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Life experiences of young adults with a chronic illness: an analyses of Crohn’s disease and colitis Matthes, Glenn E. 1995

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LIFE EXPERIENCES OF YOUNG ADULTS WITH A CHRONIC ILLNESS: AN ANALYSES OF CROHN'S DISEASE AND COLITIS by GLENN E. MATTHES A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF ARTS i n THE FACULTY OF GRADUATE STUDIES (Department of Counselling Psychology) We accept t h i s t h e s i s as conforming to the required standard THE UNIVERSITY OF BRITISH August, 19 95 (c) Glenn E. Matthes, COLUMBIA 1995 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 CcvA,<;fit, A, C AyttfOco £J The University of British Columbia Vancouver, Canada Date I } /79<r DE-6 (2/88) ABSTRACT What i s the e x p e r i e n c e l i k e f o r young a d u l t s l i v i n g w i t h C r o h n ' s d i s e a s e o r c o l i t i s ? T h i s q u e s t i o n p r o v i d e d t h e f o c u s f o r i n t e r v i e w s and w r i t t e n n a r r a t i v e s o f 10 p a r t i c i p a n t s i n a s tudy e x p l o r i n g the p e r c e p t i o n s o f , r e s p o n s e s t o , and management o f the l i f e e x p e r i e n c e o f l i v i n g w i t h an i l l n e s s . Q u a l i t a t i v e approaches t o r e s e a r c h , i n v o l v i n g phenomenolog ica l p r i n c i p l e s , g u i d e d the s t u d y . A s y n o p s i s o f each i n d i v i d u a l p a r t i c i p a n t ' s i n t e r v i e w and w r i t t e n n a r r a t i v e comprise a l a r g e p a r t o f the body o f t h e t h e s i s . E i g h t themes, e s t a b l i s h e d from the i n t e r v i e w s and w r i t t e n n a r r a t i v e s o f a l l p a r t i c i p a n t s , d e s c r i b e the essence o f t h e phenomenon. ( i i ) TABLE OF CONTENTS Page ABSTRACT ( i i ) TABLE OF CONTENTS ( i i i ) CHAPTER ONE: INTRODUCTION 1 P s y c h o l o g i c a l A s p e c t s o f C r o h n ' s D i s e a s e and C o l i t i s 8 F a c t o r s M e d i a t i n g P s y c h o l o g i c a l Adjustment 12 O u t l i n e o f Study 2 0 CHAPTER TWO: RESEARCH METHODS 22 L i m i t a t i o n s and E v a l u a t i o n o f the Method 2 6 My Own Assumpt ions : P r e s u p p o s i t i o n s P r i o r t o t h e R e s e a r c h 31 P a r t i c i p a n t s 3 2 P r o c e d u r e s 3 3 W r i t t e n N a r r a t i v e s 3 3 I n t e r v i e w s 3 5 Data A n a l y s i s 38 CHAPTER THREE: ANALYSIS AND RESULTS 47 J a n e t 4 8 A n i t a 56 W i l l i a m 61 E l a i n e 66 Amy 73 T e r e s a 75 ( i i i ) TABLE OF CONTENTS (CONTINUED) H e l e n . . . 80 M i c h a e l 86 Ted 91 Nancy 9 3 R e f l e c t i o n s from the Proces s D i a r y 99 CHAPTER FOUR: GENERAL STRUCTURE 102 Summary o f the Themes 103 D i s c u s s i o n o f G e n e r a l S t r u c t u r e 104 CHAPTER F I V E : DISCUSSION 148 Comparisons t o Other L i t e r a t u r e . 151 I m p l i c a t i o n s f o r R e s e a r c h . 165 I m p l i c a t i o n s f o r C o u n s e l l i n g 166 P e r s o n a l Meaning 171 REFERENCES . 173 APPENDICES 183 Appendix A - Recru i tment N o t i c e 184 Appendix B - O r i e n t a t i o n t o the W r i t t e n N a r r a t i v e 186 Appendix C - I n t r o d u c t i o n t o the I n t e r v i e w 188 Appendix D - Consent Form 191 Appendix E - Demographic Q u e s t i o n n a i r e 193 Appendix F - Sample I n t e r v i e w Q u e s t i o n s 195 ( iv) ACKNOWLEDGEMENTS I would like to thank the following people. To my participants for generously volunteering their time and for openly sharing their stories. To my advisor, Richard Young, for his knowledge and guidance. To my committee members, Judith Daniluk and Judy Lynam for their feedback that helped me to refine my work. To my family for their encouragement throughout my academic career. To my partner Lori for her love and endless support. Together we share the joy of this achievement. (v) CHAPTER ONE I n t r o d u c t i o n The purpose o f t h i s s tudy was t o examine how young a d u l t s make sense o f the i n f l u e n c e s C r o h n ' s d i s e a s e o r c o l i t i s have had on t h e i r l i v e s . T h i s p r o j e c t i n v e s t i g a t e d young a d u l t s / p e r c e p t i o n s o f , re sponses t o , and management o f t h e l i f e e x p e r i e n c e o f l i v i n g w i t h an i l l n e s s . The v a l u e o f t h i s s tudy i s i n u n d e r s t a n d i n g the e x p e r i e n c e o f young a d u l t s c o p i n g w i t h c h r o n i c i l l n e s s from t h e i r own p e r s p e c t i v e . The main t h r u s t o f t h i s s tudy was t o c o n t r i b u t e t o t h e u n d e r s t a n d i n g o f c h r o n i c i l l n e s s v a r i a b l e s , i n p a r t i c u l a r t h o s e i n v o l v e d w i t h h a v i n g C r o h n ' s d i s e a s e o r c o l i t i s , and how these v a r i a b l e s are e x p e r i e n c e d by young a d u l t s . C r o h n ' s d i s e a s e and c o l i t i s are grouped under t h e h e a d i n g o f Inf lammatory Bowel D i s e a s e . They a r e b o t h c h r o n i c i l l n e s s e s t h a t a f f e c t the i n t e s t i n e s . C o l i t i s a t t a c k s t h e i n n e r l i n i n g o f the l a r g e bowel w h i l e C r o h n ' s d i s e a s e ( a l s o known as I l e i t i s ) i s c h a r a c t e r i z e d by i n f l a m m a t i o n which p e n e t r a t e s the e n t i r e t h i c k n e s s o f the bowel w a l l , u s u a l l y i n t h e s m a l l i n t e s t i n a l a r e a . I t may a t t a c k a t any p o i n t o f t h e g a s t r o i n t e s t i n a l system from mouth t o anus ( S t e i n h a u s e n & K i e s , 1982) . The s i g n s and symptoms of Inf lammatory Bowel D i s e a s e a r e as f o l l o w s : a) b loody d i a r r h e a ; b) abdominal p a i n ; c) we ight l o s s ; d) f e v e r ; e) f a t i g u e ; and f) m a l n u t r i t i o n . Onset o f t e n o c c u r s d u r i n g a d o l e s c e n c e , a t ime when the p h y s i c a l and e m o t i o n a l impact can be d e v a s t a t i n g as s e x u a l and p h y s i c a l growth are o f t e n d e l a y e d (S te inhausen & K i e s , 1982) . The cause o f these i l l n e s s e s i s , a t the p r e s e n t t i m e , unknown and no s p e c i f i c t rea tment i s e f f e c t i v e f o r a l l p e o p l e who s u f f e r from them (Ste inhausen & K i e s , 1982) . The p r i m a r y t r e a t m e n t s i n v o l v e s e v e r a l d i f f e r e n t t y p e s o f drugs ( S a l a z o p y r i n , a s u l p h a d r u g ; Imuran, an immunosuppress ive ; 5 - A m i n o s a l i c y l i c a c i d , and v a r i o u s types o f s t e r o i d based drugs ) and d i f f e r e n t t y p e s o f s u r g e r i e s (bowel r e s e c t i o n s , where a p i e c e o f i n t e s t i n e i s s u r g i c a l l y removed; i l e o s t o m i e s , where the b o d y ' s f l u i d wastes from t h e s m a l l e r i n t e s t i n e a r e emptied through a s u r g i c a l l y p r e p a r e d open ing i n t h e s k i n on the f r o n t o f the abdomen, and t h e m a t e r i a l c o l l e c t s i n t o a bag which i s a t t a c h e d t o the s k i n by means o f s p e c i a l a d h e s i v e s ; o r c o l o s t o m i e s , which i s s i m i l a r t o an i l e o s t o m y but the s u r g i c a l procedure i n v o l v e s t h e l a r g e b o w e l ) . Persons w i t h C r o h n ' s d i s e a s e o r c o l i t i s may a l s o f a c e f r e q u e n t h o s p i t a l i z a t i o n because o f the consequences o f i n f l a m m a t i o n ( i . e . f i s t u l a s ) . C o l i t i s was f i r s t d i s c o v e r e d and d iagnosed i n 1905 and C r o h n ' s d i s e a s e i n 1932. P r e v a l e n c e f i g u r e s f o r Canada a r e e s t i m a t e d a t 110,000. Two-thousand new cases a r e d i a g n o s e d each y e a r ( A s a k u r a , T s u c h i y a , A i s o , Watanabe, K o b a y a s h i , H i r e , Ando, T a k a t a , & S e k i g u c h i , 1982). P e r s o n s w i t h C r o h n ' s d i s e a s e o r c o l i t i s have a p p r o x i m a t e l y one chance i n t e n o f h a v i n g o t h e r case s o f t h e s e i l l n e s s e s among t h e i r b l o o d r e l a t i v e s . The c o n d i t i o n s may s k i p g e n e r a t i o n s or may appear., i n s u c c e s s i v e g e n e r a t i o n s (Asakura e t a l . , 1982). P a s t r e s e a r c h ( B e n - S i r a , 1982) has found a n e g a t i v e c o r r e l a t i o n between age and c h r o n i c d i s e a s e i n d i c a t i n g t h a t young a d u l t s have fewer chances t h a n o l d e r a d u l t s o f b e i n g c h r o n i c a l l y i l l . However, t h i s f i n d i n g does not appear t o h o l d t r u e f o r C r o h n ' s d i s e a s e o r c o l i t i s . These i l l n e s s e s s t r i k e most f r e q u e n t l y between the ages o f 15 and 29 (Asakura e t a l . , 1982). T h i r t y p e r c e n t o f a l l p e o p l e v i s i t i n g t h e i r d o c t o r s s u f f e r from a d i g e s t i v e t r a c t r e l a t e d d i s e a s e . People w i t h g a s t r o i n t e s t i n a l d i s e a s e s occupy more h o s p i t a l beds than a l l peop le w i t h c a r d i o v a s c u l a r and r e s p i r a t o r y d i s e a s e s (Asakura e t a l , 1982) . Inf lammatory Bowel D i sease i s b e l i e v e d not t o be an e m o t i o n a l d i s o r d e r . C r o h n ' s d i s e a s e and c o l i t i s have not been found t o be caused by s t r e s s o r a n x i e t y and a r e no t r e s t r i c t e d t o c e r t a i n p e r s o n a l i t y types (Asakura e t a l . , 1982) . In the p a s t , C r o h n ' s d i s e a s e and c o l i t i s have been i n v e s t i g a t e d l a r g e l y from the p e r s p e c t i v e t h a t t h e s e two i l l n e s s e s were caused by emot iona l and p s y c h o l o g i c a l d i s t u r b a n c e s ( A r a p a k i s , L y k e t s o s , Gero lymatos , R i c h a r d s o n , & L y k e t s o s , 1986; C a s t e l n u o v a - T e d e s c o , 1966; F r e y b e r g e r , Kunsebeck , Lempa, Wellmann, & A v e n a r i u s , 1985) . However, i n t h e l a s t two decades i t has been r e a l i z e d t h a t t h e r e i s no s t e r e o t y p i c a l p e r s o n a l i t y which i s d i s p o s e d t o the development o f C r o h n ' s d i s e a s e or c o l i t i s ( A r a p a k i s e t a l . , 198 6; M e n d e l o f f , Monk, S i e g a l , & L i l i e n f e l d , 1970; Monk, M e n d e l o f f , . S i e g e l , & L i l i e n f e l d , 1969). P r e v i o u s p s y c h o l o g i c a l r e s e a r c h on C r o h n ' s d i s e a s e and c o l i t i s has c e n t e r e d around a t t e m p t i n g t o f i n d p s y c h o g e n i c causes f o r t h e i l l n e s s e s ( A r a p a k i s e t a l . , 1986; C a s t e l n u o v a - T e d e s c o , 1966; F r e y b e r g e r e t a l . , 1985). With v e r y mixed r e s u l t s and many assumpt ions and o v e r - g e n e r a l i z a t i o n s a l o n g w i t h r e c e n t advances i n m e d i c a l r e s e a r c h i n the a r e a o f t h e s e c h r o n i c i l l n e s s e s , the psychogen ic l a b e l has been d i s c r e d i t e d . Though many at tempts were made, l i n k s between p s y c h o g e n i c f a c t o r s as a cause o f C r o h n ' s d i s e a s e and c o l i t i s have never been e s t a b l i s h e d . A r a p a k i s e t a l . (1986) i n compar ing peop le w i t h c o l i t i s and i r r i t a b l e bowel syndrome, found i n d i v i d u a l s i n both groups t o be l e s s dominant t h a n the c o n t r o l group , have more t e n d e n c i e s t o r e a c t t o f r u s t r a t i o n by d i r e c t i n g anger and blame toward t h e m s e l v e s , be more anx ious and more d e p r e s s e d t h a n t h e c o n t r o l g r o u p . However, no c h a r a c t e r i s t i c modes o f b e h a v i o u r and thought p r e d i s p o s i n g peop le w i t h c o l i t i s t o the development o f t h e i r i l l n e s s were found . The f i n d i n g t h a t p e o p l e w i t h c o l i t i s s c o r e d h i g h e r on a n x i e t y and d e p r e s s i o n i s o f l i m i t e d u s e f u l n e s s because i t does not t a k e i n t o a c c o u n t how i l l n e s s symptoms i n t e r a c t i n c r e a t i n g an i n d i v i d u a l w i t h h i g h e r a n x i e t y and d e p r e s s i o n . T h e r e f o r e , a more h o l i s t i c p i c t u r e o f how c h r o n i c i l l n e s s symptoms i n t e r a c t w i t h a p e r s o n ' s p s y c h o s o c i a l development i s v e r y i m p o r t a n t . A r a p a k i s e t a l . (1986) o v e r - g e n e r a l i z e d t h e i r f i n d i n g s by i m p l y i n g t h a t the f i n d i n g o f low dominance i n p e o p l e w i t h c o l i t i s may r e f l e c t the a c t i v a t i o n o f a p s y c h o s o m a t i c f a c t o r which l e d t o the symptoms of t h e i l l n e s s . They a l s o found a h i g h l e v e l o f i n t r o p u n i t i v e n e s s , c h a r a c t e r i z e d by the tendency to r e a c t t o f r u s t r a t i o n by d i r e c t i n g anger and blame toward o n e s e l f , the i n t e r n a l l y f o c u s e d emotions o f t e n b e i n g e x p e r i e n c e d as g u i l t o r shame, which they thought p r e d i c t e d the presence o f n e u r o t i c symptoms c o n f i r m e d by t h e i r f i n d i n g s o f e l e v a t e d a n x i e t y and d e p r e s s i o n o f these g r o u p s . However, they admit t h a t t h e i r d a t a do not c l a r i f y whether i t i s a s s o c i a t e d w i t h the same dynamics u n d e r l y i n g the p r i m a r y d i s e a s e p r o c e s s , o r i f i t i s r e a c t i v e t o the p s y c h o s o c i a l impact o f the p r i m a r y d i s e a s e ( A r a p a k i s e t a l . , 1986). F r e y b e r g e r e t a l . (1985), commenting on some p r e v i o u s p s y c h o - t h e r a p e u t i c f i n d i n g s w i t h r e g a r d s t o p e o p l e w i t h C r o h n ' s d i s e a s e , suggested t h a t peop le w i t h the d i s e a s e show a d i s r u p t i o n i n both a f f e c t i v e and c o g n i t i v e p r o c e s s e s . They a l s o r e f e r t o f o u r peop le w i t h the i l l n e s s who have been t r e a t e d w i t h i n one o f t h e i r r e s e a r c h p r o j e c t s . They found t h a t t h e p e o p l e w i t h C r o h n ' s d i s e a s e had r e l a t i v e l y u n d i f f e r e n t i a t e d emotions and t h e i r t h i n k i n g t ended t o d w e l l on the mundane. The a u t h o r s c o n c l u d e d t h a t these p e r s o n a l i t y t r a i t s caused the d i s e a s e . No r e s e a r c h was conducted t o see whether these t r a i t s were p r e v a l e n t b e f o r e the c h r o n i c i l l n e s s onse t or i f they o n l y appeared a f t e r . Monk e t a l . (1969), i n an e p i d e m i o l o g i c a l s t u d y , found no i m p o r t a n t p e r s o n a l i t y d i f f e r e n c e s between p e o p l e w i t h c o l i t i s and a c o n t r o l group . I n d i v i d u a l s h o s p i t a l i z e d w i t h c o l i t i s were i n t e r v i e w e d and compared w i t h a sample o f t h e g e n e r a l p o p u l a t i o n and w i t h a group o f peop le w i t h " i r r i t a b l e c o l o n , " who were i n t e r v i e w e d i n the same way. I n d i v i d u a l s w i t h c o l i t i s d i d not d i f f e r from the compar i son g r o u p s . The l a r g e p r o p o r t i o n o f Jewi sh p e o p l e i n the c o l i t i s group was the most d i s t i n c t i v e c h a r a c t e r i s t i c o f t h i s g r o u p . The h i g h e r number o f J e w i s h p e o p l e might be a c c o u n t e d f o r by g e n e t i c f a c t o r s . M e n d e l o f f e t a l . (1970) r e p l i c a t e d t h e s e f i n d i n g s . E s l e r and G o u l s t o n (1973) a l s o found t h a t p e o p l e w i t h c o l i t i s d i d not d i f f e r a l o n g p e r s o n a l i t y d i m e n s i o n s from a c o n t r o l group of people w i t h g e n e r a l m e d i c a l p r o b l e m s . D a n i e l s , O 'Connor , K a r u s h , Moses, F l o o d , and L e p o r e (1962) t r e a t e d 57 peop le w i t h C o l i t i s w i t h p s y c h o t h e r a p y . They compared them w i t h 138 peop le w i t h c o l i t i s no t r e c e i v i n g p s y c h o t h e r a p y . When compared on l i f e adjus tment i n f a m i l y and c a r e e r , those who r e c e i v e d p s y c h o t h e r a p y were g e n e r a l l y h i g h e r i n adjustment s c o r e s . However, the number o f s e s s i o n s d i d not c o r r e l a t e w i t h the improvement o r w o r s e n i n g o f a c t u a l b o d i l y symptoms. The changes were found t o be p s y c h o l o g i c a l i n n a t u r e , not p h y s i c a l . In a n o t h e r s t u d y , e v a l u a t i o n s o f the e f f e c t i v e n e s s o f p s y c h o t h e r a p y i n the t r e a t m e n t o f peop le w i t h c o l i t i s showed t h a t c o u n s e l l i n g had demonstrated f a v o u r a b l e e f f e c t s e m o t i o n a l l y , but once a g a i n , not p h y s i c a l l y , i n c o n t r a s t t o a c o n t r o l group which changed h a r d l y a t a l l i n any r e s p e c t (O'Connor , D a n i e l s , F l o o d , K a r u s h , Moses, & S t e r n , 1964). Those who underwent i l e o s t o m y f o r r e l i e f o f c o l i t i s symptoms showed an improved change i n t h e i r body image as a r e s u l t o f p s y c h o t h e r a p y ( D r u s s , O ' C o n n o r , & S t e r n , 1972). A l t h o u g h r e s u l t s were mixed on whether C r o h n ' s d i s e a s e and c o l i t i s were psychosomat ic i l l n e s s e s , some s t u d i e s a u t o m a t i c a l l y assumed t h a t these c h r o n i c i l l n e s s e s f e l l under t h i s l a b e l when s e l e c t i n g t h e i r p a r t i c i p a n t s . T a y l o r and Doody (1985) s t u d i e d monodic speech samples o b t a i n e d from 20 p s y c h o - n e u r o t i c and 20 s o - c a l l e d p s y c h o s o m a t i c p e r s o n s , u s i n g s e l e c t e d Thematic A p p e r c e p t i o n T e s t c a r d s , and d i f f e r e n t methods o f c o n t e n t a n a l y s i s . The i n d i v i d u a l s assumed t o be psychosomat ic were 10 peop le w i t h C r o h n ' s d i s e a s e and 10 peop le w i t h c o l i t i s . I t appears i m p o r t a n t t o r e c o g n i z e t h a t g e n e r a l i z a t i o n s were made t o a p s y c h o s o m a t i c p o p u l a t i o n from a sample t h a t has been shown t o n o t be p s y c h o s o m a t i c . Other a spec t s o f C r o h n ' s d i s e a s e and c o l i t i s have been s t u d i e d : F i s h i e r and F o g e l (1973) s t u d i e d 25 c h i l d r e n who had u l c e r a t i v e c o l i t i s , and matched c o n t r o l s . S c o r e s on the B e l l Adjustment and Maslow S e c u r i t y - I n s e c u r i t y I n v e n t o r i e s r e v e a l e d no d i f f e r e n c e between these g r o u p s . A r e c o g n i t i o n o f the need f o r d i f f e r e n t r e s e a r c h approaches t o unders tand these i l l n e s s e s r e s u l t e d i n A l b e r t s and Lyons (1988) s t u d y on c o l i t i s . These r e s e a r c h e r s implemented r e s e a r c h p r a c t i c e s w i t h a framework o f t r y i n g t o f i n d h e l p f u l c o p i n g s t r a t e g i e s f o r i n d i v i d u a l s w i t h t h i s d i s e a s e . The r e l a t i o n s h i p o f i l l n e s s v a r i a b l e s (demographic , i l l n e s s q u a l i t y , t r e a t m e n t , l i f e s t y l e and i n t e r p e r s o n a l ) t o t h e e i g h t c o p i n g s t y l e s as measured by the M i l l o n B e h a v i o u r a l H e a l t h I n v e n t o r y were i n v e s t i g a t e d i n 3 8 a d u l t s w i t h c o l i t i s f o r the purpose o f i d e n t i f y i n g c o p i n g s t y l e s i m p o r t a n t i n managing the c o n d i t i o n . Another i n f e r e n c e drawn from the r e s u l t s i s the su p p or t g i v e n f i n d i n g s o f Monk, e t a l . (1970) and M e n d e l o f f , e t a l . (1970), t h a t no c h a r a c t e r i s t i c p e r s o n a l i t y i s r e p r e s e n t a t i v e o f p e o p l e w i t h c o l i t i s . The p a r t i c i p a n t s d i d not demonstrate a p a r t i c u l a r c h a r a c t e r p r o f i l e . The p o s s i b i l i t y t h a t p s y c h o l o g i c a l t r e a t m e n t c o u l d r e s u l t i n a more a d a p t i v e c o p i n g s t y l e was d i s c u s s e d . P s y c h o l o g i c a l A s p e c t s of C r o h n ' s D i s e a s e and C o l i t i s Any s e v e r e i l l n e s s i n a young a d u l t r e p r e s e n t s a c r i s i s ( P l e s s & P i n k e r t o n , 1975). The n a t u r e and e x t e n t o f d i s r u p t i o n accompanying an i l l n e s s w i l l o f t e n v a r y a c c o r d i n g t o the age a t which i t o c c u r s . E i t h e r the i l l n e s s i t s e l f o r r e s t r i c t i o n s imposed by i t s management may i n t e r f e r e w i t h f u n c t i o n i n g and d i s r u p t development and normal l i v i n g . C h r o n i c i l l n e s s i s f r e q u e n t l y a s s o c i a t e d w i t h ongo ing p r o b l e m s . The young a d u l t ' s adjustment w i l l be a f f e c t e d by a number o f f a c t o r s t h a t , s e p a r a t e l y or t o g e t h e r , may o c c u r d u r i n g the c o u r s e o f an i l l n e s s . Some i l l n e s s e s r e q u i r e p e r i o d s o f r e s t r i c t e d m o b i l i t y o r i s o l a t i o n from f a m i l i a r peop le and s u r r o u n d i n g s . S t e i n h a u e r , M u s h i n , and Rae -Grant (1982) commenting on some f i n d i n g s w i t h r e g a r d s to peop le w i t h a v a r i e t y o f c h r o n i c i l l n e s s e s , sugges ted t h a t a young a d u l t w i t h a c h r o n i c i l l n e s s may withdraw i n t o f a n t a s y as a means o f c o p i n g , t h i s t endency b e i n g enhanced by i s o l a t i o n . T h i s may l e a d t o an e s c a l a t i o n o f u n r e a l i s t i c e x p e c t a t i o n s r e g a r d i n g t h e i l l n e s s and management ( S t e i n h a u e r e t a l . , 1982). Recent w r i t e r s suggest t h a t i t i s d u r i n g the i n i t i a l p e r i o d t h a t the s t r e s s i s h i g h and p s y c h o l o g i c a l a s s i s t a n c e may be r e q u i r e d ( G e i s t , 1979). G e n e r a l l y s p e a k i n g , t h e more d e b i l i t a t i n g the i l l n e s s and the p o o r e r the p r o g n o s i s , the g r e a t e r t h e s t r e s s on the p e r s o n . A s e r i o u s c h r o n i c i l l n e s s , e s p e c i a l l y i f the c l i n i c a l course i s one o f r e l e n t l e s s p r o g r e s s i o n , i s bound t o produce t e r r i b l e s t r e s s f o r t h e p e r s o n . I f the i l l n e s s i s a c t i v e i n young a d u l t h o o d t h e p e r s o n w i l l e x p e r i e n c e a g r e a t sense o f d e p r e s s i o n when they a r e f o r c e d by the i l l n e s s t o s c a l e down t h e i r hopes and e x p e c t a t i o n s . I f the i l l n e s s i s c l e a r l y v i s i b l e and f r e q u e n t l y e l i c i t s r e a c t i o n s o f d i s g u s t o r a v e r s i o n from o t h e r s ( e . g . , s c a r r i n g from s u r g e r i e s ) , the c o n t i n u e d c o n f r o n t a t i o n w i t h the d i s c o m f o r t o f o t h e r s may p r o v e a s e r i o u s blow t o the person (S te inhauer e t a l . , 1982) . Some i l l n e s s e s r e q u i r e a program of management and r e s t r i c t i o n s , such as C r o h n ' s d i s e a s e and c o l i t i s w i t h i t s f r e q u e n t m e d i c a t i o n s , d i e t a r y r e s t r i c t i o n s , and r e g u l a r t e s t i n g ( S t e i n h a u e r e t a l . , 1982). These programs o f management and r e s t r i c t i o n s can cause anger and f r u s t r a t i o n . Upward m o b i l i t y i n work can be s e r i o u s l y l i m i t e d by a c h r o n i c i l l n e s s (S te inhauer e t a l . , 1982). A p e r s o n i s o f t e n f a c e d w i t h h a v i n g t o take t ime o f f o f work when t h e i r i l l n e s s a c t s up . A l s o t h e r e performance a t work may be h i n d e r e d by t h e i r i l l n e s s . In e s t i m a t i n g the c o s t s o f an i l l n e s s , the h i d d e n d o l l a r s - a n d - c e n t s c o s t must be c o n s i d e r e d ( e . g . , m e d i c a t i o n s , s p e c i a l d i e t s , e t c . ) ( K a l n i n s , C h u r c h i l l , & T e r r y , 198 0 ) . F o r peop le w i t h l i m i t e d income, t h e s e expenses may be a major source o f a d d i t i o n a l p r e s s u r e . To r e l i e v e some o f t h i s p r e s s u r e , peop le may make the dangerous d e c i s i o n o f de ny i ng t h a t they need the m e d i c a t i o n s . To some e x t e n t , a l l peop le r e a c t w i t h d e n i a l t o t h e shock o f t h e i r i l l n e s s . D e n i a l i s p r o b a b l y never c o m p l e t e l y abandoned, c e r t a i n l y not a t any s i n g l e t i m e . P e r s i s t e n t d e n i a l i n the f a c e o f i l l n e s s i n t e r f e r e s w i t h the p e r s o n ' s a b i l i t y t o d e a l w i t h t h e i r i l l n e s s , thus p e r p e t u a t i n g t h e c r i s i s p r e c i p i t a t e d by the i l l n e s s . D e p r e s s i o n i s a s tage i n t h e i r coming t o terms w i t h t h e i m p l i c a t i o n s o f t h e i r d i s e a s e . Some peop le l e a r n t o a c c e p t t h e i l l n e s s and i t s consequences f o r t h e i r l i f e . O t h e r s never do so , and t h e i r l i f e may be dominated by t h e i r u n r e s o l v e d d e p r e s s i o n ( S t e i n h a u e r e t a l . , 1982) . Perhaps h a l f o f the g r i e f s u f f e r e d from p a i n f u l i l l n e s s e s i s p s y c h o l o g i c a l (Pawl, 1979). P e r s i s t e n t abdominal p a i n i s a symptom o f t e n e x p e r i e n c e d by those w i t h C r o h n ' s d i s e a s e or c o l i t i s . When f a c e d w i t h c o n t i n u a l p a i n , even the most h e a r t y and s t a b l e mind can f a l t e r . Those a f f l i c t e d l o s e some o f t h e i r a b i l i t y t o r e s p o n d t o t h e i r env ironment . They may c o n c e n t r a t e l e s s on i n t e r p e r s o n a l r e l a t i o n s h i p s than on the p a i n i t s e l f . R e l a t i o n s h i p s then become i r r i t a t i n g r a t h e r t h a n j o y f u l . R o u t i n e a c t i v i t i e s become h a r d e r and may be n e g l e c t e d (Pawl , 1979) . In a c h r o n i c i l l n e s s , where a p a i n f u l p r o c e s s becomes overwhelming f o r whatever r e a s o n , the p e r s o n so a f f l i c t e d may i n i t i a l l y l o s e her or h i s enthus iasm f o r l i f e . As t h e g r i e f i s drawn-out over days , weeks or months, t h e s u f f e r e r may become wi thdrawn, moody, i r r i t a b l e and e v e n t u a l l y d e p r e s s e d t o t h e p o i n t where l i f e ' s g o a l s and r e s p o n s i b i l i t i e s may be d e s e r t e d . The p s y c h o l o g i c a l components o f the p e r s o n ' s p a i n problem need as much a t t e n t i o n t h e r a p e u t i c a l l y as the o r g a n i c p o r t i o n (Pawl , 1979) . A young a d u l t ' s response t o p a i n v a r i e s w i t h how t h a t p a i n i s p e r c e i v e d (Nover, 1973). P a i n caused by the young a d u l t ' s i l l n e s s may produce i r r i t a b i l i t y . T h i s t r a i t may p r e s e n t a d d i t i o n a l p r e s s u r e s and may r e s u l t i n f e e l i n g s o f g u i l t , and inadequacy i n t h e p e r s o n . I f p a i n i s bad enough and l a s t s l o n g enough i t u l t i m a t e l y wears peop le down (S te inhauer e t a l . , 1982) . Persons w i t h C r o h n ' s d i s e a s e or c o l i t i s a r e l i k e l y t o be anemic and p r o t e i n d e f i c i e n t . T h i s can make them t i r e d and l i s t l e s s . They may f i n d d e a l i n g w i t h l i f e t a s k s a huge b u r d e n . These i l l n e s s e s o f t e n cause a person t o r e s t r i c t t h e i r d i e t t o the p o i n t o f a v o i d i n g s o l i d f o o d s . P r o l o n g e d p e r i o d s on l i q u i d d i e t s o r on i n t r a v e n o u s f e e d i n g can be a s s o c i a t e d w i t h d e p r e s s i o n . D e p r e s s i o n can be another e m o t i o n a l symptom commonly found among those w i t h a c h r o n i c i l l n e s s ( S t e i n h a u e r e t a l . , 1982). D i a r r h e a i s a common symptom of these d i s e a s e s . When d i a r r h e a i s s evere i t o f t e n c o n t i n u e s t h rou gh the n i g h t and h i n d e r s p r o p e r s l e e p p a t t e r n s . Without s u f f i c i e n t s l e e p a p e r s o n ' s a l e r t n e s s and behav iour can be a f f e c t e d ( S t e i n h a u e r e t a l . , 1982) . C e r t a i n forms of m e d i c a t i o n may a f f e c t the young a d u l t ' s a l e r t n e s s and behav iour ( e . g . s t e r o i d s ) . O c c a s i o n a l l y headaches o c c u r w i t h c e r t a i n d r u g t r e a t m e n t s and i r r i t a b i l i t y may r e s u l t (S te inhauer e t a l . , 1982) . Persons a f f e c t e d by s t e r o i d s can become d e p r e s s e d . A l o n g w i t h v a r i o u s d r u g t r e a t m e n t s , C r o h n ' s d i s e a s e and c o l i t i s can r e q u i r e f r e q u e n t h o s p i t a l i z a t i o n , p a i n f u l p r o c e d u r e s , and r e p e a t e d s u r g e r y , which can p r e s e n t p a r t i c u l a r d i f f i c u l t i e s f o r young a d u l t s . H o s p i t a l i z a t i o n r e q u i r e s the i n d i v i d u a l t o be away from f a m i l y and f r i e n d s f o r p r o l o n g e d p e r i o d s o f t i m e . For the p e r s o n who has t o have s u r g e r y i t can be d e v a s t a t i n g ( S t e i n h a u e r e t a l . , 1982) . F a c t o r s M e d i a t i n g P s y c h o l o g i c a l Adjustment A s t r o n g network of f a m i l y and f r i e n d s may ease t h e p h y s i c a l and e m o t i o n a l burden of d a y - t o - d a y l i v i n g f o r the c h r o n i c a l l y i l l p e r s o n (S te inhauer e t a l . , 1982) . S u c c e s s f u l management o f the e m o t i o n a l a spec t s o f c h r o n i c i l l n e s s i s based on a r e c o g n i t i o n t h a t i l l n e s s i n a p e r s o n w i l l have major i m p l i c a t i o n s on mental h e a l t h and r e l a t i o n s h i p s . The more p e o p l e have r e s o l v e d t h e i r e m o t i o n a l i s s u e s , t h e b e t t e r they w i l l be a b l e t o meet t h e i r p h y s i c a l and needs and t o d e a l s u c c e s s f u l l y w i t h the a d d i t i o n a l s t r a i n s imposed by i l l n e s s w i t h min imal damage and d i s r u p t i o n t o t h e i r l i v e s . O n l y when p e o p l e have r e c e i v e d a c l e a r and d e f i n i t i v e d i a g n o s i s can they b e g i n t o d e a l f i r s t w i t h the n e c e s s a r y p r a c t i c a l p l a n n i n g and l a t e r w i t h the arduous but no l e s s i m p o r t a n t t a s k o f e m o t i o n a l l y a c c e p t i n g the i n e v i t a b l e ( S t e i n h a u e r e t a l . , 1982). The p r o f e s s i o n a l who r e c o g n i z e s the p o t e n t i a l f o r d i s r u p t i o n t h a t a c h r o n i c i l l n e s s can produce can do much t o m i n i m i z e the d e s t r u c t i v e e f f e c t s and t o a i d i n t h e r e i n t e g r a t i o n and a d a p t i o n o f the p e r s o n ( S t e i n h a u e r e t a l . , 1982) . P e o p l e may need honest and r e p e a t e d e x p l a n a t i o n s o f t h e i r d i a g n o s i s , p r o g r e s s , and p r o g n o s i s , and t ime t o d i g e s t t h i s i n f o r m a t i o n . I t may prove h e l p f u l f o r p r o f e s s i o n a l s t o be s i m p l e and d i r e c t , a v o i d i n g unwarranted opt imism o r e x c e s s i v e pes s imi sm. T i m i n g may a l s o be i m p o r t a n t . Ongoing c o n t a c t w i t h the person a l l o w s v a r i o u s p r o f e s s i o n a l s t o e x p l o r e the p e r s o n ' s u n d e r s t a n d i n g o f the i l l n e s s and h e l p d e a l w i t h emot iona l r e a c t i o n s t o i t . By a s k i n g how the p e r s o n sees her or h i m s e l f and t h e i l l n e s s , t h e p e r s o n can be encouraged t o r a i s e c o n c e r n s . Those p e o p l e who u n d e r s t a n d and can p e r c e i v e a c c u r a t e l y the n a t u r e o f the d i s e a s e , i t s symptoms and p r o g n o s i s , and who can d i s c u s s t h e s e d i r e c t l y w i l l g r e a t l y sa f eguard t h e i r a d j u s t m e n t . An i n c r e a s i n g number o f a u t h o r s suppor t d i s c u s s i o n o f even t h e most p a i n f u l f e e l i n g s r e l a t e d t o i l l n e s s ( G e i s t , 1979) . One s t u d y i n v o l v i n g peop le w i t h cancer showed t h a t t h o s e who t a l k e d most about t h e i r i l l n e s s were the ones who were l e a s t d e p r e s s e d ( G e i s t , 1979). What i s open ly acknowledged i s g e n e r a l l y l e s s t h r e a t e n i n g than t h a t which i s known but not d i s c u s s e d ( S t e i n h a u e r e t a l . , 1982). Some p e o p l e may need a c t i v e encouragement t o express f e e l i n g s t h a t have been h e l d i n but a r e t e a r i n g them a p a r t . Throughout h o s p i t a l i z a t i o n , the p e r s o n s h o u l d be . encouraged t o keep i n c o n t a c t w i t h f r i e n d s , e i t h e r t h r o u g h v i s i t s o r by m a i l . Embarrassment or shame because o f t h e i l l n e s s may c o n t r i b u t e t o an a l i e n a t i o n from p e e r s who, g i v e n p r o p e r encouragement, c o u l d be a major s o u r c e o f s u p p o r t f o r the p e r s o n (S te inhauer e t a l . , 1982) . A l i e n a t i o n from o t h e r s can s low the a b i l i t y o f t h a t p e r s o n t o a d j u s t e m o t i o n a l l y t o t h e i r i l l n e s s s i t u a t i o n . In making i m p o r t a n t d e c i s i o n s , some p e o p l e need h e l p t o r e c o g n i z e and weigh the f a c t s o f the s i t u a t i o n , and r e a s s u r a n c e and encouragement once a d e c i s i o n has been made ( S t e i n h a u e r e t a l . , 1982). A c o u n s e l l o r can be e x t r e m e l y h e l p f u l t o the p e r s o n (S te inhauer e t a l . , 1982) . I f a p e r s o n must c o n t i n u e w i t h s t e r o i d t h e r a p y and p s y c h o l o g i c a l d i s t r e s s i s a prob lem, i t may be n e c e s s a r y t o seek p r o f e s s i o n a l c o u n s e l l i n g . In c i r c u m s t a n c e s i n v o l v i n g s u r g e r y i t i s i m p o r t a n t t o t r y and f i n d a b a l a n c e between not a l a r m i n g the p e r s o n u n d u l y and y e t s t i l l o f f e r i n g some p s y c h o l o g i c a l p r e p a r a t i o n . Support and encouragement s h o u l d be o f f e r e d t o p e o p l e , i f p o s s i b l e . The p s y c h o l o g i c a l p r e p a r a t i o n f o r s u r g e r y s h o u l d b e g i n w e l l ahead of the event i n o r d e r t o b e t t e r cope . The term c o p i n g has o f t e n been used t o d e s c r i b e t h e p r o c e s s e s by which peop le attempt t o a d j u s t t o s t r e s s . C o p i n g i s seen as h a v i n g two main components, i n t r a p s y c h i c mechanisms, and b e h a v i o u r (Ray, L i n d o p , & G i b s o n , 1982) . More c u r r e n t t h e o r i e s o f s t r e s s and c o p i n g d e s c r i b e c o p i n g b e h a v i o u r as g o a l d i r e c t e d and r e s p o n s i v e t o s t r e s s . C o p i n g i s presumably e l i c i t e d when the i n d i v i d u a l c o g n i t i v e l y a p p r a i s e s a s i t u a t i o n as p o s i n g t h r e a t , harm, l o s s o r c h a l l e n g e . A p p r o p r i a t e l y s e l e c t e d c o p i n g s t r a t e g i e s may h e l p t o b u f f e r the i n d i v i d u a l under s t r e s s from e m o t i o n a l breakdown o r maladjustment ( F e l t o n , Revenson, & H i n r i c h s e n , 1987) . L a z a r u s (1981) proposes t h a t the p a r t i c u l a r k i n d s o f c o p i n g b e h a v i o u r s which peop le use a r e de termined by b o t h p e r s o n a l c h a r a c t e r i s t i c s and those o f t h e i r s o c i a l e n v i r o n m e n t , and, most i m p o r t a n t l y , by the n a t u r e o f the s t r e s s w i t h which they a r e d e a l i n g and which t h e y have d e a l t w i t h i n the p a s t . H e a l t h - r e l a t e d s t r e s s o r s , p a r t i c u l a r l y t h o s e seen as r e q u i r i n g acceptance ( i . e . , c h r o n i c i l l n e s s e s ) , were found by L a z a r u s t o have a s i g n i f i c a n t l y h i g h e r l i k e l i h o o d t o prompt emot ion - focused c o p i n g ( i . e . s t r a t e g i e s d i r e c t e d a t r e d u c i n g the e m o t i o n a l d i s t r e s s prompted by the p r o b l e m a t i c s i t u a t i o n ) , r a t h e r t h a n s t r a t e g i e s d i r e c t e d a t a l t e r i n g the source o f the s t r e s s i t s e l f . Depending on the d e f i n i t i o n o f c o p i n g used and on t h e n a t u r e o f t h e i l l n e s s s t u d i e d , r e s e a r c h has found t y p i c a l c o p i n g s t r a t e g i e s o f i n d i v i d u a l s s u f f e r i n g from c h r o n i c d i s e a s e t o i n c l u d e : d e n i a l , s e l e c t i v e i g n o r i n g , i n f o r m a t i o n s e e k i n g , t a k i n g re fuge i n a c t i v i t y , a v o i d a n c e , r e m i n i s c e n c e about former good t i m e s , l e a r n i n g s p e c i f i c i l l n e s s - r e l a t e d p r o c e d u r e s , b laming o t h e r s and s e e k i n g c o m f o r t from o t h e r s (Cohen & L a z a r u s , 1979; Weisman & Worden, 1976) . These s t u d i e s have p r o v i d e d v a l u a b l e d e s c r i p t i o n s o f the types o f c o p i n g s t r a t e g i e s employed by i n d i v i d u a l s when f a c e d w i t h i l l n e s s . A l t h o u g h contemporary deve lopmenta l p s y c h o l o g y has h i g h l i g h t e d the importance o f age as a dynamic i n t e r a c t i o n v a r i a b l e , d i f f e r e n c e s a t t r i b u t a b l e t o age w i t h r e g a r d s t o C r o h n ' s d i s e a s e and c o l i t i s have not been the t a r g e t o f r e s e a r c h . D u r i n g the l i f e span , a person i s f a c e d w i t h many d e v e l o p m e n t a l t a s k s and l i f e t r a n s i t i o n s . The change from h i g h s c h o o l i n t o p o s t - s e c o n d a r y e d u c a t i o n o r the work f o r c e i s one major l i f e t r a n s i t i o n . Young a d u l t s must l e a v e b e h i n d a d o l e s c e n t r o l e s and s t a t u s o f t e n a l o n g w i t h the p h y s i c a l , s o c i a l , and e m o t i o n a l suppor t o f home. In exchange, t h e y t a k e on new academic o r work p r e s s u r e s , p e r s o n a l r e s p o n s i b i l i t i e s , and s o c i a l networks ( A s t i n , 1968; Newcomb, 1964) as w e l l as r e l a t i o n s h i p s o f i n t i m a c y ( E r i k s o n , 1963) . B r o n f e n b r e n n e r (1979) viewed the t r a n s i t i o n s d u r i n g development as i n v o l v i n g the a d a p t i o n t o p r o g r e s s i v e l y b r o a d e n i n g spheres o f i n f l u e n c e . The i n d i v i d u a l b r i n g s h e r o r h i s own s t r e n g t h and s t y l e t o each t r a n s i t i o n and t h u s i n d i v i d u a l i t y has an a c t i v e impact on the n a t u r e o f the adjus tment t h a t i s made. I n d i v i d u a l s a c t i v e l y media te s t r e s s t o a c h i e v e t h e i r own a d a p t i o n . The f a c t o r o f c o n c e r n i n t h e p r e s e n t r e s e a r c h was t h a t o f young a d u l t s ' l i f e e x p e r i e n c e s a d a p t i n g t o a c h r o n i c i l l n e s s . The p r e s e n t r e s e a r c h was concerned w i t h these young a d u l t e x p e r i e n c e s . Young a d u l t h o o d i s an e s p e c i a l l y i n t e r e s t i n g and p o t e n t i a l l y s i g n i f i c a n t p e r i o d o f development f o r t h e i n v e s t i g a t i o n o f l i f e e x p e r i e n c e s w i t h a c h r o n i c i l l n e s s . Young a d u l t h o o d i n v o l v e s a number o f t r a n s i t i o n s , i n c l u d i n g those from h i g h s c h o o l t o c o l l e g e , u n i v e r s i t y , o r work, and from l i v i n g w i t h p a r e n t s t o l i v i n g i n d e p e n d e n t l y (Compas, D a v i s , and F o r s y t h , 1985) . Young a d u l t h o o d i s f r e q u e n t l y d e s c r i b e d as a p e r i o d o f development d u r i n g which d r a m a t i c l i f e changes and t r a n s i t i o n s o c c u r . A c h r o n i c i l l n e s s may make demands t h a t exceed a young a d u l t ' s r e s o u r c e s . Hav ing t o d e a l w i t h a c h r o n i c i l l n e s s may by f a r exceed the bounds o f a normal c o u r s e o f l i f e - i t may be a f a c t o r which imposes upon an i n d i v i d u a l , demands which are p e r c e i v e d as overwhelming . ( B e n - S i r a , 1982) . The p o t e n t i a l l y damaging c h a r a c t e r i s t i c s o f c h r o n i c i l l n e s s - and p a r t i c u l a r l y the u n c e r t a i n t y o f i t s p r o g n o s i s , namely , t h e c o n t i n u a l l y accompanying h a z a r d o f t h e u n p r e d i c t a b l e development o f more o c c u r r e n c e s impose new demands upon the c h r o n i c a l l y i l l p e r s o n . The i n d i v i d u a l has t o cope w i t h burdens , which are o f t e n accompanied by s t i g m a and t h e c o n t i n u i n g f e a r o f f u r t h e r e p i s o d e s . These burdens have t h e c a p a c i t y o f d e p r i v i n g i n d i v i d u a l s o f some o f t h e c o n t r o l over t h e i r l i v e s ( B e n - S i r a , 1982). The impact o f c h r o n i c i l l n e s s on p s y c h o l o g i c a l adjustment can be p r o f o u n d ( F e l t o n e t a l . , 1987). The v a l u e o f the proposed s tudy i s i n l e a r n i n g t o u n d e r s t a n d the e x p e r i e n c e o f young a d u l t s c o p i n g w i t h c h r o n i c i l l n e s s . With 2,000 new cases b e i n g d i a g n o s e d each y e a r , i t i s q u i t e p r o b a b l e t h a t p r o f e s s i o n a l s w i t h i n t h e h e a l t h f i e l d and r e l a t e d o c c u p a t i o n s w i l l come a c r o s s an i n d i v i d u a l a t t e m p t i n g t o l i v e w i t h one o f these c h r o n i c i l l n e s s e s . To unders t and how. one can be more h e l p f u l i n a i d i n g i n d i v i d u a l s w i t h a c h r o n i c i l l n e s s , h e a l t h p r o f e s s i o n a l s need t o f i r s t unders tand how p e o p l e e x p e r i e n c e t h e i r l i v e s i n r e l a t i o n t o t h e i r d i s e a s e . Q u a l i t a t i v e methods were the d e s i g n o f c h o i c e f o r t h i s r e s e a r c h . I f we are t o suppor t and h e l p young a d u l t s ' i n t h e i r e f f o r t s t o d e a l w i t h c h r o n i c i l l n e s s , t h e n t h e r e i s a need t o u n d e r s t a n d more f u l l y the u n f o l d i n g e f f e c t s o f i l l n e s s . However, l o o k i n g a t c h r o n i c i l l n e s s i n a vacuum may r e s u l t i n i r r e l e v a n t f i n d i n g s . The purpose o f t h i s s tudy was t o u n d e r s t a n d more f u l l y t h e e x p e r i e n c e s i d e n t i f i e d by young a d u l t s d e a l i n g w i t h a c h r o n i c i l l n e s s , t o uncover more o f the p r o c e s s e s i n l i v i n g w i t h an i l l n e s s as m e a n i n g f u l l y e x p e r i e n c e d by them. To a c h i e v e t h e s e p u r p o s e s , q u a l i t a t i v e methodology and p r o c e d u r e s were chosen f o r t h i s s t u d y . Q u a l i t a t i v e m e t h o d o l o g i e s a r e i n d i s p e n s a b l e when a t t e m p t i n g t o u n d e r s t a n d a p e r s o n ' s w o r l d - meanings, f e e l i n g s , m o t i v a t i o n s - which must be brought f o r t h t h r o u g h t h e p a r t i c i p a n t ' s s u b j e c t i v e p o i n t o f view (Schwartz & J a c o b s , 1979) . To u n d e r s t a n d the e x p e r i e n c e o f a young a d u l t l i v i n g l i f e w i t h a c h r o n i c i l l n e s s , i t i s e s p e c i a l l y n e c e s s a r y t o e x p l o r e t h e i r r e a l i t y . Such e x p l o r a t i o n r e q u i r e s a s p e c i f i c k i n d o f q u a l i t a t i v e r e s e a r c h methodology: the p h e n o m e n o l o g i c a l i n q u i r y . T h i s k i n d o f e x a m i n a t i o n l e a d s t o an u n d e r s t a n d i n g o f an i n d i v i d u a l ' s e x p e r i e n c e s . My r a t i o n a l e f o r c h o o s i n g phenomenology as the a p p r o a c h f o r my i n q u i r y was i t s a p p r o p r i a t e n e s s t o address my r e s e a r c h q u e s t i o n . M e r l e a u - P o n t y ' s (1956) d e f i n i t i o n o f phenomenology as t h e s t u d y o f e s sences , and my c o r e i s s u e , t o u n d e r s t a n d t h e e lements o f a p a r t i c u l a r r e a l - l i f e e x p e r i e n c e , a r e i n a c c o r d w i t h one a n o t h e r . O u t l i n e o f s tudy T h i s s tudy chose a phenomenolog ica l method t o e x p l o r e l i v e d - e x p e r i e n c e s o f young a d u l t s d e a l i n g w i t h C r o h n ' s d i s e a s e and c o l i t i s . My p r e s e n t a t i o n o f the i n f o r m a t i o n from t h i s i n q u i r y i s i n the form o f d e s c r i p t i o n s o f the u n d e r l y i n g themes of the e x p e r i e n c e . To t h i s end I f o r m u l a t e d one c o r e r e s e a r c h q u e s t i o n . T h i s q u e s t i o n , "What i s the e x p e r i e n c e o f l i v i n g w i t h C r o h n ' s d i s e a s e o r c o l i t i s ? " , was d e s i g n e d t o e l i c i t a body of t r a n s c r i b e d i n t e r v i e w s and w r i t t e n n a r r a t i v e s from young a d u l t s from which I c o u l d s y s t e m a t i c a l l y uncover the b a s i c themes o f the phenomenon. In C h a p t e r I I , a d e s c r i p t i o n o f the n a t u r e o f t h i s s t u d y i s p r e s e n t e d , i n c l u d i n g r e f e r e n c e s t o l i t e r a t u r e c o n c e r n i n g the methodology s e l e c t e d , some h i s t o r y r e g a r d i n g t h e c o n c e p t i o n o f t h i s s tudy and the p r o c e d u r e s u t i l i z e d t o comple te the r e s e a r c h . Summaries o f each i n d i v i d u a l p a r t i c i p a n t ' s l i v e d - e x p e r i e n c e , r e f e r r e d t o as " s i t u a t e d s t r u c t u r e s " ( K a r l s s o n , 1993), are p r e s e n t e d as C h a p t e r I I I . These summaries , w h i l e shor tened from the o r i g i n a l t r a n s c r i b e d i n t e r v i e w s and w r i t t e n n a r r a t i v e s , r e m a i n , i n l a r g e p a r t , v e r b a t i m a c c o u n t s . Chapter IV c o n t a i n s the common u n d e r l y i n g themes d e l i n e a t e d from a l l the p a r t i c i p a n t ' s t r a n s c r i b e d i n t e r v i e w s and w r i t t e n n a r r a t i v e s t h a t d e s c r i b e the e x p e r i e n c e s o f l i v i n g w i t h C r o h n ' s d i s e a s e o r c o l i t i s . These themes are r e f e r r e d t o as the " g e n e r a l s t r u c t u r e " ( K a r l s s o n , 1993). F i n a l l y , i n C h a p t e r V , a d i s c u s s i o n o f the themes i s p r e s e n t e d . R e l e v a n t l i t e r a t u r e i s i n c o r p o r a t e d i n t h i s d i s c u s s i o n . Ways t h a t c o u n s e l l o r s may c o n t r i b u t e t o the e m o t i o n a l h e a l t h o f young a d u l t s w i t h C r o h n ' s d i s e a s e o r c o l i t i s i s a l s o o f f e r e d . CHAPTER TWO Research Methods In t h i s c h a p t e r , a d e s c r i p t i o n o f the n a t u r e o f t h i s s t u d y i s g i v e n . A l o n g w i t h t h i s d e s c r i p t i o n , r e f e r e n c e s t o w r i t i n g s connec ted w i t h the methodology chosen w i l l be s u p p l i e d . Some accounts o f the f o r m a t i o n o f t h i s i n v e s t i g a t i o n , the l i m i t a t i o n s o f the method, my own p r e s u p p o s i t i o n s p r i o r t o the r e s e a r c h , a 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 , and the p r o c e d u r e s used t o complete t h e s t u d y w i l l be p r e s e n t e d . I n c l u d e d i n the p r e s e n t a t i o n o f t h e p r o c e d u r e s w i l l be a d e s c r i p t i o n o f the way t h e w r i t t e n n a r r a t i v e s and i n t e r v i e w s were used . P r o c e d u r e s used i n t h e d a t a a n a l y s i s and the c o n s t r u c t i o n o f the p r e s e n t a t i o n s o f i n d i v i d u a l p a r t i c i p a n t s ' e x p e r i e n c e s w i l l a l s o be e x p l a i n e d . Examples from the d a t a w i l l be p r o v i d e d i n o r d e r t o show the s t e p s i n v o l v e d i n the p a r t i c u l a r methodology u s e d . G e r h a r d t (1990) p o i n t s out t h a t as more p e o p l e a r e l i v i n g w i t h c h r o n i c i l l n e s s e s , i t becomes i n c r e a s i n g l y i m p o r t a n t t o u n d e r s t a n d the s o c i a l and p s y c h o l o g i c a l a s p e c t s o f c h r o n i c i l l n e s s . She suggests t h a t because the q u a l i t y o f l i f e o f p e o p l e w i t h c h r o n i c i l l n e s s e s i s v e r y c e n t r a l t o h e a l t h c a r e , p s y c h o s o c i a l r e s e a r c h i n the a r e a has grown i n i m p o r t a n c e . There has been i n c r e a s i n g r e c o g n i t i o n on t h e p a r t o f p h y s i c i a n s and o t h e r s i n v o l v e d i n the w e l f a r e o f i n d i v i d u a l s w i t h a c h r o n i c i l l n e s s , such as e p i l e p s y , t h a t t h e i l l n e s s may be l e s s d i s a b l i n g than t h e i r p s y c h o s o c i a l outcomes (Scambler & H o p k i n s , 1989). Some r e s e a r c h e r s ( e . g . A r m s t r o n g , 1990) note t h a t a q u a l i t a t i v e method i s n e c e s s a r y t o e x p l o r e the v e r y p e r s o n a l l i f e e x p e r i e n c e d outcomes o f l i v i n g w i t h a c h r o n i c i l l n e s s . I a l s o b e l i e v e t h a t q u a l i t a t i v e r e s e a r c h was b e s t s u i t e d f o r s t u d y i n g and u n d e r s t a n d i n g a p e r s o n ' s p e r c e p t i o n s o f t h e i r i l l n e s s . Q u a l i t a t i v e accounts o f i l l n e s s p r o v i d e i n c r e d i b l e d e p t h and i n s i g h t i n t o the e x p e r i e n c e of i l l n e s s not r e a d i l y a v a i l a b l e t h r o u g h o t h e r means (Murphy, 1987). F o r a r e s e a r c h e r t o s t u d y t h e e x p e r i e n c e o f c h r o n i c i l l n e s s , she o r he needs t o f o c u s on the e x p e r i e n c e o f peop le w i t h i l l n e s s . Study o f i l l n e s s must c o n s i d e r p e o p l e ' s everyday l i v e s l i v i n g w i t h and i n s p i t e o f i l l n e s s . A m e t h o d o l o g i c a l a n a l y s i s u n d e r t a k e n by Shontz (1982) showed t h a t improvement i n knowledge, g a i n e d from r e s e a r c h , r e q u i r e s i n v e s t i g a t o r s t o be more c a r e f u l about c o n s i d e r i n g and i n c l u d i n g the e x p e r i e n c e s o f c h r o n i c a l l y i l l p a r t i c i p a n t s . The l a c k o f t h i s t y p e o f c o n s i d e r a t i o n i s one o f the p r i m a r y r e a s o n s why so l i t t l e knowledge g a i n e d from r e s e a r c h i n p s y c h o l o g y i s d i r e c t l y a p p l i c a b l e i n c o u n s e l l i n g p r a c t i c e (Shontz , 1982) . One way t h a t may h e l p t o improve r e s e a r c h i s t o i n c l u d e t h e c h r o n i c a l l y i l l p a r t i c i p a n t s i n the i n v e s t i g a t i v e p r o c e s s wherever p o s s i b l e . A way to do t h i s i s t o t r e a t such p e r s o n s not as s u b j e c t s but as e q u a l p a r t i c i p a n t s i n t h e r e s e a r c h e n t e r p r i s e or as c o n s u l t a n t s who a r e e x p e r t s r e g a r d i n g t h e i r own c o n d i t i o n s and e x p e r i e n c e s (Shontz , 1982) . I n q u i r y t h a t i n v o l v e s a mutual c o o p e r a t i v e r e l a t i o n s h i p between r e s e a r c h e r and p a r t i c i p a n t i s t h e p r e f e r r e d method o f s t u d y . Based on the b e l i e f t h a t r e s e a r c h i n v o l v i n g a m u t u a l l y c o o p e r a t i v e r e l a t i o n s h i p would be i m p o r t a n t f o r t h i s s t u d y , p a r t i c i p a n t s were seen as e q u a l s i n t h e i n v e s t i g a t i o n and as a u t h o r i t i e s on t h e i r l i f e e x p e r i e n c e s . The p a r t i c i p a n t s were i n c l u d e d i n t h e r e s e a r c h as much as p o s s i b l e . A thorough e x p l a n a t i o n o f the n a t u r e o f the s t u d y was p r o v i d e d as an o r i e n t a t i o n t o the r e s e a r c h . The d e c i s i o n t o make t h i s i n - d e p t h d e s c r i p t i o n o f t h e p r o p o s e d s t u d y was based on my view t h a t i n c o l l a b o r a t i v e i n q u i r y , p a r t i c i p a n t s need t o be aware o f the r e s e a r c h e r ' s t h i n k i n g . None o f the r e s e a r c h agenda was kept h i d d e n from t h e p a r t i c i p a n t . In t h i s l i n e o f r e s e a r c h t h a t d e a l s w i t h an 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 c h r o n i c i l l n e s s , my view i s c o n s i s t e n t w i t h the p e r s p e c t i v e taken w i t h i n phenomenology t h a t i t i s i m p o r t a n t t h a t I saw my p a r t i c i p a n t s as p a r t n e r s as opposed t o p a t i e n t s ( p a s s i v e r e c i p i e n t s o f c a r e ) . T h i s v iew i s i m p o r t a n t because peop le who are s i c k spend o n l y a f r a c t i o n o f t ime i n t h e i r p a t i e n t r o l e . W h i l e b e i n g a p a t i e n t may be an i m p o r t a n t a spec t o f b e i n g i l l , i t i s by no means t h e o n l y one nor n e c e s s a r i l y the most i m p o r t a n t . One needs t o s t u d y how peop le manage t h e i r i l l n e s s i n t h e i r everyday l i v e s . The i n t e n t o f t h i s s tudy o f c h r o n i c i l l n e s s was t o t r a n s c r i b e i n t e r v i e w s and w r i t t e n n a r r a t i v e s o f young a d u l t s w i t h C r o h n ' s d i s e a s e or c o l i t i s , and t h e n a n a l y z e them, i n o r d e r t o unders tand t h e i r e x p e r i e n c e . The p r i m a r y aim of phenomenolog ica l i n q u i r y i s i l l u m i n a t i o n and u n d e r s t a n d i n g (Sande lowsk i , 1986) . The v a l u e o f a phenomenolog ica l i n v e s t i g a t i o n l i e s i n t h e d i s c o v e r y o f human e x p e r i e n c e s as they are l i v e d and p e r c e i v e d by p a r t i c i p a n t s , r a t h e r than i n s u p p o r t i n g p r e c o n c e i v e d i d e a s r e g a r d i n g those e x p e r i e n c e s . The v a l u e o f t h i s r e s e a r c h method i s p a r t i c i p a n t - o r i e n t e d r a t h e r t h a n r e s e a r c h e r - d e f i n e d (Sande lowski , 1986). Such methodology i s u s e f u l i n p r o v i d i n g i n f o r m a t i o n w i t h r e s p e c t t o phenomena about which l i t t l e i s r e a l l y known ( P o l k i n g h o r n e , 1983; S a n d e l o w s k i , 1986). Phenomeno log ica l r e s e a r c h emphasizes the i n d i v i d u a l and s u b j e c t i v e e x p e r i e n c e . Phenomenology s t u d i e s what t h e e x p e r i e n c e o f b e i n g i n one ' s l i f e i s l i k e (Tesch , 1990) . I t i s t h e s y s t e m a t i c i n v e s t i g a t i o n o f s u b j e c t i v i t y ( B u l l i n g t o n & K a r l s o n , 1984) . The aim of phenomenology i s t o s t u d y t h e w o r l d as i t appears t o the p a r t i c i p a n t s (Tesch , 1990) . The v a l u e o f a phenomenolog ica l s tudy i s measured i n terms o f i t s power t o l e t us come t o an u n d e r s t a n d i n g 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 (Langeve ld , 1983) . P h e n o m e n o l o g i c a l r e s e a r c h i l l u m i n a t e s human e x p e r i e n c e s by d e s c r i b i n g t h e essence o f t h e s u b j e c t i v e e x p e r i e n c e (Tesch , 1990) . A c c o r d i n g t o van Manen (1984), the method of phenomenology can be r e d u c e d t o f o u r key i n t e r r e l a t e d p r o c e d u r e s : 1) t u r n i n g t o a phenomenon which s e r i o u s l y i n t e r e s t s u s ; 2) i n v e s t i g a t i n g e x p e r i e n c e ; 3) r e f l e c t i n g on themes which c h a r a c t e r i z e the phenomenon; and 4) d e s c r i b i n g the phenomenon t h rou gh the a r t o f w r i t i n g and r e w r i t i n g , (p. 18) L i m i t a t i o n s and E v a l u a t i o n o f the Method The l i m i t a t i o n s o f q u a l i t a t i v e d e s i g n need t o be c o n s i d e r e d when l o o k i n g a t t h i s s t u d y . The e x t e r n a l v a l i d i t y o f q u a l i t a t i v e r e s e a r c h , t h a t i s , the degree t o which t h e f i n d i n g s can be g e n e r a l i z e d t o the p o p u l a t i o n from which the p a r t i c i p a n t s were drawn, may be c o n s i d e r e d a l i m i t a t i o n . Q u a l i t a t i v e r e s e a r c h depends on human p a r t i c i p a n t s w i t h c l e a r s t o r i e s t o t e l l , but the v a l i d i t y o f i t s f i n d i n g s can be t h r e a t e n e d by o v e r g e n e r a l i z i n g those s t o r i e s o r not p l a c i n g them i n t h e i r p r o p e r p e r s p e c t i v e . Guba and L i n c o l n (1981) sugges t t h a t f i t t i n g n e s s be the c r i t e r i o n a g a i n s t which the a p p l i c a b i l i t y or t r a n s f e r a b i l i t y o f a q u a l i t a t i v e r e s e a r c h p r o j e c t be e v a l u a t e d . T r a n s f e r a b i l i t y may be thought o f as p a r a l l e l t o e x t e r n a l v a l i d i t y o r g e n e r a l i z a b i l i t y . A s tudy meets the c r i t e r i o n o f f i t t i n g n e s s o r t r a n s f e r a b i l i t y when i t s f i n d i n g s can adapt t o c o n t e x t s o u t s i d e t h e s tudy s i t u a t i o n and when i t s aud ience v iews i t s f i n d i n g s as m e a n i n g f u l i n terms of t h e i r own e x p e r i e n c e s (Guba & L i n c o l n , 1989) . In a d d i t i o n , i t i s i m p o r t a n t t h a t t h e f i n d i n g s o f the s tudy " f i t " the d a t a from which t h e y a r e d e r i v e d (Sande lowsk i , 1986). One of the major c r i t e r i a f o r e s t a b l i s h i n g the degree o f t r a n s f e r a b i l i t y o r " f i t " i n v o l v e s t h e p r e s e n c e o f t h i c k d e s c r i p t i o n . What the r e s e a r c h e r does i s t o s u p p l y comprehensive da ta i n o r d e r t o f a c i l i t a t e t r a n s f e r a b i l i t y judgements on the p a r t o f o t h e r s who may want t o a p p l y the s tudy t o t h e i r own s i t u a t i o n s , o r s i t u a t i o n s i n which they have an i n t e r e s t (Guba & L i n c o l n , 1989) . The v a l u e o f t h i s q u a l i t a t i v e r e s e a r c h r e s i d e d i n t h e d i s c o v e r y o f human phenomena or e x p e r i e n c e s as they were l i v e d and p e r c e i v e d by the p a r t i c i p a n t s . T h e r e f o r e t h e v a l u e i s p a r t i c i p a n t - o r i e n t e d r a t h e r than r e s e a r c h e r d e f i n e d . Guba and L i n c o l n (1981) suggest t h a t c r e d i b i l i t y be the c r i t e r i a a g a i n s t which the v a l u e o f q u a l i t a t i v e r e s e a r c h be e v a l u a t e d . A q u a l i t a t i v e s tudy i s c r e d i b l e when i t p r e s e n t s d e s c r i p t i o n s o f a l i v e d e x p e r i e n c e t h a t the p e o p l e h a v i n g t h e e x p e r i e n c e would immediate ly r e c o g n i z e as t h e i r own. A s t u d y i s a l s o c r e d i b l e when o t h e r peop le (o ther r e s e a r c h e r s o r r e a d e r s ) can r e c o g n i z e the e x p e r i e n c e when they e n c o u n t e r i t a f t e r h a v i n g o n l y r e a d about i t i n a s tudy ( P s a t h a s , 1973) . The r e t r o s p e c t i v e approach predominates i n t h i s i n v e s t i g a t i o n o f C r o h n ' s d i s e a s e and c o l i t i s . T h i s a p p r o a c h r e l i e d on i n t e r v i e w s and w r i t t e n n a r r a t i v e s . How a c c u r a t e l y p e o p l e remember the p a s t event and i t s r e l a t i v e s i g n i f i c a n c e t o them a t the t ime i t o c c u r r e d may be c o n s i d e r e d a l i m i t a t i o n ( J e n k i n s , H u r s t , & Rose , 1979) . A n o t h e r l i m i t a t i o n stems from the n a t u r e o f the i n t e r v i e w p r o c e s s . The f l e x i b i l i t y , a d a p t a b i l i t y , and c l o s e human i n t e r a c t i o n acknowledge s u b j e c t i v i t y and p o s s i b l e b i a s . T h i s q u a l i t a t i v e r e s e a r c h emphasized the m e a n i n g f u l n e s s o f f i n d i n g s a c h i e v e d by r e d u c i n g the d i s t a n c e between i n v e s t i g a t o r and p a r t i c i p a n t . The i n t e r v i e w was r e g a r d e d as a way o f g i v i n g the s u b j e c t i v e s i t u a t i o n g r e a t e r c l a r i t y . I n t e r v i e w i n g was used as a s t r a t e g y f o r documenting a c c o u n t s o f l i v e d e x p e r i e n c e s . Oakley (1981) sugges ts t h a t t h e f o r m u l a t i o n o f the i n t e r v i e w e r ' s j o b i s more u s e f u l when i t becomes a d a t a - c o l l e c t i n g i n s t r u m e n t f o r those whose l i v e s a r e b e i n g r e s e a r c h e d r a t h e r then a d a t a - c o l l e c t i n g i n s t r u m e n t f o r r e s e a r c h e r s . Such a r e f o r m u l a t i o n i s enhanced where t h e i n t e r v i e w e r a l l o w s f o r c l o s e human i n t e r a c t i o n ( O a k l e y , 1981) . Dexter (1956) looked a t the p r e t e n s e o f n e u t r a l i t y on t h e i n t e r v i e w e r ' s p a r t and found i t t o be c o u n t e r p r o d u c t i v e and f e l t t h a t p a r t i c i p a t i o n r e q u i r e s a l l i a n c e . S e l l t i z , Yahoo, D e u t s c h , and Cook (1965) suggest t h a t much o f what we c a l l i n t e r v i e w e r b i a s can more a c c u r a t e l y be d e s c r i b e d as i n t e r v i e w e r d i f f e r e n c e s , which are i n h e r e n t i n the f a c t t h a t i n t e r v i e w e r s a r e human be ings c r e a t i n g some form o f p e r s o n a l c o n n e c t i o n w i t h p a r t i c i p a n t s , and not machines t h a t work i d e n t i c a l l y . Oakley (1981) proposes t h a t p e r s o n a l c o n n e c t i o n i s more t h a n i n t e r v i e w e r b i a s - i t i s the c o n d i t i o n under which p e o p l e come t o know each o t h e r and t o admit o t h e r s i n t o t h e i r l i v e s and i s fundamental i n c r e a t i n g m e a n i n g f u l r e s e a r c h . Guba and L i n c o l n (1981) suggest t h a t c o n f i r m a b i l i t y be one t h e c r i t e r i a f o r meaningfu lness o f f i n d i n g s i n q u a l i t a t i v e r e s e a r c h . C o n f i r m a b i l i t y i s a c h i e v e d when v a l u e and a p p l i c a b i l i t y i s e s t a b l i s h e d (Sande lowski , 1986) . A s p e c i f i c s t r a t e g y used f o r e n s u r i n g the v a l u e and a p p l i c a b i l i t y , as w e l l as the f i t t i n g n e s s or t r a n s f e r a b i l i t y , and c r e d i b i l i t y o f t h i s q u a l i t a t i v e s t u d y was t h a t o f u s i n g two d i f f e r e n t da ta c o l l e c t i o n p r o c e d u r e s t o d e t e r m i n e the congruence o f the f i n d i n g s . One s t r o n g recommendation made more and more o f t e n i n s t u d i e s , whether q u a n t i t a t i v e or q u a l i t a t i v e , i s t h a t more t h a n one way of g a t h e r i n g d a t a be used whenever p o s s i b l e (Gorden, 1980). T h i s use o f more than one i n f o r m a t i o n g a t h e r i n g t e c h n i q u e , t o c r o s s - c h e c k or supplement t h e o t h e r , i s o f t e n r e f e r r e d t o as t r i a n g u l a t i o n . L a t h e r (1986) s t a t e s t h a t t r i a n g u l a t i o n i s c r i t i c a l i n e s t a b l i s h i n g d a t a c r e d i b i l i t y . Wi th the b e l i e f t h a t t r i a n g u l a t i o n i s e s s e n t i a l i f d a t a a r e t o be deemed c r e d i b l e , t h i s s tudy employed i n t e r v i e w s , and w r i t t e n n a r r a t i v e s , a u t h o r e d by t h e young i a d u l t s , as two d i f f e r e n t i n f o r m a t i o n g a t h e r i n g t e c h n i q u e s . The t r a n s c r i p t i o n s o f i n t e r v i e w s and w r i t t e n n a r r a t i v e s were i n i t i a l l y a n a l y z e d s e p a r a t e l y . The b e g i n n i n g s tage i n v o l v e d r e a d i n g them u n t i l I had a s a t i s f a c t o r y comprehens ion i n o r d e r t o p r o c e e d w i t h the next l e v e l o f the a n a l y s i s . The a n a l y s i s c o n t i n u e d by d i v i d i n g the i n t e r v i e w p r o t o c o l and w r i t t e n n a r r a t i v e i n t o s m a l l e r u n i t s . A t t h i s p o i n t t h e y were s t i l l t r e a t e d as s e p a r a t e d a t a . Each u n i t was t h e n a n a l y z e d and t r a n s f o r m e d i n r e l a t i o n t o the e n t i r e i n t e r v i e w p r o t o c o l o r w r i t t e n n a r r a t i v e . I t was a f t e r t h i s p o i n t t h a t t h e y were c r o s s - c h e c k e d w i t h one another i n o r d e r t o e s t a b l i s h t h a t the r e p o r t s were r e l i a b l e . Once the i n t e r v i e w and w r i t t e n n a r r a t i v e d a t a were judged as dependable t h e y were combined. Guba and L i n c o l n (1981) propose t h a t a u d i t a b i l i t y be a n o t h e r one o f the c r i t e r i o n o f r i g o r or m e r i t f o r . q u a l i t a t i v e f i n d i n g s . A s tudy and i t s f i n d i n g s a r e a u d i t a b l e when a n o t h e r r e s e a r c h e r can c l e a r l y f o l l o w the p a t h used by the i n v e s t i g a t o r i n the s tudy (Sande lowski , 1986) . A u d i t a b i l i t y i s a c h i e v e d when the r e s e a r c h e r l e a v e s a c l e a r p a t h c o n c e r n i n g the s tudy from i t s b e g i n n i n g s t o i t s end . A u d i t a b i l i t y was s p e c i f i c a l l y a c h i e v e d i n t h i s s tudy by d e s c r i b i n g , e x p l a i n i n g , o r j u s t i f y i n g : 1) how the p a r t i c i p a n t s were i n c l u d e d i n the s tudy and how t h e y were a p p r o a c h e d , 2) how the d a t a were c o l l e c t e d , 3) t h e s e t t i n g i n which the d a t a were c o l l e c t e d , 4) how the d a t a were r e d u c e d o r t r a n s f o r m e d f o r a n a l y s i s , and p r e s e n t a t i o n , and 5) t h e s p e c i f i c t e c h n i q u e used t o determine the v a l u e and a p p l i c a b i l i t y o f the d a t a . D e s p i t e some p o s s i b l e l i m i t a t i o n s , I t h i n k t h a t the p r e s e n t s tudy may be c o n s i d e r e d as an impor tant c o n t r i b u t i o n t o the u n d e r s t a n d i n g o f t h e f a c t o r s t h a t a r e i n v o l v e d i n the l i f e e x p e r i e n c e s o f young a d u l t s w i t h C r o h n ' s d i s e a s e o r c o l i t i s . My Own Assumpt ions : P r e s u p p o s i t i o n s P r i o r t o the R e s e a r c h My own e x p e r i e n c e o f c h r o n i c i l l n e s s , i n r e t r o s p e c t and i n t h e p r e s e n t , seems t o have moved t h r o u g h s e v e r a l t u r n i n g p o i n t s , which u s u a l l y have i n c l u d e d some s h e d d i n g o f o l d f e e l i n g s , t h o u g h t s , and b e h a v i o u r s and a t a k i n g on o f d i f f e r e n t p e r c e p t i o n s . A v a r i e t y o f change, i n my l i f e , i n my r e l a t i o n s h i p s , and w i t h i n myse l f has been one o f my ongo ing e x p e r i e n c e s . These changes g e n e r a l l y c r e a t e d a new awareness o f l i f e . D u r i n g these changes , h a v i n g a t l e a s t one n u r t u r i n g r e l a t i o n s h i p has been c r u c i a l . D i s c o v e r i n g a sense o f i n t i m a c y has been c r i t i c a l , because I have a t t i m e s e x p e r i e n c e d f e e l i n g s o f a l i e n a t i o n due t o v a r i o u s a s p e c t s o f h a v i n g C r o h n ' s d i s e a s e . Each change caused w h o l l y o r i n p a r t by my c h r o n i c i l l n e s s b r i n g s new meaning t o l i f e t h r o u g h my own i n t e g r a t i o n o f the event and su p p or t and a f f i r m a t i o n by a s i g n i f i c a n t o t h e r . T h a t t h i s e x p e r i e n c e i s one t h a t young a d u l t s w i t h a c h r o n i c i l l n e s s l i v e through has been c o n f i r m e d t h r o u g h e n c o u n t e r i n g a growing number o f persons w i t h C r o h n ' s d i s e a s e and c o l i t i s who r e l a t e many of the same t y p e o f s t o r i e s . Meet ings w i t h these young a d u l t s have c o n s i s t e n t l y been e x p e r i e n c e s f o r me of g r e a t l e a r n i n g . W h i l e each s t o r y I l i s t e n e d t o was r i c h i n i t s un iquenes s , I wondered i f t h e r e might be a number o f common t h r e a d s t h a t would emerge c l e a r l y i f such s t o r i e s were e x p l o r e d i n a more s y s t e m a t i c way. One e x p e r i e n c e o f which I had become aware r e l a t e d t o a l o w e r i n g o f s e l f - e s t e e m . Some peop le w i t h C r o h n ' s d i s e a s e o r c o l i t i s , i n c l u d i n g m y s e l f , seemed t o e x p e r i e n c e d r a m a t i c s h i f t s i n f e e l i n g s about s e l f . I wondered i f a l o w e r i n g o f s e l f - e s t e e m was one o f the common e x p e r i e n c e s o f l i v i n g w i t h t h e s e i l l n e s s e s . The key assumpt ion u n d e r l y i n g my r e s e a r c h i s t h a t , r e g a r d l e s s o f the unique f a c t o r s t h a t shape t h e e x p e r i e n c e o f i n d i v i d u a l young a d u l t s w i t h a c h r o n i c i l l n e s s , some i n v a r i a n t themes w i l l u l t i m a t e l y c h a r a c t e r i z e t h e e s sence of the e x p e r i e n c e . I t i s t h i s assumption t h a t s e r v e s l a r g e l y as a f o u n d a t i o n f o r my commitment t o pursue a p h e n o m e n o l o g i c a l s t u d y o f young a d u l t s w i t h c h r o n i c i l l n e s s . P a r t i c i p a n t s P a r t i c i p a n t s were s e l e c t e d because they c o u l d i l l u m i n a t e the phenomenon b e i n g s t u d i e d . A v o l u n t e e r sample was made up o f 2 0 t o 2 5 - y e a r - o l d young a d u l t females and males who had been d iagnosed w i t h C r o h n ' s d i s e a s e o r c o l i t i s a t l e a s t s i x months p r i o r t o p a r t i c i p a t i o n i n the s t u d y . P a r t i c i p a n t s were a b l e t o converse and w r i t e i n E n g l i s h . A f i n a l sample s i z e o f t e n p a r t i c i p a n t s was d e t e r m i n e d by an i n t e r p l a y between theme s a t u r a t i o n (when no s i g n i f i c a n t l y new p a t t e r n s i n i n t e r v i e w r e s p o n s e s , and w r i t t e n n a r r a t i v e s emerged) , and the t ime t h a t was a v a i l a b l e t o r u n the s t u d y . I i n i t i a l l y p lanned t o s tudy the e x p e r i e n c e o f a d o l e s c e n t s , made up o f 17, 18, and 1 9 - y e a r - o l d s . However, I had d i f f i c u l t y i n o b t a i n i n g p a r t i c i p a n t s . I do not t h i n k t h i s was due t o a l e s s e r p r e v a l e n c e o f C r o h n ' s d i s e a s e o r c o l i t i s i n t h i s age group , but r a t h e r , t o the p o s s i b l e d i s c o m f o r t a d o l e s c e n t s may e x p e r i e n c e i n t a l k i n g about t h e i r i l l n e s s . P r o c e d u r e s P a r t i c i p a n t s were r e c r u i t e d through n o t i c e s p o s t e d i n s e v e r a l g a s t r o e n t e r o l o g y c l i n i c s throughout t h e lower m a i n l a n d (see Appendix A ) . The p a r t i c i p a n t s were t h e o n l y s o u r c e o f d a t a f o r my s tudy and were seen as p a r t n e r s i n the i n v e s t i g a t i v e p r o c e s s . Two d i f f e r e n t da ta c o l l e c t i o n t e c h n i q u e s were used , u n s t r u c t u r e d i n - d e p t h i n t e r v i e w s , and w r i t t e n n a r r a t i v e s . The r e c r u i t m e n t and assessment o f s u i t a b i l i t y o c c u r r e d f i r s t , over the phone, t h e n appo intments were a r r a n g e d . W r i t t e n n a r r a t i v e s . Be fore the i n t e r v i e w , p a r t i c i p a n t s were s en t a b o o k l e t o f b l a n k paper t o w r i t e a n a r r a t i v e i n v o l v i n g t h e i r e x p e r i e n c e r e g a r d i n g C r o h n ' s d i s e a s e o r c o l i t i s . The p a r t i c i p a n t was asked t o b r i n g the comple ted w r i t t e n n a r r a t i v e t o the i n t e r v i e w appo intment . I t d e a l t w i t h t h e i n d i v i d u a l ' s e x p e r i e n c e by f o c u s i n g on a w r i t t e n l i f e h i s t o r y . In t h i s a n a l y s i s w r i t t e n n a r r a t i v e s as l i f e s t o r i e s - a u t o b i o g r a p h i e s - o f young a d u l t s w i t h C r o h n ' s d i s e a s e o r c o l i t i s were c o n s i d e r e d as p u r p o s e l y c o n s t r u c t e d a c c o u n t s o f l i f e e x p e r i e n c e s a f f e c t e d by t h e i r i l l n e s s . N a r r a t i v e s a r e a c o n s t r u c t i o n o f an i n d i v i d u a l ' s s o c i a l w o r l d (Rafo th & R u b i n , 1988) . W r i t t e n n a r r a t i v e s can be d e f i n e d as w r i t i n g i n which words a r e s e q u e n t i a l l y o r g a n i z e d , as t h e summary o f e x p e r i e n c e s i n the o r d e r i n which they are b e l i e v e d t o have o c c u r r e d (Labov, 1972). W r i t i n g a n a r r a t i v e can s h i f t one ' s a t t i t u d e t o l i f e from t h e i r movement i n i t towards t h e i r r e f l e c t i o n on i t . To w r i t e a n a r r a t i v e i s t o u n f o l d one ' s l i f e (Young, 1987) . The s e q u e n t i a l and summary c h a r a c t e r o f n a r r a t i v e f o s t e r s a v iew o f l i f e as in formed by s i g n i f i c a n t i n c i d e n t s (Natanson, 1970) . R i c o e u r (198 0) suggested t h a t every n a r r a t i v e combines two d i m e n s i o n s i n v a r i o u s amounts, one c h r o n o l o g i c a l and t h e o t h e r n o n - c h r o n o l o g i c a l . The c h r o n o l o g i c a l c h a r a c t e r i z e s the s t o r y as made out o f e v e n t s . The n o n - c h r o n o l o g i c a l i s t h e c r e a t i o n o f p a t t e r n e d s i g n i f i c a n t wholes out o f s c a t t e r e d e v e n t s . A l e x a n d e r (1988) b e l i e v e s t h a t the r i c h e s t s o u r c e s o f d a t a a r e t h o s e which d e a l w i t h the r e c o l l e c t i o n from memory o f v a r i o u s a s p e c t s o f l i f e a l r e a d y l i v e d , as i n a w r i t t e n n a r r a t i v e . Peop le g e n e r a l l y f i n d i t e a s i e r and l e s s t h r e a t e n i n g t o d e s c r i b e r e c o l l e c t i o n s o f i n c i d e n t s and e v e n t s i n v o l v i n g the c r i t i c a l t imes i n t h e i r l i v e s t h a n t o r e s p o n d t o e v a l u a t i v e q u e s t i o n s c o n c e r n i n g t h o s e same e v e n t s . T h e r e f o r e , t o deve lop a deeper u n d e r s t a n d i n g o f a p a r t i c i p a n t ' s l i f e i t i s p r e f e r a b l e t o work from d a t a i n which t h e i n d i v i d u a l i s d e s c r i b i n g p e o p l e , p l a c e s , and i n c i d e n t s t h a t seem t o be the s i g n i f i c a n t memories o f t h a t e x p e r i e n c e . In t h i s s tudy I was p a r t i c u l a r l y i n t e r e s t e d i n t h e use o f w r i t t e n n a r r a t i v e as a means o f u n d e r s t a n d i n g how young a d u l t s make sense o f the i n f l u e n c e C r o h n ' s d i s e a s e o r c o l i t i s has had on t h e i r l i v e s by i n c o r p o r a t i n g i t as p a r t o f t h e l a r g e r s t o r y o f t h e i r l i v e s . I n f l u e n c e i m p l i e s a c o n n e c t i o n between p a s t events and p r e s e n t o r f u t u r e e v e n t s . I n t e r v i e w s . I n t e r v i e w i n g i s most v a l u a b l e when t h e main o b j e c t i v e i s t o unders tand a p e r s o n ' s b e l i e f s , a t t i t u d e s , v a l u e s , knowledge, or any o t h e r s u b j e c t i v e a s p e c t s o f an i n d i v i d u a l (Gorden, 1980) . There a r e s e v e r a l d i s t i n c t advantages to the i n t e r v i e w , some which have been o u t l i n e d by O r l i c h (1978): the r e s p o n d e n t ' s f e e l i n g s can be r e v e a l e d ; t h e respondent i s g i v e n an o p p o r t u n i t y f o r f r e e e x p r e s s i o n and; the respondent may express p e r s o n a l i n f o r m a t i o n , a t t i t u d e s , b e l i e f s , and p e r c e p t i o n s t h a t might no t have been o b t a i n e d by any o t h e r a d m i n i s t e r e d i n s t r u m e n t . The i n t e r v i e w s were conducted i n d i v i d u a l l y i n one o f t h e rooms o f the C o u n s e l l i n g Psycho logy Department a t the U n i v e r s i t y o f B r i t i s h C o l u m b i a . Be fore the a c t u a l i n t e r v i e w began, the s t u d y was d e s c r i b e d and v o l u n t e e r s were asked t o comple te a consent form (see Appendix D ) . Then they were asked t o complete a b r i e f demographic q u e s t i o n n a i r e which p r o v i d e d me w i t h d e s c r i p t i v e i n f o r m a t i o n about them (see Append ix E ) . Once the q u e s t i o n n a i r e was c o m p l e t e d , t h e i n t e r v i e w began. I s t a r t e d the i n t e r v i e w w i t h a g e n e r a l o r i e n t i n g s tatement (see Appendix C ) . R e s e a r c h i n t e r v i e w s s h o u l d b e g i n w i t h a c l e a r i n t r o d u c t i o n t o the p a r t i c i p a n t s ( T o l o r , 1985) . T h i s impor tant p r o c e s s p r o v i d e s i n f o r m a t i o n f o r r e s p o n d e n t s . A l t h o u g h t h i s t y p e o f i n t e r v i e w i s r e f e r r e d t o as u n s t r u c t u r e d , i t i s not meant t o be a c o m p l e t e l y unp lanned a c t i v i t y . The t o p i c o f r e s e a r c h t h a t i s b e i n g e x p l o r e d o r measured s h o u l d be as c l e a r l y d e f i n e d as p o s s i b l e whether a s t r u c t u r e d or u n s t r u c t u r e d approach t o i n t e r v i e w i n g i s b e i n g used . A f t e r the o r i e n t i n g statement the a c t u a l i n t e r v i e w began. I d i d not employ a d e t a i l e d i n t e r v i e w g u i d e but had a v e r y g e n e r a l p l a n . I asked an i n i t i a l open-ended q u e s t i o n i . e . , "To b e g i n , perhaps you c o u l d t e l l me a b i t about when you were d iagnosed as h a v i n g [ p a r t i c i p a n t s s p e c i f i c d i s e a s e ( i e . C r o h n ' s or c o l i t i s ) ] . " T h i s open-ended q u e s t i o n was i n t e n d e d p a r t i a l l y t o focus the p a r t i c i p a n t s t h o u g h t s toward g i v i n g d a t a t o meet t h e p r i m a r y o b j e c t i v e s o f t h e s t u d y , but I made sure I a l l o w e d them freedom o f e x p r e s s i o n . Open-ended q u e s t i o n s encouraged the r e s p o n d e n t s t o compose t h e i r own answers (see Appendix F) and a l l o w e d r e s p o n d e n t s t o speak f r e e l y and a t l e n g t h on the s u b j e c t s i n q u e s t i o n ( T o l o r , 1985) . They are v a l u a b l e t o u n d e r s t a n d i n g i s s u e s and t o p i c s . T h e r e f o r e , the substance and d i r e c t i o n o f i n t e r v i e w s v a r i e d w i t h the p a r t i c i p a n t ' s r e s p o n s e s . Body language s k i l l s such as eye c o n t a c t , nodding o f h e a d , and open p o s t u r e was used t o h e l p the ongoing development o f r a p p o r t . The i n t e r v i e w l a s t e d between one and two h o u r s , w i t h t h e t o t a l t ime o f a l l i n t e r v i e w s e q u a l l i n g 17.1 h o u r s . The i n t e r v i e w was a u d i o t a p e d . Phenomeno log ica l r e s e a r c h emphasizes the m e a n i n g f u l n e s s o f f i n d i n g s a c h i e v e d by r e d u c i n g the d i s t a n c e between i n v e s t i g a t o r and p a r t i c i p a n t and by e l i m i n a t i n g a r t i f i c i a l l i n e s between s u b j e c t i v e and o b j e c t i v e r e a l i t y (van Manen, 1984) . From the p e r s p e c t i v e o f phenomenolog ica l i n q u i r y , s c i e n t i f i c o b j e c t i v i t y i s i t s e l f a s o c i a l l y c o n s t r u c t e d phenomenon t h a t produces the i l l u s i o n o f o b j e c t i v i t y . No r u l e s can change the f a c t . t h a t t h e r e i s no way t o s t u d y a t h i n g w i t h o u t chang ing i t . However, a p o s s i b l e t h r e a t t o the v a l u e o f a phenomenolog ica l s tudy l i e s i n t h e i n v e s t i g a t o r - p a r t i c i p a n t r e l a t i o n s h i p (van Manen, 1984). The c r e d i b i l i t y o f p h e n o m e n o l o g i c a l r e s e a r c h i s enhanced when i n v e s t i g a t o r s d e s c r i b e and i n t e r p r e t t h e i r own b e h a v i o u r and e x p e r i e n c e s as r e s e a r c h e r s i n r e l a t i o n t o the b e h a v i o u r and e x p e r i e n c e s o f p a r t i c i p a n t s . The p o s s i b l e t h r e a t o f becoming so enmeshed w i t h p a r t i c i p a n t s t h a t i n v e s t i g a t o r s have d i f f i c u l t y s e p a r a t i n g t h e i r own e x p e r i e n c e s from t h e i r p a r t i c i p a n t s ' can be m o n i t o r e d by d e l i b e r a t e l y f o c u s i n g on how t h e r e s e a r c h e r i n f l u e n c e d and was i n f l u e n c e d by a p a r t i c i p a n t ( S a n d e l o w s k i , 1986). I m a i n t a i n e d a p r o c e s s - t y p e d i a r y t h r o u g h o u t the p r o j e c t . T h i s d i a r y c o n t a i n e d my n o t a t i o n s o f my ongo ing e f f o r t s t o i n t e r p r e t the d a t a . The p r o c e s s d i a r y d i d no t s p e c i f i c a l l y e n t e r i n t o the r e s u l t s but r a t h e r c o n t a i n e d my n o t a t i o n s d e s c r i b i n g my o b s e r v a t i o n s about my i n t e r a c t i o n s w i t h p a r t i c i p a n t s and d e c i s i o n making r e g a r d i n g the conduct o f t h e s t u d y . Data A n a l y s i s The i n t e r v i e w s were a u d i o - t a p e d and s u b s e q u e n t l y t r a n s c r i b e d . The w r i t t e n n a r r a t i v e s were c o l l e c t e d i n b o o k l e t s . Data c o l l e c t i o n , a n a l y s i s , and v e r i f i c a t i o n o c c u r r e d s i m u l t a n e o u s l y throughout the l i f e o f t h i s q u a l i t a t i v e r e s e a r c h p r o j e c t . A n a l y s e s emphasized the 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 impor tant l i f e events t h a t t h e y f e e l have been e f f e c t e d by t h e i r c h r o n i c i l l n e s s . Data a n a l y s i s began w i t h the t r a n s c r i p t i o n o f the i n t e r v i e w and t h e r e a d i n g o f the w r i t t e n n a r r a t i v e . The i n t e r v i e w s and w r i t t e n n a r r a t i v e s produced 320 t r a n s c r i b e d pages . Any r e f e r e n c e t o the name of the p a r t i c i p a n t was s u b s t i t u t e d by a pseudonym. Other p e o p l e ' s names were s u b s t i t u t e d by a d e s c r i p t i v e word r e f e r r i n g t o the r e l a t i o n s h i p t o the p a r t i c i p a n t . The a n a l y s i s o f da ta began i n t h i s p h e n o m e n o l o g i c a l r e s e a r c h as soon as the f i r s t da ta were c o l l e c t e d . I suspended as much as p o s s i b l e my meanings and i n t e r p r e t a t i o n s and e n t e r e d i n t o the w o r l d o f the u n i q u e i n d i v i d u a l who was i n t e r v i e w e d . Some r e s e a r c h e r s l i s t t h e i r own p r e s u p p o s i t i o n s i n w r i t i n g , so t h a t i t becomes e a s i e r t o h o l d them a t bay (Tesch , 1990). I a l s o d i d t h i s , but I remained aware t h a t even then b i a s e s cannot be c o n t r o l l e d c o m p l e t e l y . C l o s e a t t e n t i o n was p a i d t o the t e x t s , and w r i t t e n n a r r a t i v e s , and the d e t a i l s o f words i n e a c h . I began by a n a l y z i n g each p e r s o n ' s d a t a , and t h e n i d e n t i f i e d common themes i n a l l the m a t e r i a l u n t i l a s i g n i f i c a n t v i v i d r i c h n e s s o c c u r r e d . The method f o r d a t a a n a l y s i s used i n t h i s s t u d y was based on the E m p i r i c a l Phenomenolog ica l P s y c h o l o g i c a l Method (EPP) d e v e l o p e d by K a r l s s o n (1993). The r e s u l t s o f the E P P - method c o n s i s t o f p s y c h o l o g i c a l phenomenolog ica l s t r u c t u r e s . A s t r u c t u r e t h a t i n v o l v e s one i n d i v i d u a l ' s e x p e r i e n c e s o f the phenomenon i s c a l l e d a " s i t u a t e d s t r u c t u r e . " A s t r u c t u r e t h a t encompasses a l l the p a r t i c i p a n t s ' p r o t o c o l s o f t h e phenomenon, i n c l u d e d i n a s t u d y , i s c a l l e d a " g e n e r a l s t r u c t u r e . " F i r s t I r e a d the e n t i r e d a t a s e t c o n s i s t i n g o f t h e p a r t i c i p a n t ' s t r a n s c r i b e d i n t e r v i e w and w r i t t e n n a r r a t i v e . P h e n o m e n o l o g i c a l r e a d i n g i s more than a c a s u a l t a k i n g note o f t h e c o n t e n t . The r e s e a r c h e r immerses h e r / h i m s e l f i n t h e d a t a , r e a d s and r e r e a d s , and d w e l l s w i t h the d a t a , so s /he may a c h i e v e c l o s e n e s s t o them and a sense o f the whole ( T e s c h , 1990) . The r e s e a r c h e r i s open t o the t e x t and r e f r a i n s from impos ing any t h e o r e t i c a l e x p l a n a t o r y model upon i t ( K a r l s s o n , 1993). I t was expected t h a t r e c u r r e n t themes would b e g i n t o emerge t h a t i l l u m i n a t e the c e n t r a l f e a t u r e s o f the phenomenon. U n c o v e r i n g a theme ( i e . l i f e e x p e r i e n c e s i n c l u d e f e e l i n g a g r e a t d e a l o f anger) p r o v i d e d t h e g u i d i n g framework f o r my i n t e r p r e t a t i o n . W i t h i n t h i s framework, a p r o c e s s o f p e r c e i v i n g themes was o n g o i n g . I remained r e c e p t i v e t o t h i s p r o c e s s , so as t o be open t o the c r e a t i o n o f new meanings t h a t were expected t o emerge t h r o u g h t h e c o u r s e o f the s t u d y . To b e g i n t o uncover themes t h a t r e v e a l the c o r e o f e x p e r i e n c e , I r e a d and s t u d i e d the t r a n s c r i p t s and w r i t t e n n a r r a t i v e s a number o f t i m e s . T h i s s t ep c o n t a i n e d t h e d i s c r i m i n a t i o n o f s m a l l e r u n i t s . The p a r t i c i p a n t s ' t r a n s c r i b e d i n t e r v i e w s and w r i t t e n n a r r a t i v e s were d i v i d e d i n t o u n i t s . The t r a n s c r i p t s were d i v i d e d where a s h i f t i n meaning was d e t e r m i n e d . The u n i t was marked d i r e c t l y on t h e t r a n s c r i p t . A u n i t d i v i s i o n o c c u r s i n the f o l l o w i n g example from a female p a r t i c i p a n t ' s t r a n s c r i b e d i n t e r v i e w : O t h e r s around me, i n my l i f e , d i d no t q u i t e l i k e my p l a n s t o c o n t i n u e on w i t h u n i v e r s i t y and s t u d y i n g a g a i n i n the f a l l because o f my c o l i t i s , and t h a t made me a n g r y because I wanted t o and was g o i n g t o c o n t i n u e i n the f a l l . ( 34 ) /But when I s t a r t e d back I r e a l i z e d t h a t I was not g o i n g t o be a b l e t o do i t . (35) / I n t h i s example, u n i t 34 i s c o n s i d e r e d t o be d e s c r i b i n g t h e s i t u a t i o n b e f o r e t h i s p a r t i c i p a n t s t a r t e d back t o u n i v e r s i t y . A f t e r u n i t 34, t h e r e o c c u r s a t e m p o r a l change i n t h e d e s c r i p t i o n which i s then d i v i d e d i n t o a new u n i t . The d i v i s i o n i s , f i r s t and foremost , a p r a c t i c a l a i d ( K a r l s s o n , 1993) . Sometimes I d i v i d e d a v e r y s h o r t s en tence , i f a few words c o n t a i n e d i m p o r t a n t s i g n i f i c a n c e t o be f u r t h e r a n a l y z e d . A l t h o u g h sentences were d i v i d e d i n t o s e p a r a t e u n i t s , the a n a l y s i s o f each u n i t , which o c c u r s i n the next s t e p , was always done i n l i g h t o f the whole i n t e r v i e w o r w r i t t e n n a r r a t i v e . In the. next s t ep of a n a l y s i s , the p o i n t was t o t r a c e out t h e p s y c h o l o g i c a l meaning t h a t the p a r t i c i p a n t has l i v e d t h r o u g h and d e s c r i b e d i n the i n t e r v i e w and w r i t t e n n a r r a t i v e . The a n a l y s i s o f each u n i t was always i n t e r p r e t e d and t r a n s f o r m e d i n r e l a t i o n t o the complete i n t e r v i e w and w r i t t e n n a r r a t i v e . To p r o v i d e an example o f t h i s t r a n s f o r m a t i o n p r o c e s s , u n i t 34, p r e v i o u s l y shown above , i s p r e s e n t e d below t o g e t h e r w i t h a m e t h o d o l o g i c a l comment. F i r s t the u n i t i s p r e s e n t e d f o l l o w e d by an e x p l a n a t i o n o f t h e u n i t . The e x p l a n a t i o n i s p r e s e n t e d i n an i n d e n t e d p a r a g r a p h . F i n a l l y , a m e t h o d o l o g i c a l comment i s p r e s e n t e d . U n i t 34. O t h e r s around me, i n my l i f e , d i d not q u i t e l i k e my p l a n s t o c o n t i n u e on w i t h u n i v e r s i t y and s t u d y i n g a g a i n i n the f a l l because o f my c o l i t i s , and t h a t made me angry because I wanted t o and was g o i n g t o c o n t i n u e i n the f a l l . T h i s p a r t i c i p a n t , p e r c e i v e s t h a t o t h e r s do "not q u i t e l i k e " her p l a n , and she e x p e r i e n c e s f e e l i n g s o f anger because she wants t o c o n t i n u e , d e s p i t e o t h e r s ' c o n c e r n s r e g a r d i n g h e r c o l i t i s and the e f f e c t s c o n t i n u i n g may have on i t . Comment: The i m p r e s s i o n i s g i v e n t h a t t h i s p a r t i c i p a n t ' s p l a n s (to c o n t i n u e u n i v e r s i t y ) i n v o l v e s a c o n f l i c t t h a t causes a n g e r . As the a n a l y s i s o f t h i s u n i t i s u n d e r s t o o d i n t h e l i g h t o f h e r e n t i r e t r a n s c r i b e d i n t e r v i e w and i s t r a n s f o r m e d i n r e l a t i o n t o her complete i n t e r v i e w , t h i s concept o f anger i s suppor ted i n many o t h e r u n i t s . The angry c o n f l i c t i s between the p a r t i c i p a n t and o t h e r s ' t h a t do not agree w i t h h e r d e c i s i o n s and would p r e f e r t o have h e r f o l l o w t h e i r a d v i c e . In t h e next s t ep the i n t e r v i e w and w r i t t e n n a r r a t i v e d a t a were compared i n d e t a i l . T h i s i s e s s e n t i a l i f d a t a a r e t o be deemed c r e d i b l e . The i n t e r v i e w and w r i t t e n n a r r a t i v e d a t a agreed w i t h one another and were combined and i n t e g r a t e d as one whole s e t o f d a t a . Then a s y n t h e s i z i n g o f the t r a n s f o r m e d d a t a of each p a r t i c i p a n t s e p a r a t e l y i n t o what K a r l s s o n (1993) terms a " s i t u a t e d s t r u c t u r e , " p r e s e n t e d i n the form o f a s y n o p s i s , took p l a c e . When w r i t i n g t h e s i t u a t e d s t r u c t u r e i t i s important t o check the o r i g i n a l t r a n s c r i b e d i n t e r v i e w and w r i t t e n n a r r a t i v e . I t i s i n t h i s s t e p t h a t I f r e e d m y s e l f , somewhat, from the p a r t i c i p a n t ' s s t r u c t u r i n g and a r r a n g e d the u n i t s i n a p h e n o m e n o l o g i c a l l y s i g n i f i c a n t way. I at tempted t o f i n d the most s u i t a b l e form o f p r e s e n t a t i o n f o r each phenomenon. The " s i t u a t e d s t r u c t u r e " d e s c r i b e s the e x p e r i e n c e s o f each p a r t i c u l a r p a r t i c i p a n t l i v i n g w i t h t h e i r i l l n e s s . Here f o l l o w s an example from the " s i t u a t e d s t r u c t u r e " of the female p a r t i c i p a n t p r e s e n t e d e a r l i e r . In t h i s example, a comment f o l l o w s t h e e x c e r p t : J a n e t has d e c i d e d t o s t i l l t r y and do c e r t a i n t h i n g s t h a t she r e a l l y wants t o , a l t h o u g h many p e o p l e t e l l h e r t h a t she has t o l i v e a d i f f e r e n t l i f e s t y l e now t h a t she has c o l i t i s . She ge t s angry when peop le say t h a t she l o o k s s i c k and t h a t she ' s under too much s t r e s s . She g e t s angry when peop le argue t h a t she needs t o s t o p g o i n g t o s c h o o l and w o r k i n g . J a n e t wants t o c o n t i n u e g o i n g t o u n i v e r s i t y and w o r k i n g . "I am g o i n g t o no m a t t e r what they say . U n f o r t u n a t e l y , I d o n ' t t h i n k I am g o i n g t o be a b l e t o s u c c e s s f u l l y . " She ge t s angry when she h e a r s t h a t o t h e r s t h i n k she i s i n c a p a b l e o f c o n t i n u i n g her a c t i v i t i e s . However, she t o o q u e s t i o n s h e r a b i l i t y t o c o n t i n u e i n a l l her l i f e a c t i v i t i e s . (Comment: T h i s p a r t d e a l s w i t h the p a r t i c i p a n t ' s angry c o n f l i c t s because o f her s t i l l t r y i n g t o do c e r t a i n t h i n g s t h a t she r e a l l y wants t o , a l t h o u g h o t h e r s t e l l h e r t h a t she has t o l i v e a d i f f e r e n t l i f e s t y l e now t h a t she has c o l i t i s . T h i s segment concerns her s t r o n g w i l l t o c o n t i n u e i n a l l h e r l i f e a c t i v i t i e s , and her f e e l i n g s o f anger towards o t h e r p e o p l e t h a t argue w i t h her and a d v i s e her t o c o n s i d e r q u i t t i n g work and s c h o o l . However, t h e r e appears t o be a p a r t o f h e r t h a t t h i n k s the o t h e r s may be p a r t i a l l y r i g h t ) . The f i n a l s t ep i s a move from the s i t u a t e d s t r u c t u r e t o what K a r l s s o n (1993) terms the "genera l s t r u c t u r e " (many examples o f the same phenomena), which i n c o r p o r a t e s t h e themes o f a phenomenon which r u n a c r o s s s e v e r a l i f not a l l o f t h e s i t u a t e d s t r u c t u r e s o f each p a r t i c i p a n t . I a l s o i n t h i s s t e p r e t u r n e d t o the raw d a t a . An i s s u e p a r t i c u l a r t o t h i s s t e p , when d e a l i n g w i t h themes, i s the chance t h a t I may have l e f t out a p p l i c a b l e e lements from the t r a n s c r i b e d i n t e r v i e w s and w r i t t e n n a r r a t i v e s o f a l l the p a r t i c i p a n t s , which c o u l d p r e v e n t a p r o p e r e x p l i c a t i o n o f t h e themes. I made a s e r i o u s e f f o r t t o compare the d i f f e r e n t i n t e r v i e w s and w r i t t e n n a r r a t i v e s w i t h one a n o t h e r . The a n a l y s i s t h a t w i l l be p r e s e n t e d i n the g e n e r a l s t r u c t u r e i s based on a l l t h e d a t a from the 10 p a r t i c i p a n t s . The a n a l y s i s o f a l l t h e p a r t i c i p a n t s t o g e t h e r i n t h i s l a s t s t ep was p r e s e n t e d i n terms o f d i f f e r e n t themes r e p r e s e n t a t i v e o f the l i f e e x p e r i e n c e s o f young a d u l t s w i t h a c h r o n i c i l l n e s s . My g o a l was t o summarize the o r i g i n a l s t o r i e s w i t h s u f f i c i e n t e l a b o r a t i o n t o rev iew the u n d e r s t a n d i n g w i t h i n t h e s ta tements o f the p a r t i c i p a n t s and my i n t e r p r e t a t i o n . Here f o l l o w s an example from the "genera l s t r u c t u r e " i n v o l v i n g t h e theme o f anger . The e x c e r p t w i l l be f o l l o w e d by m e t h o d o l o g i c a l c o n s i d e r a t i o n s : S e v e r a l o f the p a r t i c i p a n t s e x p e r i e n c e d angry c o n f l i c t s because o f s t i l l t r y i n g t o do c e r t a i n t h i n g s t h a t t h e y r e a l l y wanted t o , a l t h o u g h o t h e r s t e l l them t h a t they have t o l i v e a d i f f e r e n t l i f e s t y l e now t h a t they have C r o h n ' s d i s e a s e o r c o l i t i s . Many of them wanted t o c o n t i n u e i n a l l t h e i r l i f e a c t i v i t i e s and had f e e l i n g s o f anger towards o t h e r p e o p l e t h a t argued w i t h them and t o l d them t o r e s t r i c t t h e i r a c t i v i t i e s A l t h o u g h angry because o f b e i n g t o l d t o l i m i t a c t i v i t y , s e v e r a l p a r t i c i p a n t s appeared t o t h i n k t h a t t h i s was p r o b a b l y n e c e s s a r y "I am g o i n g t o no m a t t e r what t h e y say about h a v i n g t o r e s t r i c t my a c t i v i t i e s . U n f o r t u n a t e l y , p a r t o f me t h i n k s t h a t t h e y ' r e l i k e l y r i g h t . " When l o o k i n g a t the example from the female p a r t i c i p a n t ' s " s i t u a t e d s t r u c t u r e " , p r e s e n t e d e a r l i e r , the d e c i s i o n about c o n t i n u i n g u n i v e r s i t y and work, was u n d e r s t o o d as i n v o l v i n g an angry c o n f l i c t . Such a t r a n s l a t i o n was f e l t t o be a p p r o p r i a t e f o r t h i s p a r t i c u l a r p a r t i c i p a n t ' s t r a n s c r i b e d i n t e r v i e w and w r i t t e n n a r r a t i v e . When l o o k i n g a t a l l the o t h e r t r a n s c r i p t s from t h i s s t u d y , n i n e out o f t e n o f them r e f e r t o f e e l i n g a g r e a t d e a l o f a n g e r . In o t h e r words , from the da ta the theme o f " f e e l i n g anger" i s e x p e r i e n c e d by young a d u l t s l i v i n g w i t h C r o h n ' s d i s e a s e and c o l i t i s . Here f o l l o w s a summary of the d i f f e r e n t s t e p s o f a n a l y s i s from a m e t h o d o l o g i c a l p o i n t o f v i ew . The raw d a t a a r e t r a n s c r i b e d i n t e r v i e w s and w r i t t e n n a r r a t i v e s d e s c r i b i n g c e r t a i n e x p e r i e n c e s , t h o u g h t s , and f e e l i n g s . U n i t 34 from a female p a r t i c i p a n t ' s t r a n s c r i b e d i n t e r v i e w , p r e s e n t e d e a r l i e r , was e x p l a i n e d t o mean "that o t h e r s do A n o t q u i t e l i k e ' her p l a n , and she e x p e r i e n c e s f e e l i n g s o f anger because she wants t o c o n t i n u e " . The a n a l y s i s t h e n moved from t h e d e s c r i p t i o n o f an e x p e r i e n c e t o an e x p l a n a t i o n o f what t h i s e x p e r i e n c e meant i n l i g h t o f bo th t h i s p a r t i c u l a r female p a r t i c i p a n t ' s t r a n s c r i b e d i n t e r v i e w and w r i t t e n n a r r a t i v e . In t h e f i n a l s t e p , the theme ( l i f e e x p e r i e n c e s i n c l u d e f e e l i n g a g r e a t d e a l o f anger) i s e x p l o r e d . A s h i f t o f r e f l e c t i o n on each s e p a r a t e p a r t i c i p a n t ' s t r a n s c r i b e d i n t e r v i e w and w r i t t e n n a r r a t i v e t o a l l t r a n s c r i p t s t o g e t h e r i s c a r r i e d o u t . The theme i s c o n s i d e r e d t o see i f and how i t p e r t a i n s t o a l l the p a r t i c i p a n t s ' e x p e r i e n c e s . T h i s f i n a l s t e p of the a n a l y s i s i n v o l v e s f i n d i n g out i f , i n g e n e r a l , f o r t h e s e young a d u l t s , the e x p e r i e n c e s o f l i v i n g w i t h C r o h n ' s d i s e a s e or c o l i t i s • i n c l u d e s " f e e l i n g a g r e a t d e a l o f a n g e r . " T h u s , t h i s theme o f anger i s e s t a b l i s h e d a t a g e n e r a l l e v e l , compared t o j u s t one p a r t i c i p a n t ' s s i t u a t i o n . T h i s theme was e x p e r i e n c e d by n i n e o f the t e n p a r t i c i p a n t s w h i l e t h e o t h e r seven themes were e x p e r i e n c e d by a l l t e n p a r t i c i p a n t s . Wi th t h i s theme of anger , the d i f f e r e n t s t e p s o f a n a l y s i s have been shown; f i r s t t r a c i n g out t h e meaning o f e x p e r i e n c e s , then the g e n e r a l i z a t i o n o f e x p e r i e n c e s from each i n d i v i d u a l p a r t i c i p a n t ' s t r a n s c r i b e d i n t e r v i e w and w r i t t e n n a r r a t i v e t o a l l the p a r t i c i p a n t s ' t r a n s c r i b e d i n t e r v i e w s and w r i t t e n n a r r a t i v e s . CHAPTER THREE A n a l y s i s and R e s u l t s The r e s u l t s o b t a i n e d from the d e s c r i p t i v e d a t a a r e p r e s e n t e d i n the p r e s e n t c h a p t e r . A l l t e n p a r t i c i p a n t s ' t r a n s c r i b e d i n t e r v i e w s and w r i t t e n n a r r a t i v e s were used i n t h e d a t a . There were 7 women and 3 men. The mean age o f p a r t i c i p a n t s was 24.2 y e a r s . The f i r s t s e c t i o n o f t h i s c h a p t e r p r o v i d e s what K a r l s s o n (1993) terms a " s i t u a t e d s t r u c t u r e , " d e p i c t e d i n t h e framework o f a summary of each p a r t i c i p a n t s e p a r a t e l y . A " s i t u a t e d s t r u c t u r e " c o n t a i n s a p a r t i c u l a r p a r t i c i p a n t ' s e x p e r i e n c e s . When working w i t h the s i t u a t e d s t r u c t u r e I c o n s i s t e n t l y checked back t o the i n i t i a l t r a n s c r i b e d i n t e r v i e w and w r i t t e n n a r r a t i v e . I t i s i n t h i s p r e s e n t a t i o n o f t h e r e s u l t s t h a t I r e l e a s e d m y s e l f , p a r t l y , from t h e p a r t i c i p a n t ' s arrangement and s t r u c t u r e d the p i e c e s i n a p h e n o m e n o l o g i c a l l y mean ingfu l f a s h i o n . I t r i e d t o f i n d the most u s e f u l method o f p r e s e n t a t i o n f o r each phenomenon. On the f o l l o w i n g pages are the complete " s i t u a t e d s t r u c t u r e s " o f each p a r t i c i p a n t ' s combined i n t e r v i e w and w r i t t e n n a r r a t i v e . R e f l e c t i o n s from the p r o c e s s d i a r y a r e p r e s e n t e d a t t h e end o f the c h a p t e r . J a n e t J a n e t i s a 2 3 - y e a r - o l d female w i t h c o l i t i s . She was d i a g n o s e d a t the age o f 18. She was r e c e i v i n g a n t i - i n f l a m m a t o r y d r u g t rea tment a t the t ime o f her p a r t i c i p a t i o n i n t h i s s tudy and had not as y e t had s u r g e r y f o r h e r i l l n e s s . J a n e t a p p r a i s e d her own h e a l t h as p o o r . She d e s c r i b e d h e r s e l f as f e e l i n g " s i c k and weak". J a n e t ' s s i t u a t i o n began when she s t a r t e d n o t i c i n g some symptoms a t t h e age o f 16, w h i l e a t t e n d i n g grade 11. She went t o go see h e r d o c t o r and her d o c t o r t o l d h e r "to j u s t p u t a h o t water b o t t l e on i t and i t s h o u l d go away." So she j u s t l i v e d w i t h i t u n t i l she began r e a l l y b e i n g a f f e c t e d by symptoms a y e a r l a t e r . One of the p r i m a r y symptoms she s u f f e r e d from was h a v i n g t o vomit every t ime she a t e . T h i s q u i c k l y d i m i n i s h e d any d e s i r e f o r f o o d . Wi th J a n e t ' s l a c k o f food i n t a k e came a severe decrease i n energy , and an i n a b i l i t y t o c o n t i n u e w i t h many of her l i f e t a s k s . J a n e t r a p i d l y l o s t we ight , and w i t h i t her energy t o p a r t i c i p a t e i n e n j o y a b l e a c t i v i t i e s as w e l l as h e r a b i l i t y t o keep up w i t h everyday r e s p o n s i b i l i t i e s . "I c o u l d no l o n g e r do a n y t h i n g , work and e s p e c i a l l y not p l a y . " One o f the e n j o y a b l e a c t i v i t i e s t h a t she found she had t o say "no" t o was s o c i a l i z i n g w i t h f r i e n d s , and p a r t i c u l a r l y when i t i n v o l v e d f o o d . W i t h each food t h a t made J a n e t s i c k , h e r d i e t became more and more r e s t r i c t e d , "It was t o the p o i n t o f l i v i n g o f f a p p l e j u i c e and c r a c k e r s . " She was f e e l i n g e x t r e m e l y s i c k and so r e s o l v e d t o go see her d o c t o r a g a i n . When h e r d o c t o r saw how t h i n she had become he d e c i d e d t o send h e r t o a s p e c i a l i s t , and t h i s s p e c i a l i s t immediate ly d i a g n o s e d h e r w i t h c o l i t i s . J a n e t l o s t weight and a l o n g w i t h her weight h e r "muscle mass v a n i s h e d . " She was no l o n g e r a b l e t o be as a c t i v e as she was b e f o r e , "I l o s t so much muscle mass, I l o s t my a b i l i t y t o do a n y t h i n g p h y s i c a l , I c o u l d n ' t e x e r c i s e , so t h a t made me f e e l r e a l l y , r e a l l y bad a l l o v e r , g e n e r a l yucky f e e l i n g . " D u r i n g t h i s t ime she was not f e e l i n g good about h e r s e l f as she was weak, t h i n , and had no energy f o r a n y t h i n g . J a n e t g r i e v e s the " loss" of many of t h i n g s she can no l o n g e r do . She has had t o g i v e up many of the a c t i v i t i e s t h a t she e n j o y s , "Somebody might phone up, x l e t ' s go s k i i n g ' and i f I 'm not f e e l i n g t h a t g r e a t I have t o say x n o , ' I d o n ' t r e a l l y f e e l l i k e g o i n g s k i i n g . " She says "no" t o t h e s e a c t i v i t i e s because she i s a f r a i d o f g e t t i n g s i c k . "I never know when I'm g o i n g t o get s i c k , l i k e r e a l l y s i c k , l i k e the t ime I ended up i n the h o s p i t a l because I was j u s t r i d i c u l o u s l y low on b l o o d . " A t the age o f 22 w h i l e a t t e n d i n g h e r f o u r t h y e a r o f u n i v e r s i t y J a n e t became anemic , and she was g i v e n h e r f i r s t b l o o d t r a n s f u s i o n . Hav ing a b l o o d t r a n s f u s i o n was "very d i f f e r e n t " f o r her and i t s c a r e d h e r . "The t r a n s f u s i o n s were another t h i n g t h a t was new and s c a r y f o r me." The t r a n s f u s i o n s made her r e a l i z e j u s t how s i c k she was, and a t t h i s p o i n t she r e a l i z e d t h a t she "no l o n g e r knew what i t meant t o f e e l h e a l t h y . I was j u s t s i c k , f e e l i n g l o u s y , and h a v i n g no energy a l l the t i m e . " A l l t h r o u g h J a n e t ' s f i r s t t h r e e y e a r s o f u n i v e r s i t y she took a f u l l c o u r s e l o a d a l t h o u g h she "was f e e l i n g l o u s y and low on e n e r g y . " Then she came t o a d e c i s i o n f o r h e r f o u r t h y e a r t o drop down t o a l e s s e r l o a d . She thought she c o u l d no l o n g e r h a n d l e the f u l l course l o a d . " T h i s was a b i g t h i n g " f o r J a n e t because she was no l o n g e r g o i n g t o graduate w i t h her p e e r s . She became c l o s e w i t h some o f the o t h e r s t u d e n t s , and now she was g i v i n g up g r a d u a t i n g w i t h them. She was angry t h a t she had l o s t t h e chance t o g r a d u a t e w i t h a l l her f r i e n d s , "I was so p i s s e d o f f a t my d i s e a s e because I wasn ' t g o i n g t o g r a d u a t e when I r e a l l y wanted t o and I was s c a r e d t h a t I may never g r a d u a t e . " J a n e t i s " a f r a i d " o f t h i n g s t h a t she "never f e l t a f r a i d o f b e f o r e . " She " f e l t v e r y anxious and nervous g o i n g t o s c h o o l . " "Would I f e e l okay enough t o get t o s c h o o l . " She "would ge t nervous about g e t t i n g s i c k " b e f o r e she made i t t o c l a s s and she remembers " g e t t i n g anx ious a t work as w e l l . " "I was s c a r e d a t s c h o o l and I was s c a r e d a t work. I 'm s c a r e d a l l t h e t ime now, i n the p r e s e n t , and I'm s c a r e d about what my l i f e i s t o b r i n g me." J a n e t becomes s c a r e d when she t h i n k s about h e r f u t u r e l i v i n g w i t h c o l i t i s , and knows i t ' s g o i n g t o be d i f f e r e n t because she has a c h r o n i c i l l n e s s , " Y o u ' r e not g o i n g t o be young f o r e v e r , i t ' s g o i n g t o e f f e c t you d i f f e r e n t l y when you ge t o l d e r , your h e a l t h i s no l o n g e r the same." She g r i e v e s t h e l o s s o f t h i s good h e a l t h t h a t she once had b e f o r e h e r body was i n v a d e d by t h i s c h r o n i c i l l n e s s . "My i l l n e s s has j u s t t a k e n over and has s topped me from l i v i n g my r e g u l a r l i f e , and I r e a l l y miss my r e g u l a r l i f e . " I t s c a r e s J a n e t when she t h i n k s about h e r f u t u r e and how h e r i l l n e s s w i l l e f f e c t h a v i n g c h i l d r e n , "It w o r r i e s me. I t h i n k when I get o l d e r and i f I do have k i d s am I g o i n g t o ge t s i c k ? I d o n ' t want t o be s i c k a l l the t i m e , a l l my l i f e . " J a n e t c o n t i n u e s t o worry about many t h i n g s t h a t c o u l d become a p a r t o f her e x p e r i e n c e l i v i n g w i t h t h i s s i c k n e s s . She i s t r o u b l e d by her i n c r e a s e d chances o f g e t t i n g c a n c e r from h e r c o l i t i s . P l u s b e i n g on m e d i c i n e a l l t h e t i m e s c a r e s h e r , and she u n c e r t a i n whether she i s ever g o i n g t o spend a day w i t h o u t m e d i c a t i o n . J a n e t ' s f u t u r e i s f u l l o f u n c e r t a i n t i e s , " I t ' s s c a r y because I d o n ' t know what ' s g o i n g t o h a p p e n . " A l t h o u g h work was d i f f i c u l t f o r J a n e t , as she never knew when she was g o i n g t o get s i c k , she d i d not want t o t e l l anybody t h e r e about her i l l n e s s . She has a h a r d t ime t e l l i n g p e o p l e about h e r c h r o n i c i l l n e s s . She d o e s n ' t l i k e anyone t o know about her d i s e a s e because she d o e s n ' t want them t o t h i n k t h a t s h e ' s "any d i f f e r e n t o r not c a p a b l e o f d o i n g s o m e t h i n g . " J a n e t f i n d s t h a t "some p e o p l e a r e u n c o m f o r t a b l e " f i n d i n g out t h a t she has c o l i t i s and t h e n t r e a t h e r " d i f f e r e n t l y . " Hav ing peop le " f e e l anx ious" around h e r makes h e r "uncomfortable" w i t h h e r s e l f . She i s g e n e r a l l y uneasy w i t h t a l k i n g about her i l l n e s s . Her d i s c o m f o r t w i t h some p e o p l e knowing about her d i s e a s e has s topped h e r from a c c e p t i n g i n v i t a t i o n s t o v a r i o u s s o c i a l g a t h e r i n g s . She f e a r s b e i n g w i t h peop le t h a t are u n c o m f o r t a b l e knowing about h e r i l l n e s s . J a n e t p o i n t s t o how her i l l n e s s f r e q u e n t l y e l i c i t s d i s c o m f o r t from o t h e r s , and how t h i s causes a d e c r e a s e i n h e r s e l f - e s t e e m : I t r y so h a r d t o a v o i d h a v i n g peop le f i n d out t h a t I have t h i s i l l n e s s because i t ' s such a c o n v e r s a t i o n s t o p p e r , and i t makes peop le u n c o m f o r t a b l e . I t a l s o makes me f e e l r e a l l o u s y about myse l f because t h e y ' r e u n c o m f o r t a b l e w i t h me and who I am as a p e r s o n , my d i s e a s e i s p a r t o f me, t h a t ' s j u s t the way i t i s u n f o r t u n a t e l y . She emphasizes how h a v i n g c o l i t i s commonly evokes u n e a s i n e s s from o t h e r s , and how t h i s has a huge impact on h e r s e l f - image. J a n e t becomes "angry w i t h peop le t h a t f e e l nervous" around h e r j u s t because she has a c h r o n i c i l l n e s s , and she wonders about the reasons they f e e l u n c o m f o r t a b l e w i t h h e r . However, she knows the reasons she f e e l s u n c o m f o r t a b l e w i t h them, "One o f the reasons I d o n ' t l i k e t o t a l k about my d i s e a s e i s because I f e e l l i k e I become a d i f f e r e n t p e r s o n i n t h e i r eyes . I t makes me f e e l v e r y u n c o m f o r t a b l e . " She l o s e s h e r o l d s e l f i n t h e i r eyes because they now see h e r as someone d i f f e r e n t , and t h e y ' r e not s u r e how t o a c t around h e r . A l o n g w i t h f e e l i n g angry about peop le t r e a t i n g h e r d i f f e r e n t l y , J a n e t a l s o becomes angry when p e o p l e sugges t t h a t she somehow brought on her i l l n e s s . She does no t t h i n k t h a t she d i d cause her c o l i t i s , "I do not t h i n k my p e r s o n a l i t y o r emotions caused t h i s , I l o o k back and t h i n k xhow c o u l d t h a t have b e e n ' . " She s t a t e s t h a t she has r e a d t h a t d o c t o r s a r e c l o s e t o f i n d i n g a m e d i c a l cause f o r C o l i t i s . So, she wonders why o t h e r s are s t i l l t r y i n g t o make h e r f e e l g u i l t y . She ge t s angry when o t h e r p e o p l e "blame" h e r f o r c a u s i n g her c h r o n i c i l l n e s s . J a n e t becomes angry when i t f e e l s l i k e peop le are s u g g e s t i n g t h a t she caused h e r d i s e a s e , "People say t o me " y o u ' r e under too much s t r e s s " , and I become d e f e n s i v e because I f e e l t h a t a bunch o f p e o p l e t h a t I d o n ' t even r e a l l y know are b laming me f o r c a u s i n g my d i s e a s e . " J a n e t ge t s angry when peop le ask her i f s h e ' s under too much s t r e s s a t s c h o o l , and suggest t h a t maybe t h i s i s t h e r e a s o n f o r her h a v i n g c o l i t i s . She s t a t e s t h a t s c h o o l h a d n ' t even s t a r t e d when she was f e e l i n g s i c k . She b e l i e v e s s t r o n g l y t h a t she d i d not cause her c o l i t i s , "I d i d n ' t cause my d i s e a s e , n o t h i n g I d i d c o u l d have caused the h e l l t h a t I have t o go t h r o u g h now." J a n e t then l o o k s a t h e r l i f e b e f o r e c o l i t i s t o see i f a n y t h i n g i n her p a s t f a m i l y h i s t o r y c o u l d have made her more s u s c e p t i b l e t o c o n t r a c t i n g c o l i t i s . However, she f e e l s t h a t " i t c o u l d n ' t have been b e t t e r , I was b a s i c a l l y f r e e o f any r e a l s t r e s s . " J a n e t f e e l s s a f e w i t h the peop le who d o n ' t blame h e r f o r c a u s i n g h e r d i s e a s e , and who d o n ' t t r e a t h e r any d i f f e r e n t l y . She f e e l s sa f e w i t h the peop le t h a t know a l l about i t and a c c e p t i t . The peop le she does f e e l c o m f o r t a b l e w i t h a r e the peop le t h a t d o n ' t make her f e e l d i f f e r e n t . J a n e t has d e c i d e d t o s t i l l t r y and do c e r t a i n t h i n g s t h a t she r e a l l y wants t o , a l t h o u g h many p e o p l e t e l l h e r t h a t she has t o l i v e a d i f f e r e n t l i f e s t y l e now t h a t she has c o l i t i s . She ge t s angry when peop le say t h a t she l o o k s s i c k and t h a t s h e ' s under too much s t r e s s . She ge t s angry when p e o p l e argue t h a t she needs t o s top g o i n g t o s c h o o l and w o r k i n g . J a n e t wants t o c o n t i n u e g o i n g t o u n i v e r s i t y and w o r k i n g . "I am g o i n g t o no mat ter what they s a y . U n f o r t u n a t e l y , I d o n ' t t h i n k I am g o i n g t o be a b l e t o s u c c e s s f u l l y . " She ge t s angry when she h e a r s t h a t o t h e r s t h i n k she i s i n c a p a b l e o f c o n t i n u i n g her a c t i v i t i e s . However, she too q u e s t i o n s her a b i l i t y t o c o n t i n u e i n a l l h e r l i f e a c t i v i t i e s . J a n e t d o e s n ' t l i k e a l o t o f d i f f e r e n t p e o p l e knowing about h e r c o l i t i s . "I hate t h a t so many p e o p l e know about i t because t h e n t h e r e g o i n g t o be l o o k i n g a t me d i f f e r e n t l y a l l t h e t i m e . " She ge t s angry when one person passes on i n f o r m a t i o n about her c o n d i t i o n t o o t h e r s w i t h o u t h e r c o n s e n t , and t h i s i s one o f the main reasons she d o e s n ' t l i k e c e r t a i n p e o p l e knowing about her c h r o n i c i l l n e s s , "I h a t e when i t seems everyone i s t a l k i n g about my d i s e a s e w i t h one a n o t h e r w i t h o u t me knowing about i t , and t h e n t h e s e p e o p l e come t o me w i t h a l l t h e i r i n q u i r i n g q u e s t i o n s . " J a n e t ge t s angry when peop le ask her p e r s o n a l q u e s t i o n s about h e r i l l n e s s because t a l k i n g about her c o l i t i s causes h e r "to become v e r y e m o t i o n a l . " She d o e s n ' t l i k e p e o p l e t o come t o v i s i t h e r i n the h o s p i t a l because t h e n t h e y expec t h e r t o t e l l them a l l about her i l l n e s s . She d o e s n ' t l i k e g e t t i n g many v i s i t o r s a t the h o s p i t a l because she d o e s n ' t want p e o p l e a s k i n g her p e r s o n a l q u e s t i o n s about h e r d i s e a s e . J a n e t does not l i k e e x p l a i n i n g her i l l n e s s and t h e n be asked why she d e v e l o p e d i t , " I t ' s j u s t such a h a r d t h i n g d e f i n i n g i t f o r v i s i t o r s , and then I d o n ' t want them t o ask %why d i d you ge t s i c k , what h a p p e n e d ' . " " I t ' s l i k e t h e y f e e l t h e y can e n c r o a c h on my p r i v a c y , and I d o n ' t want them t o because I ' v e a l r e a d y been invaded too much because o f t h i s d i s e a s e . " She a s s o c i a t e s p e o p l e ' s q u e s t i o n s about her d i s e a s e w i t h the v i o l a t i o n s she has a l r e a d y e x p e r i e n c e d a t the hands o f h e r i l l n e s s as she i n d i c a t e s : I ' v e a l r e a d y been through h e l l because o f t h i s d i s e a s e , and the l a s t t h i n g I need i s a bunch o f p e o p l e a s k i n g me q u e s t i o n s l i k e "are you too s t r e s s e d out maybe?" I w a s n ' t b e f o r e t h i s . b u t I sure the h e l l am now. J a n e t c o n t i n u e s t o d i s c u s s the concept o f s t r e s s and emphasizes t h a t she knows many "people t h a t a r e s t r e s s e d o u t . " She q u e s t i o n s "why n o t h i n g happens t o them i f s t r e s s i s a c a u s a l f a c t o r i n c o l i t i s . " However, she admit s t h a t she f e e l s more s t r e s s now, s i n c e d e v e l o p i n g c o l i t i s and f i n d s t h i s " s c a r y . " "I c e r t a i n l y do f e e l more s t r e s s now, t o t h e p o i n t o f f e e l i n g l i k e I am l o s i n g c o n t r o l a t t i m e s . " J a n e t emphasizes the e x p e r i e n c e o f l o s i n g some o f t h e c o n t r o l over one ' s l i f e when l i v i n g w i t h c o l i t i s . " T h i s damn d i s e a s e has so much c o n t r o l over my f u t u r e l i f e . " "I am p i s s e d o f f a t t h e amount o f c o n t r o l I f e e l I ' v e l o s t t o my i l l n e s s . " She ends by s t a t i n g t h a t she f e e l s a g r e a t d e a l o f anger towards her i l l n e s s because o f a l l the f e a r , u n c e r t a i n t y , and l a c k o f c o n t r o l i t has c r e a t e d i n h e r l i f e . A n i t a A n i t a i s a 2 5 - y e a r - o l d female w i t h c o l i t i s . She was d i a g n o s e d a t the age o f 14. She was r e c e i v i n g s t e r o i d t r e a t m e n t a t the t ime of her p a r t i c i p a t i o n i n t h i s s t u d y and had bowel r e s e c t i o n s u r g e r y once f o r her i l l n e s s p r i o r t o p a r t i c i p a t i n g . A n i t a a p p r a i s e d her h e a l t h a t the t ime o f t h e i n t e r v i e w as not good. She d e s c r i b e d h e r s e l f as b e i n g " s i c k " . A n i t a ' s s i t u a t i o n had i t s b e g i n n i n g s when she was on v a c a t i o n w i t h her r e l a t i v e s . She was 1 4 - y e a r s - o l d and began h a v i n g a l o t o f p a i n i n her stomach a r e a . Her r e l a t i v e s t o o k h e r t o a d o c t o r , and i t was de termined t h a t she had c o l i t i s . A f t e r b e i n g d iagnosed w i t h c o l i t i s A n i t a found h e r s e l f s p e n d i n g a g r e a t d e a l o f t ime i n the h o s p i t a l . She was p u t t h r o u g h many t e s t s and observed f o r l o n g p e r i o d s o f t i m e . She was a l s o p r e s c r i b e d v a r i o u s m e d i c a t i o n s . A n i t a s t a t e s t h a t i t i s a d i f f e r e n t l i f e s t y l e growing up and s p e n d i n g so much t ime i n the h o s p i t a l . She f e e l s l i k e she has never " f u l l y deve loped as a young a d u l t " because o f s p e n d i n g so much o f h e r l i f e " i n s t i t u t i o n a l i z e d " . She f e e l s t h a t h e r l i f e has taken a c o m p l e t e l y d i f f e r e n t p a t h t h a n most because o f a l l the t ime she has spent i n h o s p i t a l s . She s t a t e s t h a t she i s t r e a t e d d i f f e r e n t l y by o t h e r s because o f h a v i n g c o l i t i s . When A n i t a wasn ' t i n the h o s p i t a l she was i n s c h o o l , and she s t a t e s t h a t h e r e x p e r i e n c e s i n s c h o o l were h o r r i f y i n g . She remembers f e e l i n g "very u g l y and b e i n g hated" by o t h e r s t u d e n t s because o f the v i s i b l e s i d e e f f e c t s o f h e r i l l n e s s and m e d i c a t i o n s . She remembers b e i n g t r e a t e d h o r r i b l y by o t h e r s a t s c h o o l because she had a c h r o n i c i l l n e s s . Because o f A n i t a ' s i l l n e s s she had t o t a k e f r e q u e n t t r i p s t o the bathroom, and t h i s was n o t i c e d by o t h e r s t u d e n t s . They would f o l l o w her t o the bathroom and t h e n make fun o f h e r . A n i t a s t a t e s t h a t she was t r e a t e d l i k e a " freak" by o t h e r t e e n a g e r s because of b e i n g s i c k , and they made h e r f e e l l i k e "there was d e f i n i t e l y something wrong" w i t h h e r . She f e l t "a t tacked" by o t h e r s her own age and v e r y d i f f e r e n t i n compar i son t o o t h e r s her own age. She s t a t e s t h a t h e r i l l n e s s e x p e r i e n c e s e t her a p a r t from "normal" c h i l d r e n . A n i t a f e e l s t h a t she i s not "normal" because she has t h i s d i s e a s e . A n i t a s t a t e s t h a t the d i s e a s e causes " r e a l inhumane and abnormal t r e a t m e n t . " She f e e l s t h a t i n her e x p e r i e n c e i t i s n ' t so much the i l l n e s s t h a t i s m i s e r a b l e but t h e s i t u a t i o n s t h a t she i s p l a c e d i n because o f h e r i l l n e s s , and the way she i s t r e a t e d i n those s i t u a t i o n s . A l t h o u g h she a l s o s t a t e s t h a t the c o l i t i s i t s e l f i s m i s e r a b l e and inhumane. A n i t a ' s i l l n e s s and the t rea tment o f h e r i l l n e s s made h e r f e e l l i k e an " u g l y , s i c k , g i r l " t h a t c o u l d be t r e a t e d i n any way t h a t o t h e r s chose . "I never knew when I was g o i n g t o be s i c k , r u s h e d o f f t o h o s p i t a l and put t h r o u g h h e l l by the m e d i c a l w o r l d . " She put s emphasis on these f e e l i n g s as b e i n g v e r y i m p o r t a n t i n her e x p e r i e n c e . A n i t a remembers many h o r r i b l e images i n her e x p e r i e n c e s l i v i n g w i t h c o l i t i s . She r e c a l l s " l o t s o f b l o o d " i n h e r e x p e r i e n c e o f her i l l n e s s , and she remembers l o t s o f h e r h a i r coming out i n h a n d f u l s . She a l s o remembers h e r n a i l s coming out o f her hands . A l l o f these i n c i d e n t s a r e caused e i t h e r by t h e d i s e a s e i t s e l f or by the m e d i c a t i o n s g i v e n t o A n i t a t o c o n t r o l the symptoms of the d i s e a s e . T h i s i l l n e s s causes A n i t a t o f e e l "very unhappy and v e r y angry" over a l l the t h i n g s she i s put t h r o u g h because o f i t . She f i n d s i t d i f f i c u l t because she i s angry about h e r c o l i t i s but d o e s n ' t know who she can be angry a t . However, she t h e n goes on t o admit t h a t some of her anger i s f o c u s s e d a t t h e d o c t o r s f o r a l l the t e s t s they put h e r t h r o u g h . A n i t a a l s o f e e l s anger towards h e r s e l f and her body f o r h a v i n g t h i s c h r o n i c i l l n e s s . She i s j u s t now r e a l i z i n g t h a t i t i s n ' t h e r f a u l t but s t i l l has d i f f i c u l t y e r a s i n g t h e e m o t i o n a l c o n t e n t o f t h i s s e l f - b l a m e . She has d i f f i c u l t y w i t h h e r anger r e g a r d i n g her d i s e a s e because she s t i l l d o e s n ' t r e a l l y know who t o be angry a t , "But I c a n ' t blame anyone, because they were a l l t r y i n g t o h e l p me when t h e y p u t me t h r o u g h those d e g r a d i n g p r o c e d u r e s . " So a t t i m e s A n i t a t u r n s h e r h o s t i l i t y on h e r s e l f , and t h e n f e e l s g u i l t y . G u i l t i s ano ther emotion t h a t she e x p e r i e n c e s f r e q u e n t l y because o f t h i s i l l n e s s . She i s angry a t the d o c t o r s who t r e a t h e r and t h e n f e e l s g u i l t y because they a r e o n l y t r y i n g t o h e l p h e r , "I ha ted them and I s t i l l do , and t h e n I f e e l g u i l t y and angry a t myse l f f o r t h a t h a t e . " A n i t a e x p e r i e n c e s f e e l i n g a g r e a t d e a l o f a n g e r . She i s angry f o r b e i n g h u r t by her c o l i t i s and she i s angry f o r b e i n g h u m i l i a t e d . She i s enraged by a l l the t h i n g s t h a t h e r c o l i t i s and her d o c t o r s put her through and a l l the m e d i c a t i o n s she has t o take t o t r y and c o n t r o l i t , "A l o t o f t h e m e d i c a t i o n s they put me on and a l o t o f the t e s t s t h e y d i d were p r e t t y u n p l e a s a n t . I ' v e r e s e n t e d a l l o f them e v e r s i n c e f o r i n f r i n g i n g on my body t h a t way." A n i t a emphasizes the v i o l a t i o n t h a t she f e l t w h i l e b e i n g put t h r o u g h many "degrading t e s t s and p r o c e d u r e s . " "When I was 15, t h e r e were too many i n c i d e n t s t o count o f , how many t imes d o c t o r s shoved t h i n g s up my r e c t u m . I f e l t c o m p l e t e l y s t r i p p e d of any d i g n i t y . " F o r her the d i s e a s e i s i n s e p a r a b l e from the "extreme abuse" t h a t she f e l t from the b e g i n n i n g o f h e r d i a g n o s i s , and the c o n t r o l she had t o g i v e up o v e r h e r body. A n i t a f e e l s a " t o t a l l a c k o f c o n t r o l " over h e r body and h e r subsequent body image s i n c e b e i n g d i a g n o s e d w i t h c o l i t i s . "Somehow when y o u ' r e i n the h o s p i t a l your r i g h t s t o y o u r own body are taken away, and t h i s e f f e c t s the way you see y o u r s e l f from then on i n . " She f i n d s i t v e r y h a r d t o t a l k t o anyone about t h i s a spec t o f her e x p e r i e n c e as she f e e l s v e r y a l o n e w i t h t h i s p a r t o f her i l l n e s s e x p e r i e n c e , "I f i n d n o t h i n g t h a t matches my e x p e r i e n c e r e g a r d i n g t h e d e s t r u c t i o n o f my s e l f - e s t e e m , and how i t i s so t i e d i n w i t h t h e v i o l a t i o n s upon your body t h a t t h i s i l l n e s s seems t o b r i n g a b o u t . " A n i t a a l s o f e e l s a g r e a t d e a l o f f e a r as p a r t o f h e r i l l n e s s e x p e r i e n c e . Going out i n p u b l i c i s one o f the t h i n g s she , a t t i m e s , i s f e a r f u l o f and she e x p r e s s e s : I know i t ' s a b i t w e i r d but when I'm not f e e l i n g w e l l I 'm s c a r e d t o go out anywhere because I never know what ' s g o i n g t o happen, and I p r e f e r t o j u s t a v o i d h a v i n g a n y t h i n g happen. I t h i n k i t ' s sad t h a t I have t h i s new f e a r . She c h a r a c t e r i z e s her l i f e as b e i n g f u l l o f f e a r and f u l l o f g r i e v i n g . "I'm always a f r a i d and I'm always sad f o r h a v i n g t o be so a f r a i d o f l o t s o f s i t u a t i o n s now. I know I ' v e m i s s e d out on a l o t because o f b e i n g a f r a i d . " A n i t a ends by l o o k i n g back on how much of the exc i tement o f teenage y e a r s she l o s t because o f her c o l i t i s , and d i s p l a y s a g r e a t d e a l o f g r i e f as she does t h i s . "I y e a r n f o r my p r e v i o u s w o r l d w i t h o u t f e a r and my h e a l t h y body r a t h e r than t h i s one t h a t has been t a k e n over by c o l i t i s . " W i l l i a m W i l l i a m i s a 2 5 - y e a r - o l d male w i t h C r o h n ' s d i s e a s e . He was d i a g n o s e d a t the age o f 14. He was r e c e i v i n g a n t i - i n f l a m m a t o r y drug t rea tment a t the t ime of h i s p a r t i c i p a t i o n i n t h i s s t u d y and had not had s u r g e r y f o r h i s i l l n e s s . W i l l i a m a p p r a i s e d h i s h e a l t h a t the t ime of the i n t e r v i e w as p o o r . He d e s c r i b e d f e e l i n g "a p a i n " i n h i s abdomina l r e g i o n t h a t . h a d been t h e r e " c o n s i s t e n t l y f o r months ." W i l l i a m ' s s i t u a t i o n began when he f i r s t f e l t " e x o r b i t a n t amounts o f stomach d i s c o m f o r t . " " P e r f e c t l y a f r a i d I was when a l l these w e i r d t h i n g s were happen ing i n my b o d y . " "Because o f a l l the p a i n I was e x p e r i e n c i n g i n my stomach I was unab le t o c o n t i n u e r e g u l a r l y i n s c h o o l , normal e x i s t e n c e was gone ." He f e l t l i k e h i s l i f e had changed o v e r n i g h t . " T h i s t h i n g had taken over my body, I was s e n t t o t h e h o s p i t a l , and n o t h i n g was ever g o i n g t o be t h e same a g a i n . " W i l l i a m ' s d o c t o r immediate ly sent him t o t h e h o s p i t a l . A stomach s p e c i a l i s t t o l d h i s mother t h a t he had C r o h n ' s d i s e a s e , and then h i s mother t o l d h im. What f o l l o w e d was a s e r i e s o f " p a i n f u l , s c a r y , and e v i l t e s t s . " W i l l i a m f e l t l i k e i t wasn' t r i g h t f o r him t o be l i v i n g h i s l i f e i n a h o s p i t a l and undergo ing a l l the se p r o c e d u r e s . • He was s c a r e d o f never knowing what was g o i n g t o happen next o r who was g o i n g t o come and wheel him away f o r a n o t h e r t e s t . He f e l t a lone i n the h o s p i t a l e s p e c i a l l y a t n i g h t t ime when no one was t h e r e t o keep him company. When p e o p l e d i d come t o v i s i t h im, he f e l t l i k e he was "someone f o r them t o f e e l s o r r y f o r . " "I was s c a r e d and everyone f e l t s o r r y f o r me." W i l l i a m was " f e a r f u l " o f h i s " s i t u a t i o n " . "I was s c a r e d o f e v e r y t h i n g t h a t was h a p p e n i n g . " He remembers h i s mother a l s o b e i n g v e r y s c a r e d . H i s mother r e a c t e d t o him d i f f e r e n t l y a f t e r he was d iagnosed w i t h C r o h n ' s d i s e a s e , "I go t s p e c i a l t r e a t m e n t . " "A l o t of e x t r a pampering t h a t t h e n t u r n e d i n t o o v e r p r o t e c t i o n . " W i l l i a m ' s mother t o l d him not t o get angry and t o s t a y ca lm a t a l l t i m e s . "I was supposed t o not ge t u p s e t because i t might b o t h e r my s tomach." He was unsure how t o d e a l w i t h h i s f e e l i n g s when he wasn' t supposed t o somehow acknowledge them. A f t e r W i l l i a m was d iagnosed w i t h C r o h n ' s d i s e a s e , he remembers b e i n g a b l e t o get away w i t h " v a r i o u s t y p e s o f bad b e h a v i o u r . " He r e c a l l s b r e a k i n g h i s m o t h e r ' s l i v i n g room window once because he was mad a t her f o r not a l l o w i n g a f r i e n d t o s t a y o v e r n i g h t on a s c h o o l day . He "faked" t h a t he was r e a l l y upse t about i t . H i s mother comforted him and t h e n a p o l o g i z e d . "In the end I got my way." W i l l i a m s t a t e s t h a t t h i s s i t u a t i o n would have never o c c u r r e d b e f o r e he had C r o h n ' s d i s e a s e . W i l l i a m p o i n t s t o the "many a b u s i v e t e s t s " t h a t he had t o go t h r o u g h as one o f the most d i f f i c u l t e x p e r i e n c e s w i t h h a v i n g C r o h n ' s d i s e a s e . He remembers h a v i n g t o d r i n k " l i q u i d c h a l k " as p a r t o f one o f h i s x - r a y e x a m i n a t i o n s . The l i q u i d made W i l l i a m f e e l nauseous, so he dumped as much as he c o u l d down a s i n k when no one was l o o k i n g . He f e l t " invaded by t h e s e t e s t s " but a t the same t ime he f e l t " g u i l t y " because he w a s n ' t f u l l y c o o p e r a t i n g w i t h the m e d i c a l s t a f f . He remembers b e i n g l e f t a lone i n h o s p i t a l c o r r i d o r s f o r l o n g p e r i o d s o f t ime w h i l e w a i t i n g f o r more t e s t s . W i l l i a m i n i t i a l l y f e l t " l o n e l y " but then came t o wi sh t h a t p e o p l e would l e a v e him a l o n e so he w o u l d n ' t have t o go t h r o u g h anymore. W i l l i a m ' s mother would take him out f o r h i s f a v o u r i t e b r e a k f a s t a f t e r the t e s t s and he f e l t a p p r e c i a t i v e but d i d n ' t r e a l l y take p l e a s u r e from i t , "Thank-you , but I j u s t c o u l d never f u l l h e a r t i l y enjoy them anymore." "The enjoyment o f e a t i n g was l o s t " because o f h i s d i s e a s e d s tomach. He misses "being a b l e t o enjoy f o o d . " W i l l i a m saw a c o u n s e l l o r a t the h o s p i t a l who h e l p e d him t a l k about h i s i l l n e s s and a l l he had l o s t because o f i t . He f e e l s t h i s was v e r y b e n e f i c i a l i n h e l p i n g him cope w i t h t h e C r o h n ' s d i s e a s e , as he s t a t e s : One o f the t h i n g s t h a t I d i s c o v e r e d t h r o u g h t a l k i n g w i t h t h i s c o u n s e l l o r i s t h a t I c a r r y around a l o t o f f e a r because I never know when I am g o i n g t o ge t s i c k , f e e l p a i n and have t o take t ime o f f o f work. I never know when my i l l n e s s i s g o i n g t o throw a wrench i n t o my l i f e . He f e e l s t h a t c o u n s e l l i n g has h e l p e d him t o d e a l w i t h some o f t h e s e f e a r s . W i l l i a m a l s o remembers h a v i n g a male n u r s e who p l a y e d a major r o l e i n h e l p i n g make h i s h o s p i t a l s t a y " b e a r a b l e . " "The whole h o s p i t a l e x p e r i e n c e was v e r y s c a r y " f o r him but the c o u n s e l l o r a l o n g w i t h t h i s p a r t i c u l a r nurse a c t e d as a f r i e n d and h e l p e d him t o f e e l " s a f e r . " "They a l s o h e l p e d me t o q u i t f e e l i n g s o r r y f o r m y s e l f l i k e everyone e l s e was." W i l l i a m "hated" h a v i n g people f e e l s o r r y f o r h i m . He made a d e c i s i o n then t o h i d e h i s d i s e a s e from o t h e r s , "Don' t t a l k about i t , then peop le won't f e e l s o r r y f o r y o u . " "Having p e o p l e f e e l s o r r y f o r me a l l the t i m e , caused me t o f e e l s o r r y f o r m y s e l f . " "You d o n ' t f e e l v e r y good about y o u r s e l f w i t h a l l these peop le f e e l i n g s o r r y f o r y o u . " A l t h o u g h W i l l i a m d o e s n ' t d i s c u s s h i s i l l n e s s v e r y much, t o p r e v e n t p e o p l e from f e e l i n g s o r r y f o r h im, he b e l i e v e s t h a t h i s C r o h n ' s d i s e a s e s t i l l c o n t r o l s h i s l i f e and h i s r e l a t i o n s h i p s w i t h o t h e r s and he r e f l e c t s f u r t h e r on t h i s : Even though I t r y t o keep i t under l o c k and k e y , i t d o e s n ' t p r e v e n t i t from coming i n t o my l i f e and t a k i n g over some s o c i a l s i t u a t i o n . I t r e a l l y a f f e c t s me i n a b i g way and has r e a l l y shaped my p e r s o n . He s t a t e s t h a t h i s d i s e a s e c o n t r o l s him and has made him who he i s t o d a y . " T h i s d i s e a s e has taken o v e r and i s c o n t r o l l i n g a huge p o r t i o n o f my l i f e . I am who I am because o f C r o h n ' s d i s e a s e . " W i l l i a m l i k e s who he i s but he hates some o f t h e d i f f i c u l t t i m e s he e x p e r i e n c e s w i t h h a v i n g C r o h n ' s d i s e a s e . He d e s p i s e s the p a i n t h a t ' s a s s o c i a t e d w i t h h i s i l l n e s s and he h a t e s the hours spent i n the bathroom. He h a t e s no t e n j o y i n g good f o o d , "Food i s now j u s t something I have t o consume i n o r d e r t o s u r v i v e . My whole p e r s p e c t i v e on food and so many o t h e r t h i n g s i n my l i f e have s e v e r e l y c h a n g e d . " S i n c e b e i n g d iagnosed w i t h C r o h n ' s d i s e a s e numerous changes have o c c u r r e d i n W i l l i a m ' s l i f e . He has e x p e r i e n c e d many l o s s e s and i s j u s t now coming t o terms w i t h some o f them. He i s s l o w l y f a c i n g the f a c t t h a t he has l o s t h i s h e a l t h y body and w i l l now l i v e w i t h C r o h n ' s d i s e a s e f o r the r e s t o f h i s l i f e . However, W i l l i a m ends by s t a t i n g t h a t , "I c r y a l o t and I'm s c a r e d s t i f f but I must d e a l w i t h t h e changes and the l o s s e s as they come, s t a y as a c t i v e as I c a n , and hope t h a t my l i f e t u r n s out o k a y . " He a t t empts t o l i v e one day a t a t ime a l t h o u g h he s t i l l f e e l s a g r e a t d e a l o f f e a r about h i s f u t u r e and a l l the changes he i s t o f a c e . E l a i n e E l a i n e i s a 2 3 - y e a r - o l d female w i t h c o l i t i s . She was d i a g n o s e d a t the age o f 22. She was r e c e i v i n g s t e r o i d t r e a t m e n t a t the t ime of her p a r t i c i p a t i o n i n t h i s s t u d y and had bowel r e s e c t i o n s u r g e r y t w i c e f o r h e r i l l n e s s up t o t h e t i m e o f t h e i n t e r v i e w . E l a i n e ' s h e a l t h a t the t ime was not good as she d e s c r i b e d how she has "never gone i n t o r e m i s s i o n " and f e e l s " s i c k most o f the t i m e . " E l a i n e ' s s i t u a t i o n began a f t e r her 22nd b i r t h d a y as she began t o f e e l v e r y s i c k . She became "genu ine ly anx ious" because she knew o f someone who had c o l i t i s and h e r symptoms were v e r y s i m i l a r . E l a i n e ' s "worst f e a r s came t r u e " as h e r d o c t o r t o l d her t h a t she d i d indeed have c o l i t i s , "I was f r i g h t f u l l y s c a r e d . " A l o n g w i t h f e a r , E l a i n e l i v e s w i t h many o t h e r emot ions caused by h e r c o l i t i s . However, the p r i m a r y one she ment ions i s f e a r . She s t a t e s t h a t , " i t ' s been a y e a r o f f e a r never knowing when I'm g o i n g t o f e e l symptoms, and i t s c a r e s me because I s t i l l h a v e n ' t gone i n t o r e m i s s i o n . " A l t h o u g h E l a i n e i s not i n r e m i s s i o n and f e e l s s i c k , she f o r c e s h e r s e l f t o c o n t i n u e l i f e t a s k s i n c l u d i n g work. She has c o n t i n u e d work ing a l t h o u g h i t may not be t h e b e s t c h o i c e f o r h e r h e a l t h , but she f i n d s t h a t a c c e p t i n g h e r i l l n e s s and t h e l i m i t a t i o n s i t puts upon her i s d i f f i c u l t . "I know I p r o b a b l y s h o u l d n ' t be working as much as I do but I f i n d i t h a r d j u s t t o s top because o f my s t u p i d d i s e a s e . I d o n ' t want i t t o l i m i t e v e r y t h i n g I do i n my l i f e . " E l a i n e l i v e s w i t h "constant worry" r e g a r d i n g t h e l i m i t a t i o n s c o l i t i s may p l a c e upon h e r , e s p e c i a l l y a t h e r j o b . She w o r r i e s about whether she w i l l make i t t h r o u g h t h e day w i t h o u t g e t t i n g s i c k , "There i s the c o n s t a n t worry o f i f I w i l l be okay t o make i t t o work, through work, t h e day e t c . " She s t a t e s t h a t , "the c o n s t a n t not knowing i s t h e wors t a s p e c t o f h a v i n g c o l i t i s . " "The not knowing i s t h e main cause o f the f e a r and a n x i e t y . " " W i l l I make i t t h r o u g h the day w i t h o u t g e t t i n g s i c k , w i l l I make i t t h r o u g h t h e day w i t h o u t c a u s i n g a scene , w i l l I make i t t h r o u g h t h e day w i t h o u t everyone f i n d i n g out t h a t I have a c h r o n i c i l l n e s s . " She s t a t e s t h a t a l l the worry uses up what l i t t l e energy c o l i t i s l e a v e s and then h a r d l y any energy i s l e f t f o r l i f e t a s k s , such as work. T h i s causes a g r e a t d e a l o f f r u s t r a t i o n f o r h e r as she t e l l s o f h a v i n g one c o n c e r n a f t e r a n o t h e r . E l a i n e f i n d s a l l t h i s w o r r y i n g v e r y t i r i n g and v e r y h a r d . E l a i n e found l i f e so much e a s i e r b e f o r e h a v i n g c o l i t i s . She c o u l d use her e n e r g i e s on l i f e and not on w o r r y i n g about an i l l n e s s . She saw h e r s e l f as much h a p p i e r b e f o r e h a v i n g c o l i t i s and e v e r y t h i n g i n l i f e was e a s i e r . E l a i n e g r i e v e s t h e "damage done" t o the e a s i e r l i f e she once h a d . She now f i n d s e v e r y t h i n g h a r d e r and t h i s makes h e r "angry and v e r y s a d . " H a v i n g c o l i t i s has brought about an as sor tment o f l o s s e s i n which E l a i n e g r i e v e s o v e r . Loss o f a c t i v i t i e s t h a t brought her p e r s o n a l s a t i s f a c t i o n i s one o f t h o s e l o s s e s she p o i n t s t o : I c o n s t a n t l y f e e l unhappy when I contemplate my l i f e t h a t I had and a l l the fun a c t i v i t i e s t h a t I d i d and how i t i s now dead. E x i s t e n c e was so much e a s i e r and g r a t i f y i n g b e f o r e I got t h i s d e p l e t i n g i l l n e s s and i t r e a l l y i n f u r i a t e s me. E l a i n e ' s performance a t work makes her angry as i t i s g r e a t l y h i n d e r e d by c o l i t i s , "As a consequence o f my c o n d i t i o n my work s u f f e r s q u i t e a b i t . " A l o n g w i t h anger she a l s o f e e l s sad when she t h i n k s about the l o s s o f h e r n o r m a l l y good j o b per formance , "I f e e l d e p r e s s e d about my w o r k . " She f i n d s work l o n g and h a r d . "I d o n ' t know how much l o n g e r I can do as much working as I am d o i n g now." "Constant u n c e r t a i n t y " a r e two common words i n E l a i n e ' s l i f e , "not what t o do now but more what w i l l I be a b l e t o d o . " "Now I f e e l dazed and s c a r e d because I d o n ' t know what t o do w i t h my l i f e now t h a t I have c o l i t i s . " She i s u n c e r t a i n how one i s supposed t o l i v e l i f e w i t h c o l i t i s . T h i s q u e s t i o n causes f e e l i n g s o f " fear and a n x i e t y " . "I'm s c a r e d because I d o n ' t know what I am supposed t o be about s i n c e l i v i n g w i t h c o l i t i s , heck I d o n ' t even know how t h i s d i s e a s e got i n my body ." E l a i n e t h e n goes on t o t a l k about p o s s i b l e causes o f h e r i l l n e s s . She wonders i f maybe she w o r r i e d t o o much as a c h i l d and perhaps t h a t brought about her i l l n e s s . However, she doubts t h i s as remembers h a v i n g a v e r y h e a l t h y and happy c h i l d h o o d . E l a i n e i s confused about the cause o f h e r i l l n e s s . She r e c o g n i z e s t h a t her w o r r y i n g was not any more e x a g g e r a t e d t h a n anybody e l s e ' s she knew and t h i s i s c o n f u s i n g . She wonders why she s h o u l d get c o l i t i s from the normal amount o f w o r r y i n g t h a t she d i d . E l a i n e spends t ime t h i n k i n g about o t h e r p o s s i b l e causes o f h e r i l l n e s s . She ponders her p a s t h a b i t o f p r o c r a s t i n a t i n g and q u e s t i o n s whether t h a t may have caused s t r e s s , and i n t u r n caused her d i s e a s e . However, i n t h e same b r e a t h she doubts t h a t the s t r e s s she had i n h e r l i f e b e f o r e h a v i n g c o l i t i s c o u l d have caused t h i s major i l l n e s s , and the symptoms t h a t she now has t o d e a l w i t h . E l a i n e c o n t i n u e s t o wonder about cause and ponders her d i e t . However, t h a t t o o i s a "dead end" because she was v e r y c a r e f u l w i t h h e r h e a l t h and h e r e a t i n g h a b i t s . E l a i n e remembers b e i n g v e r y h e a l t h c o n s c i o u s . She r e c a l l s e a t i n g h e a l t h y and e x e r c i s i n g r e g u l a r l y b e f o r e b e i n g d i a g n o s e d w i t h c o l i t i s . She f e e l s a g r e a t d e a l o f f r u s t r a t i o n i n not knowing the cause o f her i l l n e s s . E l a i n e p a r t i c i p a t e d i n many s p o r t s b e f o r e h a v i n g c o l i t i s and was v e r y p h y s i c a l l y a c t i v e . However, " . . . because t h e r e h a s , as o f y e t , been no m e d i c a l cause f u l l y found I s t i l l wonder i f I , i n some way as a c h i l d , caused m y s e l f t o ge t c o l i t i s and t h i s makes me f e e l g u i l t y . " A l o n g w i t h f e e l i n g g u i l t y , E l a i n e i s angry t h a t she has d e v e l o p e d c o l i t i s . She f e e l s angry a t h e r s e l f . She s t a t e s t h a t h e r " s e l f - w o r t h has d i m i n i s h e d g r e a t l y s i n c e b e i n g d i a g n o s e d w i t h c o l i t i s and t h i s i s p r o b a b l y p a r t l y due t o b e i n g angry a t m y s e l f a l o t o f the t i m e . " E l a i n e ' s d i m i n i s h i n g s e l f - w o r t h i s p a r t l y due t o her " g u i l t and anger" a t s e l f f o r p o s s i b l y c a u s i n g her i l l n e s s . She does not l i k e the thought t h a t she may have caused h e r c o l i t i s because she then has t o see h e r s e l f as somehow e m o t i o n a l l y o r p s y c h o l o g i c a l l y u n s t a b l e . A l o n g w i t h g e t t i n g angry a t h e r s e l f she a l s o ge t s angry when o t h e r p e o p l e a l l u d e t o the i d e a t h a t she might have caused her d i s e a s e , "When anyone, seems t o ment ion t h a t I p r o b a b l y got s i c k because I p u t too much s t r e s s on m y s e l f , I get d e f e n s i v e and a n g r y . " E l a i n e c o n t i n u e s : I sometimes f e e l l i k e I am somehow t o blame f o r h a v i n g c o l i t i s because t h e r e r e a l l y i s nobody e l s e t o blame : and I become uneasy around peop le t h a t sugges t t h a t I am t o blame f o r h a v i n g i t . T h i s makes me f e e l l i k e I am a r e a l dud . Anger d i r e c t e d towards o n e s e l f , s e l f - b l a m e , and f e e l i n g blamed by o t h e r s a r e c o n t r i b u t i n g f a c t o r s t o a l o w e r i n g o f E l a i n e ' s s e l f - e s t e e m . E l a i n e has d i f f i c u l t y t a l k i n g w i t h o t h e r p e o p l e about h e r i l l n e s s . T a l k i n g about her i l l n e s s b r i n g s up f e e l i n g s o f f e a r t h a t she does not want t o show o r e x p e r i e n c e . "I know I have a r e a l h a r d t ime t a l k i n g about my c o n d i t i o n w i t h o u t g e t t i n g e m o t i o n a l , e s p e c i a l l y s c a r e d . " E l a i n e emphasizes the p a r t t h a t f e a r p l a y s i n h e r l i f e . "I am s c a r e d o f my own body because i t has been a s s a u l t e d by some f o r e i g n d i s e a s e . " She speaks o f the v i o l a t i o n t h a t she f e e l s from h e r d i s e a s e and how t h i s i s a huge c o n t r i b u t i n g f a c t o r t o h e r f e e l i n g s o f f e a r , "It has taken over my body, f i l l e d me w i t h f e a r and changed my l i f e f o r e v e r . " The "changes" t o E l a i n e ' s l i f e s i n c e b e i n g d i a g n o s e d w i t h c o l i t i s have been "scary and overwhe lming ." She has had t o go t h r o u g h many "new and d i f f e r e n t e x p e r i e n c e s . " She i s u n c e r t a i n whether she has f u l l y accepted t h a t she has t o make changes i n her l i f e i n o r d e r t o l i v e w i t h c o l i t i s . However, E l a i n e s t a t e s t h a t more and more she i s t a k i n g h e r i l l n e s s i n t o account when making l i f e d e c i s i o n s . A t t h e moment she i s f a c e d w i t h a d e c i s i o n around c a r e e r and i s c o n s i d e r i n g what l i m i t a t i o n s her i l l n e s s may p l a c e upon h e r i n t h i s a r e a . E l a i n e e x p e r i e n c e s changes t h a t have been caused by h e r d i s e a s e as b e i n g v e r y much out o f her c o n t r o l . E l a i n e s t a t e s t h a t h e r c o l i t i s t akes away some of the power she has over t h e p a t h she wants her l i f e t o t a k e . She t a l k s o f the many a s p e c t s o f d e c i s i o n - m a k i n g t h a t she now f e e l s a r e out o f h e r c o n t r o l . Her c o l i t i s seems t o l i m i t many p a r t s o f h e r l i f e and she f e e l s t h a t she has t o adapt t o t h i s c o n t r o l i n some way, "I t seems l i k e t h e r e i s so l i t t l e command over y o u r own body and p r e t t y much over your l i f e . " C o l i t i s l i m i t s E l a i n e ' s a b i l i t y t o p a r t a k e i n many e n j o y a b l e a c t i v i t i e s , and she o f t e n has t o say "no" t o a c t i v i t i e s t h a t she takes p l e a s u r e from. She g r i e v e s over t h e l o s s o f these e n j o y a b l e a c t i v i t i e s and f i n d s t h a t t h i s l o s s i s one o f the p r i m a r y n e g a t i v e e f f e c t s o f h a v i n g t h i s c h r o n i c i l l n e s s . A l o n g w i t h these g r a t i f y i n g a c t i v i t i e s b e i n g more d i f f i c u l t t o p a r t i c i p a t e i n , she s t a t e s t h a t a n o t h e r n e g a t i v e e f f e c t o f her i l l n e s s i s t h a t l i f e t a s k s a r e a l s o so much h a r d e r . E l a i n e ' s r e s p o n s i b i l i t i e s i n l i f e have become much more l a b o r i o u s and s t r e s s f u l . One o f the l i f e t a s k s t h a t she f i n d s now f i n d s more d i f f i c u l t i s work. E l a i n e f i n d s working v e r y h a r d w i t h h a v i n g c o l i t i s , "Going t o work i s n ' t an easy t a s k . " She then s t a t e s t h a t , " c o l i t i s causes me t o f e e l h i g h l e v e l s o f a n x i e t y a t work", "I ge t v e r y a n x i o u s when I'm a t work and t h a t ' s the main t h i n g t h a t makes w o r k i n g d i f f i c u l t . " E l a i n e ends w i t h s t a t i n g t h a t the two most s e r i o u s s i d e e f f e c t s o f c o l i t i s , thus f a r , have been h e r l i m i t e d a b i l i t y t o do the t h i n g s she e n j o y s and h e r l a c k o f accompl ishments a t work because o f t h e a d v e r s e e f f e c t s i t w i l l have on the r e s t o f her l i f e o p t i o n s . Amy Amy i s a 2 5 - y e a r - o l d female w i t h C r o h n ' s d i s e a s e . She was d i a g n o s e d a t the age o f 16. She was r e c e i v i n g a n t i - i n f l a m m a t o r y d r u g t rea tment a t the t ime o f her p a r t i c i p a t i o n i n t h i s s t u d y and had not had s u r g e r y f o r h e r i l l n e s s . Amy a p p r a i s e d h e r h e a l t h a t the t ime of the i n t e r v i e w as no t good . She d e s c r i b e d how she l a c k e d energy and g e n e r a l l y d i d n ' t f e e l w e l l . Amy was "devastated" when she was t o l d t h a t she would have t o l i v e w i t h C r o h n ' s d i s e a s e f o r the r e s t o f h e r l i f e , " T h i s was no s i m p l e s i c k n e s s , t h i s was a c h r o n i c i l l n e s s which i n v o l v e s l i f e t i m e t r e a t m e n t . " A f t e r she was d i a g n o s e d , she was f a c e d w i t h the d e c i s i o n o f whether t o go on s t e r o i d s o r n o t , "Did I want t o l i v e w i t h the a g o n i z i n g symptoms o f t h e d i s e a s e , the c o n s t a n t f e a r o f a p o s s i b l e o c c u r r e n c e o r r i s k t h e e n d l e s s l i s t o f severe s i d e e f f e c t s o f s t e r o i d s . " She chose t o r e f u s e the s t e r o i d s her d o c t o r had o f f e r e d and seek out o t h e r forms of t r e a t m e n t . Amy had a l o t o f d i f f i c u l t y s e a r c h i n g out r e l e v a n t i n f o r m a t i o n on h e r c o n d i t i o n and o t h e r p o s s i b l e methods o f t r e a t m e n t . No one seemed t o be a b l e t o answer h e r q u e s t i o n s about how t h i s d i s e a s e was g o i n g t o e f f e c t her l i f e and i f t h e r e were any o t h e r t rea tment o p t i o n s a p a r t from t a k i n g s t e r o i d s . She p o i n t s t o the importance o f h a v i n g i n f o r m a t i o n on h e r C r o h n ' s d i s e a s e , "Without the knowledge o f my d i s e a s e I have no c o n t r o l and I have so l i t t l e c o n t r o l over what happens ." Amy ment ions l o s s o f energy and g e n e r a l good h e a l t h as one o f t h e t h i n g s she now has l i t t l e c o n t r o l o v e r , "I have l o s t so much c o n t r o l s i n c e C r o h n ' s d i s e a s e has t a k e n over my l i f e , and I r e a l l y am angry and sad about t h i s . " She s t a t e s t h a t : I am o n l y now b e g i n n i n g t o u n d ers tan d how l i t t l e i s t r u l y known about my c o n d i t i o n and t h e numerous changes t h a t I am t o f a c e i n my l i f e t h a t are b a s i c a l l y g o i n g t o happen t o me w i t h o u t my a b i l i t y t o r e g u l a t e them. The l a c k o f c o n t r o l she now f e e l s over h e r l i f e has caused h e r t o become more r e c l u s i v e and escape somewhat from h e r l i f e . Amy f e e l s t h a t she has become v e r y i n t r o v e r t e d s i n c e b e i n g d i a g n o s e d w i t h C r o h n ' s d i s e a s e , "The s w i t c h t o i n t r o v e r s i o n I know, has a l o t t o do w i t h a l l t h e a n x i e t y I have i n s i d e o f me, I never know when I'm g o i n g t o ge t s i c k and I have no power over when and where i t w i l l h a p p e n . " Amy d i s c u s s e s o t h e r p o s s i b l e reasons f o r h e r more r e c l u s i v e l i f e s t y l e , "Also I t h i n k the i n t r o v e r s i o n has a l o t t o do w i t h the way I f e e l about myse l f as a p e r s o n , I 'm s i c k and i t ' s h a r d t o l i k e myse l f so I go i n t o t h i s s h e l l and h i d e . " One of the ways she a v o i d s g o i n g i n t o t h i s s h e l l i s t o ge t a n g r y . Amy f e e l s rage towards h e r i l l n e s s because o f what i t has done t o her w o r l d , "I am so p i s s e d o f f about t h e way t h i s d i s e a s e has f o r c e d i t s e l f i n t o my body and i n t o my l i f e . " " I ' v e become a c t u a l l y d e s p e r a t e and a t t h e same t i m e g e n u i n e l y e n r a g e d . " She t a r g e t s her d i s e a s e and i t s s i d e e f f e c t s as the reasons f o r her anger . Amy ends a t t h i s p o i n t by p e r c e i v i n g t h a t the one o b j e c t i v e t h a t she has i s t o p u t e f f o r t i n t o t r y i n g t o express her anger and o t h e r f e e l i n g s she has towards her C r o h n ' s d i s e a s e i n h e a l t h y ways, "I want t o s t a y h e a l t h y e m o t i o n a l l y and the way I can do t h a t i s by t r y i n g t o express as many of the emot ions t h a t a r e i n s i d e me i n a h e a l t h y way, i n c l u d i n g r a g e . " T e r e s a T e r e s a i s a 2 5 - y e a r - o l d female w i t h c o l i t i s . She was d i a g n o s e d a t the age o f 15. She was not r e c e i v i n g any t y p e o f d r u g t r e a t m e n t a t the t ime of her p a r t i c i p a t i o n i n t h i s s t u d y . T e r e s a had two d i f f e r e n t s u r g e r i e s f o r h e r i l l n e s s . The f i r s t one was an i l e o s t o m y w i t h an e x t e r n a l bag . W i t h t h e second one she was g i v e n an i n t e r n a l bag . T e r e s a a p p r a i s e d her h e a l t h a t the t ime of the i n t e r v i e w as good. She d e s c r i b e d her s u r g e r i e s as r e l i e v i n g most o f h e r p h y s i c a l symptoms. T e r e s a ' s s i t u a t i o n began when she s t a r t e d f e e l i n g s i c k a t the age o f 15, w h i l e a t t e n d i n g grade 10, however, "My d o c t o r t o l d me t h a t , " i t ' s j u s t i n your head". So what was I supposed t o do? I t r i e d to i g n o r e i t and c o n t i n u e d on w i t h s t a r t i n g grade 11 the f o l l o w i n g f a l l . " She t h e n began f e e l i n g r e a l l y u n h e a l t h y d u r i n g the f i r s t month of grade 11. " F e e l i n g s i c k was s cary" f o r T e r e s a , e s p e c i a l l y when she d i d n ' t know why she was f e e l i n g so s i c k . She was g e t t i n g w o r r i e d about f e e l i n g so s i c k so she went t o seek a second o p i n i o n . A f t e r many v i s i t s and s e v e r a l d i f f e r e n t t e s t s , t h e second d o c t o r d iagnosed h e r w i t h c o l i t i s . The whole e x p e r i e n c e o f g o i n g t o the h o s p i t a l t o see a d o c t o r and have a l l t h e s e t e s t s was new f o r T e r e s a . She was never r e a l l y s i c k b e f o r e so " a l l t h i s was a b i g t h i n g " t o h e r . T e r e s a has an "ongoing s t r u g g l e " i n r e g a r d s t o t h e o r i g i n s o f her d i s e a s e and she f i n d s t h i s s t r u g g l e d i f f i c u l t , "The f i g h t f o r me, w i t h i n m y s e l f , t o d e c i d e on t h e o r i g i n s o f the d i s e a s e , has been tough because you c a n ' t even ge t m e d i c a l peop le t o agree on i t s c a u s e . " The m e d i c a l p r o f e s s i o n makes the s e a r c h f o r a cause d i f f i c u l t f o r h e r because t h e y themse lves cannot agree on the o r i g i n s . She remembers when she f i r s t r e c e i v e d her d i a g n o s i s from the second d o c t o r and how much of a "huge shock" i t was, "then he c o u l d n ' t even r e a l l y t e l l me what caused i t . " "One day , a l l o f a sudden, I was d iagnosed w i t h c o l i t i s and no one knew how o r why." T e r e s a remembers "despera t ion" over the p a i n she was f e e l i n g i n her stomach caused by her c o l i t i s . "Being 15- y e a r s - o l d and s t i l l c r y i n g and screaming f o r hours w a i t i n g f o r the p a i n t o s t o p . " "It f e l t l i k e my w o r l d was c r u m b l i n g i n s i d e me." T e r e s a ' s i l l n e s s was severe from the o u t s e t and i t s t a y e d s e v e r e a l l the way through u n t i l she was 1 9 - y e a r s - o f age . A t 16 she was g i v e n an i l e o s t o m y and an e x t e r n a l b a g . She had t h i s bag throughout her 16th and 17th y e a r . T e r e s a remembers how i m p o r t a n t outward appearances were a t t h a t age and how she was c o n s i d e r e d v e r y d i f f e r e n t because o f h e r b a g . A t 1 8 - y e a r s - o f - a g e she was g i v e n an i n t e r n a l bag and by 19 most o f h e r symptoms had s u b s i d e d . T e r e s a s t a t e s t h a t she i s s t i l l v e r y h i g h l y a f f e c t e d from h e r i l l n e s s , the h o s p i t a l , and those o p e r a t i o n s . One e x p e r i e n c e caused by h e r c o l i t i s t h a t has r e a l l y had a l a s t i n g e f f e c t on her was the t imes t h a t she spent i n a h o s p i t a l f o r c h r o n i c p a t i e n t s . She spent anywhere from 1/3 t o 2 / 3 ' s o f the y e a r , every o t h e r y e a r , between 15 1/2 y e a r s - o f - a g e and 19, i n t h a t h o s p i t a l . T e r e s a s t a t e s t h a t she spent an average o f 2 / 3 ' s o f a 4 y e a r p e r i o d o f h e r l i f e i n t h e h o s p i t a l because o f h a v i n g c o l i t i s . Her e x p e r i e n c e i n t h a t h o s p i t a l has l e f t a l a s t i n g i m p r e s s i o n on h e r . T e r e s a s t a t e s t h a t some of the most " in tense" e x p e r i e n c e s o f h e r c o l i t i s tpok p l a c e i n the h o s p i t a l . She a g a i n emphasizes the importance o f t h i s i n h e r e x p e r i e n c e . She remembers t h e r e b e i n g v e r y r e s t r i c t e d v i s i t i n g h o u r s i n t h e h o s p i t a l and she r e c a l l s b e i n g " i n c r e d i b l y l o n e l y and sad" because h e r f a m i l y was o n l y a l l o w e d t o v i s i t d u r i n g c e r t a i n h o u r s . T e r e s a g r i e v e s over the l o s t t ime a t home w i t h h e r f a m i l y . "It was l i k e I wasn' t r e a l l y p a r t o f my f a m i l y ' s home because I was b a s i c a l l y l i v i n g i n t h e h o s p i t a l . " A l o n g w i t h g r i e v i n g over the l o s t t ime w i t h f a m i l y , T e r e s a s t a t e s t h a t she a l s o g r i e v e s a l o t o v e r t h e l o s s o f h e r body t h a t she had b e f o r e c o l i t i s , "When I t h i n k about my body I j u s t c u r l up and r o c k and c r y f o r l o n g p e r i o d s o f t i m e . I j u s t want t o escape from a l l t h a t p a i n and f e a r and have my o l d body and s e l f b a c k . " She longs f o r the s e l f t h a t d i d not f e e l a l l t h i s g r i e f and a n x i e t y . T e r e s a emphasizes the l a r g e amount o f d r e a d she c a r r i e s around w i t h her because o f never knowing when she was g o i n g t o f e e l some s o r t o f i l l n e s s symptom, "I s t i l l f e e l i t , a l l t h a t f e a r o f never knowing when I was g o i n g t o g e t s i c k , and i t ' s h a r d t o get r i d o f i t . That f e e l i n g o f f e a r was so i n t e n s e . " She f e e l s t h a t a l o n g w i t h u n c e r t a i n t y about symptom r e l a p s e s the v i o l a t i o n s upon her t h a t h e r i l l n e s s caused has a l s o c r e a t e d a l o t o f the f e a r she h o l d s i n s i d e , "another p o r t i o n o f t h i s apprehens ion and a n x i e t y i s my body r e v e r b e r a t i n g from the v i o l a t i o n s . " T e r e s a a l s o f e e l s v i o l a t e d by a l l the p i l l s t h a t had t o e n t e r h e r body i n o r d e r t o t r e a t her c h r o n i c i l l n e s s . She was on new p i l l programs every y e a r . She f e e l s shame because o f t h e way h e r and o t h e r s have had t o t r e a t h e r body, " R o l l i n g t h r o u g h l i f e i s c h a r a c t e r i z e d by a f a i r amount o f h u m i l i a t i o n , d i s g u s t about m y s e l f , my body, and a l l t h e d r u g s I had t o pump i n t o i t , and I 'm o n l y now g e t t i n g o v e r i t . " T e r e s a f e e l s her body i s " m a n i f e s t i n g a d i s t r e s s e d p e r s o n " and a p e r s o n t h a t f e e l s v i o l a t e d , s c a r e d and u n s a f e . She had a h a r d t ime f e e l i n g s a f e w i t h h e r c o l i t i s , "People had a d i f f i c u l t t ime u n d e r s t a n d i n g t h a t I never f e l t s e c u r e e s p e c i a l l y a f t e r my s u r g e r y . I had been v i o l a t e d and I was s c a r e d . " When T e r e s a woke up from her s u r g e r y and she saw t h e l o n g s c a r down h e r e n t i r e stomach she remembers f e e l i n g i n shock . She sees her s c a r as p l a y i n g a l a r g e p a r t i n h e r l i f e e x p e r i e n c e s . She f e e l s "maimed" and i s s t i l l " p a r t l y i n shock about i t . " T e r e s a s t a t e s t h a t she i s no l o n g e r " i n t a c t . " She f e e l s t h a t a l o t o f her e x p e r i e n c e s have t o do w i t h t h e s u r g e r i e s , her s c a r , and how these t h i n g s have a f f e c t e d h e r r e l a t i o n s h i p t o her body. When T e r e s a was seventeen she q u i t h i g h s c h o o l because o f h e r i l l n e s s . She was i n grade 1 2 a t t h a t t i m e . She remembers d o i n g w e l l i n E n g l i s h 1 2 and f a i l i n g e v e r y t h i n g e l s e . T e r e s a s t a t e s t h a t she c o u l d n ' t c a r e about d o i n g w e l l i n s c h o o l . She d i d not b e l i e v e she had any s o r t o f f u t u r e ahead o f h e r , "I f e l t t h a t I wasn' t r e a l l y s t r o n g enough t o have much c o n t r o l over my f u t u r e so why even c a r e about s c h o o l . " She s t a t e s t h a t she i s i n t e l l i g e n t but because o f h e r c o l i t i s she has been unable t o pursue h i g h e r e d u c a t i o n i n a c o n s i s t e n t f a s h i o n . "I c o u l d n ' t d e a l w i t h s c h o o l . I t was o n l y making apparent how w o r t h l e s s I a l r e a d y f e l t . " T e r e s a ' s d i s e a s e has made her f e e l "devalued" and has g r e a t l y d i m i n i s h e d her sense o f s e l f - w o r t h . She remembers a lways f e e l i n g l i k e an " o u t s i d e r . " "I f e l t l i k e a l o s e r and how h a r d t h a t made my l i f e . " She s t a t e d t h a t she was s tunned t h a t anybody would want t o hear s t o r i e s about h e r e x p e r i e n c e s i n l i v i n g w i t h c o l i t i s . T e r e s a ends by remembering how much e a s i e r l i f e was b e f o r e d e v e l o p i n g c o l i t i s . She longs f o r her p r e v i o u s w o r l d and h e r h e a l t h y body and h e a l t h y view of s e l f b e f o r e c o l i t i s . H e l e n H e l e n i s a 2 3 - y e a r - o l d female w i t h c o l i t i s . She was d i a g n o s e d a t the age o f 19. She was r e c e i v i n g s t e r o i d t r e a t m e n t a t the t ime o f h e r p a r t i c i p a t i o n i n t h i s s t u d y . H e l e n had not had s u r g e r y f o r her i l l n e s s . H e l e n a p p r a i s e d h e r h e a l t h a t t h e t ime o f the i n t e r v i e w as not good . She d e s c r i b e d h e r s e l f as "very low on energy" and f e e l i n g " s i c k . " H e l e n ' s s i t u a t i o n s t a r t e d when she was on h o l i d a y s w i t h h e r f a m i l y . She was 1 9 - y e a r s - o l d and began h a v i n g a l o t o f "b lood i n h e r bowel movements." Her f a m i l y took h e r t o a d o c t o r and he d iagnosed her w i t h c o l i t i s . H e l e n s t a t e s t h a t h e r l i f e became a l o t more d i f f i c u l t from t h a t moment on . H e l e n had never heard o f c o l i t i s p r i o r t o her own d i a g n o s i s , "I d i d n ' t know what i t was and t h a t was a b i g t h i n g . " "It was an e n t i r e l y unknown i l l n e s s " t o h e r , "and t h e n came a l l the unknown t e s t s . " The t e s t e x p e r i e n c e f o r h e r was " r e a l l y s c a r y " because she "had never gone t h r o u g h a n y t h i n g l i k e t h a t b e f o r e . " He len t a l k e d t o some o t h e r p e o p l e t h a t had c o l i t i s and been through many of the same p r o c e d u r e s and they s c a r e d her because they were t e l l i n g h e r "about a l o t o f h o r r i b l e t h i n g s " t h a t she was g o i n g t o be g o i n g t h r o u g h . I t was "scary" f o r her t o hear a l l t h a t i n f o r m a t i o n as she i n d i c a t e s : I was i n a room w i t h two o t h e r s t h a t had c o l i t i s and been t h r o u g h i t a l l and they s c a r e d me because t h e y were s a y i n g " t h i s i s what ' s g o i n g t o happen t o y o u , y o u ' r e g o i n g t o have s u r g e r i e s and be on s t e r o i d s f o r t h e r e s t o f your l i f e " and a l l t h i s o t h e r s t u f f . H e l e n ' s f i r s t t rea tment was through the use o f s t e r o i d s . Her i n i t i a l e x p e r i e n c e w i t h the s t e r o i d s was p o s i t i v e because they made her f e e l b e t t e r . However, she "began t o f e e l anxious" as the l e n g t h o f t ime she was on s t e r o i d s i n c r e a s e d , "I was on s t e r o i d s f o r a l o n g t i m e , so t h a t d i d n ' t make me f e e l v e r y good. I t f e l t l i k e t h e y were making me r e a l l y weak." H e l e n ' s "energy l e v e l s began t o decrease r a p i d l y . " She "was t i r e d a l l the t ime and g e t t i n g t o s c h o o l was a d i f f i c u l t t a s k . " She would a v o i d e a t i n g a t s c h o o l and a t h e r p a r t - t i m e j o b , i n o r d e r t o p r e v e n t any i l l n e s s symptoms, so she was not p r o v i d i n g her body w i t h the n u t r i t i o n she needed t o keep h e r s t r e n g t h up . "I d i d not want t o ge t s i c k a t s c h o o l o r a t work and cause an u n c o m f o r t a b l e scene so t h a t ' s why I never a t e . " He len was low on energy because she g e n e r a l l y d i d n ' t eat a t a l l d u r i n g the day . H e l e n "found the r e g u l a r w i n t e r s c h o o l t erm d i f f i c u l t " because she d i d n ' t have much energy t o put i n t o i t . She was a lways h a v i n g t o ask f o r ass ignments and exams t o be d e f e r r e d t h r o u g h out the t erm. She then had a d i f f i c u l t summer because she had t o take summer s c h o o l c o u r s e s t o keep up w i t h h e r program of s t u d i e s . A l o n g w i t h summer s c h o o l , H e l e n was a l s o t r y i n g t o work so she c o u l d make enough money t o pay f o r h e r next f a l l ' s t u i t i o n . She then s t a r t e d u n i v e r s i t y f u l l t ime a g a i n i n September. She was s t i l l not e a t i n g v e r y much throughout t h i s t i m e . However, H e l e n d i d e a t a t home because she " f e l t s a f e . " "It was okay t o ge t s i c k a t home, but i t was not okay t o get s i c k a t s c h o o l . " L o o k i n g back now He len t h i n k s she s h o u l d have t a k e n a break from s c h o o l but she d i d n ' t because i t was a c o m p e t i t i v e program and she d i d n ' t want t o l o s e h e r chances o f s t a y i n g i n i t , "At t h a t t i m e , I was i n a c o m p e t i t i v e program, so I thought i'f I get out now i t would be h a r d e r t o ge t i n , because I got i n r i g h t a f t e r h i g h s c h o o l , so i t would be more d i f f i c u l t . " She "began t o hate s c h o o l " because i t was so d i f f i c u l t t o c o n t i n u e w i t h i t w h i l e d e a l i n g w i t h h e r c o l i t i s . The m e d i c a t i o n she was t a k i n g a t t h a t t i m e d i d not seem t o be h e l p i n g . H e l e n ' s d o c t o r then swi tched s t e r o i d m e d i c a t i o n s . However, she "became s i c k o f t a k i n g so many d i f f e r e n t d r u g s . " She s t a t e d t h a t the s t e r o i d s were not good f o r h e r and she "was f e a r f u l o f the s i d e e f f e c t s o f them", "I was on s t e r o i d s , I f e l t r e a l l y bad because I knew t h i s i s no t good f o r me and I would r e a d up on i t and i t was s c a r y . " The m e d i c i n e H e l e n took f o r her i l l n e s s f e l t "wrong," so she a t tempted t o seek out o t h e r means o f c o n t r o l l i n g h e r c o l i t i s . H e l e n t r i e d a n a t u r o p a t h i c d o c t o r . However, t h e d i e t he p u t h e r on d i d not seem t o h e l p . She found i t " f r u s t r a t i n g " because she c o u l d " b a r e l y eat a n y t h i n g as i t was" and t h e n t h e r e were more r e s t r i c t i o n s put on h e r d i e t . The n a t u r o p a t h i c way j u s t wasn' t g o i n g t o work f o r H e l e n so she made t h e d e c i s i o n t o go back t o u s i n g the new s t e r o i d m e d i c a t i o n . H e l e n d o e s n ' t know i f she i s g o i n g t o s t a y on m e d i c a t i o n a l l her l i f e . "The f u t u r e s c a r e s me." She i s s c a r e d t h a t she " w i l l c o n s i s t e n t l y not f e e l w e l l and a lways have t o be on major m e d i c a t i o n s . " I t s c a r e s 7 because she has been on s e v e r a l d i f f e r e n t drugs and h a s n ' t gone i n t o r e m i s s i o n t h r o u g h the whole p e r i o d of t ime t h a t she has had c o l i t i s . H e l e n s t a t e s t h a t the h a r d e s t t h i n g about l i v i n g w i t h c o l i t i s i s no t b e i n g a b l e t o f u n c t i o n d u r i n g the day w i t h o u t t h i n k i n g about i t . She f e e l s anx ious about where t h e bathrooms a r e and always has to be t h i n k i n g about t h a t , "The worry about where i s t h e r e a washroom, t h a t i s a b i g t h i n g . " I t " h i n d e r s " h e r l i f e and her a b i l i t y t o be spontaneous . Her i l l n e s s " d i s r u p t s " her day and any r o u t i n e s c h e d u l e she at tempts t o s e t up . "It causes a b i g problem t h r o u g h o u t my whole day a t s c h o o l . I t has changed the way I l o o k a t each day . " H e l e n s t a t e s t h a t c o l i t i s has changed h e r l i f e . Her i l l n e s s i s " d i r e c t i n g " her l i f e , " D e a l i n g w i t h t h i s d i s e a s e i s a huge h a s s l e and sometimes i t p i s s e s me o f f t h e way i t can j u s t s t e p i n and take c o n t r o l o f any p l a n s t h a t I may have a r r a n g e d i n my d a y . " Helen expresses a g r e a t d e a l o f anger towards her d i s e a s e f o r a l l the changes i t has f o r c e d h e r t o d e a l w i t h , bo th p h y s i c a l and e m o t i o n a l . P h y s i c a l l y H e l e n ' s d i s e a s e has been " h o r r e n d o u s . " E m o t i o n a l l y , h e r i l l n e s s has been "overwhelming", " E m o t i o n a l l y i t can get y o u . " "It j u s t screws you up , never knowing when you a r e g o i n g t o be s i c k . " E v e r y t h i n g i n H e l e n ' s l i f e now i s a h a r d t a s k . " E v e r y t h i n g i s more d i f f i c u l t and I j u s t get t i r e d o f i t sometimes. A c t u a l l y I'm t i r e d most o f the t ime because I c a n ' t r e a l l y do any of the a c t i v e t h i n g s t h a t I used t o . " H a v i n g t o g i v e up her l o v e o f b e i n g a c t i v e i n s p o r t s because i t was so d i f f i c u l t t o c o n t i n u e w i t h was a huge l o s s t o h e r . She g r i e v e s the l o s s o f her body ' s a b i l i t y t o p e r f o r m . . "I j u s t c a n ' t do i t anymore. My body won't l e t me." H e l e n speaks o f the a f f e c t s o f h a v i n g a body w i t h a c h r o n i c i l l n e s s , "Having a s i c k body makes you f e e l bad about y o u r whole s e l f . " Hav ing c o l i t i s n e g a t i v e l y i n f l u e n c e s t h e way she v iews h e r s e l f , "How I see m y s e l f has changed so much f o r the w o r s t , s i n c e I ' v e had c o l i t i s . " She has " f e l t huge changes" i n her body and the way she sees h e r body and h e r s e l f . " I 've changed so much, I'm weaker and t h a t makes me s c a r e d and t h a t s c a r e d f e e l i n g seems t o wease l i t s way i n t o a l l a r e a s o f my l i f e . " H e l e n e x p e r i e n c e s f e a r w i t h meet ing new p e o p l e and p r e f e r s t o s t a y w i t h a l l the peop le t h a t she knows and f e e l s s a f e w i t h . " T h i s a n x i e t y i s a h a r d t h i n g t o d e a l w i t h . " Her " f e a r o f new s o c i a l s i t u a t i o n s " was not t h e r e b e f o r e she d e v e l o p e d h e r d i s e a s e . She remembers not even t h i n k i n g about b e i n g a f r a i d i n unknown s i t u a t i o n s . But now H e l e n f i n d s t h a t she i s o f t e n f r i g h t e n e d of new s i t u a t i o n s , e s p e c i a l l y when she i s f e e l i n g s i c k . H e l e n c o n t i n u e s t a l k i n g about how when she i s f e e l i n g s i c k she wants t o be around p e o p l e she f e e l s s a f e w i t h . She s t a t e s t h a t when she was h e a l t h y t h i s need was never t h e r e . However, when s h e ' s f e e l i n g symptoms and she i s i n a new s i t u a t i o n , i t makes h e r anxious and s c a r e d , "When I 'm not f e e l i n g w e l l and I'm around peop le I d o n ' t know v e r y w e l l I f e e l u n c o m f o r t a b l e . " H e l e n proceeds t o t e l l o f the way she s e a r c h e s out "more c o m f o r t a b l e , l e s s a n x i e t y p r o d u c i n g e n v i r o n m e n t s . " She wants t o be w i t h peop le she f e e l s a t ease w i t h . She s t a t e s t h a t she t h i n k s t h i s i s her way of t r y i n g t o f i n d methods o f g a i n i n g some c o n t r o l when she i s f e e l i n g i l l n e s s symptoms, When I 'm not f e e l i n g w e l l I need t o have a v e r y c o n t r o l l e d , s a f e , f a m i l i a r environment because the d i s e a s e t a k e s away a l o t o f your f e e l i n g s o f power when you are s i c k . " H e l e n f e e l s more i n c o n t r o l when surrounded w i t h p e o p l e she knows w e l l . H e l e n f e e l s l e s s anxious when she i s w i t h p e o p l e she knows. She s t a t e s t h a t , a t t i m e s , s i n c e she has had c o l i t i s , she g e t s " s c a r e d and anx ious about d i f f e r e n t s i t u a t i o n s f o r no r e a s o n . " She b e l i e v e s t h a t h e r i l l n e s s has caused h e r t o f e e l a l l t h i s new f e a r , " T h i s t h i n g has caused you t o become l i k e t h a t , t h a t ' s how I see i t . " He len ends by s t a t i n g t h a t , "I f e e l a g r e a t d e a l o f anger about a l l t h i s a n x i e t y t h a t c o l i t i s causes me t o have t o d e a l w i t h i n my l i f e . " M i c h a e l M i c h a e l i s a 2 5 - y e a r - o l d male w i t h C r o h n ' s d i s e a s e . He was d i a g n o s e d a t the age o f 17. He was r e c e i v i n g a n t i - i n f l a m m a t o r y d r u g t rea tment a t the t ime of h i s p a r t i c i p a t i o n i n t h i s s t u d y . M i c h a e l had t h r e e bowel r e s e c t i o n s u r g e r i e s f o r h i s i l l n e s s . He a p p r a i s e d h i s h e a l t h a t the t ime o f the i n t e r v i e w s as not good. He d e s c r i b e d h i m s e l f as " s u f f e r i n g w i t h abdomina l p a i n " and f e e l i n g "very low on e n e r g y . " M i c h a e l ' s s i t u a t i o n began when he f i r s t f e l t "extreme abdomina l p a i n s . " He f e l t "very s c a r e d about a l l t h e s e p a i n s . " He was unab le t o e x p l a i n t o o t h e r s how bad he f e l t , "I was a l o n e i n my p a i n and s u f f e r i n g . " M i c h a e l wondered why t h i s was happening t o h i m , "Why was I b e i n g g i v e n a l l t h i s p a i n ? " He has never been a b l e t o f i n d t h e answer t o t h a t q u e s t i o n . When he f i r s t began h a v i n g symptoms, no one knew what was wrong and h i s l i f e began t o "change d r a s t i c a l l y . " One o f the a s p e c t s o f M i c h a e l ' s l i f e t h a t changed was h i s p a r t i c i p a t i o n i n e n j o y a b l e a c t i v i t i e s as he was "very much i n v o l v e d i n s p o r t s , e s p e c i a l l y b a s k e t b a l l . " He e v a l u a t e d h i m s e l f as a p r e t t y good b a s k e t b a l l p l a y e r but he began t o have d i f f i c u l t y p a r t i c i p a t i n g , " I ' l l admit I saw b a s k e t b a l l as a huge p a r t o f who I was because I was p r e t t y good a t i t , and then a l l o f a sudden I was robbed o f my energy and my a b i l i t y t o do i t anymore." As t h e symptoms grew M i c h a e l ' s energy d e c r e a s e d . He was no l o n g e r a b l e t o p a r t i c i p a t e i n the s p o r t s t h a t he e n j o y e d , I guess because o f h a v i n g t o d e a l w i t h a l l the p a i n I was f e e l i n g i n my stomach, I had no energy t o do a n y t h i n g e l s e e s p e c i a l l y b a s k e t b a l l and I became a f o r g o t t e n team member." D e a l i n g w i t h p a i n consumed much of h i s energy and h i s a b i l i t y t o p a r t i c i p a t e i n e n j o y a b l e a c t i v i t i e s . M i c h a e l f e l t v e r y a lone i n h i s p a i n . "I was a l o s t member o f s o c i e t y because I c o u l d n ' t b e l o n g on t h e s e teams anymore ." "I was no l o n g e r a b a s k e t b a l l p l a y e r and I d i d n ' t know what my i d e n t i t y was anymore b e s i d e s b e i n g a s i c k p e r s o n . " He was "no l o n g e r o u t g o i n g , s o c i a l , and p o p u l a r . " M i c h a e l " r e t r e a t e d " i n t o h i s "own w o r l d " , "I was a l o n e . " "I f e l t sad and was s u f f e r i n g a g r e a t d e a l because I d i d n ' t know what t o d o . " A f t e r s u f f e r i n g w i t h p a i n and v a r i o u s o t h e r symptoms ( i e . l o s s o f a p p e t i t e , we ight , and energy) f o r s e v e r a l months, M i c h a e l ' s f a m i l y d o c t o r sent him t o a g a s t r o e n t e r o l o g i s t . "My d o c t o r sent me t o a stomach s p e c i a l i s t . I was s o r t o f a f r a i d because he put me t h r o u g h q u i t e t h e b a r r a g e o f t e s t s . " T h i s was a "scary" t h i n g f o r him as he had never spent so much t ime w i t h d o c t o r s and so much t i m e i n the h o s p i t a l . The g a s t r o e n t e r o l o g i s t d i a g n o s e d him w i t h C r o h n ' s d i s e a s e . "He a c t u a l l y made q u i t e a q u i c k d i a g n o s i s I suppose and so t h e r e I was. A t l e a s t I c o u l d put a name t o a l l the se v a r i o u s symptoms I was e x p e r i e n c i n g . " M i c h a e l never knows when he i s g o i n g t o have an "a t tack" o f symptoms and be rushed t o the h o s p i t a l , "They t r u l y a r e a t t a c k s . They happen so q u i c k l y . I f e e l c o m p l e t e l y a t t a c k e d and v i o l a t e d by my i l l n e s s . I t has d e s t r o y e d my body and keeps me from l i v i n g a r e g u l a r l i f e . " M i c h a e l l ongs f o r more c o n t r o l over h i s body, h i s i l l n e s s and h i s l i f e but t h u s f a r n o t h i n g has been s u c c e s s f u l f o r h im: My i l l n e s s c o n t r o l s my l i f e , I watch what I e a t , I t a k e my m e d i c a t i o n , b u t i t s t i l l monopol i zes my l i f e . I t ' s amazing I ' v e kept one job f o r so l o n g because I never know when i t ' s g o i n g t o take over and I am g o i n g t o have t o phone i n s i c k . The f a c t t h a t M i c h a e l f e e l s i l l a l o t o f the t ime and has l i t t l e c o n t r o l over h i s symptoms makes i t d i f f i c u l t f o r him t o f e e l good about h i m s e l f , "Crohn' s d i s e a s e makes me f e e l i n f e r i o r , my d i g n i t y has been l o s t . I'm j u s t a s i c k p e r s o n w i t h no c o n t r o l over t h e i r bod ie s or t h e i r l i f e " A l o n g w i t h h i s i l l n e s s s p e c i f i c a l l y c a u s i n g a decrease i n h i s s e l f - esteem he a l s o p o i n t s t o h i s e x p e r i e n c e s i n the h o s p i t a l as h a v i n g a major e f f e c t on h i s s e l f - r e g a r d . M i c h a e l never knows when he i s g o i n g t o end up i n the h o s p i t a l as he i n d i c a t e s : I never know when I am g o i n g t o f e e l the symptoms o f my d i s e a s e . I c o u l d end up i n the h o s p i t a l tomorrow and t h e y t r e a t you i n such a d e g r a d i n g way i n the h o s p i t a l you f e e l l i k e a h e l p l e s s l i t t l e k i d . M i c h a e l ha te s the l e n g t h y s t a y s i n the h o s p i t a l and the e f f e c t s o f t h i s . "I t h i n k one o f the wors t t h i n g s about h a v i n g t h i s c h r o n i c i l l n e s s i s b e i n g i n the h o s p i t a l and away from the woman t h a t I l o v e . " He ha te s t h e p a i n t h a t h i s w i f e has t o go thr ough w i t h h a v i n g a p a r t n e r w i t h C r o h n ' s d i s e a s e and h a v i n g t o spend so many n i g h t s away from him w h i l e he i s i n the h o s p i t a l . M i c h a e l ha te s "hear ing p a t h e t i c s t o r i e s from o t h e r p e o p l e w i t h C r o h n ' s d i s e a s e . " O t h e r s have t o l d him t h a t t h e i r p a r t n e r s c o u l d n ' t cope w i t h them h a v i n g a c h r o n i c i l l n e s s , "I hear t h a t *my w i f e l e f t me because o f my d i s e a s e ' . " He h e a r s t h a t they c o u l d n ' t be p r o p e r p a r e n t s because o f C r o h n ' s d i s e a s e . I f M i c h a e l was t o b e l i e v e a l l t h e s e s t o r i e s he s t a t e s t h a t he would be l e f t i n c a p a b l e o f d o i n g a n y t h i n g w i t h h i s l i f e . However, he does not g i v e c r e d e n c e t o a l l the se s t o r i e s , " T h a t ' s not t r u e . " He b e l i e v e s t h a t even l i v i n g w i t h a c h r o n i c i l l n e s s , one can e n j o y l i f e and have h e a l t h y r e l a t i o n s h i p s . M i c h a e l i s t r y i n g t o have f u l f i l l i n g r e l a t i o n s h i p s and l i v e h i s l i f e t o t h e f u l l e s t . However, he s t i l l f e e l s angry about h i s l i f e o f t e n and a t t imes i s " d e b i l i t a t e d by these f e e l i n g s . " A l o n g w i t h b e i n g angry M i c h a e l a l s o f e e l s s c a r e d . However, he s t a t e s t h a t he f e e l s l e s s a lone then what he d i d when he f i r s t was d i a g n o s e d because he shares more about h i s i l l n e s s w i t h o t h e r s t h a t he t r u s t s . M i c h a e l i s b e g i n n i n g t o share more w i t h o t h e r s about h i s i l l n e s s . He t e l l s f r i e n d s now why he c a n ' t ea t c e r t a i n foods o r why he c a n ' t p a r t i c i p a t e i n v a r i o u s a c t i v i t i e s , "I t f e e l s good b e i n g honest about my h e a l t h " . He b e l i e v e s t h a t he must "accept" h i m s e l f and h i s i l l n e s s b e f o r e o t h e r s can a c c e p t him and one o f the ways he can do t h i s i s by b e i n g more open w i t h f r i e n d s about h i s d i s e a s e . M i c h a e l s t a t e s t h a t he i s s l o w l y becoming more a c c e p t i n g o f the f a c t he w i l l l i v e w i t h C r o h n ' s d i s e a s e f o r t h e r e s t o f h i s l i f e : I t ' s a c h r o n i c i l l n e s s , a s c a r y word t h a t c h r o n i c t h i n g , so I guess t h a t means p r e t t y much f o r my e n t i r e l i f e and I am s t a r t i n g t o a c c e p t t h a t . A c c e p t a n c e i s one t h i n g but a l l the emotions t h a t come up when I t h i n k about t h a t , e s p e c i a l l y f e a r , i t can be overwhelming sometimes. M i c h a e l ends by s t a t i n g t h a t he s t i l l f e e l s a g r e a t d e a l o f f e a r about h a v i n g t o l i v e w i t h C r o h n ' s d i s e a s e f o r e v e r but he a t t empts t o l i v e one day a t a t i m e . "Scared about t h e f u t u r e but j u s t have t o l i v e l i f e . " Ted Ted i s a 2 5 - y e a r - o l d male w i t h c o l i t i s . He was d i a g n o s e d a t the age o f 18. He was r e c e i v i n g s t e r o i d t r e a t m e n t a t the t ime of h i s p a r t i c i p a t i o n i n t h i s s t u d y . Ted had not had s u r g e r y f o r h i s i l l n e s s . He a p p r a i s e d h i s h e a l t h a t t h e t ime o f the i n t e r v i e w as not good. He d e s c r i b e d h i m s e l f as f e e l i n g a "great d e a l o f p a i n . " Ted b e l i e v e s t h a t h i s s i t u a t i o n a c t u a l l y began when he was t o l d t h a t he would have t o l i v e w i t h c o l i t i s f o r t h e r e s t o f h i s l i f e , " T h i s was no i n n o c e n t a f f l i c t i o n , t h i s was an i n c u r a b l e c o n d i t i o n . " "My body had been v i o l a t e d by some f o r e i g n s i c k n e s s t h a t was g o i n g t o be w i t h me f o r t h e remainder o f my l i f e . " "I was put t h rou gh so much r i g h t from t h e word c h r o n i c . " "When i t was de termined t h a t I had a c h r o n i c i l l n e s s t h a t was a f f e c t i n g my i n t e s t i n a l t r a c t I was i m m e d i a t e l y put on s t e r o i d s and put t h rou gh a c o n t i n u o u s b a r r a g e o f d e g r a d i n g t e s t s t h a t seemed t o never s t o p . " Ted was " a p p a l l e d " by the l a c k o f compass ion d o c t o r s had f o r h i s c o n d i t i o n as he was so "scared o f t h i s unknown i l l n e s s and these demeaning e x a m i n a t i o n s . " F e a r was an emot ion t h a t he f e l t had taken over h i s l i f e but no one h e l p e d t o ca lm these f e a r s , "Fear o f t h i s d i s e a s e , f e a r o f e v e r y t e s t room t h a t I was wheeled i n t o , but no one e v e r e x p l a i n e d t o me what was a c t u a l l y g o i n g t o be g o i n g o n . " He s t a t e s t h a t a l l t h a t a n x i e t y j u s t p i l e d up i n s i d e him and made d e a l i n g w i t h everyday l i f e v e r y d i f f i c u l t , " T h i s i l l n e s s makes me f e e l s c a r e d , weak and u n a b l e t o d e a l w i t h t h i s w o r l d " , "At t imes I hate myse l f f o r f e e l i n g so f r i g h t e n e d and f r a g i l e and I f i g u r e I ' l l never make i t , and nobody seems t o unde r s tan d these f e e l i n g s . " Ted q u e s t i o n s h i s a b i l i t y to d e a l w i t h t h i s f e a r and t h e d i f f i c u l t e x p e r i e n c e s t h a t he now f a c e s i n h i s l i f e : When f a c e d w i t h a f u t u r e o f h a v i n g t o c o n f r o n t p a i n , s o c i a l i n h i b i t i o n s , and the c o n t i n u o u s abuse o f my body from d r u g t h e r a p y , i t makes me wonder i f I have t h e s t r e n g t h t o cope . I f e e l I have come v e r y c l o s e t o f a c i n g d e a t h . He f e l t he has f a c e d h i s own m o r t a l i t y a t a v e r y young age and i s f o r c e d t o make major a l t e r a t i o n s i n the way he l i v e s h i s l i f e . He speaks o f these a l t e r a t i o n s as ones t h a t were not o f h i s c h o o s i n g : I f e l t l i k e I had l o s t complete c o n t r o l o f my l i f e , something f o r e i g n had taken over and I was s c a r e d and a l l I can do i s t r y t o change some t h i n g s i n my l i f e t o see i f I can cope b e t t e r . The changes I have had t o make have c o s t me a g r e a t d e a l . I have l o s t a l o t i n my l i f e s i n c e b e i n g d iagnosed w i t h c o l i t i s . Ted p o i n t s out the huge l o s s e s he has f a c e d . "My whole e x i s t e n c e as I knew i t was gone and I was v e r y down and v e r y s c a r e d o f what I was about t o be c o n f r o n t e d w i t h . " A l o n g w i t h an i n c r e a s e i n f e e l i n g s o f a n x i e t y over a l l t h e unknown changes Ted i s f aced w i t h , he a l s o s t a t e s t h a t , " I ' v e become v e r y depres sed and a t the same t ime f e e l i n g v e r y a n g r y . " He focuses on the i l l n e s s and i t s s i d e e f f e c t s as the t a r g e t f o r h i s anger . A t t h i s p o i n t Ted ends by e m p h a s i z i n g t h a t the o n l y t h i n g he can do i s t o t r y t o d e a l w i t h h i s angry f e e l i n g s i n a p p r o p r i a t e ways and "cope on a day t o day b a s i s . " Nancy Nancy i s a 2 3 - y e a r - o l d female w i t h c o l i t i s . She was d i a g n o s e d a t the age o f 18. She was r e c e i v i n g s t e r o i d t r e a t m e n t a t the t ime of her p a r t i c i p a t i o n i n t h i s s t u d y . Nancy had not had s u r g e r y f o r her i l l n e s s . She a p p r a i s e d her h e a l t h a t the t ime o f the i n t e r v i e w as p o o r . She d e s c r i b e d h e r s e l f as " s u f f e r i n g from a f a i r b i t o f s i c k y f e e l i n g s . " N a n c y ' s s i t u a t i o n began a t the b e g i n n i n g o f h e r f i r s t y e a r o f u n i v e r s i t y . T h i s i s when she i n i t i a l l y s t a r t e d t o f e e l s i c k . She remembers b e i n g "very s c a r e d " because she d i d not know what was wrong w i t h h e r . Her r e g u l a r d o c t o r t o l d h e r t h a t t h e r e was n o t h i n g wrong w i t h h e r , so she d e c i d e d t o seek a second o p i n i o n and the d o c t o r who s u p p l i e d t h e second o p i n i o n d i a g n o s e d her w i t h c o l i t i s . Nancy was s i c k f o r c l o s e t o a f u l l y e a r b e f o r e b e i n g d i a g n o s e d , and w i t h an i l l n e s s she had never h e a r d o f . Nancy had never heard of c o l i t i s and t h i s l a c k o f knowledge c o n c e r n i n g her d i a g n o s i s added t o her " a l r e a d y a l l consuming f e a r . " However, t h e r e was some sense o f r e l i e f w i t h f i n d i n g out t h a t t h e r e was something m e d i c a l l y wrong w i t h h e r . A l t h o u g h she was s c a r e d she was a l s o c o m f o r t e d t o f i n d out t h a t she "was not j u s t g o i n g c r a z y " , and she was r e l i e v e d t o know t h a t t h e r e were o t h e r p e o p l e out t h e r e who had t h e same d i s e a s e who she c o u l d t a l k t o about h e r f e e l i n g s . N a n c y ' s h o s p i t a l e x p e r i e n c e s i n c l u d e d a g r e a t d e a l o f emot ions , p r i m a r i l y f e a r , "I remember b e i n g q u i t e e m o t i o n a l , e s p e c i a l l y s c a r e d , and i t had t o do w i t h b e i n g i n the h o s p i t a l and h a v i n g t o undergo a l l these d i f f e r e n t t e s t s . " She e x p e r i e n c e d many "strange and v i o l a t i n g " p r o c e d u r e s d u r i n g h e r f i r s t h o s p i t a l s t a y . These v i o l a t i n g t e s t s caused h e r t o e x p e r i e n c e f e e l i n g "out o f c o n t r o l " o f h e r body and h e r l i f e w h i l e i n the h o s p i t a l , " E v e r y t h i n g was v e r y new t o me and out o f my c o n t r o l . " Whi l e i n the h o s p i t a l Nancy h e a r d s t o r i e s from o l d e r women who had been l i v i n g w i t h c o l i t i s f o r some t ime and these s t o r i e s added t o her a l r e a d y i n c r e a s i n g f e e l i n g s o f b e i n g out o f c o n t r o l . A l o n g w i t h i n c r e a s e d f e e l i n g s o f b e i n g out o f c o n t r o l , t h e i r s t o r i e s i n c r e a s e d h e r f e e l i n g s o f f e a r . She a l s o saw c o n c e r n i n h e r p a r e n t s caused by what was g o i n g on , which a g a i n e l e v a t e d h e r own a n x i e t y , " A l s o , s e e i n g the look o f a l a r m on my p a r e n t s ' f a c e s d i d n ' t h e l p my own f e e l i n g s o f b e i n g s c a r e d . " Nancy went on a ques t t o f i n d a l l the i n f o r m a t i o n she c o u l d about c o l i t i s i n hopes t o a l l e v i a t e some o f h e r f e a r s t h r o u g h knowledge. She read many pamphlets and she was s u r p r i s e d t o f i n d t h a t the i n f o r m a t i o n the o l d e r women were g i v i n g about what was g o i n g t o happen t o h e r was c o n t r a d i c t e d i n these m e d i c a l b r o c h u r e s . The symptoms t h e women were t a l k i n g about o n l y happened i n r a r e i n s t a n c e s . T h i s d i d h e l p t o a l l e v i a t e some of her f e a r . However, many o f N a n c y ' s f e a r s were not l e s s e n e d . Nancy r e a l i z e s now t h a t she w i l l have c o l i t i s f o r the r e s t o f h e r l i f e and t h i s r e a l i z a t i o n a l s o causes a g r e a t d e a l o f f e a r i n her a l o n g w i t h f e e l i n g s o f deep d e s p a i r . T h i n g s were happening so f a s t d u r i n g the f i r s t phases o f h e r i l l n e s s t h a t she d i d not t h i n k about i t as b e i n g a l i f e t i m e a f f l i c t i o n . " I t ' s always g o i n g t o be a p a r t o f me. I 'm never r e a l l y g o i n g t o be t r u l y h e a l t h y a g a i n and t h a t r e a l l y d e p r e s s e s me." A l t h o u g h Nancy r e c o g n i z e s t h a t c o l i t i s i s a c h r o n i c i l l n e s s , she hangs onto the hope t h a t she w i l l a t l e a s t go i n t o r e m i s s i o n . Her p a r e n t s have l i f t e d her hopes w i t h s t o r i e s o f p e o p l e they know who are b e t t e r now. They t e l l h e r t h a t , i f o n l y she took b e t t e r c a r e o f h e r s e l f she would be i n r e m i s s i o n . "Al though t h i s p r o v i d e s hope i t a l s o causes a g r e a t d e a l o f g u i l t and p r e s s u r e . " She has spent a g r e a t d e a l o f e f f o r t i n r e s e a r c h i n g ways i n which she might be a b l e t o t a k e b e t t e r c a r e o f h e r s e l f . However, n o t h i n g has been a b l e t o h e l p Nancy i n t o r e m i s s i o n . A l t h o u g h the knowledge Nancy has g a i n e d has not h e l p e d h e r i n t o r e m i s s i o n , she f e e l s t h a t the i n f o r m a t i o n she has g a t h e r e d i s a l l o w i n g her t o s l o w l y take more c o n t r o l over h e r d e c i s i o n s i n h e r l i f e . She s t a t e s t h a t t h i s knowledge r e g a r d i n g h e r c o l i t i s i s v e r y impor tant t o her because i t a l l o w s h e r t h i s i n c r e a s e d c o n t r o l . M e d i c a t i o n and d i e t a l s o a l l o w h e r t o have more c o n t r o l over some o f the symptoms o f h e r i l l n e s s . She s t a t e s t h a t t h i s f e e l i n g o f i n c r e a s e d c o n t r o l i s i m p o r t a n t t o her because "there i s g e n e r a l l y , so l i t t l e c o n t r o l over the a f f e c t s o f c o l i t i s . " Nancy p o i n t s t o h e r we ight and her body image as two of the t h i n g s she f e e l s l i t t l e c o n t r o l o v e r . She t r i e d t o c o n v i n c e h e r s e l f t h a t the f a c t t h a t she l o s t a l o t o f weight might be a p o s i t i v e s i d e e f f e c t o f c o l i t i s . However, she was u n s u c c e s s f u l i n c o n v i n c i n g h e r s e l f o f t h i s as she knew t h a t the l a c k o f c o n t r o l over h e r w e i g h t - l o s s was a s i g n o f i l l - h e a l t h . Nancy s t a t e s t h a t good h e a l t h i s so i m p o r t a n t t o h e r and she may never have i t a g a i n . She longs f o r t h e h e a l t h y body she had b e f o r e c o l i t i s "invaded" i t . She f e e l s h e r h e a l t h y body has been "raped" by her d i s e a s e and t h e n " d e v a s t a t e d by the t e s t s " she i s put through because o f h e r d i s e a s e . Nancy a l s o f e e l s " v i o l a t i o n from a l l the drugs" she has t o t a k e i n t o her body t o t r y and s t a b i l i z e h e r d i s e a s e v Nancy g r i e v e s over the l o s s o f her body b e f o r e c o l i t i s . She has had "a complete body image change ." She can no l o n g e r see h e r s e l f as a " h e a l t h y , v i b r a n t 2 3 - y e a r - o l d young woman." Nancy sees h e r s e l f as "puffy f a c e d and u n h e a l t h y . " She s t a t e s t h a t , " t h i s view o f her body and h e r s e l f i s one o f t h e h a r d e s t a s p e c t s o f h a v i n g c o l i t i s " because o f t h e way i t l owers h e r s e l f - w o r t h . "I see myse l f as weak and l a z y and t h i s makes me v e r y d e p r e s s e d . " Nancy mis ses h e r l o s t "body s t r e n g t h . " She wants t o be a good a t h l e t e a g a i n . She misses b e i n g a b l e t o e x e r c i s e r e g u l a r l y . Nancy sees a l l these l o s s e s as "a b i g blow" t o h e r i d e n t i t y and image o f s e l f . S c h o l a s t i c accompl ishment , u s u a l l y an i m p o r t a n t s o u r c e o f s e l f - e s t e e m f o r Nancy, was g r e a t l y r e s t r i c t e d a f t e r d e v e l o p i n g c o l i t i s , I j u s t h a v e n ' t been a b l e t o do my b e s t a t u n i v e r s i t y , and t h i s makes me f e e l l i k e a l o s e r because I c a n ' t ge t anywhere. I t ' s h a r d f o r me t o ge t good grades when I have t o miss so much." She f r e q u e n t l y e n c o u n t e r s h a v i n g t o t a k e t ime o f f o f s c h o o l when her i l l n e s s a c t s up and i n t u r n t h i s a l t e r s her chances o f a t t a i n i n g a h i g h s t a n d a r d . W i t h t h i s t h e n comes a l o w e r i n g o f h e r s e l f - e s t e e m . Nancy s t a t e s t h a t she may look okay t o p e o p l e from t h e o u t s i d e , but i n s i d e she f e e l s "ug ly , d i r t y and s i c k . " "I know t h a t even though I may look f i n e my i n s i d e s a r e no t f i n e . " She s t a t e s t h a t these f e e l i n g s about h e r s e l f have changed h e r l i f e " d r a s t i c a l l y . " When t h e r e a r e t h e r a r e t i m e s when she f e e l s h e a l t h i e r , her whole s e l f - e s t e e m p o s i t i v e l y changes . Nancy s t a t e s t h a t she has " d e f i n i t e l y changed, as a p e r s o n , s i n c e b e i n g d iagnosed w i t h c o l i t i s . " She t r i e s t o l o o k f o r some p o s i t i v e s i n some of these changes . Some o f t h e p o s i t i v e s t h a t she has found i n c l u d e more empathy and u n d e r s t a n d i n g f o r peop le t h a t are s u f f e r i n g from some k i n d o f d i f f i c u l t s i t u a t i o n . Nancy a l s o s t a t e s t h a t she no l o n g e r t a k e s t h i n g s f o r g r a n t e d . She s t a t e s t h a t h e r p r i o r i t i e s i n l i f e have changed. She t r i e s h a r d e r t o en joy t h e t h i n g s she has i n h e r l i f e . Nancy i s t r y i n g t o have a more e a s y g o i n g a t t i t u d e t o l i f e . However, she does worry , but she now w o r r i e s about the symptoms o f c o l i t i s and how they are g o i n g t o make each moment h a r d e r as opposed to w o r r y i n g about the moment i t s e l f . D i s c u s s i n g a l l the new a n x i e t i e s she i s f a c e d w i t h l e a d s h e r i n t o t a l k i n g about how l i f e i s now so much h a r d e r . "Noth ing i s easy anymore and i t makes me so a n g r y . " " L i f e i s much more s t r e s s f u l because you never know when you might be s i c k . So many t h i n g s are now h a r d e r , s c h o o l , work, p l a y , you name i t . " Nancy f i n d s work ing v e r y h a r d w i t h h a v i n g c o l i t i s , "Going t o work i s n ' t an easy t a s k . You never know when you a r e g o i n g t o ge t s i c k and t h a t makes you w o r r y . " She s t a t e s t h a t , " c o l i t i s causes h i g h l e v e l s o f a n x i e t y no m a t t e r where you a r e " , "I ge t v e r y anxious when I'm a t work. What i f I was t o ge t s i c k . T h i s a l s o causes me t o a v o i d a n y t h i n g , i n c l u d i n g fun t h i n g s . " C o l i t i s a l s o causes her t o have t o say "no" t o more a c t i v i t i e s t h a t she enjoys and she g r i e v e s over t h e l o s s o f these e n j o y a b l e a c t i v i t i e s . Nancy ends w i t h t a l k i n g about how h a r d u n i v e r s i t y i s f o r h e r , "I t r y t o laugh and take t h i n g s i n s t r i d e but i t i s r e a l l y h a r d . I f i n d u n i v e r s i t y r e a l l y h a r d . " She c o n t i n u e s : I t h i n k t h a t the most d i f f i c u l t s i d e e f f e c t o f c o l i t i s , t h u s f a r , and t h a t I j u s t c a n ' t laugh about , has been my low performance i n u n i v e r s i t y because o f the d e l e t e r i o u s e f f e c t s i t w i l l have on the r e s t o f my l i f e c h o i c e s . R e f l e c t i o n s from the P r o c e s s D i a r y I had c o n v e r s a t i o n s w i t h young a d u l t s w i t h C r o h n ' s d i s e a s e and c o l i t i s w i t h i n as e q u a l r e l a t i o n s h i p as p o s s i b l e . As they d i s c l o s e d t h e i r e x p e r i e n c e s t o me, I o f t e n h e a r d the s ta tement : "I have never t a l k e d about t h a t w i t h anyone e l s e " . They seemed t o r e g a r d my i n t e r e s t i n t h e i r l i v e s as an i n d i c a t i o n o f u n d e r s t a n d i n g t h a t they s t a t e d had r a r e l y been shown t o them. I at tempted t o never pose as somebody s u p e r i o r t o them, or as a judge o f t h e i r a c t i o n s , but as one o f them. O v e r a l l , the i n t e r v i e w i n g e x p e r i e n c e and w r i t t e n n a r r a t i v e s worked w e l l , and f o l l o w e d the g u i d e l i n e s I had e s t a b l i s h e d . There was an ease about the p r o c e s s t h a t seemed t o be a i d e d by the i n t r o d u c t i o n t o the p a r t i c i p a n t s , and by the meaning t h a t t h i s p a r t i c u l a r l i v e d - e x p e r i e n c e h e l d f o r each p a r t i c i p a n t . D u r i n g my r e l a t i n g t o the p a r t i c i p a n t s , i t appeared t h a t a l e v e l o f t r u s t was deve loped t h a t h e l p e d i n t h e t e l l i n g o f t h e i r s t o r i e s . When words or groups o f words had not been f u l l y unders tood by me d u r i n g the i n t e r v i e w s , p a r t i c i p a n t s were a b l e t o q u i c k l y c l a r i f y the n a t u r e o f t h e i r a c t u a l s ta t ements . Feedback about the v a l u e o f the p r o c e s s f o r p a r t i c i p a n t s was shared d u r i n g the r e s e a r c h i n t e r v i e w . One p a r t i c i p a n t commented on how important i t was t o have t h e o p p o r t u n i t y t o t a l k about h i s l a s t few y e a r s . A n o t h e r p a r t i c i p a n t d e s c r i b e d the p r o c e s s o f w r i t i n g a n a r r a t i v e as an a c t i v i t y t h a t was p a r t i c u l a r l y v a l u a b l e i n h e l p i n g h e r t o r e f l e c t and become more aware o f who she was i n r e l a t i o n t o h e r i l l n e s s . A l l o f the p a r t i c i p a n t s found the i n t e r v i e w and w r i t i n g a n a r r a t i v e v e r y meaningfu l i n terms o f s h a r i n g what was o f c e n t r a l importance i n t h e i r l i f e e x p e r i e n c e s w i t h a c h r o n i c i l l n e s s . I f e l t v e r y s t r o n g l y about t r a n s c r i b i n g each t a p e , word f o r word, and d o i n g the e n t i r e j o b m y s e l f . I found t h a t , l i s t e n i n g t o these tapes and r e a d i n g the w r i t t e n n a r r a t i v e s , over and o v e r , was an important s t ep i n the d a t a a n a l y s i s . T h i s k i n d o f i n - d e p t h c o n c e n t r a t i o n w i t h each t r a n s c r i p t was a s i g n i f i c a n t p a r t o f the p r o c e s s o f i d e n t i f y i n g themes. I f e e l I know t h e t e n h i s t o r i e s a lmost as w e l l as I know my own s t o r y . T h i s k i n d o f f a m i l i a r i t y a i d e d me i n a p r o c e s s o f r e f l e c t i n g on the fundamental n a t u r e o f the e x p e r i e n c e t h a t was i n v a r i a n t a c r o s s s t o r i e s . CHAPTER FOUR G e n e r a l S t r u c t u r e T h i s c h a p t e r c o n s i s t s o f the p r e v a l e n t u n d e r l y i n g themes i n v o l v e d i n l i v i n g w i t h C r o h n ' s d i s e a s e and c o l i t i s . These a r e d e f i n e d by a l l the p a r t i c i p a n t ' s t r a n s c r i b e d i n t e r v i e w s and w r i t t e n n a r r a t i v e s . These themes a r e r e f e r r e d t o as t h e " g e n e r a l s t r u c t u r e " ( K a r l s s o n , 1993) . My r o l e as r e s e a r c h e r i s t o i l l u m i n a t e the d a t a o f a l l t h e p a r t i c i p a n t s , t o d e s c r i b e i t i n a way t h a t makes i t v i s i b l e t o o t h e r s . A f t e r s t u d y i n g the d e s c r i p t i o n s o f t h e phenomenon, I e x p l i c a t e d themes which were deemed t o c o n s t i t u t e the p r i m a r y f e a t u r e s o f the phenomenon. Each theme i s i l l u s t r a t e d by a number o f examples from i n d i v i d u a l t r a n s c r i p t s , and w r i t t e n n a r r a t i v e s , t h a t v e r i f y i t s s e l e c t i o n . T h i s d i s c u s s i o n o f themes i s seen by van Manen (1984) as the c o r e o f the phenomenolog ica l d e s c r i p t i o n . Data from a l l t h e p a r t i c i p a n t s t o g e t h e r i s p r e s e n t e d i n a f u l l f orm, i n c l u d i n g extended q u o t a t i o n s . T h i s f i n a l s t ep i s a move from the s i t u a t e d s t r u c t u r e t o what K a r l s s o n (1993) terms the "genera l s t r u c t u r e " . I a l s o i n t h i s s t ep r e t u r n e d t o the raw d a t a . A prob lem s p e c i f i c t o t h i s s t e p , when d e a l i n g w i t h themes, i s t h e p o s s i b i l i t y t h a t I may have o v e r l o o k e d r e l e v a n t u n i t s i n i n t e r v i e w p r o t o c o l s and w r i t t e n n a r r a t i v e s , which would h i n d e r an adequate a n a l y s i s of the themes. I made a g r e a t e f f o r t t o compare the d i f f e r e n t t r a n s c r i b e d i n t e r v i e w s and w r i t t e n n a r r a t i v e s w i t h one a n o t h e r . The r e s u l t s o b t a i n e d from the a n a l y s i s o f a l l the p a r t i c i p a n t s t o g e t h e r i n t h i s l a s t s t e p i s p r e s e n t e d i n terms of d i f f e r e n t themes. The a n a l y s i s i s p r e s e n t e d i n terms of c h a r a c t e r i s t i c s o f t h e l i f e e x p e r i e n c e s o f young a d u l t s w i t h a c h r o n i c i l l n e s s . My at tempt was t o r e p o r t the o r i g i n a l accounts w i t h enough e l a b o r a t i o n t o a s se s s the agreement between the communicat ions o f the p a r t i c i p a n t s and my i n t e r p r e t a t i o n . Summary o f the Themes 1. The l i f e e x p e r i e n c e s o f young a d u l t s w i t h C r o h n ' s d i s e a s e o r c o l i t i s i n c l u d e the c o n s t a n t l y accompanying t h r e a t o f the u n p r e d i c t a b l e o c c u r r e n c e o f symptoms. 2. The l i f e e x p e r i e n c e s o f young a d u l t s w i t h , C r o h n ' s d i s e a s e o r c o l i t i s i n c l u d e g r i e f and l o s s . 2 .1 Performance a b i l i t i e s 2.2 Body and p o s i t i v e body image 2.3 E n j o y a b l e a c t i v i t i e s 3 . L i f e e x p e r i e n c e s o f young a d u l t s w i t h C r o h n ' s d i s e a s e o r c o l i t i s i n c l u d e a s i g n i f i c a n t l o w e r i n g o f s e l f - e s t e e m . 4. The e x p e r i e n c e s e n t a i l e d i n the l i v e s o f young a d u l t s w i t h C r o h n ' s d i s e a s e or c o l i t i s i n c l u d e a marked i n c r e a s e i n f e e l i n g s o f u n c e r t a i n t y accompanied by f e a r o r a n x i e t y . 4 .1 Unknown i l l n e s s 4.2 Unknown h o s p i t a l 4.3 T e s t s 4.4 See ing s i g n i f i c a n t o t h e r s worry 4 .5 F e e l i n g s caused by i l l n e s s 5. The e x p e r i e n c e s o f young a d u l t s w i t h C r o h n ' s d i s e a s e o r c o l i t i s i n v o l v e a g r e a t d e a l o f change and adjus tment i n many d i m e n s i o n s . 5 .1 S e l f 6. The e x p e r i e n c e s o f young a d u l t s w i t h C r o h n ' s d i s e a s e o r c o l i t i s i n c l u d e d e p r i v a t i o n o f some of t h e i r c o n t r o l over t h e i r l i v e s . 6.1 Weight 7. Types o f e x p e r i e n c e s i n c l u d e f e e l i n g v i o l a t e d . 7 .1 Drugs 7.2 M e d i c a l p r o c e d u r e s 8. The l i f e e x p e r i e n c e s i n c l u d e f e e l i n g a g r e a t d e a l o f a n g e r . D i s c u s s i o n o f G e n e r a l S t r u c t u r e 1. The l i f e e x p e r i e n c e s o f young a d u l t s w i t h C r o h n ' s d i s e a s e o r c o l i t i s i n c l u d e the c o n s t a n t l y accompanying t h r e a t o f the u n p r e d i c t a b l e o c c u r r e n c e o f symptoms One o f t h e most apparent element e x p e r i e n c e d by young a d u l t s w i t h t h i s c h r o n i c i l l n e s s i s the t h r e a t o f u n p r e d i c t a b l e symptoms and "constant worry" as t o whether they w i l l make i t t h r o u g h v a r i o u s l i f e t a s k s w i thout g e t t i n g s i c k . "There was t h e c o n s t a n t worry o f i f I would be a b l e t o make i t t o s c h o o l , my c l a s s e s , the day e t c . " "I never know what k i n d o f day I am g o i n g t o have , and whether I am g o i n g t o make i t t h r o u g h i t w i t h o u t g e t t i n g s i c k . I t ' s r e a l l y , r e a l l y a w f u l h a v i n g t o l i v e t h a t way." The "endless u n c e r t a i n t y " as t o whether t h e y w i l l get s i c k has been noted by many as one o f t h e w o r s t a s p e c t s o f l i v i n g w i t h C r o h n ' s d i s e a s e o r c o l i t i s , "Everyday I would wake up, u s u a l l y f e e l i n g a w f u l , and not knowing what k i n d o f day l i e s ahead f o r me." "You j u s t never know, you never know, and t h i s can d r i v e you nuts and r e a l l y f r u s t r a t e y o u . Y o u ' r e always faced w i t h t h i s c o n s t a n t w o r r y . " F r u s t r a t i o n and worry are the common f e e l i n g s t h a t accompany t h i s t h r e a t o f u n p r e d i c t a b l e o c c u r r i n g symptoms, "I t would be q u i t e f r u s t r a t i n g because most o f my energy went i n t o w o r r y i n g i f I would make i t t o and t h r o u g h t h e work day r a t h e r than on the work i t s e l f . " "Schoo l was r e a l h a r d because y o u ' r e always h a v i n g t o t h i n k about y o u r damn d i s e a s e and whether i t ' s g o i n g t o cause you t o r e a r r a n g e y o u r day . I always have t o worry about i t . " A l l t h e p a r t i c i p a n t s have f e l t some form of u n e a s i n e s s about g e t t i n g s i c k : I t was l i k e , w i l l I make i t t o s c h o o l , w i l l I f e e l okay , because I remember I ' d be f i n e , but h e a r i n g s c h o o l I ' d t h i n k , w e l l I'm j u s t about t h e r e , but I ' d ge t nervous cause I ' d t h i n k , am I g o i n g t o be okay . A n o t h e r p a r t i c i p a n t s t a t e s t h a t , "Your l i f e i s one b i g q u e s t i o n mark, am I g o i n g t o get s i c k today?" These young a d u l t s worry about whether they w i l l make i t t h r o u g h "the day , the week, the y e a r , " w i t h o u t g e t t i n g s i c k , "A day d o e s n ' t go by w i t h o u t h a v i n g t o t h i n k about your i l l n e s s , and a t n i g h t i t ' s even worse . I j u s t hate t h a t c o n s t a n t u n c e r t a i n t y you a r e f a c e d w i t h . " They never know when a symptom i s g o i n g t o appear and how i t i s g o i n g t o e f f e c t t h e moment, "One minute I c o u l d be e n j o y i n g a c o n v e r s a t i o n w i t h f r i e n d s and the next I c o u l d be b e d r i d d e n w i t h huge p a i n s i n my s tomach. I t ' s a c o n s t a n t w o r r y . " They worry about when they a r e g o i n g t o f e e l symptoms of t h e i r d i s e a s e . "My d i s e a s e , and i t r e a l l y i s a d i s e a s e because you can never f e e l a t ease w i t h i t . You never know when i t i s g o i n g t o pop up and t o t a l l y wreck your d a y . " When l o o k i n g a t a l l t h e s t o r i e s t h a t were used i n t h i s s t u d y , i t was found t h a t a l l o f t h e p a r t i c i p a n t s i n c l u d e d s tatements c o n c e r n i n g " u n p r e d i c t a b l e o c c u r r e n c e s o f symptoms." 2. The l i f e e x p e r i e n c e s o f young a d u l t s w i t h C r o h n ' s d i s e a s e o r c o l i t i s i n c l u d e g r i e f and l o s s The p a r t i c i p a n t s ' e x p e r i e n c e s i n c l u d e g r i e f and l o s s . One o f t h e t h i n g s t h a t these young a d u l t s "gr i eved" over was t h e i r l e s s t h a n p e r f e c t performances a t l i f e t a s k s , "My marks i n s c h o o l have dropped c o n s i d e r a b l y s i n c e d e a l i n g w i t h t h i s d i s e a s e , and I sometimes c a n ' t h e l p c r y i n g about t h i s . S c h o o l i s i m p o r t a n t t o me, but i t has had t o t a k e a back s e a t t o my h e a l t h . " In the s t o r i e s we can see t h e emphasis p l a c e d upon the " loss" o f t h e i r performance a b i l i t i e s i n v a r i o u s i m p o r t a n t a c t i v i t i e s because o f C r o h n ' s d i s e a s e o r c o l i t i s , "My i l l n e s s makes my job v e r y h a r d , and now I j u s t do enough t o complete whatever i t i s I have t o d o . My body i s no l o n g e r a b l e t o do t h a t l i t t l e b i t e x t r a t h a t i t used t o . " The p a r t i c i p a n t s a l s o emphasize the " g r i e f " t h e y e x p e r i e n c e over the l o s s o f t h e i r h e a l t h y b o d i e s . "My once h e a l t h y body has been taken o v e r , and i t w i l l never be the same. I 'm no l o n g e r a s o - c a l l e d s t r o n g p e r s o n . " These young a d u l t s p o i n t out t h a t t h e i r b o d i e s s u f f e r e s p e c i a l l y from f e e l i n g s o f weakness. "A s l u g , t h a t ' s how I f e e l , a s l u g and even a weak s l u g sometimes. My body can b a r e l y ge t up i n the mornings anymore." In the s t o r i e s they " g r i e v e t h e l o s s " o f t h e i r h e a l t h y b o d i e s b e f o r e C r o h n ' s d i s e a s e o r c o l i t i s "took o v e r . " " I ' v e l o s t so much. My l i f e f e e l s so much more d e v o i d o f a n y t h i n g i m p o r t a n t t o me s i n c e I ' v e had t h i s i l l n e s s . I ' v e l o s t so much. I t ' s even h a r d t o f i n d meaning now." A n o t h e r e lement o f t h e l i f e e x p e r i e n c e s o f young a d u l t s w i t h C r o h n ' s d i s e a s e or c o l i t i s i s t h a t these i l l n e s s e s cause them t o have t o say "no" to a c t i v i t i e s t h a t b r i n g t h e i r l i v e s enjoyment and meaning. They r e c o g n i z e t h a t t h e i r " invo lvement i n e n j o y a b l e a c t i v i t i e s has t o g r e a t l y d e c l i n e . " As t h i s p a r t i c i p a n t emphasizes: I know I have t o g i v e up some of the s p o r t s I do , but i t i s so v e r y h a r d t o do t h a t when you l o v e them so much, and they h e l p t o b r i n g joy i n t o your l i f e . " S o r r y , n o , " i s a l i n e I have had t o r e p e a t t o f r i e n d s t o o many t imes now. An example o f t h i s theme from a male p a r t i c i p a n t goes as f o l l o w s : I have t o l o o k f o r o t h e r hobbies i n my l i f e because a t t h e moment I c a n ' t do any o f the ones t h a t I used t o , and I guess they have t o be l e s s p h y s i c a l . I ' v e had t o g i v e up so much of the p h y s i c a l p a r t o f who I am. A n o t h e r p a r t i c i p a n t s t a t e s t h a t , "I know I have t o say *no' t o d o i n g some t h i n g s i f I'm not f e e l i n g w e l l , e s p e c i a l l y s p o r t s and t r a v e l l i n g . " "I can b a r e l y l e a v e my home now, and i f I do , i t ' s g e n e r a l l y w i t h the c a r , no w a l k i n g anymore. H a v i n g t o g i v e up t a k i n g walks has been a huge t h i n g t o me." The p a r t i c i p a n t s a r e " f o r c e d t o g r i e v e over the l o s s " o f many t h i n g s they can no l o n g e r do o r do as o f t e n , "I s t i l l do i t but not as o f t e n , and I guess I ' l l j u s t have t o a c c e p t t h a t . But a c c e p t i n g i t i s h a r d , I s t i l l r e a l l y miss d o i n g i t . " H a v i n g C r o h n ' s d i s e a s e or c o l i t i s causes an a s sor tment o f l o s s e s o f e n j o y a b l e a c t i v i t i e s i n which these young ' a d u l t s g r i e v e o v e r . "I f e e l r e a l s a d , s u r e , no d o u b t , and o v e r a l o t o f t h i n g s . I f I thought about i t I ' d p r o b a b l y f a l l i n t o some t y p e o f deep d e p r e s s i o n . " Another p a r t i c i p a n t ' s e x p e r i e n c e i n d i c a t e s : I c o n s t a n t l y f e e l unhappy when I contemplate my l i f e t h a t I had , and a l l the fun a c t i v i t i e s t h a t I d i d , and how i t i s now dead. I t a lmost makes me f e e l l i k e I am i dead sometimes, and t h a t ' s not a n i c e f e e l i n g . I dream so o f t e n about the way my l i f e was. E x i s t e n c e was so much e a s i e r and g r a t i f y i n g b e f o r e I got t h i s d e p l e t i n g i l l n e s s . A n o t h e r p a r t i c i p a n t s t a t e s t h a t , " T h i s i l l n e s s has t a k e n so much and l e f t so l i t t l e . Oh, how I l o n g f o r my l i f e b e f o r e t h i s t h i n g . " The p r e s e n t s tudy s u p p l i e s c l e a r s u p p o r t f o r how h a v i n g a c h r o n i c i l l n e s s can cause r e m i n i s c e n c e about former good t imes and l e a d t o g r i e f over the l o s s o f t h e s e more e n j o y a b l e t i m e s . 2 . 1 Performance a b i l i t i e s Performance a b i l i t i e s are a b i l i t i e s which a l l o w the i n d i v i d u a l t o be competent a t v a r i o u s l i f e t a s k s they f a c e . The s t o r i e s p r o v i d e examples o f g r i e v i n g over the " l o s s o f per formance a b i l i t i e s " a f t e r d e v e l o p i n g C r o h n ' s d i s e a s e o r c o l i t i s : T h i s d i s e a s e has degraded my performance i n e v e r y t h i n g , I mean t h i s f u l l y , and I c a n ' t h e l p but emphasize t h i s . I t ' s a low p o i n t i n a p e r s o n ' s l i f e when they r e a l i z e they c a n ' t meet the s tandards t h a t they used t o be a b l e t o . The p a r t i c i p a n t s ' performance a b i l i t i e s i n v a r i o u s a c t i v i t i e s a r e g r e a t l y h i n d e r e d by h a v i n g C r o h n ' s d i s e a s e o r c o l i t i s and t h i s c r e a t e s f e e l i n g s o f "sadness" over t h e l o s s o f t h e s e a b i l i t i e s , "As a consequence o f my c o n d i t i o n , my grades s u f f e r e d q u i t e a b i t . " Another i l l u s t r a t i o n o f t h i s theme i s t o l d as f o l l o w s : E v e r y t h i n g t a k e s a t u r n f o r the w o r s t , i n c l u d i n g my j o b p e r f o r m a n c e , but I c a n ' t h e l p i t , what am I supposed t o do , I am d o i n g my b e s t , and I j u s t have t o keep w i t h i t . I have t o a c c e p t t h a t I c a n ' t do as w e l l , a t l e a s t not a t the moment. These young a d u l t s f e e l t h a t w i t h o u t C r o h n ' s d i s e a s e o r c o l i t i s they c o u l d do much b e t t e r , "Most ly I f e e l t h a t I h a v e n ' t done as w e l l as I c o u l d have i n my j o b because o f my i l l n e s s . " " T h a t ' s j u s t the way i t i s . Some o f t h e s e t h i n g s , such as my l e s s than p e r f e c t s c h o o l r e c o r d , a r e t h e w o r s t . " Some o f them s t a t e d t h a t the e f f e c t s o f C r o h n ' s d i s e a s e o r c o l i t i s on t h e i r performance a b i l i t i e s cause them t h e i r most " c r i t i c a l l i f e p r o b l e m s . " 2.2 Body and p o s i t i v e body image G r i e v i n g "over the l o s s " o f t h e i r h e a l t h y b o d i e s p e r v a d e s the p a r t i c i p a n t s ' e x p e r i e n c e s . F o r some of t h e s e young a d u l t s t h e l o s s o f t h e i r h e a l t h y b o d i e s and the n e g a t i v e body image t h a t they are f a c e d w i t h appears t o have a "deeper s i g n i f i c a n c e than any of the o t h e r l o s s e s " t h a t they e x p e r i e n c e . " T a l k about l o s i n g y o u r s e l f . When your body goes , you go, and t h a t ' s the w o r s t . " They r e c o g n i z e t h a t t h e image o f t h e i r b o d i e s as "weak, s i c k and t i r e d " i s something t h a t t r o u b l e s them, " F e e l i n g weak, was something t h a t b o t h e r e d me, because I d i d n ' t have the s t r e n g t h I used t o . " A n o t h e r example o f t h i s theme i s expressed by a p a r t i c i p a n t w i t h C r o h n ' s d i s e a s e : I have t o g i v e up the dream of the p a s t l i f e when I had a h e a l t h y s t r o n g body and c o u l d do a n y t h i n g . But i t ' s h a r d , because f o r me I t h i n k i t ' s one o f the h a r d e s t t h i n g s t o a c c e p t i s t h a t my body i s no l o n g e r w e l l . The p a r t i c i p a n t s "emphasize the l o s s " o f t h e i r h e a l t h y b o d i e s and p o s i t i v e body image as one o f the most d i f f i c u l t a s p e c t s o f h a v i n g t h i s i l l n e s s , "I t h i n k one o f t h e h a r d e s t t h i n g s t o d e a l w i t h i n terms o f my body was t h a t i t was never g o i n g t o be h e a l t h y a g a i n . " "Never a g a i n , t h o s e a r e two h a r d words , and t h e y ' r e the t r u t h o f my e x i s t e n c e , and I ' l l a l w a y s , always miss my h e a l t h . " T h e i r b o d i e s b e f o r e h a v i n g C r o h n ' s d i s e a s e or c o l i t i s are " g r e a t l y m i s s e d . " 2.3 E n j o y a b l e a c t i v i t i e s E n j o y a b l e a c t i v i t i e s i n c l u d e p l a y i n g s p o r t s , e x e r c i s i n g , and t r a v e l l i n g . The p a r t i c i p a n t s r e c o g n i z e t h a t t h e i r " invo lvement i n e n j o y a b l e a c t i v i t i e s has t o d e c r e a s e . " A p a r t i c i p a n t w i t h c o l i t i s expresses one o f the e f f e c t s o f h e r c h r o n i c i l l n e s s t h u s : T h e r e ' s another t h i n g , I c a n ' t p l a y r a c q u e t b a l l anymore, one o f my main t r u e l o v e s , and I may be a b l e t o a g a i n sometime, a t l e a s t I c e r t a i n l y hope so , but f o r now I have t o g i v e i t up . I have t o g i v e i t up , t h a t ' s a l l t h e r e i s t o i t . A n o t h e r p a r t i c i p a n t s t a t e s t h a t , "I know I have t o g i v e up some t h i n g s i f I 'm not f e e l i n g w e l l , e s p e c i a l l y s p o r t s and t r a v e l l i n g . " "Here we go a g a i n on the t o p i c o f h a v i n g t o g i v e up s t u f f , and r i g h t now I'm the k i n g o f h a v i n g t o g i v e up s t u f f . I j u s t c a n ' t p l a y s p o r t s r i g h t now." These young a d u l t s e x p e r i e n c e d a n e g a t i v e d i f f e r e n c e i n t h e i r a b i l i t y t o p a r t i c i p a t e i n e n j o y a b l e a c t i v i t i e s , "I was a good b a s k e t b a l l p l a y e r , but then I had no energy , and I j u s t c o u l d n ' t do i t anymore." In the f o l l o w i n g s tatement t h i s theme i s c l e a r l y p r e s e n t : I can do a l i t t l e b i t a t a t i m e , but I s u r e have t o pay a t t e n t i o n t o what my body i s t e l l i n g me, and o f t e n i t ' s s a y i n g " s o r r y you j u s t c a n ' t go c y c l i n g t o d a y " . I t ' s d e p r e s s i n g g e t t i n g those messages from a body t h a t used t o say "yes l e t ' s do i t " . H a v i n g t o g i v e up t h e i r l o v e o f b e i n g a c t i v e i n v a r i o u s a c t i v i t i e s i s a huge l o s s t o them: I was i n v o l v e d w i t h a l o t o f s p o r t s . I ' d do a n y t h i n g from a e r o b i c s t o w a l l c l i m b i n g . So, t h a t was a h a r d l o s s , a l o t o f those t h i n g s I j u s t p h y s i c a l l y c o u l d n ' t do them anymore. So now I'm j u s t c l i m b i n g the w a l l s i n a t o t a l l y d i f f e r e n t way. They have a l l had t o g i v e up some a c t i v i t y : I know i t ' s s topped me from d o i n g some t h i n g s . A c t u a l l y I guess i t ' s s topped me from d o i n g a l o t o f t h i n g s , i t ' s h a r d . Somebody might phone up , " l e t ' s go s k i i n g " and i f I 'm not f e e l i n g t h a t g r e a t , "no I d o n ' t r e a l l y f e e l l i k e g o i n g s k i i n g " . A n o t h e r p a r t i c i p a n t s t a t e s t h a t , "I want t o do i t because I l o v e d o i n g i t , i t ' s a p a r t o f me, but I j u s t . c a n ' t anymore. I have t o t a k e i t more easy ." The p a r t i c i p a n t s a r e no l o n g e r a b l e t o be as a c t i v e as they were b e f o r e : I c o u l d n ' t do a n y t h i n g p h y s i c a l . B a s i c a l l y I can o n l y j u s t l i e around and watch T . V . I can watch t h e e x e r c i s e shows, but w h i l e s i t t i n g on my b e h i n d . I c o u l d n ' t e x e r c i s e . I c a n ' t j u s t hop up and j o i n i n . So , t h a t made me f e e l r e a l l y , f e l t r e a l l y bad . A n o t h e r p a r t i c i p a n t s t a t e s t h a t , "You j u s t f e e l b l a h because you can b a r e l y do a n y t h i n g fun anymore, and t h a t ' s r e a l l y l o u s y f e e l i n g . " A l o n g w i t h l o s i n g the a b i l i t y t o e n j o y more p h y s i c a l t y p e a c t i v i t i e s , many o f these young a d u l t s can no l o n g e r f u l l y enjoy many o t h e r t h i n g s such as e a t i n g , "Sad t h a t I c o u l d n ' t even en joy my f a v o u r i t e b r e a k f a s t anymore ." The f o l l o w i n g s tatement echoes t h i s theme: One o f b i g g e s t t h i n g s was g o i n g out t o d i f f e r e n t r e s t a u r a n t s w i t h f r i e n d s and sampl ing d i f f e r e n t t y p e s o f f o o d s , but I c e r t a i n l y c a n ' t do t h a t anymore, u n l e s s t h e y ' r e s e r v i n g e x o t i c f l a v o u r s o f j e l l o . A n o t h e r p a r t i c i p a n t s t a t e s t h a t , "You j u s t ea t because you have t o . You d o n ' t eat out o f enjoyment anymore." T h i s e x p e r i e n c e was both sad and f r u s t r a t i n g : I was sad because so many of the a s p e c t s o f my l i f e t h a t made i t f u l l , I c o u l d no l o n g e r p a r t i c i p a t e , and a n g r y , boy does i t make you angry because you have t o a d j u s t your l i f e so much, and you have t o miss out on so much. I watch o t h e r peop le l i v e my l i f e f o r me i n a way, and t h a t makes me angry , I guess a t them, and a t me. I can watch hockey , but I c a n ' t p l a y i t anymore. I t ' s h a r d e r t o enjoy l i f e as much now t h a t I have t h i s d i s e a s e . A n o t h e r p a r t i c i p a n t s t a t e s t h a t , " I t ' s so h a r d t o f i n d t h i n g s t h a t you can s t i l l do t h a t you e n j o y , and be a b l e t o do them h a l f d e c e n t l y . I t ' s v e r y sad a c t u a l l y . " They e x p r e s s t h a t t h e y a r e " f o r c e d t o g r i e v e over the l o s s o f many t h i n g s " t h a t t h e y used t o e n j o y . "I s t i l l e n j o y l i f e , but I ' v e c e r t a i n l y have had t o g i v e up a l o t , and I ' v e c r i e d a l o t . I t ' s l i k e a f u n e r a l f o r your p a s t l i f e . " "I c r y i n s i d e as I have t o s i t on the s i d e l i n e s o f my o l d l i f e and watch o t h e r s e n j o y the a c t i v i t i e s t h a t I used t o . I d o n ' t e n j o y a lways b e i n g an o b s e r v e r i n s t e a d of a f u l l p a r t i c i p a n t . " H a v i n g C r o h n ' s d i s e a s e or c o l i t i s causes an a s sor tment o f l o s s e s o f e n j o y a b l e a c t i v i t i e s i n which the p a r t i c i p a n t s g r i e v e o v e r : I a lways f e e l so sad when I t h i n k about t h e l i f e t h a t I h a d , and a l l the fun a c t i v i t i e s t h a t I d i d , and how i t i s now gone. L i f e was so much e a s i e r and e n j o y a b l e b e f o r e I got t h i s d r a i n i n g d i s e a s e . A n o t h e r p a r t i c i p a n t s t a t e s , "Past l i f e v e r s u s p r e s e n t l i f e , w e l l I 'm s o r r y t o say the p a s t l i f e wins o u t , and t h a t i s d i s t u r b i n g . Sometimes I t h i n k I spend more t ime t h i n k i n g about the good o l d days then l i v i n g here i n the p r e s e n t . " T h i s p r e s e n t r e s e a r c h s u p p l i e s c l e a r s u p p or t f o r how h a v i n g a c h r o n i c i l l n e s s can cause r e m i n i s c e n c e about former good t i m e s and l e a d t o g r i e f over the l o s s o f t h e s e more e n j o y a b l e t i m e s . 3 . L i f e e x p e r i e n c e s o f young a d u l t s w i t h C r o h n ' s d i s e a s e o r c o l i t i s i n c l u d e a s i g n i f i c a n t l o w e r i n g o f s e l f - e s t e e m A d e c r e a s e i n s e l f - e s t e e m has been i n c l u d e d , by t h e p a r t i c i p a n t s , as one o f the c r i t i c a l e x p e r i e n c e s o f l i v i n g w i t h C r o h n ' s d i s e a s e or c o l i t i s . Many o f these young a d u l t s s t a t e t h a t one o f the h a r d e s t t h i n g s about h a v i n g t h e i r i l l n e s s i s how t h e r e s e l f - e s t e e m has been lowered: I t ' s l i k e I have t o f i n d out who I am a l l over a g a i n , because r i g h t now I d o n ' t r e a l l y l i k e who I am, and I know i t ' s because I see myse l f th rou gh the l o o k i n g g l a s s o f my i l l n e s s . T h i s i s not a good i d e a , because i t makes you see y o u r s e l f as b e i n g p r e t t y u s e l e s s as a human b e i n g . Many emphasize how h a v i n g . C r o h n ' s d i s e a s e o r c o l i t i s causes a "huge blow" t o t h e i r s e l f - i m a g e : I p r e f e r not t o t h i n k about m y s e l f because t h e p i c t u r e i s n ' t v e r y n i c e r i g h t now, and i t ' s b e t t e r t o t r y t o j u s t l i v e l i f e w i t h o u t t h i n k i n g about y o u r s e l f v e r y much. T h i s d i s e a s e has made me f e e l r e a l l o u s y about who I am as a p e r s o n . The p a r t i c i p a n t s f e e l some l o w e r i n g o f t h e i r s e l f - e s t e e m , " W h i r l i n g t h r o u g h e x i s t e n c e i s d e f i n e d by some shame and d i s g u s t about m y s e l f . " " I t ' s hard t o l o o k a t y o u r s e l f i n t h e m i r r o r because you see t h i s s c a r r e d p e r s o n f o r l i f e , and I d o n ' t know how t o get around t h a t v iew. I know i t ' s no good t o t h i n k about y o u r s e l f t h a t way." T h e i r d i s e a s e has made t h e s e young a d u l t s f e e l a g r e a t d imin i shment i n t h e i r sense o f s e l f - w o r t h , "I always f e l t so much l i k e a l o s e r , schmoe." "You c a n ' t h e l p but f e e l a l i t t l e l e s s o f a p e r s o n t h e n what you were b e f o r e they c u t you open and took p a r t s o f y o u r body o u t . I t ' s l i k e b e i n g F r a n k e n s t e i n , no I'm o n l y k i d d i n g , I g u e s s . " Another p a r t i c i p a n t s t a t e s t h a t , "You sometimes f e e l l i k e a f r e a k . " An example o f t h i s theme from a male p a r t i c i p a n t goes as f o l l o w s : I t h i n k o t h e r s look a t you d i f f e r e n t l y , e s p e c i a l l y when you have your s h i r t o f f and they see your stomach has been c u t open f o r some r e a s o n . So, I guess o t h e r s ' r e a c t i o n s have caused me t o o , t o l o o k a t m y s e l f as not q u i t e r i g h t . L i v i n g w i t h a c h r o n i c i l l n e s s has caused a l l o f t h e s e young a d u l t s , a t one t ime or a n o t h e r , t o not f e e l good about t h e m s e l v e s , "made me f e e l r e a l l y bad a l l o v e r . I f e l t , I d o n ' t know, d i r t y o r something . R e a l bad . G e n e r a l yucky f e e l i n g . " Another p a r t i c i p a n t ' s e x p e r i e n c e i n d i c a t e s : S i c k , you j u s t f e e l l i k e a s i c k p e r s o n , because on t h e s u r f a c e t h a t ' s who you a r e , and you have t o d i g deep t o save any sense o f your s e l f - w o r t h . You have t o d i g deep f o r t h i s o r e l s e y o u ' r e not g o i n g t o c a r e about t a k i n g c a r e o f y o u r s e l f . A n o t h e r i l l u s t r a t i o n o f t h i s theme i s t o l d as f o l l o w s , "You j u s t d o n ' t c a r e about y o u r s e l f so much. I f y o u ' r e s i c k , y o u ' r e s i c k , and t h a t ' s the way i t i s . What can you do anyway, r e a l l y . You d o n ' t even have the m o t i v a t i o n t o c a r e about y o u r s e l f r e a l l y . " Another example o f t h i s theme i s e x p r e s s e d by a p a r t i c i p a n t w i t h C r o h n ' s d i s e a s e : I d o n ' t t h i n k about me, I guess cause I d o n ' t l i k e what I might see , and then I ' d f e e l even worse , and i t would be a v i c i o u s c y c l e . I f you d o n ' t c a r e f o r who you a r e a t t h e moment, and you look c l o s e r , then i t ' s o n l y g o i n g t o make i t worse . L i f e e x p e r i e n c e s o f young a d u l t s w i t h C r o h n ' s d i s e a s e o r c o l i t i s i n v o l v e a c o n s i d e r a b l e l e s s e n i n g o f s e l f - r e g a r d , "When y o u ' r e an u g l y , s i c k l i t t l e g i r l , y o u ' r e j u s t t o o f o r e i g n . " A p a r t i c i p a n t w i t h c o l i t i s expres se s one o f the e f f e c t s o f h e r c h r o n i c i l l n e s s t h u s : Y o u ' r e d i f f e r e n t than who you were b e f o r e g e t t i n g t h i s d i s e a s e , and y o u ' r e d i f f e r e n t i n s i d e . I t c a n ' t be h e l p e d . You no l o n g e r have the h e a l t h y normal body t h a t you once had . You c a n ' t h e l p but see y o u r s e l f as somewhat abnormal now. Throughout the s t o r i e s t h e r e are c l e a r e x p r e s s i o n s o f how one o f t h e e f f e c t s o f t h i s c h r o n i c i l l n e s s i s t h a t t h e r e a r e f e e l i n g s o f b e i n g "ugly and a b n o r m a l . " These f e e l i n g s t h e n g r e a t l y a f f e c t the view the p a r t i c i p a n t s t a k e o f t h e m s e l v e s . The p a r t i c i p a n t s p o i n t t o how the i l l n e s s f r e q u e n t l y e l i c i t s d i s c o m f o r t from o t h e r s and how t h i s causes a c r i t i c a l blow t o t h e i r s e l f - e s t e e m : I t r y so h a r d t o a v o i d h a v i n g peop le f i n d out t h a t I have t h i s i l l n e s s because i t ' s such a c o n v e r s a t i o n s t o p p e r , and i t makes peop le u n c o m f o r t a b l e . When they, f e e l u n c o m f o r t a b l e then I f e e l u n c o m f o r t a b l e , and so on , and so on . I b a s i c a l l y become u n c o m f o r t a b l e w i t h m y s e l f . I t a l s o makes me f e e l r e a l l o u s y about m y s e l f because t h e y ' r e uncomfor tab le w i t h me and who I am as a p e r s o n , my d i s e a s e i s p a r t o f me, t h a t ' s j u s t t h e way i t i s u n f o r t u n a t e l y . In t h e f o l l o w i n g s tatement t h i s theme i s c l e a r l y p r e s e n t : My d i s e a s e i s a p a r t o f me, and I have t o a c c e p t i t , and h o p e f u l l y the peop le around me can a c c e p t i t , and the changes i t may cause i n my l i f e , and i n r e l a t i o n t o them. But so f a r a l o t o f peop le around me have been uneasy i n t h e i r r e a c t i o n s t o me now, s i n c e they know I have t h i s c h r o n i c t h i n g i n s i d e me. Many o f t h e s e young a d u l t s emphasize how h a v i n g C r o h n ' s d i s e a s e o r c o l i t i s commonly evokes u n e a s i n e s s from o t h e r s and how t h i s has a huge impact on t h e i r s e l f - i m a g e . Academic succes s and upward movement a t work, r e g u l a r l y a s i g n i f i c a n t source o f s e l f - e s t e e m , can be s e v e r e l y r e s t r i c t e d when h a v i n g t o d e a l w i t h these i l l n e s s e s : I j u s t h a v e n ' t been a b l e to do my b e s t a t work, and t h i s makes me f e e l l o u s y about myse l f because I c a n ' t ge t anywhere. I can o n l y do what my h e a l t h a l l o w s me t o do , and sometimes t h a t ' s not v e r y much. Sometimes i t ' s no t v e r y much a t a l l , and t h a t ' s h a r d t o f a c e up t o . I 'm s u r p r i s e d I even s t i l l have a j o b . The f o l l o w i n g s tatement echoes t h i s theme, "I have t o miss so many unplanned days , and so f i n i s h i n g something seems t o t a k e a l o t l o n g e r . How am I supposed t o move up the l a d d e r o f s u c c e s s h e r e , I can b a r e l y make i t t o the f i r s t r u n g . " P a r t i c i p a n t s r e p e a t e d l y e x p e r i e n c e h a v i n g t o t a k e t ime o f f o f s c h o o l o r work when t h e i r i l l n e s s a c t s up and i n t u r n t h i s a f f e c t s t h e i r l i k e l i h o o d of a c h i e v i n g h i g h s t a n d a r d s : I ' v e had every second exam d e f e r r e d , I ' v e . h a d e x t e n s i o n a f t e r e x t e n s i o n . I'm j u s t l u c k y I have an u n d e r s t a n d i n g department . I guess the next t h i n g i s t o g i v e m y s e l f a b r e a k , because I d o n ' t , and sometimes d o n ' t t r e a t m y s e l f w e l l enough, and then t h i s d e s t r o y s r e a l l y who I am as a p e r s o n . W i t h t h e i r i n a b i l i t y , a t t i m e s , t o a c h i e v e h i g h s t a n d a r d s , comes a l o w e r i n g o f t h e i r s e l f - e s t e e m . 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 f e e l i n g s o f u n e a s i n e s s and blame because o f h a v i n g C r o h n ' s d i s e a s e o r c o l i t i s . T h i s i n t u r n n e g a t i v e l y a f f e c t e d the way these young a d u l t s r e g a r d e d t h e m s e l v e s : I sometimes f e e l l i k e I am somehow t o blame f o r h a v i n g C r o h n ' s d i s e a s e , because t h e r e r e a l l y i s nobody e l s e t o blame, and , and I become uncomfor tab le around p e o p l e t h a t suggest t h a t I am to blame f o r h a v i n g i t . I f I am t o blame f o r h a v i n g i t , where does t h a t l e a v e me, and how am I t o f e e l about myse l f and my a b i l i t y t o h e a l m y s e l f . I ' l l t e l l you , i t l eaves me i n a r e a l l y low p l a c e . T h i s makes me f e e l l i k e I am a r e a l l o s e r . The f o l l o w i n g s tatement c o n t i n u e s e l a b o r a t i n g on t h i s theme: R e a l l y , r e a l l y a w f u l . I d o n ' t know how t o do d e a l w i t h t h i s blame t h a t some peop le put upon me, and t h e n I put i t on m y s e l f a t low p o i n t s . I f I am t o put t h i s blame upon m y s e l f i t o n l y s e r ve s t o e x a c e r b a t e my a l r e a d y d e c l i n i n g f e e l i n g s o f w o r t h w h i l e n e s s . F e e l i n g blamed was another noted c o n t r i b u t i n g agent t o a l o w e r i n g o f some o f the p a r t i c i p a n t s s e l f - e s t e e m . 4. The e x p e r i e n c e s e n t a i l e d i n the l i v e s o f young a d u l t s w i t h C r o h n ' s d i s e a s e or c o l i t i s i n c l u d e a marked i n c r e a s e i n f e e l i n g s o f f e a r or a n x i e t y F e a r and a n x i e t y are common e x p e r i e n c e s f o r young a d u l t s w i t h C r o h n ' s d i s e a s e or c o l i t i s . The p a r t i c i p a n t s f e l t s c a r e d when they f i r s t began f e e l i n g s i c k . "I was t e r r i f i e d . What was g o i n g on i n s i d e me?" They do not know what i s wrong w i t h them, "Throughout my f i r s t year o f u n i v e r s i t y I was s i c k , and p r o g r e s s i v e l y g e t t i n g worse w i t h o u t knowing what was wrong, and t h i s was v e r y s c a r y . " "Oh s u r e , r e a l a n x i o u s . You f e e l c o m p l e t e l y i n c a p a c i t a t e d , and no one can t e l l you w h a t ' s wrong ." In the s t o r i e s we can see how they e x p e r i e n c e d l i v i n g i n "constant f e a r " w i t h C r o h n ' s d i s e a s e o r c o l i t i s . " C r o h n ' s d i s e a s e has f i l l e d my e n t i r e e x i s t e n c e w i t h f e a r and I . j u s t d o n ' t know. I f e e l t h i s f e a r so o f t e n . " These young a d u l t s emphasized f e e l i n g "very s c a r e d " w i t h h a v i n g t h i s i l l n e s s . " T h i s i l l n e s s does t h a t t o y o u , and I d o n ' t t h i n k i t ' s something t h a t ' s g o i n g t o end . I t h i n k I ' l l a lways have t h i s f e a r as l ong as I have t h i s i l l n e s s . " "One s i t u a t i o n t o a n o t h e r , t h e r e a l l new now r e a l l y , and t h e y a l l cause a t t a c k s o f a n x i e t y , because y o u ' r e e n t e r i n g i n t o them w i t h t h i s i l l n e s s . Even o l d everyday r e s p o n s i b i l i t i e s t a k e on new f e a r w i t h t h i s i l l n e s s . " In the s t o r i e s t h e r e a r e many i n c i d e n t s i n which the p a r t i c i p a n t s expres s how t h e y l i v e w i t h a l o t o f a n x i e t y e s p e c i a l l y w h i l e they a r e i n v o l v e d i n a l i f e t a s k such as s c h o o l o r work, "There was t h e c o n s t a n t worry o f i f I would be okay t o make i t t o work, and t h r o u g h the day e t c . " "Fear o f e v e r y t h i n g i n v o l v e d i n y o u r day and f e a r o f how you w i l l handle i t i f you were t o f e e l s i c k . So much of l i v i n g w i t h t h i s i l l n e s s i s an unknown." So much i s unknown about C r o h n ' s d i s e a s e and c o l i t i s and the f e a r and a n x i e t y appear t o be p r i m a r i l y r e l a t e d t o t h i s u n c e r t a i n t y : L i v i n g w i t h t h i s i l l n e s s , I guess i n a way i t ' s n a t u r a l t o f e e l s c a r e d . I f you thought about i t , I t h i n k i t would be more u n h e a l t h y t o k i d y o u r s e l f i n t o t h i n k i n g e v e r y t h i n g i s a l r i g h t , because so much i s l i k e t h e b i g unknown, and y o u ' r e l i v i n g w i t h i t i n s i d e o f y o u . Not knowing a n y t h i n g about the i l l n e s s causes a l o t o f f e a r . F e a r o f the h o s p i t a l i s a fundamental one t h a t p e r v a d e s 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 , "I remember b e i n g q u i t e s c a r e d and a n x i o u s about my i l l n e s s and i t had t o do w i t h b e i n g i n t h e h o s p i t a l . The h o s p i t a l i s the worst p a r t o f i t a l l . " A n o t h e r p a r t i c i p a n t emphasizes , "The h o s p i t a l , now t h e r e i s one s c a r y p l a c e . You never when t h e r e g o i n g t o poke you w i t h a n e e d l e o r do some o t h e r h o r r i b l e t h i n g . " A d i s t i n c t i o n can a l s o be made between f e a r o f the h o s p i t a l and f e a r o f m e d i c a l t e s t s and p r o c e d u r e s e x p e r i e n c e d w h i l e i n the h o s p i t a l , "My t ime spent i n the h o s p i t a l a r e some o f the wors t i n my l i f e , and a l l those t e r r i f y i n g l y d i s g u s t i n g t e s t s t h a t y o u ' r e put through w h i l e y o u ' r e t h e r e . The h o s p i t a l and the t e s t s a r e the worst t h i n g s I ' v e e v e r e x p e r i e n c e d . " There are a v a r i e t y o f t e s t s a d m i n i s t e r e d t o t h o s e w i t h C r o h n ' s d i s e a s e or c o l i t i s ( i e . Bar ium swal low X - r a y s , C o l o n o s c o p i e s , v a r i o u s b l o o d t e s t s , e t c . ) : I t was a l l so new f o r me and I d i d n ' t u n d e r s t a n d , y o u ' r e weak and low on b l o o d t o b e g i n w i t h , and t h e n t h e y ' r e p o k i n g every day f o r more t o see i f you have enough. I t j u s t d o e s n ' t make sense sometimes. Many o f these young a d u l t s expressed how they had never e x p e r i e n c e d b e i n g i n the h o s p i t a l and g o i n g t h r o u g h t h e s e t y p e s o f p r o c e d u r e s , and found i t "very a n x i e t y p r o v o k i n g . " S e e i n g s i g n i f i c a n t o t h e r s worry about what the p a r t i c i p a n t s a r e g o i n g through can i n c r e a s e the a l r e a d y p r e s e n t f e a r and a n x i e t y t h a t l i v i n g w i t h C r o h n ' s d i s e a s e o r c o l i t i s c a u s e s . " E v e r y t h i n g was v e r y new and s c a r y t o me, s e e i n g t h e l o o k s on my p a r e n t s ' f aces d i d n ' t h e l p e i t h e r , and o n l y caused me t o be more f e a r f u l . " T h i s p a r t i c i p a n t r e f l e c t s on a p a s t memory: I l o o k e d i n the m i r r o r and I saw t e r r o r , and t h e n I l o o k e d t o my f a m i l y f o r comfort but they c o u l d n ' t h e l p b e i n g t e r r i f i e d f o r t h e i r c h i l d e i t h e r . The bad t h i n g was though , t h a t s e e i n g them s c a r e d o n l y made me more s c a r e d . These young a d u l t s s t a t e d t h a t they e x p e r i e n c e f e a r r e g u l a r l y and t o see o t h e r s w o r r y i n g about them o n l y enhances t h e i r own f e e l i n g s o f " in tense f e a r . " F e e l i n g s caused by C r o h n ' s d i s e a s e o r c o l i t i s i n c l u d e : " a n x i e t y , " " f e a r , " " d e s p a i r , " " g u i l t , " "worry ," " n e r v o u s n e s s , " " f r u s t r a t i o n , " "anger ," and " g u i l t . " These overwhelming emotions c a n , a t t i m e s , become t o o much t o d e a l w i t h and a l s o cause the p a r t i c i p a n t s t o f e e l a f r a i d o f t h e i r own overpower ing f e e l i n g s , "Sometimes I j u s t ge t a f l o o d o f emot ions come up and i t ' s ex tremely s c a r y , because i t f e e l s l i k e t h e y ' r e j u s t g o i n g t o take o v e r . I ' v e become a f r a i d o f my own f e e l i n g s . " An element o f t h e i r s i t u a t i o n s i n c l u d e e x p e r i e n c i n g "one f e a r a f t e r a n o t h e r . " Another p a r t i c i p a n t s t a t e s t h a t : I d o n ' t t h i n k I ' v e ever f e l t a t peace s i n c e h a v i n g C r o h n ' s d i s e a s e because I'm s c a r e d of i t most o f the t i m e , and t h e r e ' s so much t o be s c a r e d o f . I t seems a l o t o f your l i f e i s , i s spent w o r r y i n g about your h e a l t h . A l l t h e s e young a d u l t s remembered how t h e i r f e e l i n g s o f f e a r used up what l i t t l e energy they had f o r a c t u a l l i f e t a s k s , "It would be q u i t e f r u s t r a t i n g because most o f my energy went i n t o w o r r y i n g i f I would make i t t o and t h r o u g h my exam r a t h e r t h a n on the exam i t s e l f . " "No wonder work was so h a r d , I spent so much t ime h a v i n g t o worry about my i l l n e s s and how i t might a f f e c t my work. Meanwhile i t was a l r e a d y a f f e c t i n g my work." Another component o f the p a r t i c i p a n t s ' e x p e r i e n c e s was r e l a t e d t o a d d i t i o n a l numbers o f w o r r i e s . "My C r o h n ' s has g i v e n me so much more t o worry about and I h a t e i t . I never know how and when i t w i l l a f f e c t my l i f e . " They e x p e r i e n c e a n x i e t y over how the i l l n e s s symptoms w i l l e f f e c t "each moment" of t h e i r l i v e s , "I f i n d I worry a l o t about my c o n d i t i o n . " " I t ' s a c h r o n i c i l l n e s s , t h a t means i t ' s not g o i n g t o go away, and i t w i l l c o n t i n u a l l y cause some form o f d i s t r e s s i n my l i f e . The problem i s I d o n ' t know when the worst o f i t w i l l happen." The young a d u l t s worry about whether , " i f a t some t ime d u r i n g the d a y , " t h e y w i l l " s t a r t f e e l i n g s i c k . " "I f e e l s i c k most o f the t i m e , so i t ' s j u s t become a r e g u l a r t h i n g . But I do s t i l l worry about i t . " The f u t u r e s c a r e s the p a r t i c i p a n t s , " i t ' s s c a r y because I d o n ' t know what ' s g o i n g t o happen." "Unknown, t h a t ' s a b i g word , but i t ' s the d e f i n i t i o n o f l i f e now and i n the f u t u r e . T h i s i s what makes me t r u l y s c a r e d . " They a r e a l l a f r a i d o f t h i n g s t h a t they never f e l t a f r a i d o f b e f o r e : I f e l t v e r y anx ious and nervous . Nervous about s i l l y t h i n g s , and t h i n g s y o u ' d t h i n k a p e r s o n w o u l d n ' t f e e l nervous about . I never used t o be s c a r e d o f t h e s e t h i n g s . T h i n g s t h a t I would never f e e l a n x i o u s and nervous about , l i k e g e t t i n g t o s c h o o l . An example o f t h i s theme from a male p a r t i c i p a n t goes as f o l l o w s : A t work I s t a r t e d f e e l i n g s c a r e d because I never know w h a t ' s g o i n g t o happen w i t h my h e a l t h t h a t p a r t i c u l a r day , and who knows, I never know i f I'm g o i n g t o have t o , maybe have t o l e a v e . Who knows, I may have t o l e a v e t h i s i n t e r v i e w because o f some symptom t a k i n g o v e r . A n o t h e r p a r t i c i p a n t s t a t e s t h a t , "I remember g e t t i n g a n x i o u s , a l o t more anx ious then I n o r m a l l y would b e . " "I was a r i s k t a k e r , and I mean t h a t i n a p o s i t i v e way. But now I ' v e j u s t become a bunch of s c a r e d bones ." A more c l e a r d i s t i n c t i o n w i l l now be made between t h e f o l l o w i n g sub-themes o f f e a r and a n x i e t y : a) over unknown i l l n e s s b) over h o s p i t a l e x p e r i e n c e s c) m e d i c a l t e s t s and p r o c e d u r e s d) s e e i n g o t h e r s worry , and e) overwhelming emot ions : 4 .1 Unknown i l l n e s s So much i s unknown about C r o h n ' s d i s e a s e and c o l i t i s which causes a g r e a t d e a l o f f e a r and a n x i e t y f o r t h o s e l i v i n g w i t h i t . Many o f the p a r t i c i p a n t s had never h e a r d o f C r o h n ' s d i s e a s e o r c o l i t i s when they were f i r s t d i a g n o s e d , "I had never even h e a r d about Inf lammatory Bowel D i s e a s e and I remember f e e l i n g v e r y s c a r e d about t h i s . " "Of c o u r s e y o u ' r e s c a r e d , y o u ' r e d iagnosed w i t h some c h r o n i c i l l n e s s and no one i n your f a m i l y has ever heard of i t . F i r s t your i n p a i n and t h e n y o u ' r e j u s t s c a r e d s t i f f . " A l l these young a d u l t s have e x p e r i e n c e d f e e l i n g f r i g h t e n e d , "Once upon a t ime I began t o ge t i n c r e d i b l e abdominal p a i n s and I was s c a r e d . " "I was s c a r e d o f the symptoms themselves and how t h e y were making me f e e l . A l l t h i s p a i n and d i s c o m f o r t . " Many o f them p o i n t t o f e a r as b e i n g one o f the p r i m a r y e x p e r i e n c e s i n h a v i n g t h e i r i l l n e s s , "I'm s c a r e d about the f u t u r e and how t h i s i l l n e s s i s g o i n g t o a f f e c t i t and t h a t ' s j u s t t h e wors t o f i t . " Another example o f t h i s theme i s e x p r e s s e d by a p a r t i c i p a n t w i t h C r o h n ' s d i s e a s e : The f u t u r e i s t o t a l l y unknown, I guess f o r everyone i t g e n e r a l l y i s , but I t h i n k w i t h h a v i n g a c h r o n i c i l l n e s s i t makes i t even more u n p r e d i c t a b l e , and t h a t ' s one o f t h e h a r d e s t t h i n g s t o l i v e w i t h . W i l l I a lways be f e e l i n g t h i s l ousy? A n o t h e r p a r t i c i p a n t s t a t e s t h a t , " I t ' s s c a r y because I h a v e n ' t , t h r o u g h t h i s whole t ime p e r i o d , gone i n t o r e m i s s i o n . " "I'm s i c k on and o f f , and more on t h a n o f f . I f I 'm always g o i n g t o be t h i s way, how w i l l I r e a c h any o f my g o a l s f o r my f u t u r e ? " I t s c a r e s many o f the p a r t i c i p a n t s when t h e y t h i n k about t h e i r f u t u r e and how t h e i r i l l n e s s w i l l e f f e c t i t : I t w o r r i e s me. Yeah, I 'm sometimes overwhelmed w i t h w o r r y , and I t h i n k what ' s g o i n g t o happen. How w i l l I d e v e l o p w i t h a normal l i f e . I t h i n k , when I g e t o l d e r , and I do have k i d s , am I g o i n g t o ge t s i c k ? I d o n ' t want t o be s i c k a l l the t i m e , a l l my l i f e , and c a n c e r i s ano ther t h i n g , i f y o u ' v e had i t f o r t h e n t e n y e a r s . T h a t r e a l l y s c a r e s me, and i t ' s a b i g p o s s i b i l i t y . Sometimes I d o n ' t know how t o d e a l w i t h a l l o f i t . So, t h i n g s l i k e t h a t are w o r r y i n g me now. A p a r t i c i p a n t w i t h c o l i t i s expresses one the e f f e c t s o f h e r c h r o n i c i l l n e s s t h u s : A l l t h e s e w o r r i e s now, t h e r e ' s p r o b a b l y numerous I c o u l d ment ion , but I guess the b i g g e s t one i s worry about my f u t u r e , because t h e r e i s so much unknown about C r o h n ' s . I d o n ' t r e a l l y know what i t h o l d s i n s t o r e f o r me. Not knowing v e r y much about the i l l n e s s and how i t w i l l e f f e c t t h e i r f u t u r e l i v e s causes a l o t o f f e a r . 4.2 Unknown h o s p i t a l F e a r o f the h o s p i t a l i s a c e n t r a l one t h a t pervades 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 appears , f o r many, t o have a deeper meaning than some of the o t h e r f e a r s , "I remember b e i n g q u i t e s c a r e d and a n x i o u s , and t h i s had t o do w i t h b e i n g i n the h o s p i t a l . The h o s p i t a l i s one o f the s c a r i e s t p l a c e s I have ever been ." These young a d u l t s s t a t e d t h a t t h e i r h o s p i t a l e x p e r i e n c e s caused an "overwhelming sense o f f e a r . " "The h o s p i t a l i s l i k e a house o f h o r r o r s , and t h e r e i s a lways something s c a r y l u r k i n g around the next c o r n e r . I ' v e never f e l t so s c a r e d i n my l i f e as when I was i n t h e h o s p i t a l . " The s i t u a t i o n s e n t a i l e d i n the l i v e s o f young a d u l t s w i t h C r o h n ' s d i s e a s e o r c o l i t i s i n v o l v e a prominent i n c r e a s e i n f e e l i n g s o f f e a r and a n x i e t y caused by t h e i r h o s p i t a l e x p e r i e n c e s , "I d i d n ' t be long i n the h o s p i t a l . I be longed a t home w i t h my w i f e and I be longed a t work. She was s c a r e d . I was s c a r e d . " A d i s t i n c t i o n can a l s o be made between f e a r o f the h o s p i t a l and f e a r o f m e d i c a l t e s t s and p r o c e d u r e s e x p e r i e n c e d w h i l e i n the h o s p i t a l . 4.3 T e s t s T h e r e a r e a v a r i e t y o f t e s t s a d m i n i s t e r e d t o t h o s e w i t h C r o h n ' s d i s e a s e o r c o l i t i s . The p a r t i c i p a n t s ' e x p e r i e n c e s o f m e d i c a l t e s t s caused an "overwhelming sense o f f e a r " , "I remember b e i n g q u i t e s c a r e d about h a v i n g t o undergo a l l t h e s e d i f f e r e n t t e s t s . " In the f o l l o w i n g s tatement t h i s theme i s c l e a r l y p r e s e n t : They wheel you i n t o some room and then t h e h e l l b e g i n s , and i t ' s u n b e l i e v a b l y s c a r y . I ' v e never seen i n s t r u m e n t s l i k e t h a t b e f o r e . A l l these p r o c e d u r e s were v e r y new t o me. When I was d iagnosed w i t h the i l l n e s s i t was j u s t one new s c a r y t h i n g a f t e r a n o t h e r . The f o l l o w i n g s tatement echoes t h i s theme, " C r o h n ' s d i s e a s e has made me e x p e r i e n c e a t o t a l l y d i f f e r e n t r e a l i t y , and i n a way, i t ' s u n r e a l . I t c e r t a i n l y was never p a r t o f my e x p e r i e n c e b e f o r e h a v i n g C r o h n ' s . " The t e s t e x p e r i e n c e s f o r many o f t h e s e young a d u l t s were f r i g h t e n i n g because t h e y had never gone t h r o u g h a n y t h i n g l i k e them b e f o r e : The t e s t s , yeah , t h a t was r e a l l y s c a r y too because I ' d never done a n y t h i n g l i k e t h a t b e f o r e . Wow, d i d t h e y h u r t , and were they s c a r y . I t seems so u n b e l i e v a b l e when you have a l i t t l e d i s t a n c e away from i t , and t o be t a l k i n g about i t now i n a mat ter o f f a c t manner. So, when they d i d l i k e a scope , so t h a t was s t r a n g e f o r me, because i t was l i k e a l l r e a l l y d i f f e r e n t . The b a r i u m t e s t s , now t h e r e were some r e a l l y awful ones , and the t a s t e o f t h a t s t u f f . I f the d i s e a s e d i d n ' t make you nauseous then those t e s t s c e r t a i n l y wou ld . I t was s c a r y . A n o t h e r p a r t i c i p a n t s t a t e s , " F e a r , major f e a r . I never have gone t h r o u g h the s t u f f I have t o now." Many o f them e x p r e s s how t h e y had never e x p e r i e n c e d g o i n g th rou gh these t y p e s o f p r o c e d u r e s b e f o r e and found them "very a n x i e t y p r o v o k i n g . " 4.4 S e e i n g s i g n i f i c a n t o t h e r s worry S e e i n g s i g n i f i c a n t o t h e r s worry can i n c r e a s e the a l r e a d y p r e s e n t f e a r and a n x i e t y t h a t l i v i n g w i t h C r o h n ' s d i s e a s e o r c o l i t i s c a u s e s . The p a r t i c i p a n t s s t a t e t h a t they e x p e r i e n c e f e a r r e g u l a r l y and t o see o t h e r s w o r r y i n g about them o n l y enhances t h e i r own f e e l i n g s o f " in tense f e a r . " "You l o o k t o p e o p l e t o ca lm your nerves but they c a n ' t h e l p you because t h e i r n e r v e s a r e shot t o o , and they a lmost need r e a s s u r i n g from y o u . I t ' s funny how you almost b e g i n t o p l a y t h a t r o l e a l i t t l e . " Another p a r t i c i p a n t s t a t e s t h a t , " E v e r y t h i n g was v e r y new and s c a r y t o me, s e e i n g the l o o k s on my p a r e n t s ' f a c e s d i d n ' t h e l p e i t h e r , and o n l y caused me t o be more f e a r f u l . " "It must have been h o r r i b l e f o r my p a r e n t s t o have a s i c k son i n t h e h o s p i t a l , and I knew they were s c a r e d f o r me. So I guess I knew I sh ou ld be s c a r e d t o o . " "Not o n l y my p a r e n t s , but anyone who v i s i t e d and saw me hooked up t o a l l t h e s e i n t r a v e n o u s gadgets . I was s c a r e d , they were s c a r e d , and i t k i n d o f went around l i k e t h a t . " A l l o f them remember s i g n i f i c a n t o t h e r s b e i n g v e r y s c a r e d : My mom was s c a r e d . Her o n l y c h i l d has an i l l n e s s and h e ' s g o i n g t h r o u g h so much. Boy d i d she s p o i l me a f t e r t h a t . She t r e a t e d me d i f f e r e n t l y , and i n a way t h a t made me t h i n k t h a t t h e r e was r e a l l y something t o be a f r a i d o f . 4 . 5 F e e l i n g s caused by i l l n e s s The s t o r i e s p r o v i d e examples of s i t u a t i o n s where v a r i o u s s t r o n g emotions cause f e a r and a n x i e t y f o r t h e s e young a d u l t s l i v i n g w i t h t h i s i l l n e s s . Sometimes these emot ions cause t h e p a r t i c i p a n t s t o have d i f f i c u l t y t a l k i n g about t h e i r i l l n e s s , "I have r e a l t r o u b l e d i s c u s s i n g my i l l n e s s because , as you can t e l l , t h e r e are many u n r e s o l v e d f e e l i n g s a t t a c h e d t o i t , and t h e r e ' s j u s t so many o f them. So when I t a l k about i t , n a t u r a l l y the f e e l i n g s come up t o . " T a l k i n g about t h e i r d i s e a s e b r i n g s up " u n c o n t r o l l a b l e f e e l i n g s " which they do not want t o e x p e r i e n c e : I know I have a r e a l h a r d t ime t a l k i n g about my c o n d i t i o n w i t h o u t g e t t i n g overwhe lming ly e m o t i o n a l . I d o n ' t want t o have t o always be g e t t i n g e m o t i o n a l , and so I t r y not t o t a l k about i t . I ge t s c a r e d sometimes, o f a l l the se f e e l i n g s i n s i d e me. A l l t h e s e f e e l i n g s a r e such a new and d i f f e r e n t a spec t o f my l i f e t o d e a l w i t h , and they make me v e r y f e a r f u l . A n o t h e r p a r t i c i p a n t s t a t e s t h a t , " T h e r e ' s a l l t h i s s t u f f down t h e r e and I t h i n k i t a l l s t a r t e d b u i l d i n g from t h e moment I s t a r t e d f e e l i n g p a i n i n my stomach. So t h e r e ' s l o t s o f s c a r y s t u f f down t h e r e . " These young a d u l t s f e e l s c a r e d o f a l l t h e s e f e e l i n g s , "I'm s c a r e d of my anger and a l l the o t h e r emot ions t h a t h a v i n g C r o h n ' s has caused i n me." "Even j u s t s a y i n g I have C r o h n ' s d i s e a s e c r e a t e s s c a r y f e e l i n g s and t o n s o f o t h e r s t u f f t h a t ' s s c a r y . My body i s c a r r y i n g t h i s d i s e a s e and then a l l these f e e l i n g s a l o n g w i t h i t . " A l l the p a r t i c i p a n t s f e e l t h a t t h e i r body i s c a r r y i n g around a p e r s o n t h a t f e e l s s c a r e d and unsafe w i t h i t s e l f : R o l l i n g thr ough l i f e i s c h a r a c t e r i z e d by a f a i r amount o f f e a r . Fear o f the d i s e a s e and f e a r o f a l l t h e f e e l i n g s the d i s e a s e causes . I t h i n k i t ' s a lmost l i k e h a v i n g p a n i c a t t a c k s i n an i n f o r m a l sense . I s t i l l wake up s c a r e d , and f e e l i n g a l l t h i s s t u f f , and not knowing what t o do . An example o f t h i s theme from a male p a r t i c i p a n t goes as f o l l o w s , "Not knowing what t o do w i t h a l l t h e s e f e e l i n g s b u t a c t u a l l y t a l k i n g about them i s h e l p i n g somewhat. You j u s t c a r r y t h i s s t u f f around from so many t h i n g s . " A l l o f them b e l i e v e t h a t t h e i r i l l n e s s has caused them t o f e e l a l o t o f f e a r i n d i f f e r e n t types o f a r e a s : You can ge t nervous about t h i n g s f o r no r e a s o n . W e l l I d o n ' t know i f i t ' s a c t u a l l y f o r no r e a s o n , I mean y o u ' v e got t h i s d i s e a s e , so I'm s u r e t h a t h e l p s t o r e a l l y screw you up . I c e r t a i n l y wasn ' t t h i s way b e f o r e . E v e r y t h i n g ' s f i n e , but t h i s i l l n e s s has caused you t o become l i k e t h a t . F e e l i n g so much f e a r , and then f e e l i n g f e a r because o f f e e l i n g f e a r . I f t h a t makes s ense , cause you see , I have f e e l i n g s o f f e a r , and t h e n j u s t f e e l i n g t h a t f e a r and knowing i t ' s t h e r e causes even more f e a r , and i t k i n d o f goes around i n a v i c i o u s c i r c l e I suppose . T h a t ' s how I see i t . A n o t h e r i l l u s t r a t i o n o f t h i s theme i s t o l d as f o l l o w s : I 'm t r y i n g t o become more aware o f what I 'm f e e l i n g , and t r y t o get r i d o f i t some h e a l t h y way. T h e r e ' s a l l t h i s s c a r y s t u f f and i f I d o n ' t ge t r i d o f i t i t ' s j u s t g o i n g t o b u i l d on top o f each o t h e r and cause me even more u n b e l i e v a b l e f e a r . These overwhelming emotions c a n , a t t i m e s , become too much t o d e a l w i t h and cause these young a d u l t s t o f e e l a f r a i d . 5. The e x p e r i e n c e s o f young a d u l t s w i t h C r o h n ' s d i s e a s e o r c o l i t i s i n v o l v e a g r e a t d e a l o f change and adjus tment i n many d imens ions Change and adjustment i s another i m p o r t a n t a s p e c t o f l i v i n g w i t h C r o h n ' s d i s e a s e or c o l i t i s . These changes a r e v e r y much f o c u s s e d upon i n the i n t e r v i e w s and w r i t t e n n a r r a t i v e s . " I ' v e had t o adapt t o much new and i t ' s j u s t an o n g o i n g t h i n g . I t ' s l i k e l i v i n g a t o t a l l y d i f f e r e n t l i f e somet imes ." The changes t o the p a r t i c i p a n t s ' l i v e s and the "new and d i f f e r e n t t h i n g s " they have had t o go th rou gh s i n c e d e v e l o p i n g t h e i r i l l n e s s have been "overwhelming" f o r them, "I sometimes d o n ' t t h i n k I can hand le a l l the changes , changes i n h e a l t h , changes i n how o t h e r s see me, changes i n how I see m y s e l f . I t ' s s t r a n g e when you s t a r t t o see y o u r s e l f as a p a t i e n t . " Frequent v i s i t s t o m e d i c a l p r o f e s s i o n a l s was something new f o r these young a d u l t s : I r a r e l y saw my d o c t o r and then a l l o f a sudden I 'm i n h i s o f f i c e j u s t about every week. I have t o r e l y on h i s a b i l i t y t o take c a r e o f me, and so you f e e l l i k e you can never be t r u l y independent . I haye t o r e l y on t h e m e d i c a l w o r l d . The o n l y t imes I was ever i n the h o s p i t a l was when I was v i s i t i n g someone e l s e , and now I 'm a r e g u l a r face i n the h a l l s . I t ' s r e a l l y d i f f e r e n t when nurses r e c o g n i z e you , or you b e g i n t o f e e l l i k e you have your own surgeon . I t ' s d e f i n i t e l y new f o r me, but an e x p e r i e n c e I c o u l d l i v e w i t h o u t . I t ' s a huge new t h i n g i n my l i f e and I hate i t . A n o t h e r p a r t i c i p a n t s t a t e s , "It has caused huge changes i n my day t o day l i v i n g and have t o somehow a d a p t . I have t o f i n d d i f f e r e n t c o p i n g s k i l l s f o r l i f e . " "It i s such a new and d i f f e r e n t a s p e c t o f my l i f e t o d e a l w i t h . " " D e a l i n g w i t h change i s an ongoing s t r u g g l e w i t h C r o h n ' s d i s e a s e and a s t r u g g l e i t i s . I d o n ' t even know what I can ea t anymore, something as s i m p l e as t h a t . " S i g n i f i c a n t changes i n e a t i n g h a b i t s i s a l s o something d i f f e r e n t f o r them: I used t o eat a n y t h i n g I wanted, when I wanted, and i t ' s not l i k e I d i d n ' t eat h e a l t h y , i t ' s j u s t t h a t I d i d n ' t have t o spend every minute o f the day t h i n k i n g about i t . Now I do , and i t ' s w e i r d . You a lmost have t o become obsessed w i t h your food i n t a k e . Now my whole l i f e r e v o l v e s around foods I can and c a n ' t e a t , and when I can and c a n ' t eat them. A n o t h e r example o f t h i s theme i s expres sed by a p a r t i c i p a n t w i t h C r o h n ' s d i s e a s e , "Having t o pay a t t e n t i o n t o my d i e t i s something t o t a l l y new f o r me, and I sometimes f o r g e t t o , which i s n ' t a good t h i n g . So i t ' s a huge change t o have t o t h i n k about i t so much. 1 1 C r o h n ' s d i s e a s e or c o l i t i s has changed the p a r t i c i p a n t s ' l i v e s " d r a s t i c a l l y . " As t h i s p a r t i c i p a n t emphasizes: In e v e r y a r e a o f my l i f e t h i s d i s e a s e has c r e a t e d huge changes and I'm o n l y now r e a l i z i n g how they have a f f e c t e d me. A c t u a l l y I s t i l l d o n ' t r e a l l y know what t h e l o n g term a f f e c t s o f a l l these changes a r e g o i n g t o be . A n o t h e r p a r t i c i p a n t s t a t e s t h a t , "I have e x p e r i e n c e d out o f t h i s w o r l d change s i n c e b e i n g d iagnosed w i t h t h i s i l l n e s s , and i t ' s p r o b a b l y g o i n g t o be a l i f e l o n g a d j u s t m e n t . " In the f o l l o w i n g s tatement t h i s theme i s c l e a r l y p r e s e n t : I ' v e always been a person t h a t c o u l d adapt t o most s i t u a t i o n s , and i t ' s a good t h i n g because t h e r e i s l o t s t o adapt t o w i t h C r o h n ' s . I 'm sure i t ' s a f f e c t e d me i n a b i g way t o the p o i n t o f chang ing me as who I am. The p a r t i c i p a n t s ' p e r s o n a l i t y i s another t h i n g t h a t has changed and a d j u s t e d s i n c e d e v e l o p i n g C r o h n ' s d i s e a s e o r c o l i t i s : I t h i n k i t ' s i m p o s s i b l e t o have t h i s d i s e a s e and not have i t a f f e c t who you are i n some way. P e o p l e have t o l d me t h a t I have changed as a p e r s o n and I agree w i t h them. I guess the b i g g e s t change i s I p r o b a b l y l i v e more f o r the moment and d o n ' t p l a n as much f o r t h e f u t u r e . That i s n ' t n e c e s s a r i l y a bad t h i n g e i t h e r , but I ' v e a l s o become more t i m i d , which I do judge as a n e g a t i v e t h i n g . A l l t h e s e young a d u l t s s t a t e d adamantly , "without a d o u b t , " t h a t they have "changed i n many ways." G o i n g through e v e r y t h i n g i n v o l v e d i n h a v i n g C r o h n ' s d i s e a s e o r c o l i t i s i s "overwhelmingly new" t o t h e s e young a d u l t s and has c r e a t e d change i n many d imens ions o f t h e i r l i v e s . H a v i n g t o s t a r t l i v i n g w i t h a c h r o n i c d i s e a s e has caused d i f f e r e n t r o u t i n e s i n the p a r t i c i p a n t s ' l i v e s : You ge t up i n the morning , you have t o make s u r e you ge t p l e n t y o f s l e e p , you have t o make s u r e t o ea t c e r t a i n f o o d s , and then you take your m e d i c a t i o n . You have t o be r e a l l y c o n s c i o u s o f a l l t h i s s t u f f . I t i s a " b i g change" f o r them t o go t h r o u g h : S p o n t a n e i t y k i n d o f goes out the window, g e n e r a l l y , e v e r y t h i n g seems l i k e i t has t o be so p l a n n e d o u t , j u s t i n case you get s i c k or something, and you need t o have some way o f g e t t i n g out or something . T h i s i s a l l s t u f f I never thought o f b e f o r e , so C r o h n ' s c e r t a i n l y has changed the way I d e a l w i t h my l i f e . A l l t h e s e young a d u l t s s t a t e t h a t h a v i n g C r o h n ' s d i s e a s e o r c o l i t i s has a l t e r e d t h e i r l i f e , " i t ' s b a s i c a l l y changed my l i f e . " "My l i f e i s b a r e l y a r e f l e c t i o n o f t h e one I had b e f o r e C r o h n ' s , and t h a t i s the t r u t h . The t r u t h i n l i f e now has changed, and i t i s much more p a i n f u l than what i t was." "I am f a c e d w i t h something v e r y new and u n p l e a s a n t t o d e a l w i t h and i t has changed my l i f e . " 5 . 1 S e l f "My p e r s o n a l i t y i s another t h i n g t h a t has changed s i n c e d e v e l o p i n g C r o h n ' s d i s e a s e . " These changes and adjus tment s i n p e r s o n a l i t y are c l e a r l y s p e l l e d out i n t h e s t o r i e s : I ' v e changed as a p e r s o n , and some good and some b a d . I t r y t o enjoy the t h i n g s I have t o t h e i r f u l l e s t , and t h a t ' s good. But t h e r e ' s so much bad, l i k e b e i n g more s o c i a l l y s c a r e d , b e i n g l e s s o f an a c t i v e p a r t i c i p a n t i n l i f e and more o f an o b s e r v e r . These a r e a l l c o r e changes t o who I was as a p e r s o n . These young a d u l t s s t a t e t h a t they " d e f i n i t e l y have changed" as p e o p l e s i n c e d e v e l o p i n g C r o h n ' s d i s e a s e o r c o l i t i s , "I'm a c o m p l e t e l y d i f f e r e n t person because o f my d i s e a s e , I know I have changed ." A p a r t i c i p a n t w i t h c o l i t i s e x p r e s s e s t h e e f f e c t s o f these changes i n s e l f t h u s : I t h i n k i t t akes me l o n g e r t o t r u s t p e o p l e now because I need t o know t h a t they can handle a l l the g r o s s s t u f f about me which i s i n v o l v e d w i t h my d i s e a s e , and I know i t ' s k i n d o f w e i r d , but t h a t ' s the way I ' v e become now. I need t o f e e l c o m f o r t a b l e w i t h a p e r s o n i f I 'm g o i n g t o spend t ime w i t h them. A n o t h e r p a r t i c i p a n t s t a t e s t h a t : I 'm s c a r e d of so many t h i n g s now, and I d o n ' t r e a l l y know why. W e l l know t h a t ' s not e n t i r e l y t r u e . I do know some o f the reasons why, such as I 'm l i v i n g w i t h an i l l n e s s t h a t c o u l d r e a r i t s u g l y head a t any t i m e . I ' v e gone t h r o u g h so much and I d o n ' t r e a l l y want t o go t h r o u g h anymore. A n o t h e r example o f t h i s theme i s g i v e n by a female p a r t i c i p a n t who t o l d o f her e x p e r i e n c e s as f o l l o w s : So maybe I ' v e a l s o become more of an a v o i d e r o f t h i n g s , e s p e c i a l l y unknown t h i n g s , because t h e r e i s a l r e a d y so much unknown i n my l i f e , and t h i s i s d e f i n i t e l y a change i n way of b e i n g f o r me. So t h i s d i s e a s e d o e s n ' t j u s t change your p h y s i c a l b e i n g but I t h i n k i t changes you r i g h t down t o the c o r e o f who you a r e . They s t a t e t h a t they are " d e f i n i t e l y changed" p e o p l e " i n s i d e . " "I'm not the same person I was, and I sometimes l o n g f o r the person I was. I c o u l d j u s t l i v e l i f e w i t h o u t a l l t h i s a n x i e t y i n s i d e . " An example o f t h i s theme from a male p a r t i c i p a n t goes as f o l l o w s : I know I ' v e become more o f an e s c a p i s t , and what I mean by t h a t i s not t a k i n g drugs or a l c o h o l , but g o i n g i n s i d e m y s e l f more. I p r o b a b l y c o u l d e a s i l y become an a l c o h o l i c o r something but I s t i l l do c a r e enough about m y s e l f t o a v o i d h a v i n g t h a t happen, and so b e i n g an extreme i n t r o v e r t when I was once an e x t r o v e r t i s bad enough. I spend more t ime on my own. The f o l l o w i n g s tatement echoes t h i s theme, "I t h i n k I 'm more l o n e l y now because i t ' s h a r d e r t o be out t h e r e as a p e r s o n , and you d o n ' t have as much c o n f i d e n c e because y o u ' r e s i c k . When y o u ' r e s i c k you s t a y i n s i d e y o u r s e l f more ." They emphasize t h a t the cause of these changes i s t h e i r i l l n e s s . "I was way more o u t g o i n g b e f o r e I deve loped C r o h n ' s , and I was c o m p l e t e l y c o m f o r t a b l e w i t h m y s e l f . Now i t ' s a s t r u g g l e t o ge t t o t h a t p l a c e a g a i n . " The f o l l o w i n g s ta tement c o n t i n u e s e l a b o r a t i n g on t h i s theme: My d i s e a s e has a l t e r e d my p e r s o n a l i t y because I can never r e a l l y f e e l sa f e w i t h i t , and I o n l y f e e l c o m f o r t a b l e around c e r t a i n p e o p l e . S e c u r i t y and comfor t a r e two b i g words i n my l i f e . E s p e c i a l l y when I 'm s i c k . I t ' s amazing how when I'm f e e l i n g b e t t e r t h a t my way o f b e i n g becomes more s i m i l a r t o the way I was b e f o r e d e v e l o p i n g my d i s e a s e . A n o t h e r i l l u s t r a t i o n o f t h i s theme i s t o l d as f o l l o w s , '.'I can be two d i f f e r e n t p e o p l e , sometimes the s i c k , q u i e t , b l a h p e r s o n o r the w e l l , o u t g o i n g , e n e r g e t i c p e r s o n , and t h i s can be c o n f u s i n g . I t h i n k these changes are d e f i n i t e l y h a r d f o r t h e p e o p l e around me." The p a r t i c i p a n t s s t a t e t h a t one o f the e x p e r i e n c e s i n v o l v e d i n h a v i n g C r o h n ' s d i s e a s e o r c o l i t i s i s some change i n t h e i r p e r s o n a l i t y , " I ' v e become v e r y i n t r o v e r t e d and somewhat d e p r e s s i v e s i n c e d e v e l o p i n g C r o h n ' s d i s e a s e . " "I suppose more d e p r e s s e d i s a way o f p u t t i n g i t and l a c k o f m o t i v a t i o n f o r l i f e . You know, t h a t v i g o r o r something f o r l i f e , t h a t ' s r e a l l y changed ." A l l o f t h e s e young a d u l t s adamantly a s s e r t , "without a d o u b t , " t h a t t h e y have "changed i n many ways." 6. The e x p e r i e n c e s o f young a d u l t s w i t h C r o h n ' s d i s e a s e o r c o l i t i s i n c l u d e d e p r i v a t i o n o f some o f t h e i r c o n t r o l o v e r t h e i r l i v e s The p a r t i c i p a n t s s t a t e t h a t t h e r e i s " l i t t l e c o n t r o l " o v e r t h e i r l i v e s w i t h h a v i n g t h e i r i l l n e s s . These young a d u l t s r e l a t e d s t o r i e s i n v o l v i n g the f e e l i n g o f b e i n g " d e p r i v e d o f some o f the c o n t r o l " over v a r i o u s a s p e c t s o f t h e i r l i v e s s i n c e d e v e l o p i n g C r o h n ' s d i s e a s e or c o l i t i s : C r o h n ' s has taken so much from me, i n c l u d i n g my a b i l i t y t o d i r e c t the own p l a y o f my l i f e , and t h i s i s so rampant i n my e x p e r i e n c e . L i k e f o r my body, i t j u s t does i t s own t h i n g now, w e l l not i t s own t h i n g but i t s d i s e a s e t h i n g . They a l l l o n g f o r more c o n t r o l over t h e i r body and t h e i r i l l n e s s : I do s e a r c h out as many ways as p o s s i b l e t o add more c o n t r o l t o my l i f e , and sometimes i t ' s good, and sometimes i t ' s not v e r y s u c c e s s f u l . A c t u a l l y , g e n e r a l l y I j u s t f o o l m y s e l f i n t o t h i n k i n g I ' v e g a i n e d c o n t r o l o f my d i s e a s e . F o r many o f the p a r t i c i p a n t s n o t h i n g seems t o have been s u c c e s s f u l , so f a r , i n h e l p i n g t o g a i n more c o n t r o l o v e r t h e i r b o d i e s and t h e i r i l l n e s s , "I t r y , but i t c o n t r o l s your l i f e . " "You end up j u s t g i v i n g up, and l e t t i n g i t do whatever i t does , because you r e a l i z e t h a t you d o n ' t have c o n t r o l anyway. I t ' s not v e r y good, I know." T h e i r i l l n e s s e s have d e p r i v e d them o f some of t h e i r c o n t r o l over t h e i r l i v e s , " i t ' s d i r e c t i n g my l i f e . " "Where I want t o go and where c o l i t i s w i l l a l l o w me t o go may be two d i f f e r e n t t h i n g s . I t seems t o have much more c o n t r o l over my l i f e p a t h t h a n I do a t the moment." By r e a d i n g t h e i r s t o r i e s i t i s easy t o d i s c e r n the "decrease i n c o n t r o l " they e x p e r i e n c e . 6.1 Weight As s t a t e d above, the p a r t i c i p a n t s have r e l a t e d s e v e r a l s t o r i e s i n v o l v i n g the f e e l i n g o f b e i n g " d e p r i v e d o f some o f t h e c o n t r o l " over v a r i o u s a spec t s o f t h e i r l i v e s s i n c e d e v e l o p i n g C r o h n ' s d i s e a s e o r c o l i t i s . These f e e l i n g s emerge i n d i f f e r e n t ways, one o f which i s the " lo s s o f c o n t r o l " o v e r t h e i r w e i g h t . "One month I'm c l o s e t o my i d e a l we ight and t h e next I c o u l d have l o s t t e n pounds. F o r me t h a t ' s not a good t h i n g . " These young a d u l t s s t a t e t h a t t h e r e i s such a "minute amount o f command" over one ' s we ight , " T h i s i l l n e s s has caused my weight t o f l u c t u a t e q u i t e a b i t . " A n o t h e r p a r t i c i p a n t i n d i c a t e s : I f I d o n ' t ea t meals every t h r e e h o u r s , and I sometimes have t o f o r c e myse l f t o do t h i s , I c o u l d l o s e we ight j u s t l i k e t h a t . You d o n ' t r e a l l y have much c o n t r o l o v e r i t I suppose , e s p e c i a l l y i f y o u ' v e had o p e r a t i o n s t o remove some o f your s m a l l i n t e s t i n e , because t h a t ' s where most o f what you eat i s taken i n t o your body . The e x p e r i e n c e s o f young a d u l t s w i t h C r o h n ' s d i s e a s e o r c o l i t i s c o n t a i n d i f f i c u l t y i n the management o f t h e i r w e i g h t , "I l o s t we ight . S o r t o f l i k e on a r o l l e r c o a s t e r . I f you ' r e f e e l i n g w e l l you g a i n we ight , i f you ' r e not i t just p e e l s o f f you. I was l o s i n g weight b e f o r e I knew i t . " "I ' d o n ' t even c a r e about my weight anymore, r e a l l y . You come to r e a l i z a t i o n t h a t you c a n ' t do much about i t , so why obsess about i t " ? They b e l i e v e an a f f e c t of h a v i n g C r o h n ' s d i s e a s e o r c o l i t i s i s t h a t i t causes t h e i r weight t o change o f t e n and they e x p e r i e n c e t h i s as something they d o n ' t have v e r y much c o n t r o l o v e r . 7. Types o f e x p e r i e n c e s i n c l u d e f e e l i n g v i o l a t e d F e e l i n g " v i o l a t e d " from some s i t u a t i o n i n v o l v e d i n h a v i n g t h e i r i l l n e s s , i s another e x p e r i e n c e the p a r t i c i p a n t s e n c o u n t e r . A l l these young a d u l t s e x p e r i e n c e d some form o f " a s s a u l t " from d i f f e r e n t a spec t s o f h a v i n g t h e i r i l l n e s s . "Having c o l i t i s has caused me t o e x p e r i e n c e a l o t o f d e g r a d i n g t h i n g s i n my t i m e , and I s t i l l d o n ' t know t h e i r t r u e e f f e c t s . But I sure know they have a f f e c t e d me." Many o f them p o i n t t o t h i s v i o l a t i o n as "one o f the h a r d e s t t h i n g s t o d e a l w i t h . " I w i l l now here c o n t i n u e t o s k e t c h more c l e a r l y two f u r t h e r sub-themes o f " v i o l a t i o n . " : 7 .1 Drugs 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 some form of " v i o l a t i o n " from d i f f e r e n t a s p e c t s o f h a v i n g t h e i r i l l n e s s . One t y p e o f " v i o l a t i o n " ment ioned i s from the d r u g p l a n s t h e y a r e p u t o n , "You pop a l l the se p i l l s , and some of them a r e so b i g you s c r a t c h the back of your t h r o a t w i t h them. Some a r e even s h a r p - l i k e , and I d o n ' t unders tand the r e a s o n f o r t h a t . " These young a d u l t s t e l l many s t o r i e s o f " a l l the s t r a n g e 143 m e d i c a t i o n s " they are put on , "I t h i n k one o f t h e h a r d e s t t h i n g s t o d e a l w i t h i n terms o f my i l l n e s s was b e i n g on v a r i o u s d i f f e r e n t m e d i c a t i o n s , e s p e c i a l l y s t e r o i d s . " In t h e f o l l o w i n g s tatement t h i s theme i s c l e a r l y p r e s e n t : So y o u ' r e put on drugs t o h e l p but t h e n t h e r e a r e a l l t h e s i d e e f f e c t s t h a t you have t o t a k e d i f f e r e n t d r u g s f o r t o c o u n t e r a c t . I d o n ' t know how t o f e e l about my body anymore when I have t o put a l l t h e s e f o r e i g n s u b s t a n c e s i n t o i t . The p a r t i c i p a n t s emphasize b e i n g on v a r i o u s m e d i c a t i o n s as "a v e r y d i f f i c u l t a spec t" o f h a v i n g C r o h n ' s d i s e a s e o r c o l i t i s : Sometimes I j u s t want t o s top t a k i n g the p i l l s , but I know i n the end t h a t would be the wrong d e c i s i o n . I s t i l l worry though of the l o n g - t e r m a f f e c t s o f t a k i n g a l l t h e s e d r u g s , and I d o n ' t t h i n k anybody r e a l l y knows, because a l o t o f them are p r e t t y new. They see these drug t rea tment s as h a v i n g a " l a r g e e f f e c t " on t h e i r b o d i e s , "I was t a k i n g s t e r o i d s and my f a c e p u f f e d up , my musc les got weak, I even e x p e r i e n c e d b i z a r r e mood swings . T h a t s t u f f i s h a r d on y o u , and the peop le around y o u . " These young a d u l t s p o i n t t o t h i s v i o l a t i o n as "a h a r d t h i n g t o d e a l w i t h . " 7.2 M e d i c a l p r o c e d u r e s As s t a t e d above, 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 some t y p e o f " v i o l a t i o n " from v a r i o u s a spec t s o f h a v i n g t h e i r i l l n e s s . A n o t h e r form of " v i o l a t i o n " mentioned i s from the m e d i c a l p r o c e d u r e s they a r e put t h r o u g h : T h i s i s r e a l l y d i f f i c u l t t o t a l k about because I sometimes s t i l l have n ightmares r e l a t e d t o some o f the t e s t s t h a t I went through i n the h o s p i t a l , and I d o n ' t know how t o l i v e w i t h i t r e a l l y . I f i n d t h i s r e a l l y , r e a l l y d i f f i c u l t . I t ' s hard t o e x p l a i n because i t was a l l done i n the name of h e a l i n g . " D e s e c r a t i o n " from the m e d i c a l p r o c e d u r e s i s something 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 : I d o n ' t know what i t ' s l i k e f o r a male , b u t f o r a woman i t ' s h o r r i b l e because g e n e r a l l y the d o c t o r s a r e male , and I know t o them i t ' s j u s t a j o b , but maybe t h a t makes i t even worse, I d o n ' t know. I do know t h a t I f e l t c o m p l e t e l y r i p p e d a p a r t by some o f t h o s e e x p e r i e n c e s . A n o t h e r p a r t i c i p a n t s t a t e s t h a t , "I f e e l i t ' s a l l about shame, and agony, and h u m i l i a t i o n . " Another example o f t h i s sub-theme i s g i v e n by a female p a r t i c i p a n t who t o l d o f h e r e x p e r i e n c e s as f o l l o w s : You go t h r o u g h these t h i n g s i n o r d e r t o f i n d ways t o h e l p , but then y o u ' r e l e f t w i t h h a v i n g t o d e a l w i t h t h e a f f e c t s o f these t h i n g s , and t h e y ' r e a l l p r e t t y h o r r i b l e . The d i s e a s e i t s e l f i s bad enough, but wow, t h o s e t e s t s a r e something e l s e . These young a d u l t s p o i n t t o the v i o l a t i n g m e d i c a l p r o c e d u r e s t h a t they had t o go through as a d i f f i c u l t e x p e r i e n c e i n h a v i n g C r o h n ' s d i s e a s e or c o l i t i s , "Gross t e s t a f t e r g r o s s t e s t . " "I never ever t a l k about what happens b e h i n d t h o s e c l o s e d h o s p i t a l d o o r s , and what i t ' s l i k e . I t h i n k p e o p l e would s q u i r m . " They emphasize the v i o l a t i o n t h a t t h e y f e l t , "They saw a body t h a t c o u l d be t u r n e d u p s i d e down, and shove t h i n g s up and down i t , l i g h t s poked up i t . " "It t a k e s a w h i l e t o be a b l e t o connect w i t h your body a g a i n . I t ' s l i k e i t was somebody e l s e ' s body f o r a w h i l e . " 8. The l i f e e x p e r i e n c e s i n c l u d e f e e l i n g anger I would l i k e t o end t h i s "Genera l S t r u c t u r e " s e c t i o n by d i s c u s s i n g a n g e r . The l i f e e x p e r i e n c e s o f young a d u l t s w i t h C r o h n ' s d i s e a s e or c o l i t i s i n c l u d e f e e l i n g a g r e a t d e a l o f a n g e r . "Of c o u r s e you f e e l a n g r y . You've been r i p p e d o f f b i g t i m e . " The p a r t i c i p a n t s " f e e l rage" , "I remember f e e l i n g a n g r y . " " I t ' s t aken so much away from y o u , so you can e i t h e r be d e p r e s s e d o r you get angry , and I t h i n k g e t t i n g angry sometimes i s the b e t t e r c h o i c e . L i f e i s h a r d , so ge t a n g r y . " They " f e e l angry" because , s i n c e d e v e l o p i n g C r o h n ' s d i s e a s e o r c o l i t i s , " l i f e i s v e r y h a r d . " "I'm mad because my o l d l i f e was taken from me and r e p l a c e d w i t h a l i f e t h a t i s t e n f o l d h a r d e r . I 'm r e a l angry t h a t I have t h i s damn d i s e a s e . " These young a d u l t s " f e e l angry" when they t h i n k about how "easy t h i n g s were" b e f o r e they had C r o h n ' s d i s e a s e o r c o l i t i s , "Sure t h i n g s were e a s i e r when you have a h e a l t h y body, but C r o h n ' s has taken t h a t away from me, and now I have an i l l n e s s t h a t I ' l l have f o r the r e s t o f l i f e . Yeah , I 'm a n g r y . " S e v e r a l o f the p a r t i c i p a n t s e x p e r i e n c e d angry c o n f l i c t s because o f s t i l l t r y i n g t o do c e r t a i n t h i n g s t h a t t h e y r e a l l y wanted t o , a l t h o u g h o t h e r s t e l l them t h a t t h e y have t o l i v e a d i f f e r e n t l i f e s t y l e now t h a t they have C r o h n ' s d i s e a s e o r c o l i t i s . Many o f them wanted t o c o n t i n u e i n a l l t h e i r l i f e a c t i v i t i e s and had f e e l i n g s o f anger towards o t h e r p e o p l e t h a t argued w i t h them and t o l d them t o r e s t r i c t t h e i r a c t i v i t i e s : O t h e r s around me, i n my l i f e , d i d not q u i t e l i k e my p l a n s t o c o n t i n u e on w i t h u n i v e r s i t y and s t u d y i n g a g a i n i n t h e f a l l because o f my c o l i t i s , and t h a t made me angry because I wanted t o and was g o i n g t o c o n t i n u e i n the f a l l . A l t h o u g h angry because o f b e i n g t o l d t o l i m i t a c t i v i t y , s e v e r a l p a r t i c i p a n t s appeared t o t h i n k t h a t t h i s was p r o b a b l y n e c e s s a r y "I am g o i n g t o no mat ter what they say about h a v i n g t o r e s t r i c t my a c t i v i t i e s . U n f o r t u n a t e l y , p a r t o f me t h i n k s t h a t t h e y ' r e l i k e l y r i g h t . " D e a l i n g w i t h t h e i r d i s e a s e causes f e e l i n g s o f i r r i t a t i o n : D e a l i n g w i t h t h i s whole t h i n g i s a h a s s l e . I t ' s f r u s t r a t i n g because i t t akes you out o f your l i f e , j u s t l i k e t h a t . You can be l i v i n g , d o i n g your t h i n g , g e t s i c k , and end up i n the h o s p i t a l . B e i n g angry sounds t o m i l d . I ha te i t , ha te i t , ha te i t , ha te i t . The f o l l o w i n g s tatement c o n t i n u e s e l a b o r a t i n g on t h i s theme, "I d o n ' t l i k e b e i n g angry , but sometimes I c a n ' t h e l p i t , and I have t o d e a l w i t h i t . Oh g r e a t , another t h i n g I have t o d e a l w i t h , and t h a t makes me even more a n g r y . " The p a r t i c i p a n t s " f e e l angry" when they t h i n k about "how d i f f i c u l t l i f e i s now." CHAPTER FIVE D i s c u s s i o n The p r e s e n t c h a p t e r w i l l i n c l u d e a r e s t a t e m e n t o f t h e i m p o r t a n t q u e s t i o n i n t h i s s t u d y . A l o n g w i t h t h i s r e s t a t e m e n t , a summary and d i s c u s s i o n o f the r e s u l t s o b t a i n e d from the i n v e s t i g a t i o n w i l l a l s o be c o v e r e d . F i n a l l y , the r e s e a r c h and c o u n s e l l i n g i m p l i c a t i o n s , as w e l l as t h e p e r s o n a l meaning o f t h i s s tudy w i l l be d i s c u s s e d . The i s s u e o f c e n t r a l importance i n t h i s s t u d y was t h a t o f t h e l i f e e x p e r i e n c e s o f young a d u l t s w i t h C r o h n ' s d i s e a s e o r c o l i t i s . S e v e r a l i n v a r i a n t t h r e a d s r a n t h r o u g h the t y p e s o f l i f e e x p e r i e n c e s d e s c r i b e d by r e s p o n d e n t s . The l i f e e x p e r i e n c e s o f young a d u l t s w i t h C r o h n ' s d i s e a s e o r c o l i t i s , as d e s c r i b e d i n t h i s s t u d y , has been c o n c e p t u a l i z e d as b e i n g made up o f common themes. U n p r e d i c t a b l e a c t i v a t i o n o f symptoms o c c u r r e d f o r the p a r t i c i p a n t s o f t h i s s t u d y , G r i e f and l o s s was another component r e p o r t e d i n t h e p r o c e s s o f l i v i n g w i t h C r o h n ' s d i s e a s e or c o l i t i s , e i t h e r o f per formance a b i l i t i e s , body and p o s i t i v e body image, o r e n j o y a b l e a c t i v i t i e s . The e x p e r i e n c e s o f these young a d u l t s i n v o l v e d a n o t a b l e l o w e r i n g o f s e l f - e s t e e m . In t h i s i n q u i r y p a r t i c i p a n t s emphasized f e e l i n g f e a r o r a n x i e t y - over t h e i r i l l n e s s , o f the h o s p i t a l , over t e s t s , o f s e e i n g s i g n i f i c a n t o t h e r s w o r r y , and o f overwhelming f e e l i n g s caused by t h e i r i l l n e s s . Change and adjustment was d e s c r i b e d as a common e x p e r i e n c e f o r these young a d u l t s , i n c l u d i n g changes i n c e r t a i n a s p e c t s o f t h e i r p e r s o n a l i t y . P a r t i c i p a n t s ' e x p e r i e n c e s i n v o l v e d major changes: academic , s o c i a l , and p e r s o n a l which they had t o attempt t o a d j u s t t o . D e p r i v a t i o n o f some o f t h e i r c o n t r o l over t h e i r l i v e s was f r e q u e n t l y r e p o r t e d as an ever p r e s e n t o r d e a l , i n c l u d i n g l o s s o f c o n t r o l over t h e i r we ight . Another common e x p e r i e n c e f o r t h e s e young a d u l t s came i n the form o f f e e l i n g v i o l a t e d , i n c l u d i n g v i o l a t i o n from many o f the m e d i c a t i o n s t h e y took i n t o t h e i r b o d i e s , and many of the m e d i c a l p r o c e d u r e s they were put t h r o u g h . Anger was a p r e v a l e n t f e e l i n g f o r t h e p e r s o n s i n t h i s s tudy and has been l i s t e d as the e i g h t h and f i n a l main g e n e r a l theme. I t i s i m p o r t a n t t o note t h a t o n l y one o f the g e n e r a l s t r u c t u r e themes, f e e l i n g a g r e a t d e a l o f anger , was not ment ioned by a l l 1 0 p a r t i c i p a n t s . A l s o , a l l themes f o r t h e s e p a r t i c u l a r p a r t i c i p a n t s have a p r o p e n s i t y f o r b e i n g n e g a t i v e e x p e r i e n c e s . F o r example, the c o n s t a n t l y accompanying t h r e a t o f the u n p r e d i c t a b l e o c c u r r e n c e o f symptoms causes worry and s t r e s s i n the p a r t i c i p a n t ' s l i v e s . Whi l e the e x p e r i e n c e o f g r i e f and l o s s c r e a t e s sadness and " d e p r e s s i o n " . The s e r i o u s l o w e r i n g o f s e l f - e s t e e m causes damage t o the way they v iew t h e m s e l v e s . There were no r e p r e s e n t a t i v e d i f f e r e n c e s found between t h e e x p e r i e n c e s o f female p a r t i c i p a n t s and male p a r t i c i p a n t s . However, t h e r e were two minor d i f f e r e n c e s n o t e d . The f i r s t i n v o l v e s female p a r t i c i p a n t s , i n g e n e r a l , p l a c i n g more emphasis on the e x p e r i e n c e o f f e e l i n g v i o l a t e d . A l t h o u g h a l l t h e s e young a d u l t s mentioned the f e e l i n g o f b e i n g v i o l a t e d , the female p a r t i c i p a n t s expanded on t h i s theme much more f r e q u e n t l y than the males . The second r e c o r d e d d i f f e r e n c e concerns comments made by one female p a r t i c i p a n t r e g a r d i n g f e e l i n g s o f f e a r over how h e r i l l n e s s may a f f e c t h a v i n g c h i l d r e n . These r e s u l t s p r o v i d e b a s i c i n f o r m a t i o n which h e l p s t o u n d e r s t a n d some o f the s p e c i f i c components o f l i v i n g w i t h C r o h n ' s d i s e a s e or c o l i t i s . T h i s i n t u r n a l l o w s us t o see which p a r t i c u l a r v a r i a b l e might be the focus o f i n t e r v e n t i o n f o r t h o s e i n v o l v e d i n the l i v e s o f peop le w i t h t h e s e d i s e a s e s . These f i n d i n g s can a s s i s t i n i n c r e a s i n g awareness o f t h e i n f l u e n c e s C r o h n ' s d i s e a s e or c o l i t i s has on t h e l i f e o f a young a d u l t . The p a r t i c i p a n t s i n t h i s s tudy d e s c r i b e d t h e c o n s t a n t accommodations t h a t they must make i n t h e i r l i v e s and t h e s o c i a l and p s y c h o l o g i c a l c o s t s a c c r u e d by t h o s e a d j u s t m e n t s . I t p o i n t s out t h a t the work of managing C r o h n ' s d i s e a s e and c o l i t i s i s more than j u s t a matter o f " i l l n e s s management." The work t a k e s p l a c e w i t h i n the c o n t e x t o f everyday l i v i n g . Through t h i s s tudy of l i f e s t o r i e s o f peop le w i t h C r o h n ' s d i s e a s e o r c o l i t i s the n e g a t i v e e f f e c t s t h a t many p e o p l e w i t h t h e s e d i s e a s e s e x p e r i e n c e i s w e l l demonstrated i n a l l o f t h e s t o r i e s c o n s i d e r e d h e r e . I t i s i m p o r t a n t t o c o n s i d e r the p a r t i c i p a n t s ' l i f e s t o r i e s w i t h i n the c o n t e x t o f t h e i r p a r t i c u l a r d e v e l o p m e n t a l s t a g e . Young a d u l t h o o d i s f r e q u e n t l y d e s c r i b e d as a p e r i o d o f development d u r i n g which d r a m a t i c l i f e changes and t r a n s i t i o n s o c c u r . Young a d u l t s are g e n e r a l l y f a c e d w i t h t a k i n g on new s c h o l a s t i c or employment demands, p e r s o n a l o b l i g a t i o n s , and s o c i a l networks . The p a r t i c i p a n t s t a l k e d about many changes and adjustments i n t h e i r l i v e s . They d e s c r i b e d numerous n e g a t i v e e x p e r i e n c e s i n v o l v i n g such t h i n g s as a decrease i n t h e i r performance a b i l i t i e s a t work and s c h o o l , and a decrease i n t h e i r s o c i a l a c t i v i t i e s . A l l themes f o r these p a r t i c u l a r p a r t i c i p a n t s h a v i n g a p r o p e n s i t y f o r b e i n g n e g a t i v e e x p e r i e n c e s may be due t o t h e r e l a t i v e homogeneity o f the sample . Nine o f t h e t e n 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 r h e a l t h , a t the t ime o f t h e i n t e r v i e w , as p o o r . Most d e s c r i b e d themse lves as f e e l i n g s i c k and i n p a i n . Many of the p a r t i c i p a n t s had never e x p e r i e n c e d any p e r i o d s o f r e m i s s i o n . Comparisons t o Other L i t e r a t u r e In g e n e r a l , the se young a d u l t s r e p o r t e d t h a t t h e y were p l a g u e d by a v e r s i v e i n t r u s i o n s i n everyday a c t i v i t i e s and r e g u l a r e x i s t e n c e . They i n d i c a t e d t h a t they found t h e i r r e c e n t p a s t , s i n c e b e i n g d iagnosed w i t h C r o h n ' s d i s e a s e or c o l i t i s , c h a r a c t e r i z e d by n e g a t i v e l i m i t a t i o n s on t h e e x p e r i e n c e o f e n j o y a b l e a c t i v i t i e s . In l i g h t o f r e s e a r c h r e v i e w e d on C r o h n ' s d i s e a s e and c o l i t i s these f i n d i n g s show how the n o t i o n t h a t e i t h e r the i l l n e s s i t s e l f o r r e s t r i c t i o n s imposed by i t s management may i n t e r f e r e w i t h f u n c t i o n i n g and d i s r u p t normal l i v i n g (see S t e i n h a u e r e t a l . , 1982) . The g r e a t e r f requency o f d i s t u r b a n c e i n normal a c t i v i t y o f young a d u l t s w i t h a c h r o n i c i l l n e s s i s worthy o f f u r t h e r a t t e n t i o n . The e x p e r i e n c e s d e s c r i b e d r e g a r d i n g f e e l i n g s o f anger e s t a b l i s h e d t h a t t h i s was a v e r y prominent emot ion f o r t h e p a r t i c i p a n t s . The r e s u l t s on anger a r e c o n s i s t e n t w i t h work done on p s y c h o l o g i c a l a s p e c t s o f c h r o n i c i l l n e s s i n which t h e demands o f a d i s e a s e caused f r u s t r a t i o n and resentment ( S t e i n h a u e r e t a l . , 1982). Many o f the young a d u l t s i n t h e p r e s e n t s tudy a c c e n t e d how h a v i n g C r o h n ' s d i s e a s e o r c o l i t i s f r e q u e n t l y c o n j u r e d up f e e l i n g s o f anger . The c u r r e n t f i n d i n g s f i t w i t h r e s e a r c h t h a t has shown t h a t upward m o b i l i t y i n work, o f t e n a major s o u r c e o f s e l f - esteem, can be s e r i o u s l y l i m i t e d ( i . e . S t e i n h a u e r e t a l . , 1982) . An i n d i v i d u a l r e g u l a r l y encounters h a v i n g t o t a k e t ime o f f o f work when t h e i r i l l n e s s a c t s up . The p a r t i c i p a n t s i n the c u r r e n t s tudy spoke o f t e n o f how t h e i r work performance was s u b s t a n t i a l l y a f f e c t e d by t h e i r i l l n e s s . P r i o r r e s e a r c h has i n d i c a t e d t h a t i f an i l l n e s s f r e q u e n t l y e l i c i t s d i s c o m f o r t from o t h e r s , i t may p r o v e a s e r i o u s blow t o the person (S te inhauer e t a l . , 1982) . The p r e s e n t d a t a d e p i c t t h i s i n d i c a t i o n . Many p a r t i c i p a n t s emphas ized how h a v i n g C r o h n ' s d i s e a s e o r c o l i t i s commonly evoked u n e a s i n e s s from Others and how t h i s had an enormous impact on t h e i r s e l f - i m a g e . The young a d u l t s i n t h i s p r e s e n t s tudy t a l k e d about i s s u e s i n v o l v i n g f e e l i n g s o f uneas ines s around p e o p l e and 153 how t h i s was one o f the c o n t r i b u t i n g f a c t o r s t o a l o w e r i n g o f some o f t h e i r s e l f - e s t e e m . T h i s i s p a r a l l e l t o r e p o r t s made by S t e i n h a u e r e t a l . (1982) t h a t suggest t h a t embarrassment o r h u m i l i a t i o n because o f t h e d i s e a s e may c o n t r i b u t e t o an a l i e n a t i o n from peers who, o f f e r e d a p p r o p r i a t e a s s i s t a n c e , c o u l d be a s i g n i f i c a n t s o u r c e o f h e l p f o r the c h r o n i c a l l y i l l p e r s o n . The d imin i shment o f s e l f - e s t e e m e x p e r i e n c e d by t h e p a r t i c i p a n t s appears t o have an e f f e c t on s e v e r a l o f t h e i r s o c i a l r e l a t i o n s h i p s . Many o f them speak o f f e e l i n g u n c o m f o r t a b l e i n s o c i a l s i t u a t i o n s . W i l l s (1985), i n l o o k i n g a t s u p p o r t i v e f u n c t i o n s o f i n t e r p e r s o n a l r e l a t i o n s h i p s , sugges t s t h a t s o c i a l r e l a t i o n s h i p s t h a t a r e s u p p o r t i v e and c o m f o r t a b l e can i n c r e a s e f e e l i n g s o f s e l f - e s t e e m . S o c i a l i n t e g r a t i o n can p r o v i d e a source o f g e n e r a l p o s i t i v e a f f e c t , a sense o f s t a b i l i t y i n one ' s l i f e , and a r e c o g n i t i o n o f s e l f - w o r t h . However, r e l a t i o n s h i p s t h a t cause d i s c o m f o r t can have the o p p o s i t e e f f e c t s ( W i l l s , 1985). P r e v i o u s r e s e a r c h t h a t examined s o c i a l r e l a t i o n s h i p s from the p e r s p e c t i v e o f young a d u l t s w i t h c a n c e r , i n d i c a t e d t h a t the impact o f c a n c e r and i t s management, and the n e g a t i v e e f f e c t s i t has on s e l f - e s t e e m , i n f l u e n c e s n e g a t i v e l y a young a d u l t ' s c a p a b i l i t y o f i n t e r a c t i n g i n s o c i a l s e t t i n g s , e s p e c i a l l y new ones (Lynam, 1990). The p a r t i c i p a n t s i n Lynam's (1990) r e s e a r c h f e l t a l a c k o f c o n f i d e n c e i n a p p r o a c h i n g new s o c i a l s i t u a t i o n s , they f e l t " v u l n e r a b l e " and "exposed". Many o f t h e young a d u l t s i n the p r e s e n t s tudy a l s o found s o c i a l i n t e r a c t i o n s d i f f i c u l t . T h i s c o n n e c t i o n between s o c i a l competence and s e l f - wor th appears t o be a f f e c t e d , i n p a r t , by the s t i g m a t i z i n g n a t u r e o f C r o h n ' s d i s e a s e and c o l i t i s . S e v e r a l 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 d embarrassment which i s perhaps t i e d t o f e e l i n g s t i g m a t i z e d . F o r the young a d u l t s i n Lynam's (1990) r e s e a r c h , e s t a b l i s h i n g new r e l a t i o n s h i p s was h i n d e r e d by t h e i r embarrassment o f t h e i r own appearances . Some o f the young a d u l t s i n the p r e s e n t s tudy t o l d o f how h a v i n g one o f t h e s e c h r o n i c i l l n e s s e s o f t e n causes o t h e r s t o l o o k a t them d i f f e r e n t l y which b r i n g s about embarrassment and f e e l i n g s o f s t i g m a t i z a t i o n . Many o f the p a r t i c i p a n t s p o i n t t o how t h e i r c h r o n i c i l l n e s s f r e q u e n t l y evokes u n e a s i n e s s i n o t h e r s and how t h i s causes a n e g a t i v e impact on t h e i r s e l f - e s t e e m . Some o f them t e l l o f how they t r y hard t o a v o i d h a v i n g p e o p l e f i n d out t h a t they have one o f these d i s e a s e s i n o r d e r t o p r e v e n t any u n c o m f o r t a b l e r e a c t i o n s , because t h e s e r e a c t i o n s cause f e e l i n g s o f s t i g m a t i z a t i o n and c r e a t e a d i m i n i s h m e n t i n t h e i r sense o f s e l f - w o r t h . Norbeck (1981), i n h i s w r i t i n g s on s o c i a l s u p p o r t , p r e s e n t s the v iew t h a t d i s e a s e s can c r e a t e the p o t e n t i a l f o r a l i e n a t i o n o f i n d i v i d u a l s from p e r s o n s i n t h e i r s o c i a l system. D i s c o m f o r t from o t h e r s appears t o make the young a d u l t s i n the p r e s e n t s t u d y f e e l bad about themse lves and i n f l u e n c e s t h e i r d e c i s i o n s r e g a r d i n g d e c r e a s i n g s o c i a l a c t i v i t i e s . O c c a s i o n a l l y t h e p a r t i c i p a n t s have a l s o e x p e r i e n c e d the s t igma o f blame by o t h e r s f o r h a v i n g t h e i r i l l n e s s which was another no ted c o n t r i b u t i n g i n g r e d i e n t t o a l o w e r i n g o f some o f t h e i r s e l f - esteem. D e s p i t e s tatements made r e l a t e d t o the c o n c e p t o f s t i g m a t i z a t i o n , t h e r e were not enough accounts g i v e n by the p a r t i c i p a n t s connected w i t h t h i s n o t i o n , t o be a b l e t o i n c l u d e i t as a sub-theme on i t s own. A l t h o u g h a l l t h e young a d u l t s r e p o r t e d b e i n g concerned about t h e i r r e d u c e d s e l f - esteem, problems r e s u l t i n g from the p o s s i b l e s t i g m a t i z i n g e f f e c t s o f C r o h n ' s d i s e a s e or c o l i t i s were r e p o r t e d by o n l y some o f them. Perhaps the p a r t i c i p a n t s i n t h i s i n q u i r y d i d no t ment ion e x p e r i e n c i n g s t i g m a t i z a t i o n as o f t e n as t h o s e w i t h o t h e r i l l n e s s e s , such as c a n c e r , because t h e p h y s i c a l e f f e c t s o f C r o h n ' s d i s e a s e and c o l i t i s a r e not as r e a d i l y n o t i c e a b l e as those r e l a t e d t o h a v i n g c a n c e r . C l e a r l y , more r e s e a r c h i s needed t o e s t a b l i s h the c o n d i t i o n s under which t h o s e w i t h C r o h n ' s d i s e a s e and c o l i t i s f e e l more o r l e s s s t i g m a t i z e d . The young a d u l t s i n t h i s c u r r e n t i n v e s t i g a t i o n e x p e r i e n c e d overwhelming change, i n c l u d i n g change i n how t h e y saw themse lves as p e o p l e . Some o f the p a r t i c i p a n t s t a l k e d about how they had become " e s c a p i s t s and a v o i d e r s " . They saw themse lves as l o n e l y and i s o l a t e d . T h i s e x p e r i e n c e o f b e i n g i s o l a t e d can be seen t o be r e l a t e d t o some o f t h e consequences o f f e e l i n g s t i g m a t i z e d . As ment ioned e a r l i e r , when d i s c u s s i n g the s e l f - e s t e e m c a t e g o r y , some of t h e young a d u l t s t r i e d h a r d t o p r e v e n t h a v i n g peop le d i s c o v e r t h a t t h e y have C r o h n ' s d i s e a s e or c o l i t i s because they f e e l i t i s i n e v i t a b l e t h a t i t w i l l make o t h e r s f e e l uneasy . These uneasy r e a c t i o n s then b r i n g about f e e l i n g s o f s t i g m a t i z a t i o n f o r t h e p a r t i c i p a n t s . Lynam's (1990) r e s e a r c h s u g g e s t s t h a t many young a d u l t s w i t h cancer e x p e r i e n c e f e e l i n g s o f i s o l a t i o n because o f the i n a b i l i t y o f peop le i n t h e i r l i v e s t o p r o v i d e s u p p o r t c o m f o r t a b l y . The s i t u a t i o n s o f some o f the young a d u l t s i n the p r e s e n t s tudy i n v o l v e d f e e l i n g i s o l a t e d and appears t o be r e l a t e d t o e x p e r i e n c e o f s t i g m a t i z a t i o n i n v o l v e d i n peop le r e a c t i n g i n u n c o m f o r t a b l e ways towards them. The p a r t i c i p a n t s i n t h i s i n q u i r y t a l k e d about how t h e i r i l l n e s s has l e d t o extreme changes t h a t burden many a r e a s o f t h e i r l i v e s . R i e g a l (1975), i n r e s e a r c h i n g a d u l t l i f e c r i s e s , spoke o f c r i t i c a l events as forming a f o c a l p o i n t f o r change . B e i n g d iagnosed w i t h C r o h n ' s d i s e a s e o r c o l i t i s has c r e a t e d major l i f e - c h a n g e s f o r the young a d u l t s i n t h e p r e s e n t s t u d y . The p a r t i c i p a n t s shared t h e i r e x p e r i e n c e s o f change and d e s c r i b e d many of these changes as unwanted. The theme of change and adjustment can be seen t o be r e l a t e d t o another o f the p r i m a r y themes i n t h i s a n a l y s i s , t h a t o f g r i e f and l o s s . Brammer (1991) s t a t e s t h a t change can be e x p e r i e n c e d as l o s s , as r e g u l a r l i f e i s d i s r u p t e d , and l o s s p r e c i p i t a t e s f e e l i n g s o f g r i e f . The young a d u l t s i n t h e p r e s e n t s tudy e x p e r i e n c e d both a g r e a t d e a l o f change i n many d i m e n s i o n s o f t h e i r l i v e s and g r i e f over t h e l o s s i n c u r r e d by many of these changes . The e x p e r i e n c e o f l o s s causes f e e l i n g s o f g r i e f . A d j u s t i n g t o the l o s s o f p a s t c a p a c i t y t o f u l f i l l one ' s l i f e , or the l o s s o f s p e c i f i c p h y s i c a l a b i l i t i e s , t akes t i m e , and p o s s i b l y e x p e r t a s s i s t a n c e . The d i f f i c u l t t a s k s f o r a person d e a l i n g w i t h change and l o s s caused by an i l l n e s s are both p h y s i c a l and p s y c h o l o g i c a l i n n a t u r e w i t h the p s y c h o l o g i c a l t a s k s o f t e n p r o v i n g t o be the more d i f f i c u l t (Brammer, 1991). The s i t u a t i o n s o f the p a r t i c i p a n t s i n the p r e s e n t s t u d y i n v o l v e d a g r e a t d e a l o f change, l o s s , and g r i e f . When t h e young a d u l t s i n t h i s c u r r e n t i n q u i r y were d i a g n o s e d w i t h C r o h n ' s d i s e a s e or c o l i t i s they were f o r c e d t o g i v e up many t h i n g s - performance a b i l i t i e s , body and body image, and e n j o y a b l e a c t i v i t i e s - and were c o m p e l l e d t o make a d a p t a t i o n s . The r e l a t i o n between g r i e f and l o s s i s a p p a r e n t i n t h i s case o f severe l o s s . I l l n e s s causes a change t h a t i n v o l v e s c r i s e s and i s ladened w i t h i n t e n s e f e e l i n g s o f l o s s (Brammer, 1991). In c o n s i d e r i n g the changes t h a t t h e p a r t i c i p a n t s i n the p r e s e n t s tudy e x p e r i e n c e d i n l i v i n g w i t h t h e i r i l l n e s s e s , t h i s g r i e v i n g re sponse i s u n d e r s t a n d a b l e . They went through a p r o c e s s o f g i v i n g up t h e f a m i l i a r f o r the unknown and s c a r y . The young a d u l t s i n t h i s i n v e s t i g a t i o n a p p r a i s e d t h e i r i l l n e s s as something to which they needed t o a d j u s t t o . Brammer (1991) sugges ts t h a t adjustment i s an a u t o m a t i c a d a p t a t i o n a l response t o some form o f change t h a t i s c a u s i n g an a d d i t i o n a l burden i n one ' s l i f e . He proposes t h a t a d j u s t i n g t o a s i t u a t i o n may be the s e n s i b l e t h i n g t o do when i t i s f u t i l e t o s t r u g g l e a g a i n s t the changed c i r c u m s t a n c e (Brammer, 1991). B e n - S i r a (1982), i n examining c h r o n i c i l l n e s s , s t r e s s , and c o p i n g , found t h a t change i s an e s p e c i a l l y i m p o r t a n t a s p e c t o f l i v i n g w i t h a c h r o n i c i l l n e s s . He s t a t e s u n d o u b t e d l y , t h a t a c h r o n i c i l l n e s s by f a r t r a n s c e n d s the bounds o f a r e a s o n a b l e c o u r s e o f l i f e . He emphasizes how a c h r o n i c i l l n e s s c a l l s f o r a person t o make m o d i f i c a t i o n s and a d a p t a t i o n s which may be p e r c e i v e d insurmountab le ( B e n - S i r a , 1982) . The p a r t i c i p a n t s i n the p r e s e n t s tudy e x p e r i e n c e d overwhelming changes i n numerous areas o f t h e i r l i v e s . R e l a t i o n s h i p s w i t h o t h e r s appeared t o go t h r o u g h change and adjus tment f o r these young a d u l t s . A l t h o u g h t h e r e was n o t enough ment ion o f t h i s change i n r e l a t i o n s h i p s t o i n c l u d e i t as a sub-theme, adjustment t o the way the p a r t i c i p a n t s behave i n s o c i a l s i t u a t i o n s e x i s t i n t h e i r e x p e r i e n c e s . A d d i t i o n a l i n v e s t i g a t i o n s would be u s e f u l t o more f u l l y e x p l o r e the theme of change i n r e l a t i o n s h i p env ironments o f those w i t h C r o h n ' s d i s e a s e and c o l i t i s B e n - S i r a (1982) found t h a t the c h r o n i c a l l y i l l p e r s o n has t o cope w i t h new demands which have the p o t e n t i a l o f s t r i p p i n g a p e r s o n o f c o n t r o l over t h e i r l i f e . A p o w e r f u l theme e s t a b l i s h e d i n the p r e s e n t f i n d i n g s concerned t h e d e p r i v a t i o n o f some of the young a d u l t s ' c o n t r o l over t h e i r l i v e s . The young a d u l t s i n t h i s s tudy l i v e much o f t h e i r l i v e s f e e l i n g l i t t l e c o n t r o l over the p a t h t h e i r s i t u a t i o n s a r e t o t a k e . A s t r o n g p r i m a r y theme found i n t h i s r e s e a r c h i n v o l v e d t h e c o n s t a n t l y accompanying t h r e a t o f the u n p r e d i c t a b l e o c c u r r e n c e o f f u r t h e r e p i s o d e s . A f r e q u e n t l y ment ioned c o n c e p t , t h a t i s s t r o n g l y r e l a t e d t o t h i s theme o f u n p r e d i c t a b i l i t y , was the n o t i o n o f u n c e r t a i n t y . B e n - S i r a (1982) , e s t a b l i s h e d t h a t the u n c e r t a i n t y o f a c h r o n i c d i s e a s e ' s p r o g n o s i s , p a r t i c u l a r l y , the c o n s t a n t l y accompanying danger o f the unforeseen i n c i d e n c e o f o t h e r bad e p i s o d e s i s a p a r t i c u l a r l y impor tant a s p e c t o f l i v i n g w i t h a c h r o n i c i l l n e s s . U n c e r t a i n t y , as d e f i n e d by M c i n t o s h (1976), i n v o l v e s the i n a b i l i t y t o a c c u r a t e l y p r e d i c t outcomes. A c c o r d i n g t o M i s h e l (1984), u n c e r t a i n t y i s g e n e r a t e d by event s c h a r a c t e r i z e d as u n p r e d i c t a b l e , u n f a m i l i a r , o r l a c k i n g i n f o r m a t i o n . M i s h e l (1981) sugges t s t h a t i n t h e i l l n e s s e x p e r i e n c e , u n c e r t a i n t y has f o u r forms: a m b i g u i t y i n r e s p e c t t o the s t a t e o f the i l l n e s s , c o m p l e x i t y r e g a r d i n g t h e t r e a t m e n t and the method of c a r e , l a c k o f i n f o r m a t i o n about the d i a g n o s i s and s e r i o u s n e s s o f the i l l n e s s , and u n p r e d i c t a b i l i t y as t o the course o f the d i s e a s e and p r o g n o s i s , i n c l u d i n g how o f t e n and f o r how l o n g h o s p i t a l i z a t i o n w i l l o c c u r . Two s u b - c a t e g o r i e s o f the f e a r and a n x i e t y theme e s t a b l i s h e d i n t h i s i n v e s t i g a t i o n concerned the unknown a s p e c t s o f C r o h n ' s d i s e a s e and c o l i t i s , and the unknown a s p e c t s o f the h o s p i t a l . These s u b - c a t e g o r i e s o f f e a r and a n x i e t y can be seen t o be r e l a t e d t o the o v e r r i d i n g f e e l i n g o f u n c e r t a i n t y found i n Theme 1. However, Theme 1 d e a l s s p e c i f i c a l l y w i t h the u n p r e d i c t a b i l i t y o f symptoms, w h i l e t h e p r e s e n t theme d e a l s s p e c i f i c a l l y w i t h f e a r and a n x i e t y . These young a d u l t s f e l t s c a r e d when they f i r s t began f e e l i n g s i c k and a l s o f e e l anx ious because not much i s r e a l l y known about t h e s e i l l n e s s e s . In a d d i t i o n , the p a r t i c i p a n t s become f e a r f u l when f a c e d w i t h a l l the new e x p e r i e n c e s i n v o l v e d i n b e i n g h o s p i t a l i z e d . M i s h e l (1981) found t h a t l i m i t e d p r i o r e x p e r i e n c e w i t h h o s p i t a l events may i n t e n s i f y u n c e r t a i n t y . Many o f the young a d u l t s i n the p r e s e n t s tudy e x p r e s s e d how they had never r e a l l y e x p e r i e n c e d b e i n g i n the h o s p i t a l and were u n c e r t a i n as t o what was g o i n g t o o c c u r . These u n c e r t a i n t i e s impose huge demands on the c h r o n i c a l l y i l l p e r s o n . A l o n g w i t h u n c e r t a i n t i e s s p e c i f i c t o the i l l n e s s , t h e t i m i n g of onset o f C r o h n ' s d i s e a s e and c o l i t i s i s a t a t ime when d e v e l o p m e n t a l l y t h e r e are many u n c e r t a i n t i e s about o n e ' s f u t u r e . There are a l s o u n c e r t a i n t i e s about the changes i n o n e ' s body d u r i n g t h i s t i m e . T h e r e f o r e , the p r i m a r y theme i n v o l v i n g the c o n s t a n t l y accompanying t h r e a t o f t h e u n p r e d i c t a b l e o c c u r r e n c e o f f u r t h e r e p i s o d e s and t h e two s u b - c a t e g o r i e s o f the f e a r theme warrant f u r t h e r i n v e s t i g a t i o n i n r e l a t i o n t o the l a r g e r concept o f u n c e r t a i n t y . The r e s u l t s o b t a i n e d i n v o l v i n g u n p r e d i c t a b i l i t y and u n c e r t a i n t y share s i m i l a r i t i e s t o those c o l l e c t e d i n W i e n e r ' s (1975) s tudy on the burden of rheumato id a r t h r i t i s i n p e r s o n s 28-3 0 y e a r s o f age. She r e p o r t e d t h a t p e o p l e w i t h r h e u m a t o i d a r t h r i t i s l e a r n , over t i m e , t h a t i t s f l a r e - u p s and s p e c i f i c m a n i f e s t a t i o n s are u n p r e d i c t a b l e . I t imposes t h e burden o f t o t a l absence o f p r e d i c t a b i l i t y . T h e r e i s u n c e r t a i n t y about such t h i n g s as : (1) whether t h e r e w i l l be any p a i n o r s w e l l i n g ; (2) the a r e a o f i n v o l v e m e n t ; (3) how l o n g i t w i l l l a s t ; and (4) how f r e q u e n t l y f l a r e - u p s w i l l o c c u r . Under t h i s c o n d i t i o n o f v a r i a b l e u n c e r t a i n t y , one o f t h e c r i t i c a l a f f e c t s i s p s y c h o l o g i c a l , i n v o l v i n g h a v i n g t o m o n i t o r p a i n every day, or even every h o u r . The r e s u l t s o b t a i n e d i n t h e p r e s e n t s tudy a l s o i n c l u d e d t h e theme o f c o n s t a n t l y accompanying t h r e a t s o f u n p r e d i c t a b l e o c c u r r e n c e s o f symptoms. Wiener (1975) a l s o found t h a t a r e d u c t i o n o f per formance s k i l l s may o c c u r f o r those w i t h a r t h r i t i s , a t t r i b u t a b l e t o f a c t o r s t h a t i n c l u d e d l o s s o f body s t r e n g t h . A weakening and then w a s t i n g o f muscle may o c c u r above and below the a f f e c t e d j o i n t , c a u s i n g a l o s s o f s t r e n g t h . H a v i n g C r o h n ' s d i s e a s e o r c o l i t i s caused a v a r i e t y o f l o s s e s f o r t h e p a r t i c i p a n t s i n the p r e s e n t s t u d y , i n c l u d i n g l o s s o f per formance a b i l i t i e s , and b o d i l y s t r e n g t h . The p r e s e n t r e s e a r c h p r o v i d e s c l e a r i n d i c a t i o n s o f how h a v i n g a c h r o n i c i l l n e s s can prompt r e m i n i s c e n c e about former good t imes and l e a d t o g r i e f over t h e l o s s o f t h e s e e a s i e r t i m e s . These f i n d i n g s i l l u s t r a t e those r e p o r t e d by Cohen and L a z a r u s (1979), and Weisman and Worden (1976) . T h e i r s t u d i e s o f p e o p l e s ' e x p e r i e n c e s w i t h s e r i o u s i l l n e s s e s , i d e n t i f i e d c o p i n g b e h a v i o u r s . These s t u d i e s found t y p i c a l c o p i n g s t r a t e g i e s t o i n c l u d e r e m i n i s c e n c e s about former good t i m e s . In g e n e r a l , t h i s sample o f young a d u l t s r e p o r t e d t h a t t h e y e x p e r i e n c e d l o s s over not b e i n g a b l e t o do more p h y s i c a l - t y p e a c t i v i t i e s s i n c e d e v e l o p i n g C r o h n ' s d i s e a s e o r c o l i t i s . In l i g h t o f phenomenolog ica l r e s e a r c h on o t h e r c h r o n i c i l l n e s s e s , these f i n d i n g s are c o n s i s t e n t w i t h t h e n o t i o n t h a t an i m p o r t a n t c h a r a c t e r i s t i c o f c h r o n i c i l l n e s s i s t h a t t h e i r i s a n o t i c e a b l e l o s s i n p h y s i c a l a b i l i t y . H a a s e ' s (1987) s tudy showed t h a t c h r o n i c a l l y i l l a d o l e s c e n t s d i a g n o s e d w i t h e i t h e r l eukemia , c h r o n i c r e n a l f a i l u r e , c y s t i c f i b r o s i s , r e c t o - v a g i n a l f i s t u l a , pulmonary s t e n o s i s , o r s c o l i o s i s e x p e r i e n c e d extreme l o s s o f p h y s i c a l a b i l i t y . D i f f i c u l t y w i t h p h y s i c a l changes and the e f f e c t t h e y have on d a i l y l i v i n g and q u a l i t y o f l i f e was a prominent theme f o r the p a r t i c i p a n t s i n her s t u d y . P h y s i c a l changes , a t t i m e s , caused more c o n c e r n than the a c t u a l d i s e a s e (Haase, 1987) . The themes o f f e e l i n g a g r e a t d e a l o f anger , and l a c k o f c o n t r o l , p r e s e n t i n the c u r r e n t s t u d y , d e l i n e a t e a n o t h e r f i n d i n g o f Haase , t h a t anger , and f e e l i n g a l a c k o f c o n t r o l i s a common response t o many s i t u a t i o n s i n v o l v e d i n h a v i n g an i l l n e s s . A l s o , i n her i n v e s t i g a t i o n , she found t h a t e x p e r i e n c e s o f u n c e r t a i n t y over the outcomes o f t h e v a r i o u s i l l n e s s e s was a p r e v a l e n t theme. The concept o f u n c e r t a i n t y i s a l s o p r e s e n t i n the c u r r e n t s tudy and, as d i s c u s s e d above , can be found w i t h i n the p r i m a r y theme o f u n p r e d i c t a b i l i t y and w i t h i n two of the f i v e s u b - c a t e g o r i e s o f the f e a r and a n x i e t y theme. The p r e s e n t s tudy found a marked i n c r e a s e i n f e e l i n g s o f f e a r o r a n x i e t y over the unknown a s p e c t s o f c h r o n i c i l l n e s s , and o f m e d i c a l t e s t s . Hasse (1987) found t h a t f e a r o f changes i n p h y s i c a l s t a t u s , d i s e a s e r e o c c u r r e n c e , and t h e i n t r u s i v e n e s s o f p r o c e d u r e s were t h r e e common themes. E x p e r i e n c i n g u n p l e a s a n t but n e c e s s a r y m e d i c a t i o n s was a n o t h e r theme found i n her s t u d y . The p a r t i c i p a n t s i n t h e p r e s e n t s t u d y e x p e r i e n c e d f e e l i n g v i o l a t e d by the drugs t h a t were p r e s c r i b e d f o r t h e i r i l l n e s s e s . Thus , the young a d u l t s i n t h e c u r r e n t s tudy share some of the same e x p e r i e n c e s o f t h o s e w i t h l e u k e m i a , c h r o n i c r e n a l f a i l u r e , c y s t i c f i b r o s i s , r e c t o - v a g i n a l f i s t u l a , pulmonary s t e n o s i s , and s c o l i o s i s s t u d i e d by Hasse (1987). In a d d i t i o n t o the f i n d i n g s t h a t concur w i t h p r e v i o u s r e s e a r c h , two n o t a b l e sub-themes emerged from t h i s i n v e s t i g a t i o n t h a t were not c l e a r l y i l l u s t r a t e d i n t h e l i t e r a t u r e r e v i e w e d . P a r t i c i p a n t s i n the p r e s e n t s t u d y showed t h a t one o f the types o f impor tant e x p e r i e n c e s i n v o l v e d i n l i v i n g w i t h these c h r o n i c i l l n e s s e s was t h a t o f f e e l i n g a n x i e t y , s p e c i f i c a l l y caused by overwhelming emot ions brought about by h a v i n g t o d e a l w i t h t h e i r i l l n e s s . A marked i n c r e a s e i n f e e l i n g s o f f e a r and a n x i e t y o v e r t h e unknown a s p e c t s o f c h r o n i c i l l n e s s , and of m e d i c a l t e s t s were themes found i n H a s s e ' s s tudy (1987), however, t h e young a d u l t s i n t h i s c u r r e n t s tudy a l s o f e l t a n x i e t y caused by e x p e r i e n c i n g overpower ing emotions they e n c o u n t e r e d because o f h a v i n g C r o h n ' s d i s e a s e o r c o l i t i s . An e x a m i n a t i o n o f t h i s theme i n d i c a t e s t h a t many of the p a r t i c i p a n t s f e e l f r i g h t e n e d and unsafe c a r r y i n g around a l l the se s t r o n g emot ions . One may assume t h e n , t h a t some form o f c o u n s e l l i n g , a l t h o u g h perhaps not n e c e s s a r i l y h e l p f u l f o r t h e t r e a t m e n t o f the p h y s i c a l symptoms o f these c h r o n i c i l l n e s s e s , may be conduc ive t o the e m o t i o n a l h e a l t h o f t h o s e l i v i n g w i t h these i l l n e s s e s . The p r i m a r y theme o f change and adjus tment i n many d i m e n s i o n s , i n c l u d e d the s u b - c a t e g o r y o f p e r c e i v e d changes i n s e l f . I t was found t h a t these young a d u l t s e x p e r i e n c e d a change i n t h e i r " p e r s o n a l i t i e s " s i n c e d e v e l o p i n g t h e i r i l l n e s s . An examinat ion o f t h i s theme i n d i c a t e s t h a t b e i n g l e s s o f an a c t i v e p a r t i c i p a t o r i n l i f e i s one o f t h e changes i n s e l f e x p e r i e n c e d by these p a r t i c i p a n t s . Many r e p o r t e d f e e l i n g l i k e a e n t i r e l y changed human b e i n g because o f t h e i r d i s e a s e and y e a r n i n g f o r the person they once were . I t appears p o s s i b l e t h a t e x p e r i e n c e s i n v o l v e d i n h a v i n g C r o h n ' s d i s e a s e o r c o l i t i s may a c t u a l l y cause n o t a b l e changes i n t h a t p e r s o n s r e p r e s e n t a t i o n o f s e l f . W h i l e t h i s e lement has no t c l e a r l y s u r f a c e d i n the l i t e r a t u r e r e v i e w e d , t h i s theme i s s t r o n g l y noted i n the p r e s e n t s t u d y . Some p r e v i o u s r e s e a r c h suggests t h a t C r o h n ' s d i s e a s e and c o l i t i s may have been caused by e m o t i o n a l and p s y c h o l o g i c a l d i s t u r b a n c e s ( A r a p a k i s e t a l . , 1986; C a s t e l n u o v o - T e d e s c o , 1966; F r e y b e r g e r e t a l . , 1985) . A l t h o u g h , t h r e e young a d u l t s t a l k e d about cause , t h e o t h e r seven made no ment ion o f t h i s i s s u e . T h e r e f o r e , t h i s t o p i c appeared as a n o n - s a l i e n t theme i n the c u r r e n t s t u d y . The l a c k o f importance p l a c e d upon t h i s t o p i c by most o f t h e p a r t i c i p a n t s i n the p r e s e n t s t u d y , i n g e n e r a l , may sugges t t h a t t h e i r e x p e r i e n c e s o f l i v i n g w i t h C r o h n ' s d i s e a s e o r c o l i t i s , d i d not h i g h l y i n v o l v e the q u e s t i o n o f whether t h e i r i l l n e s s e s were caused by some type o f e m o t i o n a l d i s o r d e r o r n o t . P e r h a p s , because o f t h i s i d e a , t o d a y , b e i n g g e n e r a l l y d i s c o u n t e d , t h i s was no l o n g e r a prominent i s s u e f o r them. I m p l i c a t i o n s f o r Research Through t h i s s tudy a whole h o s t o f q u e s t i o n s i n c o n n e c t i o n w i t h the l i f e e x p e r i e n c e s o f young a d u l t s w i t h C r o h n ' s d i s e a s e o r c o l i t i s have p r e s e n t e d t h e m s e l v e s . Many o f t h e s e new i n q u i r i e s are s p e c i f i c a l l y r e l a t e d t o t h e g e n e r a l themes. These i n c l u d e such q u e s t i o n s a s : Would some form o f c o u n s e l l i n g b e n e f i t these young a d u l t s i n d e a l i n g w i t h g r i e f and l o s s , s e l f - e s t e e m i s s u e s , overwhelming f e e l i n g s caused by i l l n e s s , i n c l u d i n g anger? Does t h e marked i n c r e a s e i n f e a r and a n x i e t y over the i l l n e s s , h o s p i t a l , and t e s t s , a f f e c t o t h e r domains o f l i f e ? Would p r o v i d i n g more i n f o r m a t i o n r e g a r d i n g t e s t s a l l e v i a t e some o f the f e a r s u r r o u n d i n g them? What are the p o s i t i v e changes i n v o l v e d i n a d a p t i n g t o C r o h n ' s d i s e a s e or c o l i t i s ? What a r e some h e a l t h y ways f o r a young a d u l t w i t h a c h r o n i c i l l n e s s t o g a i n more c o n t r o l over t h e i r l i f e ? C o u l d the e x p e r i e n c e o f p e r s o n s w i t h an i l l n e s s be made l e s s v i o l a t i n g ? In a d d i t i o n t o q u e s t i o n s s p e c i f i c a l l y r e l a t e d t o the g e n e r a l themes, r e l a t e d arenas f o r i n q u i r y c o u l d i n v o l v e the e x p l o r a t i o n o f the n a t u r e o f change i n key r e l a t i o n s h i p s o f p e r s o n s w i t h C r o h n ' s d i s e a s e or c o l i t i s . F o r example, how might f r i e n d s h i p s or f a m i l y r e l a t i o n s h i p s be t r a n s f o r m e d when one has a c h r o n i c i l l n e s s ? A n o t h e r group o f q u e s t i o n s t h a t a r i s e from t h i s s t u d y i n c l u d e s p e c u l a t i o n s c o n c e r n i n g the n a t u r e o f changes i n the w o r l d o f work or s c h o o l . Does h a v i n g C r o h n ' s d i s e a s e o r c o l i t i s t e n d t o p r e c i p i t a t e , or i n v o l v e , a p r o c e s s o f c a r e e r change? A r e t h e r e p a r t i c u l a r k i n d s o f work t h a t t e n d t o a t t r a c t p e r s o n s who have a c h r o n i c i l l n e s s ? A r e t h e r e c e r t a i n f i e l d s o f employment t h a t are more s u p p o r t i v e o f p e r s o n s w i t h an i l l n e s s ? T h i s s t u d y , as a p r e l i m i n a r y at tempt t o u n d e r s t a n d what peop le w i t h C r o h n ' s d i s e a s e o r c o l i t i s e x p e r i e n c e i n t h e i r l i v e s , r a i s e s another p e r t i n e n t q u e s t i o n . A r e the r e s u l t s a p p l i c a b l e t o o t h e r c h r o n i c i l l n e s s e s ? In e v e r y sphere o f l i f e , q u e s t i o n s a d d r e s s i n g t h e impact o f h a v i n g C r o h n ' s d i s e a s e or c o l i t i s c o u l d be e x p l o r e d . I m p l i c a t i o n s f o r C o u n s e l l i n g W i t h 2,000 new cases o f C r o h n ' s d i s e a s e and c o l i t i s b e i n g d i a g n o s e d each y e a r , i t i s q u i t e p r o b a b l e t h a t p e r s o n s w i t h i n the c o u n s e l l i n g f i e l d w i l l come a c r o s s an i n d i v i d u a l a t t e m p t i n g t o l i v e w i t h one o f these c h r o n i c i l l n e s s e s . The r e s u l t s o f the p r e s e n t s tudy suggest t h a t t h e r e a r e s e v e r a l common themes among the e x p e r i e n c e s o f young a d u l t s l i v i n g w i t h C r o h n ' s d i s e a s e or c o l i t i s . The q u a l i t a t i v e d a t a from t h i s c u r r e n t s tudy p r o v i d e s an u n d e r s t a n d i n g o f the e x p e r i e n c e s o f l i v i n g w i t h these c h r o n i c i l l n e s s e s , which i n t u r n c o u l d p r o v i d e an i n c r e a s e d awareness o f how a c o u n s e l l o r c o u l d be more e f f e c t i v e i n s u p p o r t i n g a p e r s o n t h a t has one o f these i l l n e s s e s . One o f the themes p r e s e n t i n the d a t a i n d i c a t e s a need f o r h e l p around g r i e f i s s u e s . A l o n g w i t h e x p e r i e n c i n g g r i e f , a marked i n c r e a s e i n f e e l i n g s o f a n x i e t y was a n o t h e r common theme found i n the p r e s e n t s t u d y . C o u n s e l l i n g may h e l p i n d e a l i n g w i t h these e m o t i o n a l r e a c t i o n s i n v o l v e d i n h a v i n g C r o h n ' s d i s e a s e o r c o l i t i s . C o u n s e l l o r s who u n d e r s t a n d and p e r c e i v e a c c u r a t e l y the e x p e r i e n c e s o f l i v i n g w i t h t h e s e i l l n e s s e s may h e l p the i n d i v i d u a l i n d e a l i n g w i t h t h e s e f e e l i n g s . C o u n s e l l i n g , i n v o l v i n g the e m o t i o n a l a s p e c t s o f C r o h n ' s d i s e a s e o r c o l i t i s ( i e . g r i e f , a n x i e t y , and a n g e r ) , may be improved i f i t i s r e c o g n i z e d t h a t these i l l n e s s e s w i l l have major i m p l i c a t i o n s i n many areas o f an i n d i v i d u a l ' s l i f e , i n c l u d i n g such domains as the l o s s o f performance a b i l i t i e s a t s c h o o l a n d / o r work, and p a r t i c i p a t i o n i n e n j o y a b l e a c t i v i t i e s . The more the i n d i v i d u a l d e a l s w i t h t h e i r a n x i e t y , g r i e f , and anger s t i r r e d up by h a v i n g C r o h n ' s d i s e a s e or c o l i t i s , the b e t t e r they may be a b l e t o d e a l w i t h t h e p h y s i c a l demands o f t h e i r i l l n e s s and the a d d i t i o n a l s t r a i n s imposed by t h e i r i l l n e s s . On the o t h e r hand, f a i l u r e t o d e a l w i t h the e m o t i o n a l responses t o h a v i n g C r o h n ' s d i s e a s e o r c o l i t i s may decrease the i n d i v i d u a l ' s a b i l i t y t o d e a l w i t h the demands o f t h e i r i l l n e s s , thus i n c r e a s i n g the l i k e l i h o o d o f s e v e r e ongoing e m o t i o n a l d i s t r e s s o v e r t h e l o s s e s e x p e r i e n c e d . P a r t i c i p a n t s i n the p r e s e n t s tudy l o s t a g r e a t d e a l as t h e i r p a s t performance a b i l i t i e s became s e v e r e l y l i m i t e d . A l o n g w i t h l o s s o f performance a b i l i t i e s , r e s t r i c t i o n s on a c t i v i t i e s o f the p a r t i c i p a n t s i n the p r e s e n t s t u d y appeared t o be i n e v i t a b l e . By emphas iz ing a r e a s o f s a t i s f a c t o r y f u n c t i o n i n g and p o t e n t i a l s t r e n g t h s , c o u n s e l l o r s may do much t o h e l p the i n d i v i d u a l l i v i n g w i t h C r o h n ' s d i s e a s e o r c o l i t i s a c h i e v e a b a l a n c e d acceptance o f t h e i r s t r e n g t h s and l i m i t a t i o n s . H e l p i n g i n d i v i d u a l s d e a l w i t h t h e i r a n x i e t i e s so t h a t t h e y can d e a l w i t h the demands o f t h e i r i l l n e s s may p l a y a c r u c i a l p a r t i n m i n i m i z i n g more s e r i o u s and l o n g - l a s t i n g e m o t i o n a l d i s t r e s s . What i s open ly acknowledged i s on t h e whole l e s s ominous than t h a t which i s known but not d i s c u s s e d . Openly acknowledging f e e l i n g s o f anger may be a n o t h e r i m p o r t a n t p r o c e s s f o r young a d u l t s w i t h C r o h n ' s d i s e a s e o r c o l i t i s t o go t h r o u g h . One o f the common emot ions found i n the p r e s e n t s tudy i n v o l v e d f e e l i n g a g r e a t d e a l o f anger as a r e s u l t o f h a v i n g t o d e a l w i t h C r o h n ' s d i s e a s e o r c o l i t i s . Some i n d i v i d u a l s need a chance t o expres s t h e i r anger i n a h e a l t h y way i n o r d e r t o b e t t e r d e a l w i t h t h e management o f t h e i r i l l n e s s . C o u n s e l l o r s who c o n t i n u e t o a p p r o a c h the i n d i v i d u a l w i t h empathy may be a b l e t o h e l p them d e a l w i t h t h e i r anger and o t h e r s t r o n g emotions i n an a p p r o p r i a t e way. G i v e n the wide range o f l i m i t a t i o n s put upon c a r e e r a n d / o r e d u c a t i o n , when c o u n s e l l i n g a p e r s o n w i t h one o f t h e s e i l l n e s s e s , s p e c i f i c a t t e n t i o n may need t o be p a i d t o s u p p o r t i n g them through the g r e a t d e a l o f changes t h e y w i l l l i k e l y go t h r o u g h . Adjustments t o t r a n s i t i o n s was a common theme f o r the young a d u l t s i n t h i s s t u d y . With an i n c r e a s e d u n d e r s t a n d i n g o f the many adjustments those w i t h C r o h n ' s d i s e a s e o r c o l i t i s must make, the p o t e n t i a l f o r p r o v i d i n g b e t t e r t h e r a p e u t i c i n t e r v e n t i o n d u r i n g these t r a n s i t i o n s i n c r e a s e s . The d i a g n o s i s o f C r o h n ' s d i s e a s e or c o l i t i s p r e c i p i t a t e d many changes i n the l i v e s o f the p a r t i c i p a n t s i n the p r e s e n t s t u d y . The c o u n s e l l o r who r e c o g n i z e s t h e p o t e n t i a l f o r n e g a t i v e a f f e c t s t h a t , a c c o r d i n g t o the r e s u l t s i n t h i s c u r r e n t s t u d y , are i n e v i t a b l y p r o d u c e d , may do much t o m i n i m i z e the d e s t r u c t i v e e f f e c t s and a i d the i n d i v i d u a l i n a d a p t i n g t o l i f e w i t h an i l l n e s s . The p a r t i c i p a n t s i n the p r e s e n t s tudy were seen as h a v i n g t o c o n s t a n t l y adapt t o s i t u a t i o n s t h a t they f e l t were out o f t h e i r c o n t r o l . They have the d a y - t o - d a y s t r u g g l e o f t r y i n g t o keep some sense o f ba lance and c o n t r o l w i t h i n a l l t h e changes and g i v e meaning t o t h e i r l i v e s as they a t tempt t o manage t h e i r c h r o n i c i l l n e s s . I t appeared t o be q u i t e d i f f i c u l t f o r the young a d u l t s i n t h e p r e s e n t s tudy t o have a sense o f c o n t r o l w i t h h a v i n g C r o h n ' s d i s e a s e o r c o l i t i s . Perhaps i n t h i s case what a c o u n s e l l o r might do i s p r o v i d e some form of c o n f i r m i n g the a r e a s i n the young a d u l t ' s l i f e where they can have a sense o f c o n t r o l . The c o u n s e l l o r can h e l p the young a d u l t w i t h C r o h n ' s d i s e a s e or c o l i t i s focus around the a r e a s where a sense o f c o n t r o l i s p o s s i b l e . F o r young a d u l t s d e a l i n g w i t h these i l l n e s s e s , c o u n s e l l o r s might h e l p by working w i t h them u s i n g a more C l i e n t C e n t r e d approach so as t o a l l o w the p e r s o n a sense o f c o n t r o l , a f e e l i n g they are not o f t e n a l l o w e d w i t h i n t h e i r l i v e s . C l i e n t C e n t r e d Therapy can be seen as a u s e f u l s t y l e o f c o u n s e l l i n g f o r a l l o w i n g a c l i e n t t o have more o f a sense o f c o n t r o l over the t h e r a p e u t i c p r o c e s s and t h e i r l i v e s . C l i e n t C e n t r e d Therapy a t t e n d s t o what i s r e g a r d e d as i n t r i n s i c p r o c e s s e s o f a d a p t i o n . C l i e n t - c e n t r e d t h e r a p y i m p l i e s t h a t peop le s e e k i n g p s y c h o l o g i c a l a s s i s t a n c e a r e t r e a t e d as r e s p o n s i b l e c l i e n t s w i t h the power t o d i r e c t t h e i r own l i v e s . I t i s assumed t h a t the p e r s o n can be t r u s t e d and does not need t o be c o n t r o l l e d by o t h e r s who a r e i n a s u p e r i o r and e x p e r t s i t u a t i o n . C o u n s e l l o r s may a l s o c o n s i d e r group t h e r a p y f o r i n d i v i d u a l s w i t h C r o h n ' s d i s e a s e or c o l i t i s . D i s c u s s i n g t h e i r f e e l i n g s and concerns about how t h e i r i l l n e s s has a f f e c t e d t h e i r l i v e s w i t h o t h e r s who may have common e x p e r i e n c e s c o u l d p r o v i d e needed s u p p o r t . The c o u n s e l l o r may be h e l p f u l i n t h i s r e s p e c t by a s s i s t i n g the young a d u l t w i t h C r o h n ' s d i s e a s e or c o l i t i s i n f i n d i n g p e o p l e t h a t may a l s o be d e a l i n g w i t h one o f these c h r o n i c i l l n e s s e s . The e v i d e n c e accumulated i n the p r e s e n t s t u d y demonstrates t h a t f e e l i n g s o f g r i e f , a n x i e t y , and anger can be a consequence o f h a v i n g C r o h n ' s d i s e a s e o r c o l i t i s . A l o n g w i t h t h e s e v a r i o u s f e e l i n g s , e x p e r i e n c e s o f l o s s r e g a r d i n g per formance a b i l i t i e s and p a r t i c i p a t i o n i n e n j o y a b l e a c t i v i t i e s , a g r e a t d e a l o f change and a d j u s t m e n t , and a d e p r i v a t i o n o f c o n t r o l over one ' s l i f e a l l appeared as r e s u l t i n g from h a v i n g C r o h n ' s d i s e a s e or c o l i t i s . C o u n s e l l i n g c o u l d be an important area where an i n d i v i d u a l would be p r o v i d e d w i t h impor tant p s y c h o l o g i c a l s u p p o r t i n d e a l i n g w i t h these many i s s u e s . P e r s o n a l Meaning; In t h e b e g i n n i n g o f t h i s s t u d y , I was m o t i v a t e d by the hope o f p r o v i d i n g more i l l u m i n a t i o n o f what l i v i n g w i t h a c h r o n i c i l l n e s s was l i k e , as i t was b e i n g e x p e r i e n c e d by young a d u l t s . My i n t e r e s t arose out o f my own e x p e r i e n c e w i t h C r o h n ' s d i s e a s e and my r o l e as a c o u n s e l l o r i n s u p p o r t i n g peop le d e a l i n g w i t h v a r i o u s l i f e i s s u e s . As I became immersed i n the s tudy - w i t h r e a d i n g , w i t h the i n t e r v i e w d i a l o g u e s and w r i t t e n n a r r a t i v e s , w i t h t r a n s c r i b i n g tapes o f the s e s s i o n s , w i t h c o n s t r u c t i n g t h e s t o r i e s - I g r a d u a l l y became aware o f how I too have l i v e d o r am l i v i n g through many, i f not a l l o f the e x p e r i e n c e s t h a t t h e p a r t i c i p a n t s have had . These e x p e r i e n c e s have been t r a n s f o r m e d f o r me, over the d u r a t i o n o f t h i s s t u d y , i n t o a deeper sense o f what l i v i n g w i t h a c h r o n i c i l l n e s s has meant i n my l i f e . T h i s t r a n s f o r m a t i o n i s d i f f i c u l t t o communicate i n words , but the d i f f e r e n t f e e l i n g s s u r r o u n d i n g t h i s new awareness has had an e f f e c t on how I see m y s e l f and my r e a c t i o n s t o the w o r l d . I t was as i f r e a d i n g the t r a n s c r i p t s , over and o v e r , c r e a t e d a r i c h e r i n t i m a c y w i t h my own l i f e . The themes r e p e a t e d throughout the i n t e r v i e w s and w r i t t e n n a r r a t i v e s , f l o o d e d my thoughts w i t h memories o f my own e x p e r i e n c e s . As I e x p l o r e d these memories , I e x p e r i e n c e d an i n c r e a s e d awareness o f how l i v i n g w i t h a c h r o n i c i l l n e s s has had a profound impact on who I am as a p e r s o n . References A l b e r t s , M . S . , & L y o n s , J . S . (1988). R e l a t i o n s o f c o p i n g s t y l e and i l l n e s s v a r i a b l e s i n u l c e r a t i v e c o l i t i s . 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Meagher ( E d s . ) , Handbook of C l i n i c a l H e a l t h P s y c h o l o g y (pp. 153-172) . New Y o r k : Plenum P r e s s . S p e r l i n g , M. (1946). P s y c h o a n a l y t i c s tudy of u l c e r a t i v e c o l i t i s i n c h i l d r e n . P s y c h o a n a l y t i c Q u a r t e r l y , 15, 302- 329. S t e i n h a u e r , P . D . , Mush in , D. N . , & R a e - G r a n t , Q. (1982) . P s y c h o l o g i c a l a s p e c t s o f c h r o n i c i l l n e s s . London: Henry Kimpton P u b l i s h e r s . S t i e n h a u s e n , H . , & K i e s , H . (1982). Comparat ive s t u d i e s o f u l c e r a t i v e c o l i t i s and C r o h n ' s d i s e a s e i n c h i l d r e n and a d o l e s c e n t s . J o u r n a l o f C h i l d P s y c h o l o g y and P s y c h i a t r y , 41, 450-455. T a y l o r , G . J . , & Doody, K. (1985). V e r b a l measures o f a l e x t h y m i a : What do they measure. P s y c h o t h e r a p y and P s y c h o s o m a t i c s , 43., 32-37. T e s c h , R. (1990). Q u a l i t a t i v e r e s e a r c h : A n a l y s i s t y p e s and s o f t w a r e t o o l s . New Y o r k : The Falmer P r e s s . T o l o r , A . (1985). E f f e c t i v e i n t e r v i e w i n g . S p r i n g f i e l d , I I : C h a r l e s C . Thomas P u b l i s h e r s , van Manen, M. (1984). "Doing" phenomenolog ica l r e s e a r c h and w r i t i n g : An i n t r o d u c t i o n . Monograph #7, The U n i v e r s i t y o f A l b e r t a . Weisman, A . D . , & Worden, J . W . (1976). The e x i s t e n t i a l p l i g h t i n c a n c e r : S i g n i f i c a n c e o f the f i r s t 100 d a y s . I n t e r n a t i o n a l J o u r n a l o f P s y c h i a t r i c M e d i c i n e , 7, 1-13. W i e n e r , C . L . (1975). The burden of rheumato id a r t h r i t i s : t o l e r a t i n g the u n c e r t a i n t y . S o c i a l S c i e n c e and M e d i c i n e , 9, 97-104. W i l l s , T . A . (1985). S u p p o r t i v e f u n c t i o n s o f i n t e r p e r s o n a l r e l a t i o n s h i p s . In S. Cohen, & S. L . Syme ( E d s . ) , S o c i a l Support and H e a l t h (pp. 61-82) . New Y o r k : Academic . 182 Young, M. N . (1987). T a l e w o r l d s and s t o r y r e a l i t i s . D o r d r e c h t , The N e t h e r l a n d s : M a r t i n u s N i j h o f f P u b l i s h e r s . Z a r i t , S. H . (1980). A g i n g and mental d i s o r d e r s . New Y o r k : Spectrum. 183 i A P P E N D I C E S APPENDIX A RECRUITMENT NOTICE RECRUITMENT NOTICE PARTICIPANT RECRUITMENT NOTICE FOR YOUNG ADULTS WITH CROHN'S DISEASE OR COLITIS Young a d u l t s a r e needed f o r a r e s e a r c h p r o j e c t on the n a t u r e o f l i f e e x p e r i e n c e s of. young a d u l t s w i t h C r o h n ' s d i s e a s e or c o l i t i s . P a r t i c i p a t i o n i n v o l v e s two i n t e r v i e w s o f up t o one hour and a h a l f . I f you a r e i n t e r e s t e d i n v o l u n t e e r i n g a n d / o r would l i k e f u r t h e r i n f o r m a t i o n p l e a s e phone: Glenn Matthes a t 879-7790 Department o f C o u n s e l l i n g P s y c h o l o g y U n i v e r s i t y of B r i t i s h Columbia S u p e r v i s e d by: D r . R i c h a r d Young 186 . APPENDIX B O r i e n t a t i o n t o the W r i t t e n N a r r a t i v e O r i e n t a t i o n t o the W r i t t e n N a r r a t i v e The o r i e n t a t i o n t o the n a r r a t i v e w i l l now be d e s c r i b e d i n g e n e r a l form: As a f o l l o w up t o our c o n v e r s a t i o n over the phone h e r e i s a s h o r t o r i e n t a t i o n t o the w r i t t e n s t o r y p a r t o f y o u r p a r t i c i p a t i o n i n t h i s s t u d y . T h i s p a r t i n v o l v e s w r i t i n g a c o m p o s i t i o n about your e x p e r i e n c e s w i t h h a v i n g C r o h n ' s d i s e a s e ( c o l i t i s ) . T h i s c o m p o s i t i o n i s l i k e your l i f e s t o r y o r a u t o b i o g r a p h y . T h i s s t o r y i s l i k e a summary o f y o u r e x p e r i e n c e s i n the o r d e r i n which they o c c u r r e d . I t i n v o l v e s d e s c r i b i n g i n c i d e n t s and events which you f e e l were i m p o r t a n t o r c r i t i c a l i n your l i f e . A l l i n f o r m a t i o n from the s t o r y w i l l be t r e a t e d c o n f i d e n t i a l l y and be used f o r r e s e a r c h purposes o n l y . You o n l y have t o w r i t e as much as you f e e l you want t o . I f t h e r e a r e any q u e s t i o n s o r concerns you have r e g a r d i n g t h e w r i t t e n n a r r a t i v e p l e a s e f e e l f r e e t o phone me. Here i s a b o o k l e t o f b l a n k paper you can w r i t e your s t o r y i n . P l e a s e b r i n g your comple ted s t o r y t o our i n t e r v i e w appointment . Once a g a i n , t h a n k - y o u f o r your p a r t i c i p a t i o n . APPENDIX C I n t r o d u c t i o n t o the I n t e r v i e w The i n t r o d u c t i o n a t the v e r y s t a r t o f the i n t e r v i e w w i l l now be d e s c r i b e d i n g e n e r a l form: Thank you (name of p a r t i c i p a n t ) f o r v o l u n t e e r i n g t o p a r t i c i p a t e i n t h i s s t u d y . I know I spoke t o you a b i t b e f o r e about the n a t u r e o f t h i s s tudy and i t s p u r p o s e , but I would l i k e t o b r i e f l y go over some o f t h a t i n f o r m a t i o n a g a i n t o h e l p make i t c l e a r e r . I f you have any q u e s t i o n s about the r e s e a r c h p l e a s e f e e l f r e e t o ask them. T h i s s t u d y i s b e i n g conduc ted as p a r t o f the requ irements f o r my masters degree i n C o u n s e l l i n g P s y c h o l o g y . D r . R i c h a r d Young from t h e C o u n s e l l i n g department i s my s u p e r v i s o r . I am t r y i n g t o f i n d out what i t i s l i k e f o r a p e r s o n i n y o u r age group t o have t o d e a l w i t h C r o h n ' s d i s e a s e o r c o l i t i s . Because we a l l l i v e i n d i f f e r e n t ways, one p e r s o n ' s way o f d e a l i n g w i t h l i v i n g w i t h a d i s e a s e can o f t e n be q u i t e d i f f e r e n t t h a n another p e r s o n ' s way and I ' d l i k e t o know how y o u ' v e been a b l e t o l i v e w i t h your d i s e a s e . The i n f o r m a t i o n from t h e s e i n t e r v i e w s w i l l h e l p me u n d ers t an d how p e o p l e i n y o u r age group e x p e r i e n c e d e a l i n g w i t h C r o h n ' s d i s e a s e o r c o l i t i s which i n t u r n may l e a d t o b e t t e r ways o f a s s i s t i n g young a d u l t s i n t h e i r s t r u g g l e t o adapt t o t h e i r d i s e a s e . W i t h y o u r p e r m i s s i o n , I would l i k e t o use a t a p e - r e c o r d e r t o t a p e your s t o r y so t h a t I can c o n c e n t r a t e on l i s t e n i n g t o you now w i t h o u t h a v i n g t o i n t e r r u p t you t o r e p e a t something t h a t I would l i k e t o w r i t e down. The tape w i l l be t r a n s c r i b e d but any i n f o r m a t i o n t h a t may i d e n t i f y who you a r e , such as your name, w i l l not be u s e d . A l l i n f o r m a t i o n t h a t you g i v e me w i l l be t r e a t e d c o n f i d e n t i a l l y and be used o n l y f o r r e s e a r c h p u r p o s e s . You may s top your p a r t i c i p a t i o n i n t h i s i n t e r v i e w a t any t i m e . A t t h i s t ime I would l i k e you t o t a k e a l o o k a t t h i s p e r m i s s i o n form (hand t o p a r t i c i p a n t ) . P l e a s e r e a d i t c o m p l e t e l y and f e e l f r e e t o ask any q u e s t i o n s b e f o r e s i g n i n g i t . B e f o r e we b e g i n , a r e t h e r e any q u e s t i o n s o r concerns t h a t I h a v e n ' t addressed? (pause) To b e g i n , perhaps you c o u l d t e l l me a b i t about when you were d i a g n o s e d as h a v i n g [ p a r t i c i p a n t s s p e c i f i c d i s e a s e ( i e . C r o h n ' s o r c o l i t i s ) ] . APPENDIX D CONSENT FORM UNIVERSITY OF BRITISH COLUMBIA The L i f e E x p e r i e n c e s o f People With a C h r o n i c I l l n e s s : A n a l y s e s o f C r o h n ' s D i sease and C o l i t i s Consent Form I , , consent t o my p a r t i c i p a t i o n i n a r e s e a r c h p r o j e c t r e g a r d i n g my e x p e r i e n c e s d e a l i n g w i t h a c h r o n i c i l l n e s s . T h i s p r o j e c t i s b e i n g conduc ted by Glenn Matthes (Ph. #. 879-7790) a g r a d u a t e s t u d e n t o f t h e U n i v e r s i t y o f B r i t i s h C o l u m b i a ' s C o u n s e l l i n g P s y c h o l o g y program f o r h i s Mas ters t h e s i s . He i s b e i n g a d v i s e d by R i c h a r d A . Young E d . D , whom I may c o n t a c t a t 822- 6380. The purpose o f t h i s s tudy i s t o examine how p e o p l e make sense o f t h e i n f l u e n c e s C r o h n ' s d i s e a s e o r c o l i t i s has had on t h e i r l i v e s . In t h i s s tudy the r e s e a r c h e r p l a n s t o i n v e s t i g a t e i n d i v i d u a l s ' p e r c e p t i o n s o f , r e sponses t o , and management o f the l i f e e x p e r i e n c e o f l i v i n g w i t h an i l l n e s s . The v a l u e o f t h i s s tudy w i l l be i n u n d e r s t a n d i n g my e x p e r i e n c e o f c o p i n g w i t h c h r o n i c i l l n e s s from my own p e r s p e c t i v e . I am aware t h a t my p a r t i c i p a t i o n w i l l i n v o l v e p a r t i c i p a t i n g i n an aud io taped i n t e r v i e w . The i n t e r v i e w w i l l l a s t up t o two h o u r s . None o f the da ta i n c l u d i n g the a u d i o t a p e w i l l be a v a i l a b l e t o any persons o t h e r than the r e s e a r c h e r and t h e r e s e a r c h e r ' s s u p e r v i s o r . I unders tand t h a t my p a r t i c i p a t i o n i n t h i s r e s e a r c h i s v o l u n t a r y and may be t e r m i n a t e d a t any t i m e . I may r e f u s e t o answer any p a r t i c u l a r q u e s t i o n s . S h o u l d I have any q u e s t i o n s about the p r o c e d u r e s , I may ask them a t any t i m e . I a l s o acknowledge r e c e i p t o f a copy o f t h i s consent f o r m . Date:_ S i g n e d : A d d r e s s : Ph . #: APPENDIX E DEMOGRAPHIC QUESTIONNAIRE 194 The L i f e E x p e r i e n c e s o f Young A d u l t s With a C h r o n i c I l l n e s s : An A n a l y s e s o f C r o h n ' s D i s e a s e and C o l i t i s Demographic Q u e s t i o n n a i r e P r i n c i p a l I n v e s t i g a t o r : Glenn Matthes U n i v e r s i t y o f B r i t i s h Co lumbia 879-7790 Note : T h i s form i s t o be completed by the p a r t i c i p a n t i n the presence o f the r e s e a r c h e r a t the b e g i n n i n g o f the r e s e a r c h p r o c e d u r e s . P r o j e c t No. Sex: Male Female Age: What s p e c i f i c i l l n e s s do you h a v e ? : C r o h n ' s D i s e a s e C o l i t i s Year and month d i s e a s e was d iagnosed: A r e you r e c e i v i n g any type o f t rea tment f o r your i l l n e s s a t the p r e s e n t t i m e ? : Yes No I f y e s , what t y p e o f t reatment are you r e c e i v i n g ? : Have you ever had s u r g e r y f o r your i l l n e s s ? : Yes No I f y e s , what t y p e o f s u r g e r y d i d you have done?: How would you d e s c r i b e your h e a l t h a t the p r e s e n t t i m e ? : V e r y 1 2 3 4 5 V e r y Good I I Bad I s t h e r e any o t h e r i n f o r m a t i o n you f e e l the r e s e a r c h e r s h o u l d be aware o f b e f o r e the p r o c e d u r e s beg in? I f y e s , p l e a s e p r o v i d e i t h e r e : 195 APPENDIX F Sample Interview Questions I 'm wonder ing i f C r o h n ' s d i s e a s e (or c o l i t i s ) has had any i n f l u e n c e on your l i f e . - What i s i t r e a l l y l i k e h a v i n g a c h r o n i c i l l n e s s ? - Do c e r t a i n p e o p l e i n your l i f e p l a y a p a r t i n y o u r d e a l i n g w i t h the d i s e a s e ? - Do c e r t a i n p l a c e s p l a y a p a r t i n your d e a l i n g w i t h t h e d i s e a s e ? - A r e t h e r e any o t h e r t h i n g s t h a t p l a y a p a r t i n y o u r d e a l i n g w i t h the d i s e a s e ? I 'm wonder ing how you have responded t o h a v i n g an i l l n e s s . - How have you d e a l t l i v i n g w i t h a c h r o n i c i l l n e s s ? What do you t h i n k causes C r o h n ' s d i s e a s e o r ( c o l i t i s ) ? When was your c h r o n i c i l l n e s s d iagnosed? - I 'm wondering i f you t h i n k your emotions o r p e r s o n a l i t y caused your i l l n e s s i n any way. - Do you t h i n k c o u n s e l l i n g would be o f any b e n e f i t i n h e l p i n g you t o d e a l w i t h your d i s e a s e ? - Do you t h i n k c o u n s e l l i n g would have any e f f e c t on the b o d i l y symptoms o f your d i s e a s e ? I 'm wonder ing how you have at tempted po d e a l w i t h your i l l n e s s . - Have you had t o change your b e h a v i o u r i n any way s i n c e d e v e l o p i n g your i l l n e s s ? - D i d you have any f u t u r e p l a n s t h a t you f e l t you had t o a l t e r because o f your i l l n e s s ? - I 'm wondering i f you have ever had t o a l t e r y o u r a c t i v i t i e s because o f your d i s e a s e . 197 - Has your l i f e changed i n anyway because o f y o u r i l l n e s s ? Have you ever sought h e l p from o t h e r s (apar t from y o u r d o c t o r ) i n d e a l i n g w i t h your i l l n e s s ? I 'm wonder ing i f you t h i n k your age e f f e c t s how you d e a l w i t h your d i s e a s e . - Has h a v i n g a c h r o n i c i l l n e s s changed your s o c i a l l i f e i n any way? - Has h a v i n g your i l l n e s s changed the way you v iew your body?

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