t may be s u i t a b l e f o r c o m p e t e t i v e community employment, w h i l e a n o t h e r may be r e a d y o n l y f o r s h e l t e r e d employment (p.249). He a r g u e s t h a t each p e r s o n has a u n i q u e p r o f i l e o f a s s e t s , d e f i c i t s , v u l n e r a b i l i t y t o s t r e s s and s e v e r i t y o f symptoms t h a t r e q u i r e s an i n d i v i d u a l l y t a i l o r e d p r e s c r i p t i o n f o r employment i n t e r v e n t i o n . Hursh and Anthony (1983) w r i t e t h a t v o c a t i o n a l r e h a b i l i t a i o n s h o u l d i n v o l v e assessment o f t h e c l i e n t ' s u n i q u e s t r e n g t h s , d e f i c i t s , and f e e l i n g s e x p e r i e n c e d i n r e l a t i o n t o work and s p e c i f i c work e n v i r o n m e n t s . A c c o r d i n g t o t h e s e a u t h o r s , a g r e a t f a i l u r e i n v o c a t i o n a l r e h a b i l i t a t i o n i s t h e f a i l u r e t o t e a c h c l i e n t s t h e s k i l l s 176 n e c e s s a r y t o choose o c c u p a t i o n s w h i c h r e l a t e t o t h e i r i n t e r e s t s , v a l u e s and a b i l i t i e s , and t o t h e r e b y g i v e them some r e s p o n s i b i l i t y and c o n t r o l i n making d e c i s i o n s c o n c e r n i n g v o c a t i o n a l c h o i c e . Work does n o t become a p e r s o n a l l y r e w a r d i n g a c t i v i t y when placement i s made i n t o a work s e t t i n g w i t h l i t t l e r e l e v a n c e . They add t h a t , i n t h o s e s i t u a t i o n s , what f o l l o w s i s a l a c k o f i n v o l v m e n t i n work a c t i v i t y and no r e s p o n s i b i l t y i n making d e c i s i o n s about f u t u r e c a r e e r p l a n s . Anthony, H o w e l l and Danley (1984) a l s o c a l l f o r i n d i v i d u a l asessment, p l a n n i n g and i n t e r v e n t i o n based on t h e i n d i v i d u a l ' s needs, i n t e r e s t s and u n i q u e a s s e s t s . Lamb (1983) s a y s t h a t a major f a c t o r i n v o c a t i o n a l r e h a b i l i t a i o n o f l o n g - t e r m c l i e n t s i s b e i n g a b l e t o i n d i v i d u a l i z e t h e i r v o c a t i o n a l p l a n s and match each p e r s o n w i t h a program t h a t w i l l maximize h i s / h e r p o t e n t i a l b u t n o t exceed h i s / h e r c a p a b i l i t e s . He adds t h a t t o o o f t e n i t i s t h e p r o f e s s i o n a l ' s and n o t t h e c l i e n t ' s g o a l t h a t i s i d e n t i f i e d . He s a y s t h a t p r o f e s s i o n a l s f a i l t o u n d e r s t a n d t h a t t h e y need t o d e v e l o p j o b o p t i o n s t h a t r e f l e c t t h e c l i e n t ' s u n i q u e i n t e r e s t s and v a l u e s . The S o c i a l C o n t e x t An o v e r v i e w o f t h e p a r t i c i p a n t s • a c c o u n t s r e v e a l s t h a t t h e s o c i a l c o n t e x t must be c o n s i d e r e d i n r e l a t i o n t o t h e e x p e r i e n c e o f l o o k i n g f o r and k e e p i n g work. Two a s p e c t s i n 177 p a r t i c u l a r , s o c i a l s t i g m a and community s u p p o r t , i n f l u e n c e d t h e p a r t i c i p a n t s * e x p e r i e n c e s . S o c i a l Stigma The f i r s t a s p e c t , s o c i a l s t i g m a , was a major c o n c e r n o f many p a r t i c i p a n t s . From t h e i r p e r s p e c t i v e , s t i g m a and m i s u n d e r s t a n d i n g o f s c h i z o p h r e n i a p r e v a i l i n t h e 1990's. E a r l i e r s t u d i e s have demonstrated t h e p u b l i c ' s n e g a t i v e a t t i t u d e t owards t h e m e n t a l l y i l l . Roman and F l o y d (1981), i n a r e p l i c a t i o n o f s t u d i e s by P h i l i p s (1964) and K i r k (1974), r e p o r t t h a t t h e p u b l i c ' s l e v e l o f r e j e c t i o n o f t h e m e n t a l l y i l l r e m ains s i m i l a r t o t h e l e v e l found i n t h e s e e a r l i e r s t u d i e s . I n New Z e a l a n d , W a l k l e y , Green and T a y l o r (1981) found p e r s i s t e n t n e g a t i v e a t t i t u d e s t o w a r d t h e m e n t a l l y i l l . The a t t i t u d e s were s i m i l a r t o t h e n e g a t i v e a t t i t u d e s r e p o r t e d i n e a r l i e r s t u d i e s by B l i z a r d (1968), and Olmsted and Durham (1976). A l s o c o n s i s t e n t w i t h e a r l i e r work, Olmsted and Smith (1980) found t h a t y o u t h a r e s o c i a l i z e d i n t o t h e n e g a t i v e a t t i t u d e s about m e n t a l i l l n e s s . The p e r c e p t i o n t h a t s c h i z o p h r e n i a i s h i g h l y s t i g m a t i z e d i s s h a r e d by many p r o f e s s i o n a l s . I n 1982, Toews and Barnes s u r v e y e d n u r s e s , s o c i a l w o r k e r s , p s y c h i a t r i s t s and p s y c h o l o g i s t s a c r o s s Canada t o document t h e s t a t u s o f s e r v i c e s f o r t h e c h r o n i c a l l y m e n t a l l y i l l . On t h e b a s i s o f t h e i r s u r v e y r e s u l t s , t h e a u t h o r s s t a t e d t h a t an a g g r e s s i v e campaign o f p u b l i c e d u c a t i o n and advocacy was u r g e n t l y r e q u i r e d t o i n c r e a s e p u b l i c awareness o f t h e needs o f p e o p l e 178 w i t h l o n g t e r m m e n t a l i l l n e s s and t o d e c r e a s e t h e s t i g m a a t t a c h e d t o i t . The s u r v e y showed t h a t t h e s e p r o f e s s i o n a l s p l a c e d n e g a t i v e p u b l i c a t t i t u d e as 4 t h out o f 15 p o s s i b l e b a r r i e r s t o s e r v i c e s . T h i s p e r c e p t i o n c o n t i n u e s t o t h e p r e s e n t . Much o f t h e c u r r e n t p o p u l a r l i t e r a t u r e on s c h i z o p h r e n i a (Garson, 1986; J e f f r i e s , Plummer, T h o r n t o n & Seeman, 1990; T o r r e y , 1988; Walsh 1985) r e f e r s t o t h e s t i g m a and m i s u n d e r s t a n d i n g o f s c h i z o p h r e n i a . I n p a r t i c u l a r , many p r o f e s s i o n a l s (Anthony, H o w e l l and Danley 1984; B e t v a n & D r i s c o l , 1981; T o r r e y , 1988) assume t h a t s t i g m a i s an o b s t a c l e t o employment f o r p e o p l e w i t h s c h i z o p h r e n i a . Because o f t h e p e r c e p t i o n s o f s t i g m a , some p a r t i c i p a n t s i n t h i s s t u d y e x p e c t e d t h a t t h e y would l o s e f r i e n d s and be t r e a t e d i n a s t e r e o t y p e d manner i f t h e y d i s c l o s e d t h e i r d i a g n o s i s . Many b e l i e v e d t h e y would n o t be h i r e d o r would be t r e a t e d d i f f e r e n t l y by employers. However, o n l y a few p r o v i d e d examples o f s i t u a t i o n s i n w h i c h t h e y were t r e a t e d i n a n e g a t i v e way i n s o c i a l o r work s i t u a t i o n s . I n f a c t , s e v e r a l p r o v i d e d examples o f work s i t u a t i o n s i n w h i c h t h e y were s u p p o r t e d . One i n d i v i d u a l i n f o r m e d t h e employer about h i s i l l n e s s and was g i v e n a j o b . O t h e r s were r e t a i n e d by t h e i r employer f o l l o w i n g d i s c l o s u r e o f t h e i l l n e s s . One p e r s o n was r e - h i r e d by an employer who was aware o f t h e employee's i l l n e s s . Y e t a n o t h e r s a i d he had been b e f r i e n d e d and s u p p o r t e d by h i s employer. 179 O t h e r s t u d i e s r e p o r t t h a t , w h i l e s u b j e c t s a n t i c i p a t e s t i g m a , i n r e a l i t y t h e y a r e o f t e n s u p p o r t e d by f r i e n d s and emp l o y e r s . F o r example, Simmon's (1965) and Warren's (1987) s u b j e c t s a n t i c i p a t e d s t i g m a , b u t t h e s e a u t h o r s i n d i c a t e t h a t i t was n o t always borne o u t i n t h e i n d i v i d u a l s ' e x p e r i e n c e . I n Warren's s t u d y , t h e women e x p r e s s e d f e a r s t h a t , f o l l o w i n g ^ h o s p i t a l i z a t i o n f o r a m e n t a l i l l n e s s , t h e y would be s t i g m a t i z e d i n t h e community. The a u t h o r e x p l a i n s t h a t h e r s u b j e c t s ' p o s t - h o s p i t a l p e r i o d t e n d e d t o be l e s s p r o b l e m a t i c t h a n a n t i c i p a t e d . W i t h o n l y a few e x c e p t i o n s , n e i t h e r t h e women's l i f e o p t i o n s , nor t h e i r r e l a t i o n s w i t h p e o p l e who knew t h e i r h i s t o r y were d r a m a t i c a l l y a f f e c t e d . The women were e x p e c t i n g t o e x p e r i e n c e s t i g m a i n t h e i r r e l a t i o n s h i p w i t h n e i g h b o r s , b u t i n o n l y one s i t u a t i o n d i d t h i s a c t u a l l y o c c u r . The a u t h o r n o t e s t h a t t h o s e who d i d have problems w i t h d i s c r i m i n a t i o n were t h o s e whose p o s t - h o s p i t a l e x p e r i e n c e i n c l u d e d a t t e m p t s t o s i g n c o n t r a c t s , o b t a i n d r i v e r s l i c e n s e s o r j o b s . U n f o r t u n a t e l y t h i s l a t t e r . p o i n t i s n o t e l a b o r a t e d upon by t h e a u t h o r . Simmon's (1965) male s u b j e c t s a l s o a n t i c i p a t e d s t i g m a and m i s u n d e r s t a n d i n g . However, o n l y one s p e c i f i c i n c i d e n t i s r e c o r d e d by t h e a u t h o r . Simmons mentions t h a t one s u b j e c t was about t o be h i r e d b u t l o s t t h e j o b when he e x p l a i n e d t h a t he was m e n t a l l y i l l . However, two o t h e r s u b j e c t s , b o t h o f whom be l o n g e d t o u n i o n s , found t h a t t h e u n i o n i g n o r e d t h e i r p s y c h i a t r i c p r o blem and p r o v i d e d o p p o r t u n i t e s f o r work. F o r 180 a n o t h e r , an employer o f f e r e d t o h e l p t h e s u b j e c t r e c o v e r h i s d r i v e r ' s l i c e n s e . Y e t a n o t h e r found t h a t h i s work a s s o c i a t e s c o l l e c t e d money t o h e l p h i s f a m i l y . O ther p a r t i c i p a n t s found t h a t employers were h e l p f u l and accomodated t h e i r needs f o r f l e x i b i l i t y i n work. Thus Simmon's case s t u d i e s seem t o i n d i c a t e t h a t p e r n i c i o u s and p e r v a s i v e s t i g m a i s more i m a g i n a r y t h a n r e a l . Brown, Bone, D a l i s o n and Wing (1966) a l s o p r o v i d e e v i d e n c e t h a t s t i g m a i s n o t always a s s o c i a t e d w i t h t h e employment e x p e r i e n c e s o f p e o p l e w i t h s c h i z o p h r e n i a . They w r i t e t h a t some employers do t a k e back employees a f t e r t h e i r d i s c h a r g e from a p s y c h i a t r i c h o s p i t a l . The a u t h o r s say t h a t some employers i n t h e i r s t u d y showed f r i e n d l y i n t e r e s t and went t o c o n s i d e r a b l e t r o u b l e t o h e l p and s u p p o r t t h e s u b j e c t s i n d i f f i c u l t t i m e s . Some s t u d i e s have a t t e m p t e d t o examine t h e e f f e c t o f employer a t t i t u d e on a c t u a l h i r i n g p r a c t i c e s . However, as Watts (1983) w r i t e s , " t h i s i s no easy m a t t e r t o a s s e s s . The answers o f employers t o q u e s t i o n s about t h e i r w i l l i n g n e s s t o employ e x - p s y c h i a t r i c p a t i e n t s have produced v e r y d i s c r e p a n t r e s u l t s d epending on how t h e q u e s t i o n s were worded" (p.231). The d i s c r e p a n c y between a t t i t u d e and a c t u a l h i r i n g p r a c t i c e s i s e v i d e n t i n t h e s t u d y r e p o r t e d by Whatley (1964). Whatley c a r r i e d o u t a s u r v e y o f 100 employers. He found t h a t 79 p e r c e n t o f them i n d i c a t e d , on a q u e s t i o n a i r e , t h a t ex-p a t i e n t s do as w e l l as anyone e l s e w i t h t h e same 181 q u a l i f i c a t i o n s . However o n l y 38 p e r c e n t s a i d t h e y would j u s t as soon h i r e an e x - p s y c h i a t r i c p a t i e n t s as anyone e l s e . W atts (1983) s u r m i s e s t h a t t h e r e may be no c o n n e c t i o n between t h e answers g i v e n on q u e s t i o n a i r e s and t h e employers a c t i o n s , as employers may g i v e what t h e y r e g a r d as t h e e x p e c t e d answer t o t h e q u e s t i o n . O l s h a n s k y , Grob and Malamud (1958) and Blum and K u j o t h (1972) a l s o f i n d t h a t , w h i l e employers c l a i m t h a t t h e y would be w i l l i n g t o employ e x - p a t i e n t s , v e r y few have k n o w i n g l y done so . W i t h a method more s o p h i s t i c a t e d t h a n t h a t o f p r e v i o u s s t u d i e s by Blum & K u j o t h (1972), F a r i n a and F e l n e r (1973) a s s e s s e d t h e p r e j u d i c e s o f employers. I n t h e i r s t u d y , some c o n f e d e r a t e n o n - p a t i e n t i n t e r v i e w e e s i n d i c a t e d d u r i n g a j o b i n t e r v i e w t h a t t h e y had s p e n t t h e p r e v i o u s n i n e months t r a v e l l i n g , w h i l e o t h e r s s a i d t h a t t h e y had been i n a m e n t a l h o s p i t a l f o r t h e n i n e month p e r i o d . Employers who were l e d t o b e l i e v e t h e y were i n t e r v i e w i n g e x - p a t i e n t s were l e s s f a v o r a b l e i n t h e i r a t t i t u d e s . They were l e s s f r i e n d l y , were l e s s l i k e l y t o o f f e r a j o b , and gave a l o w e r e s t i m a t e o f t h e p r o s p e c t o f work b e i n g o b t a i n e d . I t seems from t h e d i s c u s s i o n t h u s f a r t h a t t h e r e a r e c o n f l i c t i n g d a t a c o n c e r n i n g t h e impact o f s c h i z o p h r e n i a on t h e work e x p e r i e n c e s . I t seems t h a t s t i g m a may o p e r a t e t o i n f l u e n c e e m p loyers' b e h a v i o r towards p e o p l e w i t h s c h i z o p h r e n i a , b u t n o t i n e v e r y c a s e . One m i t i g a t i n g f a c t o r a p p e a r s t o be u n i o n i n t e r v e n t i o n . As p r e v i o u s l y mentioned, 182 Simmon's (1965) s u b j e c t s found t h a t t h e i r u n i o n s s u p p o r t e d them i n t h e i r work endeavors, and t h e r e was no a p p a r e n t s t i g m a t i z a t i o n o f t h e s u b j e c t s . The s u p p o r t i v e e f f o r t s o f u n i o n s has been demonstrated i n o t h e r s t u d i e s ( C o l e , Brewer, A l l i s o n & B r a n c h , 1964). A n o t h e r m i t i g a t i n g f a c t o r appears t o be t h e l e n g t h o f t i m e t h a t t h e p e r s o n had worked f o r t h e employer. A c c o u n t s o f t h e p a r t i c i p a n t s o f t h i s s t u d y i n d i c a t e t h a t , when t h e y had worked w i t h t h e employer o f s e v e r a l months, t h e employer was l e s s l i k e l y t o r e s p o n d i n a n e g a t i v e way. That i s , i n f o r m i n g an employer about t h e i l l n e s s was n o t n e c e s s a r i l y d e t r i m e n t a l i f a good work r e c o r d had a l r e a d y been a c h i e v e d w i t h t h a t employer. T h i s l a t t e r a s p e c t , t h e i m p o r t a n c e o f work r e c o r d , i s mentioned i n o t h e r s t u d i e s (Brown, Bone, D a l i s o n & Wing, 1966; C o l e , Brewer, A l l i s o n , & B r a n c h , 1964; O l s h a n s k y , Grob & Malamud, 1958). I n t h e s e s t u d i e s , ex-p a t i e n t s s e e k i n g t o r e t u r n t o t h e i r o l d j o b s where t h e y have a good work r e c o r d were u s u a l l y reemployed. I t seems t h a t p r e j u d i c e s o p e r a t e l e s s s t r o n g l y a g a i n s t p a t i e n t s who have e s t a b l i s h e d a work r e c o r d w i t h a p a r t i c u l a r f i r m (Watts, 1983). To what e x t e n t does s t i g m a a c t u a l l y i n t e r f e r e w i t h work e x p e r i e n c e s o f c l i e n t s w i t h s c h i z o p h r e n i a ? C o n f l i c t i n g d a t a i n t h e c u r r e n t l i t e r a t u r e makes i t r a t h e r d i f f i c u l t t o say. However, i n terms o f t h e p a r t i c i p a n t s o f t h i s s t u d y , t h e "bottom l i n e " i s t h a t t h e y p e r c i e v e d tremendous p u b l i c s t i g m a 183 o f s c h i z o p h r e n i a , and t h e y a n t i c i p a t e d s t i g m a i n s o c i a l and work s i t u a t i o n s . T h i s i n f l u e n c e d t h e i r b e h a v i o r . Some h i d t h e i r i l l n e s s from f r i e n d s . Many h i d t h e i l l n e s s from e m p l o y e r s . I n j o b i n t e r v i e w s , s e v e r a l c o v e r e d up t h e i r i l l n e s s by f i l l i n g i n gaps i n t h e resume and l e a v i n g t h e m e d i c a l h i s t o r y i n c o m p l e t e . T h i s s e c r e c y about t h e i l l n e s s i s , a c c o r d i n g t o Goffman (1968), an e x p e c t e d r e s p o n s e t o a " d i s c r e d i t a b l e s t i g m a " . Page (1984) w r i t e s t h a t i n d i v i d u a l s w i t h d i s c r e d i t a b l e s t i g m a o f t e n a t t e m p t t o pass as "normal." He says t h a t some o f t h e s e p e o p l e may d e c i d e t o r e s t r i c t i n f o r m a t i o n about t h e i r s t i g m a t o a s m a l l group such as f a m i l y and c l o s e f r i e n d s . I n many o t h e r s t u d i e s ( C o l e , Brewer, A l l i s o n & B r a n c h , 1964; O l s h a n s k y , Grub & E k d a h l , 1960; Simmons, 1965; Warren, 1987; Westermeyer & Harrow, 1987), t h e s u b j e c t s ' r eponse i s s i m i l a r t o t h e r e s p o n s e o f t h e p a r t i c i p a n t s o f t h i s s t u d y . That i s , t h e y h i d t h e d i a g n o s i s . F o r example, Warren (1987) says t h a t , among t h e women who at t e m p t e d t o o b t a i n employment a f t e r h o s p i t a l i z a t i o n , t h r e e k e p t t h e i r i l l n e s s s e c r e t . As C o l e and c o l l e a g u e s (1964) w r i t e , "a c o n t i n u a l game o f x b l i n d man's b l u f f e x i s t s between employers and t h e p a t i e n t s e e k i n g a j o b a f t e r d i s c h a r g e " (p.315). I n t h e i r s t u d y , two out o f t h r e e s u b j e c t s competin