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Successful healing pathways towards recovery from chronic fatigue syndrome Hill, Delcie Ella Carita 1996

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S U C C E S S F U L H E A L I N G PATHWAYS TOWARDS R E C O V E R Y FROM C H R O N I C F A T I G U E SYNDROME b y D E L C I E E L L A C A R I T A H I L L B . S . N . 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 , 1964 A T H E S I S S U B M I T T E D I N P A R T I A L F U L F I L M E N T OF T H E R E Q U I R E M E N T S FOR T H E D E G R E E OF M A S T E R I N T H E S C I E N C E OF N U R S I N G i n T H E F A C U L T Y OF G R A D U A T E S T U D I E S S c h o o l o f N u r s i n g We a c c e p t t h i s t h e s i s a s c o n f o r m i n g t o t h e r e q u i r e d s t a n d a r d 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 A u g u s t , 1996 © D e l c i e E l l a C a r i t a H i l l , 1996 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. 5oA ©epartment of h3 U i" r /' 1 <s=> The University of British Columbia Vancouver, Canada Date ah 9-6 DE-6 (2/88) 11 ABSTRACT Chronic fatigue syndrome (CFS) i s an i l l u s i v e i l l n e s s which i s characterized by fatigue and a va r i e t y of unpredictable and i n d i v i d u a l l y experienced symptoms. Although medical research has focused on the cause and a cure f o r the i l l n e s s , the cause remains speculative, there i s no diagnostic marker, there i s no cure, and there i s no sing l e treatment or healing regime that i s successful for everyone. Most persons who have CFS struggle through a maze of t r i a l and error healing approaches i n an attempt to f i n d recovery.. To date, nurses have played a l i m i t e d r o l e i n the health care of persons who have CFS. The purpose of t h i s q u a l i t a t i v e study was to increase knowledge and understanding about successful healing pathways towards recovery from CFS. This inquiry was conducted i n the c o n s t r u c t i v i s t ( n a t u r a l i s t i c ) paradigm using an hermeneutic d i a l e c t i c data gathering process, and constant comparative analysis. Through several rounds of open discussion with eleven s e l f s e l e c t i n g p a r t i c i p a n t s (three male and eight female), the researcher developed a consensual construction of successful healing pathways towards recovery from CFS. Successful recovery from CFS involved changing the person's r e l a t i o n s h i p with CFS from one i n which the i l l n e s s i n i t i a l l y predominated the foreground of the person's l i f e , to one i n which the i l l n e s s was i n the background. This change was accomplished through three Relational Processes: Legitimizing, Putting the I l l n e s s i n i t s Place, and Redefining Healthy S e l f . Internal Legitimizing was found to be mandatory. Putting the I l l n e s s i n i t s Place required each i n d i v i d u a l to engage i n a unique physical and soul healing program, and to negotiate the c r i t i c a l balance. Redefining Healthy Self required the person to adopt a l i f e s t y l e which was d i f f e r e n t from h i s or her p r e - i l l n e s s condition, but which was generally perceived as desirable. Movement i n changing the r e l a t i o n s h i p was powered by the Moving On or Blank Wall outcomes of Choice Making. A person's healing journey through the CFS maze could be improved and made easier with the help of a knowledgeable health care worker. The researcher believes that the findings of t h i s study can increase nurses' knowledge and understanding of the CFS healing journey i n order to care f o r persons who have CFS. i i i TABLE OF CONTENTS Page Abstract i i Table of Contents i i i L i s t of Tables v i L i s t of Figures v i i Acknowledgement v i i i Chapter One: Problem, Purpose, & Background Information 1 The Problem 2 The Purpose 2 The Research Questions 3 Background Information 3 Case D e f i n i t i o n 4 Epidemiology 6 The Sig n i f i c a n c e to Nursing 7 De f i n i t i o n s & Assumptions 8 De f i n i t i o n s Pertaining to the Study 8 Assumptions 9 Chapter Two: L i t e r a t u r e Review 11 E t i o l o g i c a l Studies , 11 V i r a l Hypotheses 11 Immune System Hypotheses 12 Multicausal Theories 13 Limbic Encephalopathy: Psychoneuroimmunology 13 Pathways Towards Recovery 15 T r a d i t i o n a l Medical Perspectives 16 Symptomatic Pharmacological Treatments 16 Immune System Boosters & A n t i v i r a l Agents 17 Complementary and Alte r n a t i v e Perspectives 18 Naturopathic Medicine 19 Mind-Body Healing ... 21 Self-Help Approaches 24 Support Groups 24 Self-Help Books 25 Nursing Perspective 27 In Summary 30 Chapter Three: Paradigm & Methods 31 Philosophical Paradigm 31 Methods 34 The Hermeneutic D i a l e c t i c Process 35 Participant Selection C r i t e r i a & Recruitment 38 Selection C r i t e r i a 38 Recruitment 39 Demographics 40 The Researcher-Participant Relationship 41 Data C o l l e c t i o n 42 i v P a g e A n a l y s i s : C o n s t a n t C o m p a r a t i v e M e t h o d 46 U n i t i z i n g 49 C a t e g o r i z i n g & C o n c e p t u a l D e v e l o p m e n t 50 T r u s t w o r t h i n e s s 53 E t h i c a l C o n s i d e r a t i o n s 55 C h a p t e r F o u r : T h e F i n d i n g s 59 O v e r v i e w 59 R e c o v e r y 66 C h o i c e M a k i n g 73 O r i g i n o f C h o i c e M a k i n g 78 I n f o r m a t i o n 78 B e l i e f s 83 M o t i v a t i o n ( b a s e d o n e s t e e m n e e d s ) 86 O u t c o m e o f C h o i c e M a k i n g 90 A n E x a m p l e 95 T h e T h r e e R e l a t i o n a l P r o c e s s e s 97 O v e r v i e w 98 L e g i t i m i z i n g 102 B e i n g B e l i e v e d & B e i n g D i a g n o s e d 107 U n d e r s t a n d i n g & A c c e p t i n g 109 P u t t i n g t h e I l l n e s s i n I t s P l a c e 111 H e a l i n g o f t h e B o d y , M i n d , & S p i r i t 114 P h y s i c a l H e a l i n g 116 S o u l H e a l i n g 120 N e g o t i a t i n g t h e C r i t i c a l B a l a n c e 123 L i s t e n i n g t o My B o d y 124 L e a r n i n g L i m i t s 125 R e d e f i n i n g H e a l t h y S e l f 127 A c c e p t i n g a New L i f e s t y l e 131 A c c e p t i n g C F S a s a B a c k g r o u n d H a b i t a n t 132 R e s e a r c h - S u m m a r y 134 C h a p t e r F i v e : D i s c u s s i o n , I m p l i c a t i o n s , & L i m i t a t i o n s 138 L i t e r a t u r e C o m p a r i s o n 138 R e s e a r c h B a s e d i n T r a d i t i o n a l M e d i c i n e & N a t u r o p a t h y . . . . 138 R e s e a r c h I n v o l v i n g N u r s e s 141 A n A n e c d o t a l A c c o u n t 142 C h r o n i c I l l n e s s R e s e a r c h 144 M i n d - B o d y R e s e a r c h 147 S o c i o l o g i c a l R e s e a r c h 152 S i c k R o l e - P a t i e n t R o l e 153 H e a l t h B e l i e f M o d e l s 156 I m p l i c a t i o n s & R e c o m m e n d a t i o n s f o r N u r s i n g 157 I m p l i c a t i o n s f o r N u r s i n g P r a c t i c e 158 I m p l i c a t i o n s f o r N u r s i n g E d u c a t i o n 162 I m p l i c a t i o n s f o r N u r s i n g R e s e a r c h 163 L i m i t a t i o n s 164 V Page Conclusions 165 Reference 168 Appendix A: Information Letter 180 Appendix B: Informed Consent Form 183 Appendix C: Summary Report for Pa r t i c i p a n t Feedback 186 Appendix D : My B e l i e f s About Chronic Fatigue Syndrome 195 v i LIST OF TABLES Page Table 1 : Summary of Demographical Data 41 v i i LIST OF FIGURES Page Figure 1: The three Relational Processes and their goals 63 Figure 2: The Choice Making process 64 Figure 3: Diagram displaying the construction: Healing pathways towards recovery from CFS 65 Figure 4: Diagram displaying recovered and cured as end points on separate pathways 66 V l l l ACKNOWLEDGEMENTS This report i s dedicated to the eleven p a r t i c i p a n t s whose s t o r i e s informed me i n developing the construction: successful healing pathways towards recovery from CFS: Florence Annette Don A l l a n David E i l e e n Helene Rachel Raine Susan Monica I would l i k e to express my sincere appreciation to the members of my thesis committee who have provided wisdom and council throughout the inquiry process: Dr. Carole Robinson, Ms. France B o u t h i l l e t t e , and Dr. Ann H i l t o n . I would also l i k e to express my appreciation to my f r i e n d and colleague, Joan Bassett-Smith, who has e n t h u s i a s t i c a l l y provided me with support, encouragement, information, and much needed breaks. Delcie H i l l 1 CHAPTER ONE PROBLEM, PURPOSE, AND BACKGROUND INFORMATION The s t u d y d e s c r i b e d i n t h i s r e p o r t was c o n d u c t e d i n t h e c o n s t r u c t i v i s t ( n a t u r a l i s t i c ) paradigm, u s i n g an h e r m e n e u t i c d i a l e c t i c d a t a g a t h e r i n g p r o c e s s and c o n s t a n t c o m p a r a t i v e d a t a a n a l y s i s method. The f o c u s o f i n q u i r y i n t h i s s t u d y was t h e h e a l i n g pathways o f p e r s o n s who had been m e d i c a l l y d i a g n o s e d w i t h c h r o n i c f a t i g u e syndrome (CFS), and who p e r c e i v e d t h e y were r e c o v e r i n g . CFS i s an i l l u s i v e i l l n e s s w h i c h i s c h a r a c t e r i z e d by d e b i l i t a t i n g f a t i g u e and a v a r i e t y o f u n p r e d i c t a b l e and i n d i v i d u a l l y e x p e r i e n c e d symptoms. There i s no known cause f o r CFS, and t h e r e i s no known c u r e . D e s p i t e t h e p e r s i s t e n t , i n c a p a c i t a t i n g symptoms e x p e r i e n c e d by p e r s o n s who have CFS, r o u t i n e d i a g n o s t i c t e s t s t y p i c a l l y f a i l t o c o n f i r m any d i a g n o s i s . I n an att e m p t t o m e d i c a l l y a u t h e n t i c i z e t h e i r i l l n e s s e x p e r i e n c e , most p e r s o n s who have CFS go t h r o u g h a l o n g , f r u s t r a t i n g , and f r e q u e n t l y h u m i l i a t i n g p r o c e s s o f s e e k i n g h e l p from b a f f l e d h e a l t h c a r e p r o f e s s i o n a l s . P e r s o n s e x p e r i e n c i n g CFS g e n e r a l l y t r y numerous m e d i c a l , a l t e r n a t i v e , and s e l f - h e l p a p p r o a c h e s . Some i n d i v i d u a l s r e m a i n d i s a b l e d f o r many y e a r s , even a f t e r u s i n g numerous t h e r a p i e s . Some r e c o v e r . I n t h i s s t u d y , r e c o v e r y was d e f i n e d as " r e - e s t a b l i s h i n g a sense o f e q u i l i b r i u m , c o n t r o l , harmony, q u a l i t y [ o f ] l i f e , . . . a n d s a t i s f a c t o r y l e v e l o f f u n c t i o n i n g " ( C o l l i n g e , 1 9 9 3 , pp. 3 2 - 3 3 ) as i d e n t i f i e d by t h e i n d i v i d u a l . R e c o v e r y has two p a r t s : t h e p r o c e s s o f " r e c o v e r i n g " , and t h e i n d i v i d u a l l y p e r c e i v e d h e a l t h y end s t a t e o f " r e c o v e r e d " . R e c o v e r y was d i s t i n g u i s h e d from c u r e , w h i c h r e f e r r e d t o t h e s u c c e s s f u l t r e a t m e n t o f t h e agent r e s p o n s i b l e f o r a d i s e a s e , t h u s r e t u r n i n g t h e p e r s o n t o a p r e - i l l n e s s h e a l t h s t a t e . I n t h i s c h a p t e r t h e r e a d e r w i l l be i n t r o d u c e d t o t h e prob l e m w h i c h i n i t i a t e d t h i s r e s e a r c h i n q u i r y , t h e purpose o f t h e s t u d y , t h e s p e c i f i c research questions investigated, some background information about CFS, the case d e f i n i t i o n , an overview of the epidemiology, and the s i g n i f i c a n c e of t h i s research to nursing. The Problem The healing needs of persons experiencing CFS have r a r e l y been f u l l y met by t r a d i t i o n a l medicine alone, a point repeatedly v e r i f i e d by research and anecdotal accounts. In t h i s inquiry, healing r e f e r s to i n t e r n a l l y or exte r n a l l y i n i t i a t e d phenomena which f a c i l i t a t e the body's i n t e r n a l , natural tendency towards homeostasis. It r e f e r s to those ways i n which the h o l i s t i c a l l y perceived person i s enabled i n reconstruction, repair, and recuperation (Cousins, 1989; Laidlaw, Malmo, 1990; Selby, 1991; Starck, 1991). An abundance of s e l f - h e l p l i t e r a t u r e a t t e s t s to the fact that persons experiencing CFS are searching for and t r y i n g complementary and a l t e r n a t i v e approaches for healing and for managing t h e i r i l l n e s s . A d d i t i o n a l l y , " I t should be noted...that some [persons who have CFS] get better a l l by themselves" (Goodpasture, 1993a, p. 9)". Despite the fact that nurses, i n t h e i r numerous "workplaces, frequently encounter persons who have CFS, nursing pr a c t i c e has l i m i t e d s p e c i f i c knowledge which provides d i r e c t i o n for helping such c l i e n t s to work towards recovery. Seeking that knowledge was the i n i t i a l focus of t h i s study. The aim of t h i s study was to develop knowledge about the healing pathways used by persons medically diagnosed with CFS, and who perceived they were working su c c e s s f u l l y towards recovery. The Purpose The purpose of t h i s research inquiry was to increase knowledge and understanding about successful pathways of healing towards recovery from 3 CFS. The knowledge that w i l l be developed i s intended to benefit persons experiencing CFS, t h e i r f a m i l i e s , and health care workers. The Research Questions The questions which interested the researcher were: "How do persons who have been medically diagnosed with CFS work suc c e s s f u l l y towards recovery? What healing pathways do they use?" Lincoln and Guba (1985) advise that i n keeping with c o n s t r u c t i v i s t ( n a t u r a l i s t i c ) inquiry "the focus may very well change" (p. 224) as the study unfolds. In t h i s study, the stated focus of inquiry d i d not change. However, the researcher's perceptions of the focus did. I n i t i a l l y , she held a narrower view of the meaning of what recovery pathways might e n t a i l . When i n i t i a t i n g t h i s study, she envisioned a focus on healing modalities. As the construction unfolded, the pathways to recovery proved to be a much broader construct: the persons' r e l a t i o n s h i p with CFS. Since the p a r t i c i p a n t s of t h i s study used healing pathways and recovery pathways to r e f e r to the same concept, these terms w i l l be used interchangeably i n t h i s report. In the next three sections, some background information, the case d e f i n i t i o n of (GFS (and i t s h i s t o r y ) , and an overview of the epidemiology w i l l be presented i n order to further orient the reader to t h i s study. Background Information Chronic fatigue syndrome i s one of many labels given an i l l u s i v e i l l n e s s which i s characterized by d e b i l i t a t i n g fatigue and by a v a r i e t y of unpredictable and i n d i v i d u a l l y experienced symptoms which may include: sore throat, fever, fibromyalgia, a r t h r a l g i a , g a s t r o i n t e s t i n a l upset, adenopathy, dyslogia, paralogia, cognitive dysfunction ("mind fog", headache, s e n s i t i v i t y to l i g h t ) , sleep disorders, v e s t i b u l a r disorders, exercise intolerance, depression, alcohol intolerance, sexual dysfunction, 4 a n d h y p e r s e n s i t i v i t y . E x c e p t f o r f a t i g u e , w h i c h i s c o n s i d e r e d t o b e e x p e r i e n c e d t o s o m e d e g r e e b y 100% o f p e r s o n s w i t h C F S , t h e o t h e r s i g n s a n d s y m p t o m s v a r y , a n d wax a n d w a n e t h r o u g h o u t t h e i l l n e s s . A p p r o x i m a t e l y 85 p e r c e n t ( K o m a r o f f , 1 9 9 1 , p . 2 5 ) o f p e r s o n s who h a v e C F S r e p o r t a s u d d e n o n s e t o f f l u - l i k e s y m p t o m s w h i c h p e r s i s t w e l l b e y o n d t h e e x p e c t e d c o u r s e o f a n o r d i n a r y v i r a l d i s e a s e . Some p e r s o n s d i a g n o s e d w i t h C F S r e p o r t t h a t i l l n e s s c o m m e n c e d w i t h a p h y s i c a l , e m o t i o n a l , o r m i c r o b i a l t r a u m a t o t h e b o d y . T h e r e i s n o i d e n t i f i e d c a u s e . T h e r e i s n o l a b o r a t o r y - b a s e d t e s t w h i c h c a n o b j e c t i v e l y d i a g n o s e C F S ; n o c u r e i s k n o w n . H o w e v e r , s o m e p h y s i c i a n s a n d s o m e p e r s o n s e x p e r i e n c i n g C F S r e p o r t r e c o v e r y t o a f u n c t i o n a l d e g r e e i n p e r i o d s v a r y i n g f r o m o n e t o 13 y e a r s . C F S i s n o t k n o w n t o b e p r o g r e s s i v e o r f a t a l ( B e l l , 1 9 9 3 ; B e r n e , 1 9 9 2 ; B l a k e , 1 9 9 3 a ; C o l l i n g e , 1 9 9 3 ; F e i d e n , 1 9 9 0 ; G o l d s t e i n , 1992 & 1 9 9 3 a ; G o o d p a s t u r e , 1 9 9 3 a ; H y d e & J a i n , 1 9 9 2 ; J o n c a s , 1 9 9 1 a ; K o m a r o f f , 1 9 9 1 ; M i l d o n , 1 9 9 1 ; S t r a u s , 1 9 8 8 ) . C a s e D e f i n i t i o n T h i s " d i s e a s e o f a t h o u s a n d n a m e s " ( P a r i s h , B e l l , H y d e & R u b i n s t e i n , 1 9 9 2 , p . 3 ) h a s , b e e n k n o w n b y a v a r i e t y o f l a b e l s i n c l u d i n g : m y a l g i c e n c e p h a l o m y e l i t i s ( B r i t i s h , A u s t r a l i a n , a n d C a n a d i a n r e s e a r c h e r s who p e r c e i v e b r a i n , m u s c l e , a n d n e r v o u s s y s t e m i m p l i c a t i o n s ) , F l o r e n c e N i g h t i n g a l e d i s e a s e ( F l o r e n c e e x h i b i t e d s y m p t o m s o f C F S a f t e r h e r e x h a u s t i v e w o r k i n t h e C r i m e a ) , Y u p p i e f l u ( n a m e d a f t e r a f f l u e n t , a m b i t i o u s y o u n g p r o f e s s i o n a l s who t e n d e d t o b e c o m e i l l w i t h C F S ) , c h r o n i c f a t i g u e a n d immune d y s f u n c t i o n s y n d r o m e ( t o m o r e a c c u r a t e l y r e f l e c t t h e p e r c e i v e d n a t u r e o f t h e d i s e a s e ) , c h r o n i c m o n o n u c l e o s i s ( b e c a u s e many p e r c e i v e d t h a t t h e i n d i v i d u a l n e v e r r e c o v e r e d f r o m a n a c u t e e p i s o d e ) , a n d c h r o n i c E p s t e i n -B a r r v i r u s s y n d r o m e ( b a s e d o n o n e h y p o t h e s i z e d c a u s e , B l a k e , 1 9 9 3 a ; F e i d e n , 1 9 9 0 ; H y d e , 1 9 9 2 ; M a k e l a , 1 9 9 4 ) . 5 I n 1 9 8 8 , t h e A m e r i c a n C e n t r e f o r D i s e a s e C o n t r o l ( C D C ) c h o s e t h e l a b e l " c h r o n i c f a t i g u e s y n d r o m e " a n d ( t o a d e g r e e ) l e g i t i m i z e d t h e c o n d i t i o n ' s e x i s t e n c e b y e s t a b l i s h i n g " c e r t a i n t e n t a t i v e c r i t e r i a f o r a d i a g n o s i s " ( C o l l i n g e , 1 9 9 3 , p . 2 3 ) . T h o s e c r i t e r i a i n c l u d e d : p e r s i s t e n t o r r e l a p s i n g , d e b i l i t a t i n g f a t i g u e f o r a p e r i o d o f a t l e a s t 6 m o n t h s , p r e s e n c e o f a m i n i m a l n u m b e r e a c h o f s p e c i f i e d s u b j e c t i v e a n d p h y s i c a l c r i t e r i a , a b s e n c e o f c o n d i t i o n s w h i c h may p r o d u c e s i m i l a r s y m p t o m s , a n d e x c l u s i o n o f p e r s o n s w i t h p r e - e x i s t i n g p s y c h i a t r i c d i a g n o s i s ( H o l m e s e t a l . , 1 9 9 2 ) . T h e l a b e l , " c h r o n i c f a t i g u e s y n d r o m e " , t e n d s t o m i s r e p r e s e n t t h e c h a l l e n g i n g e x p e r i e n c e o f p e r s o n s e x p e r i e n c i n g C F S , a n d " m o s t [ p e r s o n s d i a g n o s e d w i t h C F S ] f e e l i t t r i v i a l i z e s t h e i l l n e s s " ( F r e i d e n , 1 9 9 0 , p . 9 ) . A l t h o u g h t h e CDC C F S R e s e a r c h G r o u p ( 1 9 9 2 ) a c k n o w l e d g e d t h a t t h e " c a s e d e f i n i t i o n was d e s i g n e d f o r p u r p o s e s o f c o n d u c t i n g r e s e a r c h a n d n o t f o r c l i n i c a l d i a g n o s i s o f C F S " ( p . 5 0 ) , t h e CDC c r i t e r i a c o n t i n u e t o g u i d e p h y s i c i a n s a n d s o c i e t y i n d i a g n o s i n g a n d l e g i t i m i z i n g t h e i l l n e s s . I n t h e a b s e n c e o f a n y c o n c l u s i v e d i a g n o s t i c t e s t , b o t h h e a l t h c a r e p r o f e s s i o n a l s a n d p e r s o n s e x p e r i e n c i n g C F S s y m p t o m s a r e f r u s t r a t e d b y t h e l i m i t a t i o n s a n d t h e " r u l e - o u t " ' n a t u r e o f t h e CDC c r i t e r i a ( B l a k e , 1 9 9 3 a & 1 9 9 3 b ; K e n n y , 1 9 9 4 ; L o p i s , 1 9 9 1 ) . When o b j e c t i v e l y v e r i f i a b l e m e d i c a l c o n d i t i o n s a r e r u l e d o u t ( a s r e q u i r e d b y t h e CDC c a s e d e f i n i t i o n ) , t h e r e i s a t e n d e n c y t o q u e s t i o n w h e t h e r t h e c l i e n t ' s i l l n e s s e x p e r i e n c e i s " r e a l " ( B l a k e , 1 9 9 3 b ; K e n n y , 1 9 9 4 ; L o p i s , 1 9 9 1 ; W a l m s l e y , 1 9 9 3 ) . F o r p e r s o n s l i v i n g w i t h C F S , t h e i l l n e s s e x p e r i e n c e i s e x c r u c i a t i n g l y r e a l a n d d e b i l i t a t i n g - a t t i m e s t o t h e d e g r e e t h a t t h e p e r s o n i s u n a b l e t o c a r r y o u t a c t i v i t i e s o f d a i l y l i v i n g ( B l a k e , 1 9 9 3 b ; D u f f , 1 9 9 3 ; K e n n y , 1 9 9 4 ) . T h e n e x t s e c t i o n p r e s e n t s a n o v e r v i e w o f t h e r e c o r d e d i n c i d e n c e a n d p r e v a l e n c e o f C F S . 6 Epidemiology CFS has been diagnosed around the c i v i l i z e d world, i n a l l age groups, i n a l l s o c i a l classes, and i n both sexes. S t a t i s t i c i a n s state that CFS i s most prevalent i n Caucasian, middle c l a s s , high energy, hard working, professional women between the age of 20 to 50 years with a median age of 36 years (Blake, 1993a; B l o n d e l - H i l l & Shafran, 1993; Feiden, 1990; Goodpasture, 1993a; Komaroff, 1989). Several members of an extended family may have CFS, however, most cases are sporadic: that i s , most persons diagnosed with CFS do not have a close contact who also has the i l l n e s s (Feiden, 1990; Goodpasture, 1993a). More than 60 geographical epidemics were i d e n t i f i e d i n 15 countries from 1934 to 1986 (Briggs & Levine, 1994; Hyde, 1992; Levine, 1994). It i s of i n t e r e s t to note that no CFS epidemics have been reported since the 1988 CDC d e f i n i t i o n was established, r a i s i n g question to the v a l i d i t y of previous reports. Rel i a b l e prevalence and incidence rates of CFS are d i f f i c u l t to e s t a b l i s h because of the inconsistent d e f i n i t i o n c r i t e r i a used, the "rule out" nature of the CDC d e f i n i t i o n , and the inconsistency of" persons who have CFS symptoms i n seeking medical care. P r i o r to 1988 , great d i v e r s i t y was seen i n the c r i t e r i a used to diagnose CFS (by whatever l a b e l ) . For example, i n a review of CFS studies that d i d not use the CDC d e f i n i t i o n , Klonoff (1992) found reported prevalence rates of 3, 37, 51, 127, and 130 per 100,000 population. Since the 1988 CDC CFS case d e f i n i t i o n (Holmes et a l . , 1992), increased e f f o r t towards i n t e r n a t i o n a l diagnostic consistency has been made (Bates et a l . , 1994). Nevertheless, at t h i s time, reported prevalence rates are of questionable v a l i d i t y , as i s indicated below. In an ongoing s u r v e i l l a n c e system for i d e n t i f y i n g the prevalence of 7 CFS i n the United States, the CDC CFS Research Group (1992) reported preliminary rates of 5.6 per 100,000 population (p. 51). They acknowledged that " t h i s i s c l e a r l y a minimum estimate of the number of affected i n d i v i d u a l s , or the t i p of the CFS iceberg" (pp. 51-52). Because reported s t a t i s t i c s of the incidence of CFS are based on the CDC d e f i n i t i o n , and because i n our society, l e g i t i m i z a t i o n of the syndrome requires persons to p e r s i s t i n seeking a medical diagnosis, s t a t i s t i c s on CFS may be grossly underestimated (Makela, 1994; Price et a l . , 1992). The preceding discussion has served to orient the reader to the issues surrounding CFS. Cle a r l y i t i s an i l l n e s s that impacts on many persons' l i v e s . The next section w i l l focus on the r o l e of nursing i n the recovery pathways of persons who are experiencing CFS, and on the need for expanded knowledge i n t h i s area. The Significance to Nursing As stated above, there i s no known cause of CFS. Diagnosis i s primarily made by r u l i n g out other i d e n t i f i a b l e conditions. There i s no known cure, and-there are no clear pathways to recovery f o r persons experiencing CFS. Some persons recover. Some remain i l l for many years. Although a wide v a r i e t y of medical, a l t e r n a t i v e , complementary and s e l f -help healing approaches are available, there i s no d e f i n i t e i n d i c a t i o n as to which works, when, or for whom. There i s no cl e a r d i r e c t i o n as to how persons experiencing CFS can f i n d t h e i r way through the illness-treatment maze they may f i n d themselves i n . The person experiencing CFS needs a knowledgeable guide, teacher, supporter and advocate. Despite the fac t that nurses have the q u a l i t i e s (communication and r e l a t i o n s h i p s k i l l s , h o l i s t i c perspective of the c l i e n t , coordination of health care s k i l l s , advocacy s k i l l s ) necessary to meet the 8 n e e d s o f t h e p e r s o n e x p e r i e n c i n g C F S , t o d a t e , n u r s i n g p r a c t i c e h a s b e e n o n l y p e r i p h e r a l l y i n v o l v e d i n p r o v i d i n g c a r e f o r p e r s o n s e x p e r i e n c i n g C F S ( B l a k e , 1 9 9 3 a & 1 9 9 3 b ; D a l e , 1 9 9 1 ; M a t h i e s o n , 1 9 9 3 ; p e r s o n a l c o m m u n i c a t i o n w i t h n u r s e s w o r k i n g i n a c u t e c a r e , c o n t i n u i n g c a r e , p u b l i c h e a l t h , a n d n u r s i n g e d u c a t i o n i n K e l o w n a , B r i t i s h C o l u m b i a ) . A s t h e r e a d e r w i l l d i s c o v e r i n t h e n e x t c h a p t e r , t h e r e i s a p a u c i t y o f n u r s i n g l i t e r a t u r e r e l a t e d t o w o r k i n g w i t h p e r s o n s e x p e r i e n c i n g C F S . C l e a r l y , t h e r e i s n e e d f o r i n c r e a s e d n u r s i n g k n o w l e d g e i n t h e a r e a . T h e i n c r e a s e d k n o w l e d g e a n d u n d e r s t a n d i n g g a i n e d f r o m t h i s s t u d y w i l l f a c i l i t a t e t h e n u r s i n g p r o f e s s i o n i n r e c o g n i z i n g a n d f u l f i l l i n g i t s r o l e i n t h e h e a l t h c a r e t e a m p r o v i d i n g c a r e f o r p e r s o n s e x p e r i e n c i n g C F S . B e f o r e m o v i n g o n t o t h e l i t e r a t u r e r e v i e w , t h e d e f i n i t i o n s a n d a s s u m p t i o n s p e r t a i n i n g t o t h i s s t u d y w i l l b e p r e s e n t e d . D e f i n i t i o n s a n d A s s u m p t i o n s A s a r e f e r e n c e a n d a p o i n t o f i n f o r m a t i o n f o r t h e r e a d e r , t h e d e f i n i t i o n s a n d a s s u m p t i o n s w h i c h p e r t a i n t o t h i s s t u d y a r e p r e s e n t e d b e l o w . D e f i n i t i o n s P e r t a i n i n g t o t h e S t u d y A l t e r n a t e t h e r a p i e s : r e f e r s t o h e a l i n g a p p r o a c h e s w h i c h a r e u s e d o u t s i d e t r a d i t i o n a l ( W e s t e r n ) m e d i c i n e . C o m p l e m e n t a r y t h e r a p i e s : r e f e r s t o " a n y a p p r o a c h t h a t w o r k s a l o n g s i d e a n d s u p p o r t s e s t a b l i s h e d m e d i c a l t r e a t m e n t " ( C o l l i n g e , 1 9 9 3 , p . 1 6 ) . H e a l i n g : r e f e r s t o i n t e r n a l l y o r e x t e r n a l l y i n i t i a t e d p h e n o m e n a w h i c h f a c i l i t a t e t h e b o d y ' s i n t e r n a l , n a t u r a l t e n d e n c y t o w a r d s h o m e o s t a s i s . I t r e f e r s t o t h o s e w a y s i n w h i c h t h e h o l i s t i c a l l y p e r c e i v e d p e r s o n i s e n a b l e d i n r e c o n s t r u c t i o n , r e p a i r , a n d r e c u p e r a t i o n ( C o u s i n s , 1 9 8 9 ; L a i d l a w , M a l m o , e t a l . , 1 9 9 0 ; S e l b y , 1991 ) . Mind-body healing: r e f e r s to the deliberate, c o i n c i d e n t a l , or conscious use of the r e c i p r o c a l and dynamic influence of the mind and body i n f a c i l i t a t i n g a person's movement towards t h e i r innate tendency f o r homeostasis. Recovery: i s defined as "re-es t a b l i s h i n g a sense of equilibrium, c o n t r o l , harmony, q u a l i t y [of] l i f e , . . . a n d s a t i s f a c t o r y l e v e l of functioning" (Collinge. 1993. pp. 32-33) as i d e n t i f i e d by the i n d i v i d u a l . Recovery has two parts: the process of "recovering", and "recovered", an end state of perceived complete recovery i n which CFS i s present i n a background po s i t i o n , but does not control the person's l i f e . Recovery i s distinguished from "cured" which r e f e r s to successful treatment of the agent responsible for a disease, thus returning the person to a p r e - i l l n e s s health state i n which CFS i s gone. Self-help approaches: include those treatments which an i n d i v i d u a l i n i t i a t e s without the d i r e c t i o n or management of t r a d i t i o n a l or al t e r n a t i v e therapists. T r a d i t i o n a l medicine: ref e r s to the prac t i c e of "Western medicine" which focuses on the diagnosis and treatment of bi o p h y s i o l o g i c a l disorders and t y p i c a l l y uses a l l o p a t h i c approaches which r e l y on pharmaceuticals and technology. Assumptions In carrying out t h i s study, the researcher worked under the following assumptions: 1. Persons diagnosed with CFS can f i n d healing pathways to recovery. 2. Recovery i s attainable' for persons who have been diagnosed with CFS. 10 3. Participants i n t h i s study (including the researcher) work from a p o s i t i o n of i n t e g r i t y which means that in t e r a c t i o n s would be open and honest. 4. Each p a r t i c i p a n t has had unique l i f e experiences, i s i n d i v i d u a l l y situated, and has a unique construction of h i s or her healing pathway towards recovery from CFS. In t h i s chapter, the reader has been introduced to the problem which nudged the researcher to embark on t h i s study, the purpose of the study, i t s s i g n i f i c a n c e to nursing, and an overview of other foundational information which establishes the importance of developing knowledge about persons' pathways of healing towards recovery from CFS. In the next chapter, a review of the l i t e r a t u r e w i l l further inform the reader about the need for t h i s research. 11 C H A P T E R TWO L I T E R A T U R E R E V I E W S c h o l a r l y l i t e r a t u r e h a s f o c u s s e d o n i d e n t i f y i n g t h e c a u s e o f C F S , a n d o n f i n d i n g a c u r e . T h e l a y l i t e r a t u r e a l s o i n f o r m e d t h e r e s e a r c h e r w h e n e s t a b l i s h i n g t h e f o u n d a t i o n o f k n o w l e d g e f o r t h i s s t u d y . T h i s c h a p t e r r e v i e w s t h e l i t e r a t u r e p e r t i n e n t t o t h e e t i o l o g y o f C F S , a n d t o t h e p a t h w a y s t o r e c o v e r y f r o m C F S . E t i o l o g i c a l S t u d i e s T h e w i d e s p r e a d s y m p t o m o l o g y o f C F S c o n t i n u e s t o b a f f l e r e s e a r c h e r s ' a t t e m p t s t o i d e n t i f y t h e e t i o l o g y o f t h e s y n d r o m e . N u m e r o u s t h e o r i e s a b o u n d , r a n g i n g f r o m C F S h a v i n g a p s y c h o l o g i c a l , b a s i s ( B l a k e , 1 9 9 3 a ; C o p e , D a v i d , & M a n n , 1 9 9 4 ; D u t t o n , 1 9 9 2 ; K a t o n & W a l k e r , 1 9 9 3 ; S h o r t e r , 1 9 9 2 , a s c i t e d b y K o m a r o f f , 1 9 9 3 a ; W e s s e l y , 1 9 9 3 ; W e s s e l y , 1 9 9 4 ; W e s s e l y , a s r e p o r t e d b y M a r s h a l l & W i l l i a m s , 1 9 9 4 a & 1 9 9 4 b ) t o b e i n g c a u s e d b y a y e t -t o - b e d i s c o v e r e d m y s t e r i o u s v i r u s " X " ( B l a k e , 1 9 9 3 a ; L e v y , 1 9 9 4 ) . L o g i c d i c t a t e s t h a t t h e p a t h w a y s t o r e c o v e r y t a k e n b y t h e p e r s o n e x p e r i e n c i n g C F S a r e l i k e l y t o b e i n f l u e n c e d b y h i s o r h e r b e l i e f s i n r e l a t i o n t o t h e e t i o l o g y o f t h e c o n d i t i o n . A t t h e p r e s e n t t i m e , t h e p r e d o m i n a n t t h e o r i e s p r e s e n t e d i n t h e l i t e r a t u r e a r e : v i r a l , i m m u n e s y s t e m , a n d m u l t i c a u s a l ( t h e m o s t p r e d o m i n a n t b e i n g t h e l i m b i c e n c e p h a l o p a t h y t h e o r y ) w h i c h a r e s u m m a r i z e d b e l o w . V i r a l H y p o t h e s e s T h e f l u - l i k e n a t u r e o f C F S a n d t h e a l t e r e d s t a t e o f t h e immune s y s t e m o f p e r s o n s e x p e r i e n c i n g C F S h a v e c o n v i n c e d many r e s e a r c h e r s t o l o o k f o r v i r a l c a u s e s . H e r p e s v i r u s e s , e n t e r o v i r u s e s , a n d r e t r o v i r u s e s h a v e e a c h b e e n t h e f o c u s o f c o n s i d e r a b l e r e s e a r c h ( A b l a s h i , e t a l . , 1 9 9 1 ; K e n n e y , 1 9 9 3 ; K o m a r o f f , 1 9 9 3 b ; K u n d a & M e n e z e s , 1 9 9 1 ; R e a d , e t a l . , 1 9 9 0 ) . A l t h o u g h 12 the above viruses have been i s o l a t e d i n i n d i v i d u a l s diagnosed with CFS, "no c l e a r and convincing evidence has emerged to demonstrate a causal r e l a t i o n between i n f e c t i o n with any s p e c i f i c v i r a l agent and the subsequent development of CFS" (Demitrak, 1994, p. 1). At the present time, most researchers support the hypothesis that latent viruses are reactivated i n a susceptible host (Ablashi, 1994; Feiden, 1990; Gow, et a l . , 1994; Gunn, et a l . , 1993; Heneine, et a l . , 1994; Joncas, 1991b; Levy, 1994). Immune System Hypotheses Researchers are generally i n agreement that there i s evidence of immune system involvement i n CFS; however, "the reason for immune dysfunctions i n i n d i v i d u a l s with CFS i s not known" (Barker, et a l . , 1994, p. 141). Studies indicate that persons diagnosed with CFS t y p i c a l l y have decreased natural k i l l e r (NK) c e l l s , increased suppressor c e l l s , and increased cytokine production, but findings are inconsistent and inconclusive (Barker, et a l . , 1994; 1990; Gunn, 1993; Kunda & Menzes, 1989; Lloyd, 1994; Patarca, et a l . , 1994; Read, et a l . , 1990). The question i s posed as to whether immune dysfunctions found i n persons diagnosed with CFS i s primary or secondary. K e l l e r , et a l . (1994) hypothesize that a genetic weakness i s the source of primary immune system dysfunction i n CFS. Numerous agents are c i t e d as possible o r i g i n a l sources of secondary immune system dysfunction. These include: (a) psychological (Barker, et a l . , 1994; Dutton, 1992; S a l i t , et a l . , 1991; (b) hormonal (Dechene, 1993; Demitrack, 1994); (c) metabolic (Cheney, 1993; Lane, Swinburne, Kurantsune, & Majeed as reported by Lapp, 1994; Stockkdale, 1993; (d) environmental (Behan & Haniffah, 1994; Chester & Levine, 1994; Vayda, 1991); and (e) v i r a l ( refer to previous section). 13 Multicausal Theories Although a l l e t i o l o g i c a l theories continue to receive some support, at the present time, the l i t e r a t u r e predominantly supports a multicausal hypotheses. The focus of multicausal CFS studies tends to be i n keeping with the d i s c i p l i n e of the researcher involved. For example, Abbey (1993) focusses on psychological aspects which may contribute to a multicausal etiology; Ware's (1993) study views a multicausal CFS etiology from a s o c i a l context perspective; and Straus (1988) emphasizes the r o l e of viruses. Such studies are i n t e r e s t i n g , but tend to dwell on one aspect and f a i l to explain a multicausal theory as a whole. At the present time, the most thoroughly researched and explicated multicausal theory i s Goldstein's (1992, 1 9 9 3 a ) limbic encephalopathy hypothesis, which i s summarized below. (Collinge, 1993; Demitrack, 1994; Feiden, 1990; Goldstein, 1992, 1993a; Komaroff, 1991; Loblay & Swain, 1992; Martinovic & Gray, 1994; Mathieson, 1 9 9 3 ) . Limbic Encephalopathy: Psychoneuroimmunology Hypothesis The limbic system of the brain i s an i n t e r - r e l a t e d group of structures which'is ce n t r a l to regulation and int e g r a t i o n of numerous body systems. Some of i t s major role s include: (a) to maintain balance of the autonomic nervous system, the hormonal system, and the immune system, and (b) to "help to regulate memory and learning, drive modulation, [and] the inte g r a t i o n of a f f e c t and experience" (Goldstein, 1992, p. 400) through changes i n neurochemistry. The limbic system can become dysfunctional when any one of the systems which i t regulates becomes traumatized. A d d i t i o n a l l y , when the limbic system i s dysfunctional due to breakdown i n one body system, i t can disrupt functioning i n any or a l l of the systems i t regulates. So for example, a person experiencing CFS may i n i t i a l l y have had 14 immune system a c t i v a t i o n due to a vir u s , leading to limbic system dysfunction. Subsequently, the dysfunctional limbic system could express i t s e l f through disrupted autoimmune function, hormonal imbalances, emotional imbalances, or numerous other ways (Goodpasture, 1993b; Goldstein, 1992, 1993a; personal communication with Dr. Hewitt Goodpasture, Infectious Disease Consultant, Kansas, February, 1993). Goldstein (1993a) states that limbic system encephalopathy can account for "most of the symptoms of CFS" (p. 23), and hypothesizes that: (a) i n persons experiencing CFS, "immune disorders are secondary to a primary neurologic process" (p.17), (b) "the immune system [ i s ] a receptor sens o r i a l organ" (p.19) which, through the regulatory function of the limbic system, i s s e n s i t i v e and responsive to the i n d i v i d u a l ' s cognitive, a f f e c t i v e , and endocrine climate, (c) hereditary factors predispose the i n d i v i d u a l ' s c e n t r a l nervous system ( p a r t i c u l a r l y the limbic area) to v u l n e r a b i l i t y from p a r t i c u l a r stressors - most probably v i r a l (pp. 19-21). Goldstein (1992) emphasizes that "no matter what the cause of the syndrome, the symptoms are transduced through the limbic system" (p. 404). He maintains that ''the limbic encephalopathology theory i s fundamental to understanding the heterogenous experience of persons diagnosed with CFS, provides an explanation for the inconsistent and i n d i v i d u a l i z e d therapy responses of persons diagnosed with CFS, and provides d i r e c t i o n f o r treatment (p.404). In the above discussion of the l i t e r a t u r e i t i s apparent that there may be as many pathways to the signs and symptoms of CFS as there are i n d i v i d u a l s who have the i l l n e s s . It follows that there may also be just as many pathways of healing towards recovery. 15 Pathways Towards Recovery The i n d i v i d u a l who experiences the troublesome symptoms of CFS in e v i t a b l y turns to h i s or her t r a d i t i o n a l medical physician for help. In our culture, when one i s unwell, standard p r a c t i c e i s to "see the doctor", a.service which is.supported by the health care system. For the purpose of t h i s study, " t r a d i t i o n a l medicine" r e f e r s to the pr a c t i c e of "western medicine" which focuses on the diagnosis and treatment of bi o p h y s i o l o g i c a l disorders. T y p i c a l l y , t r a d i t i o n a l medicine uses a l l o p a t h i c approaches, which r e l y on pharmaceuticals and technology. Sometimes, persons experiencing CFS f i n d t h e i r way to complementary, alternate, and/or s e l f -help approaches, services which have minimal support from the health care system. In t h i s study, "alternate therapies" r e f e r to healing approaches which are used outside t r a d i t i o n a l medicine. "Complementary therapies" refe r s to "any approach that works alongside and supports established medical treatment" (Collinge, 1 9 9 3 , p. 1 6 ) . Ideally, complementary therapies are used i n co l l a b o r a t i o n with the physician (Collinge, 1 9 9 3 ; Stoff & Pellegrino, 1 9 9 2 ; Feiden, 1 9 9 0 ) . "Self-help therapies" include those treatments which an i n d i v i d u a l i n i t i a t e s outside the d i r e c t i o n and/or management of t r a d i t i o n a l or a l t e r n a t i v e therapists. In the process of seeking diagnosis and recovery, the person experiencing CFS has contact with nurses, a service generally provided through the health care system. There i s sparse nursing l i t e r a t u r e on CFS, suggesting that nursing pr a c t i c e remains p e r i p h e r a l l y involved i n the care of persons experiencing CFS. The next four sections present the CFS recovery l i t e r a t u r e of t r a d i t i o n a l medicine, complementary and a l t e r n a t i v e resources, s e l f - h e l p approaches, and nursing. 16 T r a d i t i o n a l Medical Perspectives Despite an abundance of l i t e r a t u r e on anecdotal c l i n i c a l t r i a l s and research of medical (pharmaceutical) therapies, findings are inconsistent, contradictory, inconclusive, and of questionable value. Some authors question the v a l i d i t y and r e l i a b i l i t y of findings because: conclusions have been drawn from anecdotal drug t r i a l s using as few as three or f i v e patients; v a r i a b l e case d e f i n i t i o n s have been used; a small sample has been used; studies have been uncontrolled or subjects not randomly selected; when controls were used, t h e i r improvement frequently i s equal to or better than that of the treatment subjects; and, inconsistent methods of measurement have been used ( B l o n d e l - H i l l & Shafran, 1993; Makela, 1994; Straus, 1990). As a r e s u l t , the l i t e r a t u r e provides physicians with l i t t l e tangible d i r e c t i o n . Makela (1994) describes the s i t u a t i o n as follows: "No s p e c i f i c drug therapy can be recommended for CFS [and therefore] the choice of agent should be based on cost, patient acceptance, physician preference....Non-compliance r e s u l t s from i n t o l e r a b l e medication regimes" (p. 50). An overview of studies pertaining to symptomatic pharmacological treatments and 'immune system boosters and a n t i v i r a l agents i s presented below. Symptomatic Pharmacological Treatments Despite inconclusive evidence of benefits and r i s k s , and l i t t l e s p e c i f i c i n d i c a t i o n as to why a p a r t i c u l a r medication should be t r i e d f o r a p a r t i c u l a r person, physicians tend to prescribe pharmaceuticals to persons diagnosed with CFS, hoping to r e l i e v e symptoms. The l i t e r a t u r e most commonly recommends a t r i a l of antidepressants to a l l e v i a t e depression, sleep disturbance, and chemical imbalances i n the brain (Lapp, 1992; Makela, 1994). Based on the limbic system dysfunction e t i o l o g i c a l theory, 17 antidepressants are also recommended for t r e a t i n g CFS even i f no s i g n i f i c a n t depression i s evident (Behan et a l . , 1 9 9 4 ; B l o n d e l - H i l l & Shafran, 1 9 9 3 ; Goldstein, 1 9 9 4 ; Goodpasture, 1 9 9 3 a & 1 9 9 3 b ; Klonoff, 1 9 9 2 ; Lapp, 1 9 9 2 ; Makela, 1 9 9 4 ) . Goldstein ( 1 9 9 4 ) reports treatment t r i a l s of seven neuropharmacologies (drugs which e f f e c t the nervous system), with preliminary findings that three of the seven medications "are e f f e c t i v e agents for some [persons diagnosed with CFS]...although i t i s d i f f i c u l t to predict who w i l l respond to what medication" (pp. 5 - 6 ) . The report of h i s informal study describes him presc r i b i n g a sequence of the seven drugs i n "treatment t r i a l s . . . a b o u t 45 minutes apart" (p. 2 ) . I t i s unclear as to whether the same c l i e n t t r i e s a l l seven drugs 45 minutes apart or whether the drugs are t r i e d on c l i e n t s who are seen 45 minutes apart. Nevertheless, t h i s report i s an extreme example of the t r i a l basis on which physicians prescribe medications for persons experiencing CFS. Although antidepressants and other neuropharmacologies are most commonly used for r e l i e f of CFS symptoms, other medications are also used. Analgesics, anti-inflammatory agents, and anti-histamines are prescribed to provide r e l i e f for myalgia, a r t h r a l g i a , headaches, and a l l e r g i c symptoms. There are no reports of studies that address t h e i r s p e c i f i c use or benefit for persons diagnosed with CFS ( B l o n d e l - H i l l & Shafran, 1 9 9 3 ; Goodpasture, 1 9 9 3 a ; Lapp, 1 9 9 2 ) . Immune System Boosters and A n t i v i r a l Agents Reports of treatment t r i a l s with immune system boosters and a n t i v i r a l agents present contradictory findings, v e r i f y the occurrence of dangerous side e f f e c t s , and generally do not substantiate use of the agent under study. The most frequently reported immune system boosters and a n t i v i r a l s 18 i n the l i t e r a t u r e include: Acyclovir (an a n t i v i r a l agent), Ampligen (an a n t i v i r a l and immunomodulatory drug), intravenous immunoglobulin, and human transfer factor ( B l o n d i l - H i l l & Shafran, 1993; Kenney, 1994; Lloyd et a l . , 1992; Lloyd et a l . , 1993; Makela, 1994; Peterson et a l . , 1990; Steinback, et a l . , 1994; Strayer, et a l . , 1994; Viza & Pizza, 1993). In summary, although research and c l i n i c a l studies of each medical treatment have reported some improvement i n some persons diagnosed with CFS, adverse e f f e c t s can be serious, and no medical treatment to date has proven to be a cure for CFS (Goodpasture, 1993a; Goldstein, 1993a). Pharmaceutical treatments a v a i l a b l e to persons diagnosed with CFS are dependent on t h e i r physician's persuasion. Some physicians l i b e r a l l y prescribe t r i a l s of medication. Some prescribe no treatments whatsoever, s t a t i n g that "the patient's i n t e r e s t i s best served by following standard CFS treatment, which i s no treatment" (Goldstein, 1993a, p. 130). Some physicians give the c l i e n t placating advice to rest and get on with l i f e , or suggest psychotherapy (Berne, 1992; Blake, 1993b; Kenny, 1994). A few physicians have 'incorporated h o l i s t i c health p r i n c i p l e s into t h e i r p r a c t i c e . These' doctors o f f e r persons diagnosed with CFS " a l t e r n a t i v e " healing approaches (such as herbal remedies, counselling, n u t r i t i o n a l therapy, or v i s u a l i z a t i o n ) along with t r a d i t i o n a l medical treatments (Stoff & Pellegrino, 1992). Complementary and Al t e r n a t i v e Perspectives If/when persons experiencing CFS perceive that t r a d i t i o n a l medical therapies are i n e f f e c t i v e , persons who have CFS tend to seek other avenues for assistance. E s p e c i a l l y if/when they f e e l ignored, devalued, or humiliated by t h e i r experience with t r a d i t i o n a l physicians, some persons experiencing CFS look elsewhere for help and .support (Walmsley, 1993; 19 Blake, 1993b; M a r z u l l i , 1992). Through word of mouth, the media, lay and scholarly l i t e r a t u r e , and from health care professionals, persons experiencing CFS learn about approaches which are complementary or a l t e r n a t i v e to t r a d i t i o n a l medicine. Complementary and a l t e r n a t i v e treatments used by persons who have CFS may include: l i f e s t y l e changes, communication and r e l a t i o n s h i p changes, psychological counselling, cognitive therapy, dietary changes, mega vitamin and mineral therapy, physiotherapy, herbal remedies, r e l a x a t i o n techniques, exercise programs, stress management, acupuncture, imagery, hypnosis, and therapeutic massage (Collinge, 1993 & 1994; Cousins, 1989; Moyers, 1993; Selby, 1991; Siegel, 1989; Solomon, 1989; Starck, 1991; Stoff & P e l l i g r i n o , 1992) . Persons who have CFS may receive guidance for complementary or a l t e r n a t i v e therapies from naturopaths, healers i n Chinese (Eastern) medicines, psychologists, s o c i a l workers, physiotherapists, massage therapists, and others. Some "guides" blend various approaches. For example, a naturopath may provide i n s t r u c t i o n on r e l a x a t i o n techniques, herbal remedies, Eastern medicine remedies, mega vitamin and mineral therapy, and n u t r i t i o n ; or a psychologist may a s s i s t persons experiencing CFS with relaxation techniques, r e l a t i o n s h i p counselling, and cognitive therapy. As previously stated, some physicians of t r a d i t i o n a l medicine may combine alternate and complementary therapies with t r a d i t i o n a l medical approaches. In the l i t e r a t u r e , two of the most frequently mentioned complementary-alternative therapies are naturopathic medicine and mind-body healing. They are summarized below. Naturopathic Medicine When persons experiencing CFS decide to go beyond t r a d i t i o n a l 2 0 medicine, many consult with a naturopath. In speaking about her experience with CFS, Blake (1993b) states: "The health care system I was f a m i l i a r with di d not have the answer....I began to see a naturopathic physician whose h o l i s t i c approach was immediately encouraging" (p.31). The essence of naturopathic medicine focusses on "the body's innate healing a b i l i t y and on curative properties of c e r t a i n natural substances i n the environment [used as naturopathic medicines]" (Berne, 1992, p.164). Naturopaths support a multicausal e t i o l o g i c a l theory of CFS. Their view of CFS incorporates the c e n t r a l i t y of the immune system, the s u s c e p t i b i l i t y of the host, and the ro l e of psychological, emotional, and physical stressors (Donovan, 1988; personal communication, Dr. T. Salloum, ND, Dec. 14, 1994, & Dr. G. Swetlikoff, ND, Jan. 9, 1995). The goal of naturopathic treatment for c l i e n t s who have CFS i s threefold: d e t o x i f i c a t i o n through stimulating the eliminative organs; immune potentiation through nutrients, glandular substances and botanicals; and stress reduction through h o l i s t i c programs (Donovan, 1988; personal communication, Salloum, 1994, & Swetlikoff, 1995). Studies have examined the effectiveness of "naturopathic" treatments for persons experiencing CFS. Treatments studied include: high doses of vitamins and minerals, e s s e n t i a l f a t t y a c i d therapy, and exercise therapy. Although the l i t e r a t u r e suggests that naturopathic medicine may contribute to the healing of persons experiencing CFS, reports of research examining the r e s u l t s of s p e c i f i c naturopathic approaches i n the healing of persons who have CFS indicate that t h e i r effectiveness, l i k e that of medical therapies, i s i n d i v i d u a l i s t i c and unpredictable (Cunha, 1993 ; Donovan, 1988; Holzschlag, 1993 ; Klonoff, 1992; Lapp & Cheney, 1993 ; Lloyd, et a l . , 1994; Marinovic & Gray, 1994; Winther, 1992). Because naturopathic treatments are r a r e l y supported by health insurance, cost becomes a 21 s i g n i f i c a n t factor for many persons who have CFS (Berne, 1992; Feiden, 1990; Walmsley, 1993). Mind-Body Healing Mind-body healing i s a broad phenomenon, perceived by some to be u n s c i e n t i f i c , and thus questionable. T r a d i t i o n a l medicine, with i t s bio p h y s i o l o g i c a l roots, has been reluctant to acknowledge the v a l i d i t y of mind-body healing. Peterson (1992, forward to Collinge, 1993) states: "The argument that mind and body are separate, which has prevailed i n medicine for many years, has slowed research into diseases a f f e c t i n g the whole person. This has produced d i s a b i l i t y and delayed therapy i n many patients s u f f e r i n g from CFS" (p. 12). In contrast, Chinese (Eastern) medicine i s based on the b e l i e f that mind and body are one i n unity with the universe. In Chinese medicine, " c h i " , the "dynamic v i t a l energy present i n a l l things" (Starck, 1991, p. 170) i s kept i n balance through honouring and upholding the oneness of the h o l i s t i c being (Moyers, 1993; Starck, 1991). In t h i s study, mind-body healing r e f e r s to the deliberate, c o i n c i d e n t a l , or,: conscious use of the r e c i p r o c a l and dynamic influence of the mind and body i n moving a person towards t h e i r innate tendency f o r homeostasis. Mind-body healing i s based on the assumption that the mind and the body are dynamically connected, the mind in f l u e n c i n g the body, and the body influencing the mind. For example, Cousins (1989) discusses how negative emotions, thoughts, and attitudes can lead to many i l l n e s s e s and how p o s i t i v e emotions, thoughts and attitudes "activate healing forces" (p. 3) for wellness. The body's influence on the mind can be seen when physi c a l a c t i v i t y i s used to help a l l e v i a t e depression, or when rel a x a t i o n exercises are used to r e l i e v e the stress response (Cousins, 1989; Laidlaw & Malmo, 1990; Moyers, 1993; Siegel, 1989; Selye, 1978; Starck, 1991). The mind-body 22 connection can more accurately be viewed as a "oneness" of mind and body, a point emphasized by Ader (1993), the founder of psychoneuroimmunology (Moyers, 1993; Starck, 1991). The limbic system's hypothesized involvement i n the etiology of CFS i s based on psychoneuroimmunology (the interrelatedness of the brain, the nervous system, the endocrine system, and immunity), and i s an excellent example of the dynamic r e c i p r o c i t y (the oneness) of mind and body. The reader w i l l r e c a l l that limbic system dysfunction can be caused by dysfunction of any of the systems which i t regulates ( a f f e c t i v e , immune, reparative, endocrine), and that the limbic system can r e c i p r o c a l l y lead to dysfunction of any of the systems i t regulates. I t l o g i c a l l y follows that the mind-body connection can be important for persons experiencing CFS i n fi n d i n g healing pathways. Possibly such healing pathways have unknowingly been responsible for improvement i n those persons who were the "controls" i n studies, and who were said to have "the placebo e f f e c t " ( B l o n d e l - H i l l & Shafran, 1993; Collinge, 1993 & 1994; Goodpasture, 1993a; Makela, 1994). The l i t e r a t u r e discusses a number of therapies which are based on the p r i n c i p l e s of mind-body healing. These include: deep relaxation, meditation, guided imagery or v i s u a l i z a t i o n , hypnosis, emotive counselling, cognitive therapy, biofeedback, yoga, and t a i chi (Collinge, 1993 & 1994; Moyers, 1993; Selby, 1991; Solomon, 1989; Starck, 1991). There are numerous testimonials (of persons experiencing a v a r i e t y of conditions) i n support of healing a t t r i b u t e d to the use of the mind-body connection (Cousins, 1989; Collinge, 1993 & 1994; Dreher, 1995; Moyers, 1993; Selby, 1991; Siegel, 1989; Solomon, 1989; Starck, 1991; Stoff & P e l l i g r i n o , 1992). Collinge (1993) endorses the value of mind-body healing for persons experiencing CFS: "The fact that many have recovered i n the 23 absence o f m e d i c a l t r e a t m e n t i s e v i d e n c e t h a t t h e body has t h e i n h e r e n t a b i l i t y t o h e a l . . . immune d y s f u n c t i o n " (p. 7 4 ) . Mind-body h e a l i n g can be employed d e l i b e r a t e l y o r c o i n c i d e n t a l l y by any number of a l t e r n a t e and complementary t h e r a p i s t s as w e l l as p e r s o n s p r a c t i c i n g t r a d i t i o n a l m e d i c i n e . I t can a l s o be u s e d as a s e l f - h e l p t o o l ( d i s c u s s e d i n t h e n e x t s e c t i o n ) . H e a l e r s who employ mind-body m e d i c i n e c a n come from numerous d i s c i p l i n e s i n c l u d i n g : p s y c h o l o g y , n a t u r o p a t h y , n u r s i n g , t h e o l o g y , c o u n s e l l i n g , t r a d i t i o n a l m e d i c i n e , and o t h e r s . The l i t e r a t u r e i d e n t i f i e s two main r i s k s w i t h t h e use of mind-body h e a l i n g . The p e r s o n e m p l o y i n g mind-body h e a l i n g may f e e l : (a) a sense o f f a i l u r e i f improvement does n o t o c c u r , o r (b) a sense o f g u i l t and doubt when s u c c e s s f u l outcomes cause o t h e r s t o q u e s t i o n whether t h e o r i g i n a l c o n d i t i o n was " r e a l " . R e p o r t s on t h e 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 and c o g n i t i v e - b e h a v i o r a l t h e r a p y f o r p e r s o n s e x p e r i e n c i n g CFS e x e m p l i f y s u c h r i s k s (Abbey, 1993 ; B u t l e r & C h a l d e r , 1990 ; Cope, D a v i d , & Mann, 1994; K a t o n & Walker, 1993 ; Sharpe, 1993 ; Ware, 1993 ; Wessely, 1 9 9 3 ) . I n summary, s t o r i e s and r e p o r t s c r e d i t complementary o r a l t e r n a t i v e approaches w i t h ' h e l p i n g p e r s o n s d i a g n o s e d w i t h CFS t o manage t h e i r a l t e r e d h e a l t h s i t u a t i o n and w i t h i m p r o v i n g t h e i r c o n d i t i o n ( B l a k e , 1993b ; B u r k e , 1992 ; C o l l i n g e , 1993 & 1994; D u f f , 1993 ; Greenbern, 1993 ; S t o f f & P e l l i g r i n o , 1992 ; Vayda, 1 9 9 1 ) . However, t o use a l t e r n a t i v e a p p roaches r e q u i r e s t h a t t h e p e r s o n e x p e r i e n c i n g CFS a c c e s s and c o o r d i n a t e s u c h t h e r a p i e s i n a h e a l t h c a r e c l i m a t e w h i c h may e x p r e s s s c e p t i c i s m t o b o t h t h e p e r s o n and t h e i r i l l n e s s (Berne, 1992 ; F e i d e n , 1990 ; Walmsley, 1 9 9 3 ) . Documented s c h o l a r l y knowledge i n t h i s a r e a i s s p a r s e ; t h u s , l i m i t e d knowledge i s a v a i l a b l e t o t h e c l i e n t and t o t h e h e a l t h p r o f e s s i o n a l ' . I n Can a d i a n s o c i e t y , when p e r s o n s seek and use a l t e r a t i v e t r e a t m e n t s , t h e y may 24 do so without the benefit of documented research, often without t h e i r medical physician's approval or counsel, without the safe-guards inherent i n health-care-system regulated therapies, and with l i m i t e d f i n a n c i a l support from health care insurance ( B e l l , 1993; Berne, 1992; Siegel, 1989; personal communication, Swetlikoff, 1995). This places the person experiencing CFS i n the frightening p o s i t i o n of stepping into unknown, sparsely researched, p o t e n t i a l l y expensive, and (sometimes) unregulated t e r r i t o r y , alone. Self-Help Approaches For persons experiencing CFS, there i s much to learn, much to handle, many losses to absorb, and some l i f e goals to abandon. The l i t e r a t u r e r e f l e c t s the challenging and f r u s t r a t i n g s i t u a t i o n faced by persons who have CFS and by health care professionals a l i k e : despite t e s t i n g numerous hypothesis, there i s no i d e n t i f i e d cause for CFS, there i s no d e f i n i t i v e diagnostic test, and there i s no known cure. Even having t h e i r i l l n e s s experiences authenticized through medical diagnosis can be a long and humiliating process for persons experiencing CFS. Frequently, they express a sense of abandonment from health care professionals (Berne, 1992). When the l i m i t a t i o n s of present health care resources for helping persons who have CFS i s acknowledged, i t comes as no surprise that persons who have CFS turn for help and support to organized support groups and to an abundance of a v a i l a b l e s e l f - h e l p materials (books, videos, a r t i c l e s , audiotapes, telephone information and support l i n e s ) . At t h i s time, no research has examined the effectiveness of s e l f - h e l p approaches for persons experiencing CFS. Support Groups Present support group networks can provide an avenue for advocacy, 25 self-expression, a sense of belonging, involvement i n a cause, and medical based information (Berne, 1992; Feiden, 1990; Kenny, 1994). Controversy e x i s t s about the usefulness of support groups such as the Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America, Myalgic Encephalomyelitis (ME) Canada, or Action for ME i n England. Those i n favour of support groups state that such groups "provide c r u c i a l emotional and p r a c t i c a l , help to countless thousands" (Feiden, 1990, p. 122), and provide "up-to-the-minute information [on the work of] physicians [who] search f o r a cause, experiment with new treatments, and work toward a cure" (p. 123). Adversaries are of the opinion that support groups "are a part of the problem, a c t u a l l y prolonging t h e i r members' s u f f e r i n g " (Walmsley, 1993, p. 86), and that they "are a c t u a l l y destructive" ( B l o n d e l - H i l l & Shafran, 1993, p. 648). The CFIDS Association of America i s well organized, v i s i b l e , publishes a journal, s e l l s educational materials, promotes and sponsors medical research, and advocates for i t s i n t e r n a t i o n a l membership. Its mission i s "To ..'conquer CFIDS and r e l a t e d disorders and to inform and empower those affected by these disorders u n t i l a cure i s found" (CFID Association, 1994). It i s strongly invested i n the medical profession, and honours and supports t r a d i t i o n a l physicians who conduct CFS research. Self-Help Books There are l i t e r a t u r e options for a l l . There are testimonials of the authors' experience and meaning of CFS. They may serve as a catharsis, as a way of f i n d i n g meaning with the i l l n e s s experience. Duff (1993) and Kenny (1994) are diverse examples of testimonials. Duff writes symbolically about the meaning the CFS experience had for her, the purpose i t served, and the soul work she needed to do to heal. Kenny writes i n anger and f r u s t r a t i o n , 26 needing to t e l l h i s story i n an e f f o r t to claim the esteem of one who has been through i t . Kenny represents the views of the CFS physicians he i s attached to. He waits for medical science to discover "the magic b u l l e t " . Angelus (1994) presents a middle of the road view. She strongly implicates environmental and chemical pollutants as causing CFS. At the same time, she describes her need for soul healing i n order to recover from CFS. Although the connection between the two i s unclear, she does state, "There were two steps at hand. One was to focus on the physical body and the second was to release the emotional body" (p. 31). Most CFS s e l f - h e l p books are written from the perspective of the author's experience or b e l i e f s . Generally, the background information about CFS provided i n CFS s e l f - h e l p books i s s i m i l a r . In addition, authors provide advice and i n s t r u c t i o n on what to do and how to l i v e with CFS. This i s where the books d i f f e r . Some books tend to have an advice-giving tone, t e l l i n g the person experiencing CFS what to do. Feiden (1990), Berne (1992) , B e l l (1993), and Rosenbaum and Susser (1992) are examples of t h i s type of book, and may be suited to persons who look for externally c o n t r o l l e d p r e s c r i p t i v e advice. Other books are written i n an empowering approach, and provide the persons with tools for understanding and managing t h e i r CFS. Collinge (1993) and Stoff & P e l l i g r i n o (1992) are examples of t h i s second type of book. Li t e r a t u r e on mind-body healing i s another source of information f o r persons experiencing CFS. "I have read a great deal about the process of healing - s p i r i t u a l l y , emotionally, and phy s i c a l l y . . . t h e connection between mind and body" (Blake, 1993b, p. 32). Cousins (1989), Collinge 1996, Moyers (1993) , Siegel (1989), and Starck (1991) are examples of general mind-body healing books. Other books s p e c i f i c a l l y focus on using the mind-body 27 connection f o r persons experiencing CFS (Collinge, 1993; Solomon, 1989, Stoff & P e l l i g r i n o , 1992). Nursing Perspective The paucity of scholarly nursing l i t e r a t u r e r e l a t i n g to persons experiencing CFS r e f l e c t s the lack of nursing knowledge i n t h i s f i e l d . Eight professional journal a r t i c l e s are a v a i l a b l e . Of these, one (Blake, 1993b) t e l l s a story of personal experience with CFS, and one (Hoy, 1994) shares her experience of supporting her son who has CFS. Anderson and Kayner's (1995) a r t i c l e focuses on the unique needs of persons experiencing CFS who are patients on an inpatient p s y c h i a t r i c u n i t . Three a r t i c l e s (Blake, 1993a; Dale, 1991; Mathieson, 1993) provide information about CFS, and a f f i r m nursing's r o l e as health care providers for persons experiencing CFS. Fox's (1994) a r t i c l e i s intended to inform nurse p r a c t i t i o n e r s about "the diagnosis and treatment of CFS" (p. 565), but i n fac t provides a narrow perspective i n that i t focuses on a psychologically based cause. In the opinion of t h i s researcher, t h i s a r t i c l e i s sadly lacking i n the caring and advocacy role s of nursing. One a r t i c l e (Butler & Chalder, 1990) reports research c a r r i e d out by a B r i t i s h team of whom two members were behavioral nurse therapists. In t h e i r p o s i t i v i s t , prospective, p i l o t study of 50 persons diagnosed with CFS (27 completed the study), Butler & Chalder (1990) set out to prove that CFS e s s e n t i a l l y i s learned avoidance behaviour i n response to some o r i g i n a l r e a l pathology, and as such, could be restructured through cognitive behavioral reconditioning. Although i n the preamble, they acknowledge that persons experiencing CFS complain of "other associated symptoms" (p. 40), when discussing t h e i r study they i d e n t i f i e d CFS s o l e l y with fatigue. Their stated aims were: "To e s t a b l i s h the r e l a t i v e e f f i c a c y 28 of cognitive behaviour therapy i n CFS and to evaluate whether an increase i n a c t i v i t y l e v e l s exacerbated symptoms" (p. 42). Pa r t i c i p a n t s were referred by a neurologist on the basis of the following operational c r i t e r i a : fatigue for over s i x months and "absence of abnormalities on routine neurological i n v e s t i g a t i o n " (p. 42). A p s y c h i a t r i s t diagnosed 23 of the o r i g i n a l 50 p a r t i c i p a n t s as having "major depression or serious or a t y p i c a l depression" (Butler & Chalder, 1990, p. 42). These 23 p a r t i c i p a n t s were put on antidepressants, and although i t i s unclearly stated, i t seemed that a l l of them completed the study. A t o t a l of 32 persons (including the 23 depressed patients) took, part i n the study, and of these 27 completed. Twenty-three (46%) of the o r i g i n a l 50 persons who entered the study, dropped out. The treatment regime involved a graded exercise program and a cognitive r e s t r u c t u r i n g program. Three pre and post-treatment measures were used to determine the effectiveness of treatment: the Beck Depression Inventory, the So c i a l Adjustment Questionnaire, and a "non-validated fatigue questionnaire" (Butler & Chalder, 1990, p. 43). They reported considerable improvement i n a l l scores, and a t t r i b u t e d these p o s i t i v e findings to the interventions used i n the study. The authors draw the conclusions that "something can be done for [persons diagnosed] with CFS", that the "advice commonly given to [persons diagnosed with CFS]" to r e s t i s "unhelpful", and that cognitive behaviour therapy benefits persons experiencing CFS (p. 43). Several flaws r a i s e cause to question the v a l i d i t y of t h i s study. Foremostly, the authors assume CFS i s a somatization of depression. For many years p r i o r to t h i s study, the l i t e r a t u r e has given ample proof of organic pathology i n CFS. A d d i t i o n a l l y , i t seems that the study sample may 29 very well have more accurately been diagnosed with depression rather than (or as well as) CFS. Secondly, the authors reason that i f depression (and rel a t e d functioning) can be improved with a graduated a c t i v i t y program, then t h i s i s proof of learned behaviour being the source of CFS. The authors f a i l to acknowledge that a c t i v i t y has long been established as a "natural antidepressant", and that several other studies have found inconsistent c l i n i c a l and subjective response to exercise programs (Edwards, Gibson, Clague, & H e l l i w e l l , 1993; Fisk, et a l . , 1994; Lloyd, Gandevia, Brockman, Hales, & Wakefielf, 1994). Thirdly, a course of antidepressant therapy was i n i t i a t e d for 23 pa r t i c i p a n t s at the s t a r t of the study. How can improvements be at t r i b u t e d to the exercise program alone - e s p e c i a l l y i f the subjects e s s e n t i a l l y were depressed? Fourthly, when 23 of the persons o r i g i n a l l y entered into the t r i a l refused to p a r t i c i p a t e i n the treatment program, one must wonder why. Were some persons just too s i c k to face the thought of forced a c t i v i t y ? The authors acknowledged that further research i s needed, and that they have embarked on a "co n t r o l l e d treatment t r i a l " (Butler & Chalder, 1990, p. 43). The need for, and the po t e n t i a l of nursing's r o l e i n helping persons who have CFS i n t h e i r healing i s affirmed by Ander and Kayner (1995), Blake (1993a), Dale (1991), and Mathieson (1993). These authors i d e n t i f y the fac t that nurses "are often the i n i t i a l and consistent contacts between the [CFS] patient and the health care system" (Blake, 1993a, p. 28), and as such, have the opportunity and r e s p o n s i b i l i t y to advocate for, educate, provide support, and coordinate health care with the c l i e n t . From the wisdom of being a nurse experiencing CFS i n the present health care system, Blake (1993a & 1993b) urges nurses to recognize t h e i r duty to persons experiencing CFS, and suggests several research areas of p a r t i c u l a r need i n 30 nursing. This study has met one of those needs. In Summary The l i t e r a t u r e reviewed above has outlined the problems c e n t r a l to the r e a l i t i e s experienced by persons who have CFS, and has provided an understanding of the need f o r t h i s research inquiry: there are no c l e a r choices for persons experiencing CFS i n seeking recovery, and there i s li m i t e d c r e d i b l e knowledge and understanding a v a i l a b l e f or health care professionals. The l i t e r a t u r e indicates that there are many varied t r a d i t i o n a l medical CFS therapies, numerous a l t e r n a t i v e and complementary approaches, and an abundance of s e l f - h e l p materials a v a i l a b l e . The effectiveness of any one healing approach varies for the i n d i v i d u a l , given that she or he has knowledge of the s p e c i f i c therapy, and has opportunity to t r y i t . The i n i t i a l scope of medical treatments a v a i l a b l e to a person experiencing CFS i s influenced by the b e l i e f s of the attending physician. The use of a l t e r n a t i v e , complementary, and s e l f - h e l p approaches depends on the personal resources of the i n d i v i d u a l who has CFS. The l i t e r a t u r e supports the researcher's questions which were: How do in d i v i d u a l s recover from CFS? What are t h e i r healing pathways? Seeking answers for those questions became the focus of inquiry for t h i s study. The research conducted i s outlined i n the next chapter on paradigm and methods. 31 C H A P T E R T H R E E P A R A D I G M AND METHODS T h i s c h a p t e r f i r s t d i s c u s s e s t h e p h i l o s o p h i c a l u n d e r p i n n i n g s o f t h e c o n s t r u c t i v i s t ( n a t u r a l i s t i c ) p a r a d i g m o f i n q u i r y , t h e d i r e c t i o n i t s a x i o m s p r o v i d e d t h e r e s e a r c h e r i n c o n d u c t i n g t h e s t u d y , a n d t h e p a r a d i g m ' s " f i t " w i t h t h e f o c u s o f i n q u i r y - h e a l i n g p a t h w a y s t o r e c o v e r y f r o m C F S . N e x t t h e m e t h o d s t h a t w e r e u s e d i n t h i s i n q u i r y w i l l b e p r e s e n t e d , i n c l u d i n g t h e h e r m e n e u t i c d i a l e c t i c p r o c e s s , p a r t i c i p a n t r e c r u i t m e n t a n d s e l e c t i o n , d e m o g r a p h i c a l d a t a , t h e r e s e a r c h e r - p a r t i c i p a n t r e l a t i o n s h i p , d a t a c o l l e c t i o n , d a t a a n a l y s i s , t r u s t w o r t h i n e s s , a n d e t h i c a l c o n s i d e r a t i o n s . P h i l o s o p h i c a l P a r a d i g m T h i s q u a l i t a t i v e s t u d y was g u i d e d b y t h e f i v e f u n d a m e n t a l a x i o m s ( b a s i c b e l i e f s ) o f t h e c o n s t r u c t i v i s t ( n a t u r a l i s t i c ) p a r a d i g m a s d e s c r i b e d b y L i n c o l n a n d G u b a ( 1 9 8 5 ) , a n d G u b a a n d L i n c o l n ( 1 9 8 9 & 1 9 9 4 ) . T h e s e a x i o m s a r e : ( a ) r e a l i t i e s ( t r u t h s ) a r e h o l i s t i c , m u l t i p l e a n d i n d i v i d u a l l y c o n s t r u c t e d ; (b ) t h e k n o w e r a n d t h e k n o w n a r e m o n i s i t i c ; ( c ) g e n e r a l i z a t i o n s a r e n o t p o s s i b l e - o n l y c o n t e x t - b o u n d w o r k i n g h y p o t h e s e s c a n b e d e v e l o p e d ; ( d ) c a u s e - e f f e c t r e l a t i o n s h i p s a r e i m p o s s i b l e t o d i s t i n g u i s h - p h e n o m e n a a r e m u t u a l l y a n d s i m u l t a n e o u s l y s h a p e d ; a n d , ( e ) " i n q u i r y i s v a l u e - b o u n d " ( L i n c o l n & G u b a , 1 9 8 5 , p . 3 7 ) . A s i s d i s c u s s e d b e l o w , t h e f o c u s o f i n q u i r y o f t h i s s t u d y f i t s w e l l w i t h t h e f i v e f u n d a m e n t a l a x i o m s o f t h e c o n s t r u c t i v i s t ( n a t u r a l i s t i c ) p a r a d i g m : 1 . L i t e r a t u r e a t t e s t s t o t h e h o l i s t i c n a t u r e o f C F S a n d p e o p l e ' s e x p e r i e n c e s w i t h C F S ( A b b e y , 1 9 9 3 ; B l a k e , 1 9 9 3 a & 1 9 9 3 b ; C o l l i n g e , 1 9 9 3 ; W a r e , 1 9 9 3 ) . T h e r e a d e r w i l l r e c a l l e a r l i e r d i s c u s s i o n o f G o l d s t e i n ' s ( 1 9 9 2 , 1 9 9 3 a ) l i m b i c s y s t e m e n c e p h a l o p a t h y h y p o t h e s i s w h i c h p o s i t s t h a t t h e h e t e r o g e n o u s e x p e r i e n c e s o f p e r s o n s who h a v e C F S o r i g i n a t e f r o m t h e 32 interrelatedness of numerous body systems through the regulatory function of the limbic system. The phenomenon of inquiry (pathways of healing towards recovery for persons medically diagnosed with CFS) was i n numerous ways represented by multiple, s o c i a l l y constructed r e a l i t i e s which included possible causative factors, the meaning of CFS to the p a r t i c i p a n t and to meaningful others, the physician's perspective and knowledge of CFS, the p a r t i c i p a n t ' s perceptions of the i l l n e s s experience; course of i l l n e s s ; choices and needs for healing; responses to s p e c i f i c healing modalities, l i f e s t y l e , and ways of handling challenges; b e l i e f s ; recovery expectations and outcomes; and others. In fact, uniqueness and i n d i v i d u a l i t y were the trademarks of the phenomenon of inquiry. 2. In order to conduct t h i s inquiry, the knower and the known (the researcher and the p a r t i c i p a n t ' s construction of h i s or her healing pathway towards recovery from CFS) needed to be monisitic - i n t e r a c t i v e and inseparable. The r e l a t i o n s h i p between the researcher and each p a r t i c i p a n t was "transactional and s u b j e c t i v i s t " (Guba & Lincoln, 1994, p. 111). From t h e i r own contexts the researcher and the p a r t i c i p a n t openly engaged with the other, each" by t h e i r mere presence influenced the other. The researcher and each p a r t i c i p a n t were " i n t e r a c t i v e l y linked so that the 'findings' were l i t e r a l l y created as the i n v e s t i g a t i o n proceed[ed]" (p. 111). The researcher found that the construction of healing pathways towards recovery from CFS began formulating with the f i r s t interview. With each new voice, the researcher kneaded and shaped that construction so that i n the end the voices proudly presented t h e i r work of a r t that spoke from and to each p a r t i c i p a n t . In r e l a t i o n to the focus of inquiry, the researcher adopted a posture of indeterminacy, because i t was not possible for the researcher to 33 predetermine "what [was] not known".(Lincoln & Guba, 1985, p. 235). F i r s t , the researcher needed to learn what i t was that she should f i n d out about -what kind of questions to ask. Clearly, the human instrument (the researcher) was the only v i a b l e t o o l f o r t h i s inquiry. For only the human instrument could engage with the p a r t i c i p a n t i n such a way that the nuances, insinuations, and personal meanings could be explored. Only the human instrument could adapt and respond to each p a r t i c i p a n t ' s way of explaining h i s or her construction of healing pathways towards recovery from CFS. 3. The phenomenon of study was highly context bound. In keeping with c o n s t r u c t i v i s t ( n a t u r a l i s t i c ) paradigm ideology, the researcher assumed that each p a r t i c i p a n t had had unique l i f e experiences, was i n d i v i d u a l l y situated, and had a unique construction of h i s or her own healing pathway towards recovery from CFS. The p a r t i c i p a n t s ' situatedness i n r e l a t i o n to CFS could be influenced by t h e i r unique pathways to i l l n e s s , experiences of signs and symptoms, physicians' b e l i e f s and experiences, a c c e s s i b i l i t y of information, readiness to reach out and seek/demand medical and a l t e r n a t i v e therapies, and other i n d i v i d u a l i s t i c phenomena. I t would not be possible to make generalizations. The findings are context bound. 4. Cause could not be distinguished from e f f e c t - rather, e n t i t i e s were mutually and simultaneously shaped. The CFS experience was a s i t u a t i o n i n which there was no answer to the r e f l e c t i v e question, "Which i s the chicken and which i s the egg?" The l i t e r a t u r e (presented i n the previous chapter) a t t e s t s to the fact that no cause-effect answers were possible to such questions as: Was the immune system dysfunctional, thus making the in d i v i d u a l vulnerable to viruses? Or was i t a virus? or genetic p r e d i s p o s i t i o n which weakened the immune system? Was the person f e e l i n g 34 better/worse i n response to a new healing modality? or to a l i f e event? or to an environmental change? No causal l i n k could be made. Any or a l l , and many other reasons and outcomes could simultaneously have been involved. 5. Numerous values impacted on the outcomes of t h i s inquiry: those of the p a r t i c i p a n t , the pa r t i c i p a n t ' s family and friends, the p a r t i c i p a n t ' s employer and co-workers, h i s or her physician, society, the paradigm of inquiry that was used, the researcher, and others. These values "may be i n resonance (affirm, reinforce) or i n dissonance with ( c o n f l i c t , r e j e c t ) one another" (Lincoln & Guba, 1985, p.161). Methods In the c o n s t r u c t i v i s t ( n a t u r a l i s t i c ) paradigm, methodological decisions are based on the assumption of a r e l a t i v i s t i c ontology and a monisitic, i n t e r a c t i v e epistemology (Guba & Lincoln, 1994). The aim i n t h i s study was to "expose the constructions of the va r i e t y of concerned p a r t i e s , open each to c r i t i q u e i n the terms of other constructions, and provide the opportunity for revised or e n t i r e l y new constructions to emerge" (Guba & Lincoln, 1989, p. 89). Four methodological s p e c i f i c a t i o n s are required as entry into c o n s t r u c t i v i s t paradigm research. These s p e c i f i c a t i o n s and how they were met i n t h i s study are outlined below: 1. C o n s t r u c t i v i s t paradigm research requires that the study be c a r r i e d out i n i t s normal/natural s e t t i n g . In t h i s study, no laboratory c o n t r o l l e d conditions were used. Participants selected the l o c a t i o n f o r interviews. Ten chose to have the discussions i n t h e i r homes: one chose to meet i n an o f f i c e . Thus, the natural s e t t i n g c r i t e r i a was upheld. 2. Because " c o n s t r u c t i v i s t s are unwilling to assume that they know what questions to ask" (p. 175), predetermined questionnaires could not be use. Thus, the adaptable human i s the instrument of choice, and "the only 35 possible choice during the early stages of an inquiry" (p. 175). In t h i s study, the researcher was the only instrument used for gathering data. An open and indeterminate stance was used. 3. Q u a l i t a t i v e methods are strongly recommended for c o n s t r u c t i v i s t inquiry, however, quantitative methods can be used "without prejudice when i t i s appropriate to do so" (p. 176). In t h i s study, an open, informal interview format was the only data gathering method used - even for demographical data. 4. In c o n s t r u c t i v i s t inquiry, "the human instrument must have the p r i v i l e g e of drawing on his or her t a c i t knowledge" (p. 177). The nudges, the i n t u i t i o n , the gut sense way of knowing i s not only allowed, but i s honoured. This researcher was comfortable with the use of t a c i t knowledge which came n a t u r a l l y for her. "I have a f e e l i n g that..." or "I have t h i s sense that..." and s i m i l a r phrases were often used i n memos, journal e n t r i e s , and i n discussions with advisors. Thus, the fourth s p e c i f i c a t i o n was met. The above overview has i d e n t i f i e d how t h i s study met the philosophical -methodological requirements of research conducted i n the c o n s t r u c t i v i s t paradigm. More s p e c i f i c issues pertaining to method w i l l now be discussed. These include: the hermeneutic d i a l e c t i c process, s e l e c t i o n c r i t e r i a and pa r t i c i p a n t recruitment, demographics, the researcher-p a r t i c i p a n t r e l a t i o n s h i p , data c o l l e c t i o n , data analysis, trustworthiness, and e t h i c a l considerations. The Hermeneutic D i a l e c t i c Process Guba and Lincoln (1989) recommend that a hermeneutic d i a l e c t i c methodology would best meet the axioms of c o n s t r u c t i v i s t ( n a t u r a l i s t i c ) inquiry. In t h i s section a b r i e f overview of the hermeneutic d i a l e c t i c 36 process w i l l f i r s t be presented, followed by a d e t a i l e d d e s c r i p t i o n of the process. As used i n t h i s study, the hermeneutic d i a l e c t i c method was defined as an inquiry process which combined: (a) a "comparison and contrast ( d i a l e c t i c ) of divergent views with a view to achieving a higher-l e v e l synthesis of them a l l " (p. 149 ) and (b) an ongoing i n t e r p r e t i v e (hermeneutic) analysis of the pa r t i c i p a n t ' s construction and subsequent reconstructions of the focus of inquiry. The researcher worked to form a connection between the pa r t i c i p a n t views so that each person could examine the r e a l i t y presented by others. The aim of t h i s process was to work towards a consensus. When consensus was not possible, the researcher endeavoured to i d e n t i f y and explicate "the several d i f f e r e n t views" (p. 1 4 9). In the l a s t interview round there was general agreement about the f i n a l construction. Because the c o n s t r u c t i v i s t paradigm values a multiple onto l o g i c a l perspective, when writing the findings, care was taken to i d e n t i f y voices which expressed any divergent views. Guba and Lincoln ( 1 9 8 9 ) went on to state that use of the hermeneutic d i a l e c t i c process ensured that " a l l p a r t i e s (including the inquirer) [were] l i k e l y to have "reconstructed the constructions with which they began.... a l l p a r t i e s [were] thus simultaneously educated... and empowered" (p. 1 4 9 ) . The researcher can at t e s t to the education and empowerment outcomes of using hermeneutic d i a l e c t i c process, a point also v a l i d a t e d by the researcher's note from the f i n a l conversation with Annette (one of the eleven p a r t i c i p a n t s ) : Annette spoke openly about the p o s i t i v e meaning being a p a r t i c i p a n t i n t h i s study had for her. She stated that i t has helped her to recognize her control over her i l l n e s s , and how well she has done. She spoke as i f she f e l t empowered by her experience. As well, i t seemed to have made her i l l n e s s experience more r e a l . It has put i t i n the context that was more legitimate for her. She said she f e l t she had been supported i n her own a b i l i t i e s . (May 2 6 , 1 9 9 6 ) 37 ( I n t h i s r e p o r t , p a r t i c i p a n t s a r e r e f e r r e d t o b y f i r s t name p s e u d o n y m s . O n e e x c e p t i o n i s D o n , who c h o s e t h a t h i s r e a l name b e u s e d . ) T h e h e r m e n e u t i c d i a l e c t i c p r o c e s s w h i c h w a s u s e d i n t h i s s t u d y d r e w o n t h e p r o c e d u r e a s o u t l i n e d b y G u b a a n d L i n c o l n ( 1 9 8 9 , p p . 1 5 1 - 1 5 5 ) , a n d was a s f o l l o w s . T h e r e s e a r c h e r s e l e c t e d a n i n i t i a l p a r t i c i p a n t who w a s c h o s e n " f o r a n y c o n v e n i e n t o r s a l i e n t r e a s o n " ( p . 1 5 1 ) . T h e f i r s t p a r t i c i p a n t (P1 ) m e t t h e s e l e c t i o n c r i t e r i a , was a r t i c u l a t e , a n d was a v a i l a b l e . P1 was i n t e r v i e w e d ( a n d a u d i o - t a p e d ) t o d e t e r m i n e a n e m i c c o n s t r u c t i o n o f t h e f o c u s o f i n q u i r y - " T e l l me a b o u t y o u r e x p e r i e n c e i n w o r k i n g t o w a r d s r e c o v e r y f r o m C F S " . When P i ' s e m i c c o n s t r u c t i o n was c o m p l e t e , t h e t a p e was t r a n s c r i b e d . T h e d a t a w e r e c o d e d a n d a n a l y z e d u s i n g c o n s t a n t c o m p a r a t i v e a n a l y s i s a s d e s c r i b e d b e l o w . T h e r e s e a r c h e r r e t u r n e d t o P1 f o r a s e c o n d i n t e r v i e w t o c l a r i f y o r c o n f i r m i n t e r p r e t a t i o n s , a n d t o a l l o w t h e p a r t i c i p a n t t o e x p a n d o n h e r c o n s t r u c t i o n . T h e s e c o n d p a r t i c i p a n t ( P 2 ) was t h e n i n t e r v i e w e d . When h e r c o n s t r u c t i o n was c o m p l e t e , s h e was a s k e d t o r e s p o n d t o t h e m e s f r o m P i ' s c o n s t r u c t i o n . T h e t r a n s c r i p t o f h e r i n t e r v i e w was c o d e d a n d a n a l y z e d ( b u i l d i n g o n P i ' s c o n s t r u c t i o n ) . D u e t o P 2 ' s t i m e c o n s t r i c t i o n s , i t was n o t p o s s i b l e t o c o n d u c t h e r s e c o n d i n t e r v i e w u n t i l a m o n t h l a t e r . H o w e v e r , t h a t p r o v e d f r u i t f u l b e c a u s e b y t h a t t i m e , t h e r e s e a r c h e r h a d c o m p l e t e d f i r s t i n t e r v i e w s w i t h s e v e r a l o t h e r p a r t i c i p a n t s , a n d was a b l e t o b r i n g t o P2 t h e i r j o i n t c o n s t r u c t i o n . A n d s o , o n e b y o n e t h e e l e v e n p a r t i c i p a n t s w e r e i n t e r v i e w e d . I n c r e a s i n g l y , p a r t i c i p a n t s w e r e a s k e d t o " a r t i c u l a t e a b o u t t h e e m e r g i n g s a l i e n t t h e m e s t h a t t h e [ r e s e a r c h e r ] b e l i e v e [ d h a d ] b e e n i d e n t i f i e d " ( G u b a & L i n c o l n , 1 9 8 9 , p . 1 5 3 ) . A f t e r e a c h i n t e r v i e w , t h e t a p e was t r a n s c r i b e d , e a c h t r a n s c r i p t was c o d e d a n d a n a l y z e d , a n d t h e i n s i g h t s a n d q u e s t i o n s 38 c a r r i e d on t o t h e n e x t p a r t i c i p a n t ' s i n t e r v i e w as w e l l as back t o t h e p a r t i c i p a n t ' s own second i n t e r v i e w . W i t h t h e second i n t e r v i e w s , t h e r e was i n c r e a s e d s t r u c t u r e i n t h e i n t e r v i e w , as t h e r e s e a r c h e r g e n e r a l l y had many p o i n t s t o a f f i r m o r c l a r i f y . P a r t i c i p a n t s were a l s o a s k e d t o d i a l o g u e about t h e emerging w o r k i n g h y p o t h e s e s . The l a s t two p a r t i c i p a n t s t o e n t e r t h e c i r c l e were a s k e d t o r e s p o n d t o t h e w o r k i n g h y p o t h e s i s : t h e j o i n t c o n s t r u c t i o n o f p a r t i c i p a n t s ' h e a l i n g pathways towards r e c o v e r y from CFS. T h e i r s u p p o r t o f t h e h y p o t h e s i s i n d i c a t e d t h a t a p o i n t o f i n f o r m a t i o n a l redundancy had been a c h i e v e d , and i n c o n s u l t a t i o n w i t h t h e f a c u l t y a d v i s o r , d a t a g a t h e r i n g was c o n s i d e r e d c o m p l e t e . P a r t i c i p a n t S e l e c t i o n C r i t e r i a and R e c r u i t m e n t As recommended by L i n c o l n and Guba (1985), p u r p o s i v e s a m p l i n g was use d i n t h i s s t u d y . S e l e c t i o n c r i t e r i a and p a r t i c i p a n t r e c r u i t m e n t a r e d i s c u s s e d below. S e l e c t i o n C r i t e r i a To q u a l i f y as a p a r t i c i p a n t i n t h i s s t u d y , a p e r s o n must have been m e d i c a l l y d i a g n o s e d w i t h CFS f o r more t h a n two y e a r s , must be o v e r 25 y e a r s o f age, g e o g r a p h i c a l l y a c c e s s i b l e f o r i n t e r v i e w s , and r e a d i l y c o n v e r s a n t i n t h e E n g l i s h l anguage. P r o s p e c t i v e p a r t i c i p a n t s had t o p e r c e i v e t h e y were w o r k i n g s u c c e s s f u l l y towards r e c o v e r y , o r p e r c e i v e t h a t t h e y had a c h i e v e d r e c o v e r y ( r e c o v e r e d ) . A d d i t i o n a l l y , p a r t i c i p a n t s ' h a d t o be w i l l i n g t o make a commitment o f t i m e and energy. The s e l e c t i o n c r i t e r i a were u p h e l d w i t h t h e f o l l o w i n g e x c e p t i o n . A t t h e t i m e o f t h e f i r s t i n t e r v i e w s i t seemed t h a t t h r e e o f t h e e l e v e n p a r t i c i p a n t s d i d n o t c o m p l e t e l y meet t h e s e l e c t i o n c r i t e r i a . R a i n e had o n l y been d i a g n o s e d f o r 6 months, and Monica and Susan communicated u n c e r t a i n l y as t o whether t h e y were r e c o v e r i n g . A t t h e t i m e , e ach o f t h e i n t e r v i e w s was 39 completed because the researcher had a sense that the perspectives offered by these " d i f f e r e n t " p a r t i c i p a n t s could inform the construction i n a way that the others d i d not. The three p a r t i c i p a n t s were coded as PA, PB, and PC. The three interview tapes were put aside at that time: they were not transcribed nor analyzed, and were brought into the study when the construction had been saturated by p a r t i c i p a n t s who met the s e l e c t i o n c r i t e r i a . It was l a t e r learned that a fourth p a r t i c i p a n t , A l l a n , d i d not f u l l y q u a l i f y according to the c r i t e r i a . He d i d not perceive himself i n recovery, but that was not c l e a r l y "heard" by the researcher u n t i l the second interview. Recruitment Care was taken to ensure a broad representation of knowledge. Therefore, e f f o r t s were made to r e c r u i t p a r t i c i p a n t s from various communities and l i f e o r i e n t a t i o n s . That i s , persons came to be p a r t i c i p a n t s through t h e i r r o l e as a person i n a community rather than as a: patient of a c e r t a i n c l i n i c ; or a member of a s p e c i f i c support group. This was done to ensure "maximum v a r i a t i o n " (Lincoln & Guba, 1985, p. 201) of the focus of inquiry within the purposive t h e o r e t i c a l boundaries. Prospective p a r t i c i p a n t s were r e c r u i t e d through word of mouth and through r e f e r r a l by friends, colleagues and p a r t i c i p a n t s . An information l e t t e r (see Appendix A) was provided e i t h e r through the r e f e r r i n g person, or when the prospective p a r t i c i p a n t contacted the researcher. The information l e t t e r provided background information about the study, i d e n t i f i e d the s e l e c t i o n c r i t e r i a , and i n v i t e d interested persons to contact the researcher for further information or to volunteer. The intent was that p a r t i c i p a n t s knowingly and f r e e l y volunteered to take part i n the 40 s t u d y , a n d t h u s t h e y w e r e s e l f - s e l e c t e d . A n i n f o r m e d c o n s e n t f o r m ( s e e A p p e n d i x B ) was s i g n e d p r i o r t o a c t u a l p a r t i c i p a t i o n . D e m o g r a p h i c s D e m o g r a p h i c a l i n f o r m a t i o n was o b t a i n e d d u r i n g t h e f i r s t i n t e r v i e w t h r o u g h a n o p e n , i n f o r m a l i n t e r v i e w f o r m a t , a n d i s p r e s e n t e d b e l o w . T h e r e w e r e e l e v e n C a u c a s i a n p a r t i c i p a n t s i n t h i s s t u d y : e i g h t f e m a l e s a n d 3 m a l e s . A l l p a r t i c i p a n t s w e r e f r o m B r i t i s h C o l u m b i a : t w o w e r e f r o m a l a r g e c i t y , f i v e w e r e f r o m a m e d i u m s i z e d c i t y , a n d f o u r w e r e f r o m a s m a l l t o w n . A t t h e t i m e o f t h e f i r s t t w o i n t e r v i e w s , t w o p a r t i c i p a n t s w e r e a t t e n d i n g t h e s a m e p h y s i c i a n ( o n e h a d c h a n g e d p h y s i c i a n s b y t h e t h i r d i n t e r v i e w ) . T h e r e was n o m o r e s i m i l a r i t y b e t w e e n t h o s e t w o 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 t h r e c o v e r i n g f r o m C F S t h a n t h e r e was a m o n g s t t h e t o t a l p a r t i c i p a n t g r o u p . A n o t h e r i n t e r e s t i n g p o i n t was t h a t i n t w o o f t h e c o m m u n i t i e s , s o m e o f t h e p a r t i c i p a n t s k n e w o n e a n o t h e r , b u t t h e y h a d l i t t l e o r n o a s s o c i a t i o n . A t t h e i r f i r s t i n t e r v i e w s ( J u n e t o A u g u s t , 1 9 9 5 ) t h e a g e o f p a r t i c i p a n t s r a n g e d f r o m 29 y e a r s t o 56 y e a r s w i t h a m e a n a g e o f 42 y e a r s . T h e a g e o f o n s e t o f s y m p t o m s v a r i e d b e t w e e n 24 y e a r s a n d 50 y e a r s w i t h a m e a n a g e o f 3 5 . 7 y e a r s . T h e t i m e f r o m o n s e t o f s y m p t o m s t o r e c e i v i n g a m e d i c a l d i a g n o s i s v a r i e d f r o m 1 m o n t h t o 8 y e a r s . T e n o f t h e 11 p a r t i c i p a n t s w e r e m e d i c a l l y d i a g n o s e d w i t h i n t h r e e y e a r s o f o n s e t o f s y m p t o m s . O f t h e 5 p a r t i c i p a n t s who p e r c e i v e d t h e m s e l v e s r e c o v e r e d , t h e l e n g t h o f t i m e f r o m o n s e t o f s y m p t o m s t o p e r c e i v e d r e c o v e r e d s t a t e v a r i e d f r o m 5 y e a r s t o 10 y e a r s , w i t h a m e a n o f 7 . 6 y e a r s . A l l p a r t i c i p a n t s r e p o r t e d t h e i r p r e - i l l n e s s a c t i v i t y l e v e l a s e x t r e m e l y a c t i v e ( t h e r e s e a r c h e r c a l l e d i t " s u p e r g o " . ) S i x p a r t i c i p a n t s r e p o r t e d a n i n s i d i o u s o n s e t o f s y m p t o m s ; w h e r e a s , 5 r e p o r t e d a s u d d e n 41 o n s e t . T h e m o s t t r o u b l e s o m e s y m p t o m s w e r e r e p o r t e d a s c o g n i t i v e d y s f u n c t i o n , f a t i g u e , a n d m u s c l e a n d / o r j o i n t p a i n . A l l p a r t i c i p a n t s h a d p o s t s e c o n d a r y e d u c a t i o n . O n e h a d a t e c h n i c a l d i p l o m a , 7 h a v i n g b a c c a l a u r e a t e l e v e l e d u c a t i o n , 2 w i t h m a s t e r ' s d e g r e e s , a n d 1 P h D . F i v e p a r t i c i p a n t s w e r e w o r k i n g f u l l t i m e , 1 was w o r k i n g i n t e r m i t t e n t l y , 1 was d o i n g v o l u n t e e r w o r k . T h r e e w e r e o n l o n g t e r m d i s a b i l i t y . T a b l e 1, b e l o w s u m m a r i z e s m o s t o f t h e d e m o g r a p h i c a l d a t a . T a b l e 1: Summary o f D e m o g r a p h i c a l D a t a ( P a r t i c i p a n t s i d e n t i f i e d b y n u m b e r o r l e t t e r t o p r o t e c t a n o n y m i t y . ) P1 P2 P3 P4 P5 P6 P7 P 8 PA PB P C A g e o n f i r s t i n t e r v i e w 52 47 39 56 29 42 55 47 36 34 30 A g e a t o n s e t o f s y m p t o m s 42 40 26 50 24 30 47 44 35 30 25 O n s e t (S = s u d d e n , I = i n s i d i o u s ) S I I S I I I S S S I T i m e f r o m s y m p t o m o n s e t t o m e d i c a l d i a g n o s i s 1 y r . < 1 y r . 8 y r . < 2 y r . <1 y r . 3 y r . 1mo. 1mo. 1 y r . 2 y r . 3 y r . Y e a r s f r o m s y m p t o m o n s e t t o p e r c e i v e d r e c o v e r y (NR - n o t r e c o v e r e d ) 10 5 8 NR NR 10 5 NR NR NR NR T h r e e m o s t t r o u b l e s o m e s y m p t o m s : ( F = f a t i g u e , C = c o g n i t i v e d y s f u n c t i o n , MJ= m u s c l e / j o i n t p a i n , G I= g a s t r o - i n t e s t i n a l , S= s e n s i t i v i t i e s . c Gl F F F F F C C C C F F C M J Gl C C M J F F M J M J M J M J C M J M J Gl F S M J S T h e R e s e a r c h e r - P a r t i c i p a n t R e l a t i o n s h i p I n k e e p i n g w i t h t h e p h i l o s o p h i c a l a s s u m p t i o n s o f t h e c o n s t r u c t i v i s t ( n a t u r a l i s t i c ) p a r a d i g m ( G u b a & L i n c o l n , 1989 & 1 9 9 4 , a n d L i n c o l n & G u b a , 42 1985), t h i s researcher was the only instrument and the only interviewer. A l l p a r t i c i p a t i o n was voluntary, and interview scheduling was c o l l a b o r a t i v e l y established. Lincoln & Guba (1985) state that the q u a l i t y of the data obtained i s strongly r e l a t e d to the q u a l i t y of the r e l a t i o n s h i p between the researcher and each p a r t i c i p a n t . In t h i s study the researcher-p a r t i c i p a n t r e l a t i o n s h i p was e g a l i t a r i a n , overt, r e s p e c t f u l , and honest -q u a l i t i e s which the researcher highly valued. P a r t i c i p a n t s demonstrated t h e i r sense of personal power i n the r e l a t i o n s h i p through such actions as changing appointment times, comfortably disagreeing with i n t e r p r e t a t i o n s the researcher presented, or through r e s t a t i n g a point u n t i l they were c e r t a i n the researcher c l e a r l y understood t h e i r perspective. A fundamental component inherent i n a q u a l i t y researcher-participant r e l a t i o n s h i p i s t r u s t : "In a very r e a l sense the ultimate c r e d i b i l i t y of the outcomes depends upon the extent to which t r u s t has been established" (p. 257). "Establishment of t r u s t i s a developmental task, that must begin at the very f i r s t contact and continue unabated throughout the term of the inquiry" (p.256). In t h i s study, the researcher f e l t a sense of t r u s t with and from each p a r t i c i p a n t . Closely r e l a t e d with the notion of developing t r u s t were the r e l a t i o n a l and communication s k i l l s used by the researcher i n forming a q u a l i t y r e l a t i o n s h i p with each p a r t i c i p a n t . This was an area i n which the researcher perceived she d i d well. Interviews were comfortable and productive. I t was evident that the researcher's way of being f i t well with the philosophical requirements of the paradigm, and enhanced the q u a l i t y of the r e l a t i o n s h i p as intended when working i n the c o n s t r u c t i v i s t paradigm. Data C o l l e c t i o n In c o n s t r u c t i v i s t ( n a t u r a l i s t i c ) inquiry using the hermeneutic 43 d i a l e c t i c process, data c o l l e c t i o n and analysis are simultaneously and i n t e r a c t i v e l y ongoing (Lincoln & Guba, 1985; Guba and Lincoln, 1989). For the purpose of c l a r i t y and s i m p l i c i t y , they w i l l be discussed separately i n t h i s report. Taped and transcribed interviews provided the main source of data f o r t h i s study. Eight of the eleven p a r t i c i p a n t s were interviewed three times and three persons had two interviews. Contact was l o s t with David when he moved across the country, thus he was unavailable for the t h i r d interview. The l a s t two p a r t i c i p a n t s were interviewed s p e c i f i c a l l y to receive feedback on the working hypothesis, and they were interviewed twice. The f i r s t and second interviews - the main data gathering sessions - took place between May 25 and August 18, 1995. T h i r t y interviews which t o t a l l e d approximately 1,800 minutes of taped interviews were transcribed into 354 pages of data. The researcher transcribed a l l tapes, which proved to be useful on several counts. Having heard the discussion before, the researcher could more r e a d i l y decipher mumbled or soft voices. Also, i t served as a valuable a n a l y t i c a l t o o l . Except for the f i r s t p a r t i c i p a n t , whose f i r s t and second interviews were consecutive i n the data gathering-analysis process, the other interviews were scheduled according to a v a i l a b i l i t y of the p a r t i c i p a n t and to t r a v e l l i n g requirements of the researcher. Attempts were made to schedule out of town interviews together. T y p i c a l l y the p a r t i c i p a n t s were people who led busy l i v e s and who needed to protect t h e i r energy. Thus, with some pa r t i c i p a n t s , a month or more transpired between the f i r s t and second interviews. The researcher believes that t h i s sequencing of interviews proved useful to the developing construction. By the time a pa r t i c i p a n t ' s second interview took place, the researcher had t y p i c a l l y 44 interviewed several others, and could bring t h e i r constructions to the pa r t i c i p a n t for feedback. The focus i n each of the three interviews d i f f e r e d somewhat, which i s described below. The f i r s t interview was unstructured and open. The researcher strove to be void of expectations or assumptions i n r e l a t i o n to the p a r t i c i p a n t ' s perspective, and endeavoured to f a c i l i t a t e the p a r t i c i p a n t i n expressing hi s or her construction. Typical researcher communications during the f i r s t interview were open questions or statements such as: " T e l l me about your recovery from CFS", "What has i t been l i k e for you?", or "What have you found useful?" General leads were used a great deal. With some pa r t i c i p a n t s , there were pages of t r a n s c r i p t during which only the pa r t i c i p a n t spoke (other than for researcher general leads). Summarizing was used i n order to c l a r i f y or to v a l i d a t e understanding. For example, "It ' s my understanding that....Is that correct?" "Have I heard you c o r r e c t l y . . . ? " After the p a r t i c i p a n t had exhausted t h e i r story of t h e i r emic construction, the researcher posed questions r e l a t e d to other p a r t i c i p a n t s ' constructions or to the l i t e r a t u r e . For example: "Some par t i c i p a n t s have mentioned....How does that r e l a t e to your experience?" The second interview was more t h e o r e t i c a l l y focused and somewhat more structured than the f i r s t . The purpose always was to hear the p a r t i c i p a n t ' s construction or reconstruction without influence from the interviewer. The researcher c o n s i s t e n t l y started the second interview with an i n v i t a t i o n f o r the p a r t i c i p a n t to comment on or add to t h e i r story of the f i r s t interview. In the second interview, there also was t h e o r e t i c a l checking about other p a r t i c i p a n t s ' s p e c i f i c points and on the working hypothesis - the developing construction. The t h i r d interview was highly t h e o r e t i c a l l y focused. It took place 45 a f t e r the p a r t i c i p a n t had read a summary report (see Appendix C) of the findings. P a r t i c i p a n t s were asked to respond s p e c i f i c a l l y to that report. Some p a r t i c i p a n t s gave t h e i r opinions item by item, c l e a r l y o u t l i n i n g t h e i r view. Others needed more d i r e c t questions such as, "How d i d the discussion on Legitimizing compare with your perspective?" A data source which supplemented the interview t r a n s c r i p t s were the notes taken by the researcher during researcher-participant discussions. Interview notes provided a record of the interviewer's thoughts, inter p r e t a t i o n s , and "hunches" as she l i s t e n e d to the p a r t i c i p a n t ' s story. As well as providing information on the p a r t i c i p a n t s ' emic view, interview notes tended to "tap" the researcher's t a c i t knowledge, meeting one of the four s p e c i f i c a t i o n s basic to c o n s t r u c t i v i s t ( n a t u r a l i s t i c ) inquiry discussed e a r l i e r i n t h i s chapter. Interview notes served two a d d i t i o n a l purposes: (a) On occasions when the audiotape was d i f f i c u l t to hear, the notes helped f i l l i n unclear words; and (b) They helped to f a c i l i t a t e and val i d a t e the a n a l y t i c a l process and outcomes. An exception to the data gathering-analysis format (discussed above) occurred with regard to the three p a r t i c i p a n t s who d i d not " f i t " the c r i t e r i a : Raine, Monica, and Susan. The reader w i l l r e c a l l that Raine had only been diagnosed for s i x months, and that Susan and Monica were undecided as to whether they were recovering. At the time, the interview tapes were put aside u n t i l a learned decision could be made with regard to t h e i r contribution to the study. The researcher decided to pursue the data c o l l e c t i o n - a n a l y s i s process with q u a l i f y i n g p a r t i c i p a n t s before looking at "alternates". Later, when the construction had been saturated with q u a l i f y i n g p a r t i c i p a n t s , the three alternates (PA, PB, PC) were brought into the study. Their f i r s t interviews 46 were t r a n s c r i b e d and a n a l y z e d , and second i n t e r v i e w s were c a r r i e d o ut w i t h them a t t h a t t i m e . S t a r t i n g w i t h a c o n c e n t r a t e d e x a m i n a t i o n o f t h e d a t a p r o v i d e d by t h e p a r t i c i p a n t s who met t h e s e l e c t i o n c r i t e r i a , was u s e f u l . I t gave a c o n s i s t e n t f o u n d a t i o n f o r t h e c o n s t r u c t i o n o f h e a l i n g pathways towards r e c o v e r y from CFS. H a v i n g been m e d i c a l l y d i a g n o s e d f o r a t l e a s t two y e a r s was u s e f u l because t h e p a r t i c i p a n t s had some e x p e r i e n c e a t w o r k i n g t h r o u g h t h e c h a l l e n g i n g maze o f ups and downs w h i c h was so t y p i c a l o f t h e CFS i l l n e s s e x p e r i e n c e . I t was e q u a l l y d e s i r a b l e f o r p a r t i c i p a n t s t o have a sense o f achievement i n r e c o v e r y . Those p a r t i c i p a n t s who were r e c e n t l y d i a g n o s e d , and t h o s e who d i d n o t p e r c e i v e t h e y were r e c o v e r i n g p r e s e n t e d a sense o f urg e n c y t o be c u r e d , and f r u s t r a t i o n a t n o t b e i n g c u r e d . The most v a l u a b l e c o n t r i b u t i o n o f t h e s e " a l t e r n a t e s " was t h e r e a l i t i e s t h e y p r o v i d e d i n t h e i r f i r s t hand d e s c r i p t i o n o f what s t r u g g l i n g i n t h e maze was l i k e . The f o l l o w i n g memo w r i t t e n when i t was d e c i d e d t o b r i n g t h e t h r e e " a l t e r n a t e " p a r t i c i p a n t s i n t o t h e s t u d y , r e f l e c t s t h i s p o i n t : A f t e r t h e [ f i r s t ] i n t e r v i e w , I f e l t R a i n e ' s s t o r y would be u s e f u l i n my r e s e a r c h . I t gave me i n f o r m a t i o n from t h e p e r s p e c t i v e o f a p e r s o n s t r u g g l i n g i n t h e p r o c e s s towards r e c o v e r y . I had a hunch t h a t u n d e r s t a n d i n g " t h a t " t i m e i n a p e r s o n s r e c o v e r y , as i t i s v i e w e d i n p r o c e s s r a t h e r t h a n a t some l a t e r t i m e would be m e a n i n g f u l i n d e v e l o p i n g knowledge about h e a l i n g pathways (June 15. 1995). A n a l y s i s : C o n s t a n t C o m p a r a t i v e Method L i n c o l n and Guba (1985) s t a t e t h a t c o n s t a n t c o m p a r a t i v e a n a l y s i s " a d v o c a t e d by G l a s e r and S t r a u s s ( 1 9 6 7)...provides an e x c e l l e n t f i t w i t h [ t h e c o n s t r u c t i v i s t ' s need f o r ] c o n t i n u o u s and s i m u l t a n e o u s c o l l e c t i o n and p r o c e s s i n g o f d a t a " (p. 335) . I t i s e s s e n t i a l l y a s y n t h e t i c , i n d u c t i v e p r o c e s s (p. 333) . L i n c o l n and Guba (1985) e x p l i c a t e G l a s e r and S t r a u s s ' s c o n s t a n t c o m p a r i s o n a n a l y s i s method (pp. 339-350), and i t was t h a t p r o c e s s 47 w h i c h was i n t e n d e d t o p r o v i d e d i r e c t i o n f o r d a t a a n a l y s i s i n t h i s s t u d y . T h e d i r e c t i o n p r o v i d e d b y L i n c o l n a n d G u b a ( 1 9 8 5 ) p r o v e d i m p l i c i t a n d i n c o m p l e t e , w h i c h f o r t h i s r e s e a r c h e r l e d t o a g r e a t d e a l o f q u a n d a r y a n d s e a r c h i n g . A s l i g h t d i v e r s i o n w i l l b e i n d u l g e d t o e x p r e s s t h e c o g n i t i v e d i s s o n a n c e e x p e r i e n c e d b y t h i s n e o p h y t e r e s e a r c h e r . I t i s t h e o p i n i o n o f t h i s r e s e a r c h e r t h a t s c h o l a r l y r e s o u r c e s f o r t h e u s e o f c o n s t a n t c o m p a r a t i v e a n a l y s i s i n t h e c o n s t r u c t i v i s t p a r a d i g m l a c k c o n c e p t u a l a n d p r o c e d u r a l c l a r i t y . I n t r y i n g t o k e e p t r u e t o t h e p h i l o s o p h i c a l a x i o m s o f t h e c o n s t r u c t i v i s t p a r a d i g m a n d n o t t o " m u d d l e m e t h o d s " w i t h o u t a d e l i b e r a t e d e c i s i o n t o d o s o , t h i s r e s e a r c h e r s t r o v e t o u n d e r s t a n d how u s i n g t h e a n a l y t i c a l t o o l f r o m o n e q u a l i t a t i v e r e s e a r c h m e t h o d o l o g y ( g r o u n d e d t h e o r y ) c o u l d h o n o u r a b l y b e u s e d i n a n o t h e r p a r a d i g m ( c o n s t r u c t i v i s t ) . R e a s s u r a n c e was s o u g h t t h r o u g h f o c u s s i n g o n t h e s t a t e d o u t c o m e : i n c o n s t r u c t i v i s t p a r a d i g m i n q u i r y , t h e o u t c o m e i s " t h e c o n s t r u c t i o n " ; w h e r e a s , i n g r o u n d e d t h e o r y r e s e a r c h , t h e o u t c o m e i s " t h e o r y " . B u t , a q u e s t i o n k e p t c o m i n g u p : "How a r e t h e y d i f f e r e n t ? " E a c h t i m e t h e r e s e a r c h e r b e l i e v e d s h e u n d e r s t o o d t h e a n s w e r , i t k e p t s l i p p i n g a w a y . I t s e e m e d t h a t l e a r n e d s c h o l a r s t e n d e d t o u s e t h e m a s s i m i l a r c o n c e p t s . L i n c o l n a n d G u b a ( 1 9 8 5 ) s p o k e i n c o n s i s t e n t l y a b o u t t h e i r i n t e n t i o n s , a s was e v i d e n t i n t h e f o l l o w i n g q u o t a t i o n s f r o m t h e i r c h a p t e r r e c o m m e n d i n g t h a t " t h e m e t h o d o f c o n s t a n t c o m p a r i s o n p r o v i d e s a n e x c e l l e n t f i t w i t h [ t h e c o n s t r u c t i v i s t ' s n e e d f o r ] c o n t i n u o u s a n d s i m u l t a n e o u s c o l l e c t i o n a n d p r o c e s s i n g o f d a t a " ( p . 3 3 5 ) . I t s h o u l d b e n o t e d t h a t G l a s e r a n d S t r a u s s [ 1 9 6 7 ] d o n o t a d d r e s s t h e m s e l v e s t o w o r k i n g w i t h i n t h e n a t u r a l i s t i c p a r a d i g m ; i n d e e d t h e y a r g u e ( p . 3 ) t h a t a m a j o r p u r p o s e o f t h e o r y i n t h e f i e l d , s o c i o l o g y , i s " t o e n a b l e p r e d i c t i o n a n d e x p l a n a t i o n o f b e h a v i o u r " , a p u r p o s e w i t h w h i c h t h e n a t u r a l i s t p r o b a b l y w o u l d n o t a g r e e . . . . T h e r e a d e r s h o u l d b e a w a r e t h a t G l a s e r a n d S t r a u s s a r e d e s c r i b i n g , i n t h e c o n s t a n t c o m p a r a t i v e m e t h o d , a m e a n s f o r d e r i v i n g ( g r o u n d i n g ) t h e o r y , 48 not simply a means for processing data....Our i n t e r e s t i s not p a r t i c u l a r l y i n theory development.... I t [delineating category properties] begins to take on the a t t r i b u t e s of an explanatory theory, or at l e a s t (and more to the point for the n a t u r a l i s t ) a p a r t i c u l a r construction of the s i t u a t i o n at hand....If, i n t h i s quotation [on integ r a t i n g data c o l l e c t i o n and a n a l y s i s ] , the word "theory" i s replaced by "construction", and " s o c i o l o g i s t " by " n a t u r a l i s t i c inquirer", the concept w i l l f i t present purposes [data processing i n c o n s t r u c t i v i s t studies] exactly. As i s evident above, sometimes they spoke of theory and construction as i f they were interchangeable; whereas, at other times they spoke of them as i f they were quite d i s t i n c t . This researcher was l e f t with much quandary, and so were Lincoln and Guba: " I t must be c l e a r to the reader that the a r t of n a t u r a l i s t i c data processing i s far from well developed" (p. 354) . That i s a statement with which t h i s researcher agrees, and she would add that no l i t e r a t u r e c l a r i f i e s or explicates i t . Authors (Sandelowski, Davis, & Harris, 1989) who wrote about the use of c o n s t r u c t i v i s t inquiry tended to d r i f t o f f into grounded theory i n t h e i r explanations. Having now explained the uncertainties experienced by t h i s researcher as to the inconsistent and incomplete d i r e c t i o n that the scholarly world provides for data analysis i n the c o n s t r u c t i v i s t paradigm, she w i l l resume the discussion of data analysis used i n t h i s study. Three p r i n c i p l e s guided the researcher throughout t h i s process: 1. Be true to the data. 2. " I t i s the ontological p o s i t i o n that most d i f f e r e n t i a t e s constructivism from other... paradigms" (Guba & Lincoln, 1994). 3. Leave a d e t a i l e d "audit t r a i l " (Guba & Lincoln, 1989, p. 243) . Operationalized, these p r i n c i p l e s directed the researcher to ensure that the study was conducted and reported i n such a way that the data formed the findings, that each p a r t i c i p a n t ' s r e a l i t y was expressed, and that d e t a i l e d accounts were kept i n r e l a t i o n to process, l o g i c , and decision-making. 49 As stated e a r l i e r , as far as possible, the constant comparative analysis method as explicated by Lincoln and Guba (1985) was used. Other resources were drawn on to expand Lincoln and Guba's d e s c r i p t i o n or to f i l l i n when t h e i r d i r e c t i o n s were lacking or unclear to t h i s researcher. Of p a r t i c u l a r value were: Corbin (1986a, 1986b); Erlandson, Harris, Skipper, & A l l a n (1993); Glaser, 1978; Glaser & Strauss (1967); Morse (1994); Munhall & O i l e r (1986); Stern (1994): and Strauss & Corbin (1990). A d e s c r i p t i o n of the data analysis process which the researcher used i n t h i s study, follows. The constant comparative analysis process was composed of several operations which were simultaneously and dynamically ongoing throughout data c o l l e c t i o n and analysis (Lincoln & Guba, 1985). The essence of the process was ongoing comparisons of p a r t i c i p a n t to s e l f , p a r t i c i p a n t to other p a r t i c i p a n t s , behaviour to behaviour, concept to concept, and so fo r t h . The ever present questions were, "How i s t h i s s i m i l a r ? How i s t h i s d i f f e r e n t ? " Although i n r e a l i t y , the process was c i r c u l a r , the data analysis component w i l l be presented here i n a l i n e a r format of two main operations: u n i t i z i n g (coding incidents), and categorizing and conceptual development. U n i t i z i n g U n i t i z i n g involved breaking the interview t r a n s c r i p t s down into "units of information which [would], sooner or l a t e r , serve as the basis for d e f i n i n g categories" (Lincoln & Guba, 1985, p. 344). A "unit" was defined as "the smallest piece of information about something that [could] stand by i t s e l f " (p. 345) and must be "aimed at some understanding...that the inquirer needs to have" (p. 345) - i n t h i s study, healing pathways towards recovery from CFS. Although Lincoln and Guba suggested d i r e c t entry of each unit onto index cards or computer, the researcher used the 50 following intermediary step borrowed from Corbin (1986b). Items were i d e n t i f i e d and underlined i n the t r a n s c r i p t . This was done on an i n t u i t i v e basis drawing on e x p l i c i t and t a c i t knowledge gained from "knowing" and from the interview. The question was continuously asked, "Does t h i s inform about healing pathways towards CFS?" In the margin, entries were made i d e n t i f y i n g an "abstracted code" (an i n i t i a l concept label) and a " t h e o r e t i c a l note" (relevant thoughts and reminders) i n r e l a t i o n to the s p e c i f i c u n i t . For example, the following i s a unit from Florence's t r a n s c r i p t : "My doctor knew me and believed i n me, that I was not one to avoid things." In the margin the researcher wrote, "Affirmed/Believed" (the abstracted code) and " I t seems important for p a r t i c i p a n t to be affirmed by doctor - power?" (the t h e o r e t i c a l note). The abstracted codes ei t h e r were substantive, the actual words of the p a r t i c i p a n t (believed), or words that represented explanatory meaning for the researcher (affirmed). After the e n t i r e t r a n s c r i p t was itemized and coded (as described above), tentative categories evolved from the abstracted codes, which brought the researcher to the next step - categorizing. Categorizing &-Conceptual Development Several e s s e n t i a l tasks were necessary when categorizing the u n i t s into "a set that provide[d] a 'reasonable' construction of the data" (Lincoln & Guba, 1985, p.347). These tasks included: (a) e s t a b l i s h i n g p r o v i s i o n a l categories which included those units which seemed to r e l a t e to the same content or concept, (b) e s t a b l i s h i n g rules for i n c l u s i o n i n each category, (c) ensuring the i n t e r n a l consistency of the units i n each category (p. 347). The abstracted codes entered at the time of u n i t i z i n g were used as a preliminary step i n categorizing. As recommended by Lincoln and Guba 51 ( 1 9 8 5 ) , the researcher i n i t i a l l y assigned units into "yet-to-be-named" or t e n t a t i v e l y named categories on a t a c i t knowledge basis of s i m i l a r i t y , " l o o k - a l i k e " or " f e e l - a l i k e " (p. 3 4 7 ) . Under tentative category l a b e l s , the units were entered into the computer. A source code was included with each item for easy i d e n t i f i c a t i o n . For example, " 1 , 1 , 3 , 2 7 " was a source code which represented "participant 1, interview number 1 , page 3 , l i n e 2 7 " . With each entry, constant comparisons were made between the unit being assigned, units already i n the category, and units i n possibly r e l a t e d categories. Continuing with the above example from Florence's t r a n s c r i p t , that item became part of a category l a b e l l e d "Support/ Believed Me/Believed In Me". Another item placed i n that category was: "I think that i s part of the reason my doctor believed i n me. Because he knew what sort of a person I was. He knew I wasn't a hypochondriac" (Florence). After categorizing each item of the f i r s t p a r t i c i p a n t ' s t r a n s c r i p t , the researcher examined each category to i d e n t i f y the properties which seemed to characterize the units i n that category. A "rule for i n c l u s i o n " (Lincoln & Guba, 1 9 8 5 , p. 3 4 8 ) was written. For example, the above category i n the example from Florence's t r a n s c r i p t was renamed "Believed Me", and some of the i n c l u s i o n c r i t e r i a were: "Who, who not; affirmations; concern, caring; believed me and i n me; and e f f e c t on person's CFS". Subsequent units were then assigned to the category "on the basis of i t s f i t to the r u l e " (p. 3 4 8 ) . Each t r a n s c r i p t was u n i t i z e d and categorized as described above. With each, comparisons were also written i n the margins. Memos were written ongoingly about the comparisons, and about what they could mean i n r e l a t i o n to the focus of inquiry. To a degree, categories were s i m i l a r from p a r t i c i p a n t to p a r t i c i p a n t , but some were d i f f e r e n t . 52 As data processing progressed, categories were checked for i n t e r n a l homogeneity and external heterogeneity. The data was massaged to f i n d the most natural pattern of f i t . Units were moved from one category to another. Relationships between categories became evident, and such categories were linked to demonstrate t h e i r i n t e r a c t i o n . Some categories were found to be two. Two categories seemed better combined as one. Categories which were unclear, incomplete, or missing were "earmarked for follow-up as part of the continuous data collection/processing sequence" (Lincoln & Guba, 1985 , p.3 4 9 ) . A l l along, the working hypothesis was "evolving", and by the f i f t h p a r t i c i p a n t ' s f i r s t interview, i t took a form that could be described and diagrammed. The working hypothesis was checked with the pa r t i c i p a n t s , and much feedback, e x p l i c a t i o n , expansion, and refinement ensued. During the next while, numerous versions of the working hypothesis emerged. A matrix was drawn to track each p a r t i c i p a n t ' s path through the major concepts, and new meanings and connections as well as numerous questions were drawn. Some questions i n a memo written July 28 , 1995 were: "Why does a person become blocked? Does i t r e l a t e to b e l i e f system? personal power? Does 'the reason' f i t with each participant? How? Where? A factor i n outcomes seems to be 'choosing'. How are choices made?" At that time i t was p a r t i c u l a r l y enlightening to r e f l e c t on differences. An example of a productive query was: "Why did Annette have to go back to work? And why does A l l a n f i g h t to stay on d i s a b i l i t y ? " The pattern continued with new working hypothesis, more diagrams, and more feedback from the p a r t i c i p a n t s . The researcher worked with nine p a r t i c i p a n t s to construct a working hypothesis which seemed consensual. At that time, i t was tested on two new par t i c i p a n t s , which proved to be valuable i n affirming the hypothesis and 53 i n e x p l i c a t i n g i t further. The construction f e l t s o l i d . The focus then was turned towards progressing i n the l e v e l s of abstraction from substantive items, to categories, to t h e o r e t i c a l constructs, and to core construct (Munhall & O i l e r , 1986). The data were read and reread - organized and reorganized. F i n a l l y , the construction was complete! The core construct was i d e n t i f i e d as "the p a r t i c i p a n t ' s changing r e l a t i o n s h i p with CFS" which represented "the healing pathway towards recovery form CFS". The major constructs (processes) were "choices" and "the three r e l a t i o n a l processes: l e g i t i m i z i n g , putting the i l l n e s s i n i t s place, and redefining healthy s e l f " . Following Florence's item i n the "Believed Me" category, i t now became one item i n the major r e l a t i o n a l process of " l e g i t i m i z i n g " . P a r t i c i p a n t s gave supportive and enlightening feedback to the summary report (see Appendix C) of the construction. The analysis process was complete, and then writing the findings began. Trustworthiness To the best of the researcher's knowledge, the four trustworthiness c r i t e r i a established for q u a l i t a t i v e studies: c r e d i b i l i t y , t r a n s f e r a b i l i t y , dependability, and c o n f i r m a b i l i t y were upheld. At the same time, i t must be acknowledged that q u a l i t a t i v e researchers warn against "the u n c r i t i c a l a p p l i c a t i o n of r u l e s " (Sandelowski, 1993, p. 8) and make a "plea against the c o n s t i t u t i o n of a neo-orthodoxy i n the use of these c r i t e r i a " (Lincoln & Guba, 1985, p. 330). It i s the opinion of the writer that trustworthiness of the researcher and researcher as human instrument are of paramount importance i n q u a l i t a t i v e studies, and p a r t i c u l a r l y i n c o n s t r u c t i v i s t ( n a t u r a l i s t i c ) inquiry which "operates as an open system" (Lincoln & Guba, 1985, p. 329). In t h i s study, trustworthiness of the human instrument was represented i n 54 such q u a l i t i e s as i n t e g r i t y , expertise i n interviewing, c o l l a b o r a t i v e approach, openness to d i f f e r i n g values and views, and s e n s i t i v i t y to the intent and meaning of verbal and non-verbal communication. The researcher sub j e c t i v e l y perceived herself to have the above q u a l i t i e s , and operationalized them throughout t h i s study. From an objective perspective, the researcher has had years of experience interviewing, mainly i n mental health and nursing education. A d d i t i o n a l l y , before commencing data gathering, the researcher wrote her personal perspectives on the focus of inquiry (see Appendix D) to serve as a method of accounta b i l i t y i n r e l a t i o n to any possible influence on outcomes. The f i r s t and second interviews were audio taped and transcribed, and these along with the researcher's interview notes, memos, and journal entries provide v a l i d a t i o n for a c c o u n t a b i l i t y of the human instrument and trustworthiness of the inquiry. An add i t i o n a l method employed to ensure researcher trustworthiness was debr i e f i n g with f a c u l t y advisors. An audit t r a i l was maintained throughout the inquiry so as to f a c i l i t a t e assessment of trustworthiness, e s p e c i a l l y , dependability of the process of the inquiry, and c o n f i r m a b i l i t y of the product of the inquiry. Methods used to maintain an audit t r a i l include: raw data (including audio tapes, t r a n s c r i p t s , and interviewer notes), records of the analysis and synthesis process, process memos written throughout the inquiry, the log of a c t i v i t i e s , and r e f l e x i v e j o u r n a l l i n g . C r e d i b i l i t y of the findings was established throughout the inquiry process through the use of member checks. A d d i t i o n a l l y , a f t e r the researcher worked with the f i r s t nine p a r t i c i p a n t s to develop the construction, two new pa r t i c i p a n t s were interviewed f o r the purpose of checking i t s c r e d i b i l i t y . F i n a l l y , a summary report (see Appendix C) was 55 c i r c u l a t e d t o t e n p a r t i c i p a n t s ( c o n t a c t w i t h D a v i d h a d b e e n l o s t ) , a n d t h e i r r e s p o n s e s w e r e a f f i r m a t i v e t o t h e c o n s t r u c t i o n . T h e r e s e a r c h e r t a k e s n o t e o f S a n d e l o w s k i ' s ( 1 9 9 3 ) w a r n i n g i n r e l a t i o n t o t e r m i n a l member c h e c k s t h a t : " M e m b e r s m a y . . . n o t b e i n t h e b e s t p o s i t i o n t o c h e c k t h e a c c u r a c y o f a n a c c o u n t . T h e y may h a v e f o r g o t t e n t h e i n f o r m a t i o n t h e y p r o v i d e d o r t h e m a n n e r i n w h i c h i t was p r o v i d e d " ( p . 6 ) . W h i l e m e m o r y was a c h a l l e n g e f o r s e v e r a l o f t h e p a r t i c i p a n t s i n t h i s s t u d y , a n d t h e y m i g h t n o t h a v e r e m e m b e r e d s a y i n g s o m e t h i n g , t h e i r t r u s t i n t h e r e s e a r c h e r was e v i d e n t , a n d t h e r e s p o n s e t o t h e s u m m a r y r e p o r t w a s s u p p o r t i v e . A n n e t t e s a i d , " T h e s u m m a r y e x p r e s s e d i t w e l l , how we a l l h a v e o u r i n d i v i d u a l w a y s , b u t t h a t we h a v e a common way o f g e t t i n g t h r o u g h t h i s i l l n e s s . " T h e r e s e a r c h e r b e l i e v e s t h a t t h e m o s t i m p o r t a n t c r i t e r i a i n d i c a t i v e o f t r u s t w o r t h i n e s s o f a n i n q u i r y r e m a i n s t h e h o n e s t y , i n t e g r i t y , s e n s i t i v i t y , a n d a u t h e n t i c i t y o f t h e r e s e a r c h e r . T r a n s f e r a b i l i t y i n c o n s t r u c t i v i s t ( n a t u r a l i s t i c ) s t u d i e s i s a d e c i s i o n l e f t f o r t h e p o t e n t i a l u s e r o f t h e f i n a l c o n s t r u c t i o n , t h e i n q u i r y o u t c o m e . B e c a u s e c o n t e x t i s b a s i c t o a n y k n o w l e d g e o r t r u t h , t h e p o t e n t i a l u s e r w i l l n e e d t o h a v e a m p l e i n f o r m a t i o n a b o u t t h e s t u d i e d c o n t e x t , a n d t h u s b e a b l e t o j u d g e t h e t r a n s f e r a b i l i t y o f t h e c o n s t r u c t i o n ( L i n c o l n & G u b a , 1 9 8 5 ) . I n t h e f i n d i n g s c h a p t e r o f t h i s r e p o r t , t h e r e a d e r w i l l f i n d a " t h i c k d e s c r i p t i o n " ( p . 1 2 5 , 2 1 7 , 3 5 9 ) o f t h e s t u d i e d c o n t e x t i n o r d e r t o j u d g e t r a n s f e r a b i l i t y . E t h i c a l C o n s i d e r a t i o n s T h e p r o p o s a l f o r t h i s s t u d y was a p p r o v e d b y 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 B e h a v i o r a l S c i e n c e s S c r e e n i n g C o m m i t t e e f o r R e s e a r c h a n d O t h e r S t u d i e s i n v o l v i n g Human S u b j e c t s , M a y , 1 9 9 5 . T h r o u g h o u t t h e i n q u i r y , e v e r y c o n s i d e r a t i o n was g i v e n t o s a f e g u a r d t h e p a r t i c i p a n t s ' r i g h t t o 56 c o n f i d e n t i a l i t y , anonymity, privacy, dignity, and personhood. Because t h i s study was informed by the c o n s t r u c t i v i s t ( n a t u r a l i s t i c ) paradigm, respect for the i n d i v i d u a l , t h e i r r i g h t s , and t h e i r emic view was assumed. The overt nature of the hermeneutic d i a l e c t i c process, the "continuous feedback, and feedforward" (Lincoln & Guba, 1985, p. 249), and the ongoing member checking process, ensured that each p a r t i c i p a n t was knowingly involved i n developing the consensual construction. As was natural for the researcher, a l l interactions were open, r e s p e c t f u l , and e g a l i t a r i a n . The researcher f e l t a sense of t r u s t with and from the p a r t i c i p a n t s . P r i o r to persons deciding to volunteer as a p a r t i c i p a n t i n t h i s study, they had the opportunity to read the information l e t t e r (See Appendix A) which discussed the nature of the study and what t h e i r commitment could mean for them. They were informed that t h e i r involvement was expected to be two or three interviews with an estimated t o t a l time commitment of three to four hours. Eight p a r t i c i p a n t s had three interviews, and three were interviewed twice. Total time that persons a c t u a l l y spent p a r t i c i p a t i n g i n the study was from three to f i v e hours. C o n f i d e n t i a l i t y was protected through several means. A l l data and reports were safeguarded when used by the researcher. When not i n use, they were locked i n a f i l i n g cabinet. Signed consent forms were kept separate from other data, and were independently locked. Audio-tape labels contained no p a r t i c i p a n t names, but were i d e n t i f i e d by code. During the actual interviews, only f i r s t names were used. A l l tapes were transcribed by the researcher. When they were transcribed, a pseudonym chosen by the pa r t i c i p a n t was used instead of the person's actual name. There was one exception. Don chose that h i s r e a l name be used. This was confirmed with 5 7 him on two occasions. Except for documents pertaining to Don, any written materials contained only the p a r t i c i p a n t s ' pseudonyms. During any discussions with f a c u l t y advisors only pseudonyms were used. In summary, the researcher was the only person who knew the actual i d e n t i t y of the pa r t i c i p a n t s . Each person was informed of t h i s f a c t , and were t o l d that they were free to discuss t h e i r interviews as they wished, but that no information about t h e i r p a r t i c i p a t i o n i n the study would be revealed by the researcher i n association with t h e i r name. Before commencing the f i r s t interview, p a r t i c i p a n t s had an opportunity to ask questions. At that time, the researcher also reviewed how c o n f i d e n t i a l i t y and anonymity would be upheld i n t h i s study. Pa r t i c i p a n t s were reminded that although every e f f o r t was made to uphold anonymity, i t was not possible to absolutely guarantee anonymity i n t h i s or any study. They were informed verbally, on the information sheet, and i n the informed consent that they could, without prejudice, withdraw from the study at any time. None did. When the p a r t i c i p a n t ' s questions were s a t i s f i e d and when the researcher f e l t comfortable that a l l information was c l e a r l y understood, the pa r t i c i p a n t and the researcher signed the informed consent form (See Appendix B). One copy was l e f t with the p a r t i c i p a n t , and one copy was stored i n a locked f i l e . No r i s k s to p a r t i c i p a n t s were anticipated as a consequence of taking part i n t h i s study, and none were encountered. I t was expected that persons who joined t h i s study would gain i n knowledge about working s u c c e s s f u l l y towards recovery, and that t h e i r experiences would be f u l f i l l i n g and empowering. Participants volunteered that such was indeed the case. This chapter has discussed the philosophical underpinnings of the c o n s t r u c t i v i s t ( n a t u r a l i s t i c ) paradigm which have been used i n t h i s 58 research inquiry. A d d i t i o n a l l y , methods and how they were treated i n t h i s study have been presented. With t h i s foundational understanding of the process of inquiry, the reader i s i n v i t e d to the next chapter, the findings. CHAPTER FOUR: THE FINDINGS RECOVERING FROM CFS: A STORY OF A CHANGING RELATIONSHIP This chapter w i l l present the findings to the research questions, "How do persons who have been medically diagnosed with CFS work successfully towards recovery? What healing pathways do they use?" As mentioned e a r l i e r , p a r t i c i p a n t s used the terms "healing pathways" and "recovery pathways" synonymously, therefore, these terms w i l l be used interchangeably i n t h i s report. This chapter presents an overview of the construction (healing pathways towards recovery from CFS), a c l a r i f i c a t i o n and e x p l i c a t i o n of "recovery" (including i d e n t i f i c a t i o n of the par t i c i p a n t s ' perceptions of t h e i r recovery status and a desc r i p t i o n of each p a r t i c i p a n t ' s personal meaning of the term), and a discussion of each of the two core processes of the construction: Choice Making and the changing r e l a t i o n s h i p between the person and the i l l n e s s , accomplished through the three Relational Processes. The chapter closes with a summary of t h i s research inquiry. Overview When pa r t i c i p a n t s discussed t h e i r CFS i l l n e s s experiences, they spoke as i f CFS was l i k e an unknown "Beast" which unexpectedly and f o r c e f u l l y intruded into t h e i r l i v e s . As the study progressed, the researcher and most pa r t i c i p a n t s came to r e f e r to CFS as the Beast. For example, Helene said, "I think of my Beast as an albatross." E i l e e n t o l d about a time when her symptoms reoccurred: "The Beast was taking over. I am just s t a r t i n g to emerge from the maze of the struggle with the Beast." Hence, the Beast analogy w i l l occasionally be used i n t h i s report. Like a Beast, CFS was so persistent, overwhelming and demanding that i t i n i t i a l l y dominated each pa r t i c i p a n t ' s being. As Helene said, "This i s an i l l n e s s you can't push 60 away." For some pa r t i c i p a n t s , the CFS intruder came suddenly into t h e i r l i v e s , as i s evident i n Florence's experience: " I t started out very quickly. I had absolutely no symptoms one day, and the next day I couldn't get out of bed....It was a sudden attack l i k e I had been run over by a t r a i n . " Rachel's experience was s i m i l a r : "I became sic k extremely quickly, i n a matter of minutes. I was i n the h o s p i t a l that evening." Other p a r t i c i p a n t s ' introduction to the CFS intruder was more in s i d i o u s . P r i o r to being diagnosed with CFS, Annette t o l d about a nine month ordeal of cold and f l u symptoms that defied i d e n t i f i c a t i o n despite numerous doctor's appointments and diagnostic t e s t s . Helene had a s i m i l a r experience: I have always been a very healthy person. I would never get the f l u . I would never get colds. But suddenly I was getting s i c k . I was getting everything that was going around and I would get sick....So a f t e r t h i s went on for a couple of months [I went to my doctor and said] "There i s something the matter with me", and I described to him what was happening, and he said, "You know I think you have CFS". Whether the i l l n e s s made a sudden or in s i d i o u s appearance, each p a r t i c i p a n t reached a point at which there was a recognition that he or she was unwell, and that there was something very seriously wrong. Rachel t o l d about r e a l i z i n g the seriousness of her i l l n e s s and that " i t [wasn't] going to go away i n three days". Or l i k e Helene said, "I couldn't understand why I wasn't getting well i n a couple of days. Like take two a s p i r i n s and go to bed. It didn't work. I had never been faced with anything l i k e t h i s before." Although some pa r t i c i p a n t s d i d not know the name of the intruder for quite some time, a l l had an awareness of the i l l n e s s f o r c i n g i t s way into t h e i r being. Participants had no option but to acknowledge the intruder, and thus the r e l a t i o n s h i p between the person and CFS began. At that beginning point, p a r t i c i p a n t s described an a l l encompassing presence 61 of the i l l n e s s . I t dominated t h e i r l i v e s , and i t c o n t r o l l e d t h e i r bodies. As Helene said, "Something else has taken over and I don't control i t [my body] any more." As described by the p a r t i c i p a n t s , the beginning r e l a t i o n s h i p between the person and the i l l n e s s was conceptualized as one i n which the i l l n e s s occupied the foreground of t h e i r being, c o n t r o l l i n g t h e i r l i v e s . Later along t h e i r recovery pathways, when pa r t i c i p a n t s perceived themselves recovered, they described the i l l n e s s i n an almost forgotten, background p o s i t i o n i n t h e i r being, as i s demonstrated by the following example from Don's story. When the researcher commented that at present Don d i d not seem to give much thought to h i s CFS, he r e p l i e d : I would say that i s a reasonable statement. I think that one of the things that t r i g g e r s [that I have recovered] has been that I s t i l l get the ME Newsletter. So when i t comes i n the mail, i t sort of t r i g g e r s [me] back to thinking that t h i s s t i l l e f f e c t s a l o t of people. That sort of reemphasizes the f a c t that I have recovered. Being recovered, Helene also t o l d about CFS holding a background p o s i t i o n i n the r e l a t i o n s h i p : "I don't worry about i t any more because I have been well for so many years now." For each p a r t i c i p a n t , h i s or her recovery pathway involved a changing r e l a t i o n s h i p with CFS from one i n which the i l l n e s s held a predominant (controlling) foreground p o s i t i o n to one i n which CFS held a minuscule background p o s i t i o n . In order to move along the recovery pathway, the p a r t i c i p a n t needed to learn how to move the i l l n e s s to a background po s i t i o n , and thereby reclaim h i s or her r i g h t f u l l i f e i n the foreground. The healing journey was characterized by t h i s changing foreground -background r e l a t i o n s h i p , the foreground habitant claiming the greater power. Although s p e c i f i c recovery pathways were unique to the i n d i v i d u a l p a r t i c i p a n t , a commonality was evident i n that the three major processes 62 (the R elational Processes) moved pa r t i c i p a n t s along i n t h e i r r e l a t i o n s h i p with CFS: Legitimizing, Putting the I l l n e s s i n i t s Place, and Redefining Healthy Self (the recovered s e l f ) . In t h i s report they are r e f e r r e d to as the three Relational Processes. Findings indicated that for a person to perceive themselves recovered (to comfortably l i v e with CFS i n the background of the r e l a t i o n s h i p ) , the goals of a l l three processes had to be met. Pa r t i c i p a n t s indicated that i n each of the three Relational Processes there were goals which the i n d i v i d u a l had to meet i n order to accomplish that process. The goals of Legitimizing were: (a) being believed and diagnosed, and (b) understanding and accepting the r e a l i t y of the i l l n e s s . In order to accomplish Putting the I l l n e s s i n i t s Place, the person experiencing CFS needed to achieve (a) healing the mind, body, and s p i r i t (including physical and soul healing), and (b) negotiating the c r i t i c a l balance. Two goals had to be accomplished i n Redefining Healthy S e l f : (a) accepting a new l i f e s t y l e , and (b) accepting CFS as a background habitant i n one's l i f e . Figure 1 (next page) displays the R e l a t i o n a l Processes and t h e i r goals. Note the interrelatedness of the processes. 63 Legitimizing 1. Being believed & diagnosed. 2. Understanding & accepting the r e a l i t y of the i l l n e s s . Redefining Healthy Self 1. Accepting a new l i f e s t y l e . s p i r i t . 2. Accepting CFS as a background habitant i n one's l i f e . Putting the i l l n e s s i n i t s Place 1 . Healing the mind, body & (physical & soul healing) 2 . Negotiating the c r i t i c a l balance. Figure 1: The three Relational Processes and t h e i r goals. The p a r t i c i p a n t s ' s t o r i e s of t h e i r recovery pathways indicated that each person accomplished the three Relational Processes i n t h e i r own unique pattern, manner, and pace. As David said, "There i s no r i g h t or wrong f or every one." Each p a r t i c i p a n t ' s healing journey along h i s or her pathway towards recovery from CFS was characterized as a maze of s t a r t s and stops: sometimes moving on, sometimes h i t t i n g a dead end or blank wall. The data indicated that the unique journey each person took along h i s or her recovery pathway was determined by the choices he or she made. As Don said, "They [persons who have CFS] make the choices along the way. A l l those things that you have choices on, that you have to make choices about are a v i t a l part of t h i s [recovering from CFS] thing." And so, Choice Making was 64 found to be the cen t r a l process underlying movement i n each of the Relati o n a l Processes along recovery pathways. It was found that the choices a person made were influenced by h i s or her information, b e l i e f s , and motivation (based on esteem needs). These were r e f e r r e d to as the o r i g i n of choices. P a r t i c i p a n t s r e f e r r e d to the outcome of choices as Moving On (making progress along the recovery pathway), or Blank Wall ( h i t t i n g a dead end or stopping). Figure 2, below displays the Choice Making process, and the interrelatedness of i t s main concepts: . Figure 2: The Choice Making process. As the reader w i l l learn, the two core processes: the Choice Making process, and the three Relational Processes i n t e r r e l a t e d i n a way that determined each p a r t i c i p a n t ' s journey along h i s or her unique recovery pathway. Choice Making could be conceptualized as the b u i l d i n g blocks f o r the pathway, as a l l movement and ha l t s were the r e s u l t of Choice Making i n the three Relational Processes. Figure 3 (next page) represents the construction, healing pathways towards recovery from CFS. Figure 3: Diagram displaying the construction: Healing pathways towards recovery from CFS. The above overview has oriented the reader to the framework, which wil l be used in this chapter to present (in greater detail) the construction of the participants' healing pathways towards recovery from CFS. First, a c l a r i f i c a t i o n and explication of "recovery", and a description of each participant's personal meaning of the term wi l l be presented. Next, Choice Making and the origins and outcomes of choices w i l l 66 be discussed. 'Lastly, the three Relational Processes which p a r t i c i p a n t s used to change t h e i r r e l a t i o n s h i p with t h e i r i l l n e s s e s w i l l be discussed. The chapter concludes with a summary. Recovery The reader w i l l r e c a l l that the purpose of t h i s study was to "increase knowledge and understanding about successful pathways of healing towards recovery from CFS". From discussions with the p a r t i c i p a n t s , i t became apparent that the term "recovery" was somewhat broad. They also spoke of "recovered", "recovering", and "cured". Thus a need arose to explicate the meaning of these terms. This section w i l l f i r s t explicate the d e f i n i t i o n of recovery, recovering, recovered, and cured as used i n t h i s study, and then w i l l go on to describe the p a r t i c i p a n t s ' personal meaning (the p i c t u r e they had) of recovered. A l l p a r t i c i p a n t s agreed with the researcher's i n i t i a l d e f i n i t i o n of recovery: "Re-establishing a sense of equilibrium, control, harmony, q u a l i t y [of] l i f e , . . . a n d s a t i s f a c t o r y l e v e l of functioning" (Collinge, 1 9 9 3 , pp. 3 2 - 3 3 ) as i d e n t i f i e d by the i n d i v i d u a l . P a r t i c i p a n t s also r e f e r r e d to recovering and recovered. Susan pointed out the need to c l a r i f y whether recovery was a process or an end state: "I don't think I am necessarily recovered. I think i t ' s a process of recovering..." Florence re f e r r e d to recovered as "complete recovery". Thus recovery was i d e n t i f i e d as being composed of two parts which were c l a r i f i e d to be: (a) recovered, which represented an end state of perceived complete recovery i n which CFS was present i n a background po s i t i o n , and, (b) recovering which r e f e r r e d to the process. Some pa r t i c i p a n t s i d e n t i f i e d a point i n time when they started 67 recovering, a time when they sensed that t h e i r i l l n e s s began turning around and they started becoming well. It was sometimes re f e r r e d to as a turning point, and announced the beginning of recovery. David t o l d about r e c e i v i n g a book with information which helped him begin recovering: "And then, the miracle. The beginning of the change....I started f e e l i n g so much better". Florence started recovering when she chose to be anointed by the Elders of her church: "I know from that point on that I was better, that I was getting better f a s t e r . " Annette perceived that she started recovering when she found "Seabands" ( e l a s t i c bands with a knob that was placed on a pressure point on the wrist to t r e a t nausea): "That [getting the Seabands] was a great big plus for me because....I could l i v e with being t i r e d as long as I rested, but I couldn't l i v e with when I was awake being nauseated." Using the Seabands became Annette's turning point and her i n i t i a t i o n into recovery. It also became c l e a r that recovery must be distinguished from cured. Pa r t i c i p a n t s used the term cured but with apparent d i f f e r e n t meanings. Sometimes i t .was used interchangeably with the above recovery d e f i n i t i o n s . For example, Helene who l a t e r c l e a r l y i d e n t i f i e d herself as recovered (as defined above), i n i t i a l l y said, "I would say that i s being cured, to know that I am able to resume the l i f e s t y l e that I was able to handle before I became i l l . . . j u s t l i s t e n i n g to my body...and knowing what my l i m i t a t i o n s are." Sometimes the p a r t i c i p a n t ' s meaning of cured matched the d e f i n i t i o n of cured outlined for t h i s study: "successful treatment of the agent responsible for a disease". (Note that CFS i s a syndrome which has no i d e n t i f i e d cause, and not a disease which has an i d e n t i f i e d cause.) Cured meant returning to a p r e - i l l n e s s condition i n which CFS would be gone, as opposed to recovered, which meant that CFS was present, but i n a background 68 p o s i t i o n where i t d i d not control the person's l i f e . The researcher c l a r i f i e d with each p a r t i c i p a n t the above stated d i s t i n c t i o n s between recovered and cured as defined i n t h i s study. C l e a r l y , recovered and cured were end points of d i f f e r e n t pathways, as i s depicted i n Figure 4, below. Being on d i f f e r e n t pathways, recovered and cured were not the same goal. UNWELL RECOVERED WITH CFS. 4a: The CFS experience pathway. UNWELL WITH CURED A DISEASE. 4b: The disease experience pathway. Figure 4: Diagram dis p l a y i n g recovered (4a) and cured (4b) as end points on two separate pathways. The l i t e r a t u r e and the findings of t h i s study indicate that a t t a i n i n g a cure i s not (at t h i s time) f e a s i b l e for persons who have CFS. I t was found that when pa r t i c i p a n t s strove to be cured (Monica and A l l a n ) , t h e i r progress along the recovery pathway was hampered. It was l i k e t r a v e l l i n g along one pathway while searching for a lo c a t i o n that existed only on a another road. Monica and A l l a n were reluctant to accept a goal of recovered s e l f . Their goal was to be cured. Although A l l a n said, "I don't know i f cure i s p r a c t i c a l " , he continually spoke as i f that was his goal. For example, r e f e r r i n g to a minor success with h i s doctor, A l l a n said, "Whether that i s any better cure than anyone else would do [I don't know]....He 69 i s n ' t providing- a p i l l to cure me." Monica'talked about just biding her time because "I haven't heard of any magical cure from anyone". Monica put i t t h i s way: " F u l l recovery would be back to what I was before, and that i s what I want." As can be deduced from the above discussion, p a r t i c i p a n t s ' hopes or expectations for the end state of t h e i r recovery journey was the acceptable picture they drew of themselves as being well or healthy. This picture came to be r e f e r r e d to as the "healthy s e l f " , or "recovered s e l f " . Of the p a r t i c i p a n t s who perceived themselves to be recovered, a l l described that state as being d i f f e r e n t from t h e i r p r e - i l l n e s s condition. As Don said, "I do believe a f t e r you go through t h i s that...you are d i f f e r e n t . " The p i c t u r e of healthy s e l f seemed to change as p a r t i c i p a n t s worked through the three processes of t h e i r r e l a t i o n s h i p with CFS. I n i t i a l l y , p a r t i c i p a n t s ' healthy selves tended to best be represented by being cured: a return to pre-i l l n e s s state of health (with CFS gone), as can be seen i n the following examples. I n i t i a l l y , Helene r e c a l l e d saying to her doctor, "What? There i s no magic p i l l ? " David went to h i s doctor looking to be cured, but found that the p r e s c r i p t i o n s he was given only made him f e e l worse. Even a f t e r David was managing his own recovery program he said, "I kept thinking that I had the cure." As p a r t i c i p a n t s worked through the three processes i n t h e i r r e l a t i o n s h i p with CFS (as they were recovering), they learned to appreciate that i t was not possible to be cured, and that being recovered was t h e i r achievable goal. Raine spoke about learning to adjust her energy demands: "I would use i t [energy] d i f f e r e n t l y . Not give myself such huge expectations, l i k e having to do a c e r t a i n amount....It has taken me a while to say that. That i s not what I want to do - that i s not me." As 70 p a r t i c i p a n t s ' '-healing journeys progressed, t h e i r d e f i n i t i o n s of healthy s e l f seemed to s h i f t towards a health state that they perceived possible to achieve, accepting the r e a l i t y of some l i m i t a t i o n s . As Helene said, "Looking at my l i f e now...I know that before I f e l t I had to accomplish that whole world and run the world and everything els e . Now I r e a l i z e I can't do i t and I don't necessarily want to anyway." As Helene was recovering, she was changing the picture she had of her healthy s e l f . As mentioned e a r l i e r , the end point of recovering i s being recovered. Recovered p a r t i c i p a n t s ' pictures of t h e i r healthy selves matched with the r e a l i t y of t h e i r i l l n e s s s i t u a t i o n ( t h e i r actual functional health). Pa r t i c i p a n t s i d e n t i f i e d that being recovered was d i f f e r e n t from t h e i r pre-i l l n e s s condition, and meant maintaining a sense of wellness as long as they respected t h e i r l i m i t s . As Florence said, "I do believe I am recovered, but I s t i l l have some l i n g e r i n g symptoms.... It [CFS] teaches you. You learn to set l i m i t s . You learn to be ass e r t i v e . I have learned to recognize the value of time i n r e l a t i o n to the q u a l i t y of the a c t i v i t y . " Recovered p a r t i c i p a n t s generally perceived t h e i r healthy s e l f state as po s i t i v e , as 'can be seen i n Helene's statement: "What I have learned has been a good thing....I should have been doing i t before." The above d e f i n i t i o n s and descriptions of recovery, recovering, recovered, and cured serve as a foundation for the following discussion of the p a r t i c i p a n t s ' perception of t h e i r own recovery status and for t h e i r perception of what being recovered meant for them. The p a r t i c i p a n t s ' perceived recovery status was as follows: A l l p a r t i c i p a n t s except A l l a n and Monica perceived themselves i n recovery, that i s , e i t h e r recovering or recovered. David, Rachel, Raine, and Susan believed they were i n the process of "recovering." Florence, Annette, Don, Elaine, and Helene s a i d 71 they had achieved the end state of "recovered." Each person described t h e i r personal meaning of recovered, which w i l l now be discussed. Monica and A l l a n perceived themselves to be unwell. Both indicated that t h e i r improvement was minimal, and that t h e i r p r e - i l l n e s s d e f i n i t i o n s of healthy s e l f was the only acceptable goal. The reader w i l l r e c a l l that t h e i r goals were for a cure. Monica spoke of recovered and cured as meaning the same thing. Consider her d e s c r i p t i o n of recovered: " F u l l recovery would be back to what I was before. And that i s what I want." She s a i d that she now was 20% of that. A l l a n would l i k e to "get back to where I was" (cured), but considers that an u n r e a l i s t i c goal. When encouraged by the researcher to describe what might be a s a t i s f a c t o r y l i f e which he could accept he r e l u c t a n t l y said, "to r e t i r e , do some of my own a r t work, and t r a v e l . " The most important q u a l i t y for A l l a n would be p r e d i c t a b i l i t y , "knowing I can count on being able to do that." It should be noted that A l l a n had the option of choosing to r e t i r e , but rejected i t because i t represented a lower income than receiving d i s a b i l i t y . The four, p a r t i c i p a n t s who perceived they were i n the process of recovering described t h e i r personal meanings of recovered i n the following ways. For Susan, recovered would be, "A whole new way of l i v i n g . A l i f e s t y l e which involves q u a l i t y , a balance of work to support s e l f and, at le a s t equally important, a c t i v i t i e s with f r i e n d s . " Rachel estimated that she was 90-95% along her recovery pathway. She defined recovered as being able to think c l e a r l y and to accomplish her family and personal r e s p o n s i b i l i t i e s , but at a "healthier pace" than she d i d before she became i l l . Raine estimated that she was 50% along the pathway to her perception of recovered which she defined as being "at my p r e - i l l n e s s l e v e l of energy, but with less obsessiveness." She further explained that she would l i k e to 72 b e a b l e t o w o r k ' t w e n t y h o u r s a w e e k , d o t h e h o u s e w o r k s h e w a n t e d , g o f o r w a l k s , a n d e x e r c i s e t h r e e t i m e s a w e e k . S h e a d d e d , "I am a l o n g way f r o m t h a t y e t . " T a l k i n g a b o u t r e c o v e r y , D a v i d s a i d : "I g o i n a n d o u t o f p h a s e s w h e r e I f e e l r e a l l y b a l a n c e d a n d r e a l l y g r o u n d e d . [ R e c o v e r i n g i s ] a s t a t e t o b e s t r i v i n g t o w a r d s , a l w a y s . " F o r D a v i d , r e c o v e r e d w o u l d b e , " B e i n g b a l a n c e d , f e e l i n g h e a l t h y " a s e x e m p l i f i e d b y : b e i n g a b l e t o t h i n k c l e a r l y , h a v i n g a n i c e s t a b l e e n e r g y o n a r e g u l a r b a s i s , n a t u r a l p o s i t i v e h u m a n d e m e a n o u r - b e i n g f a i r l y o p t i m i s t i c m o s t o f t h e t i m e , b e i n g a b l e t o h a n d l e c r i s i s i n y o u r l i f e , b e i n g a b l e t o w o r k a s m u c h a s y o u w a n t t o . . . b e i n g a b l e t o h a v e n o r m a l r e l a t i o n s h i p s , h a v i n g a n i c e b a l a n c e b e t w e e n a l l o f t h a t . T h e f i v e p a r t i c i p a n t s who p e r c e i v e d t h e m s e l v e s a s r e c o v e r e d , g a v e t h e f o l l o w i n g d e s c r i p t i o n s o f t h e i r " e n d s t a t e . " A n n e t t e s a i d t h a t s h e h a d " b e e n w e l l f o r o n e a n d a h a l f y e a r s n o w . " F o r h e r , r e c o v e r e d m e a n t b e i n g a b l e t o c a r r y o u t h e r m o t h e r , w i f e , a n d p r o f e s s i o n a l r o l e s i n a way t h a t s a t i s f i e d h e r a n d y e t d i d n o t d e p l e t e h e r . S h e p e r c e i v e d t h a t h e r e n e r g y l e v e l a n d q u a l i t y o f l i f e w e r e " b e t t e r " t h a n h e r p r e - i l l n e s s s t a t e . N e v e r t h e l e s s , A n n e t t e was r e s p e c t f u l o f t h e p o s s i b i l i t y t h a t s h e " c o u l d b e c o m e s i c k a g a i n . " D o n d e s c r i b e d h i s r e c o v e r e d s t a t e a s " o v e r a l l -p h y s i c a l , e m o t i o n a l , m e n t a l a n d s p i r i t u a l m o r e t h a n 1 0 0 % . " R e c o v e r e d t o h i m m e a n t " h a v i n g t h e s e n s e o f e n e r g y w h e n y o u w a k e u p i n t h e m o r n i n g s o t h a t y o u f e e l y o u c a n d o w h a t e v e r t h e s c h e d u l e i s . . . w i t h o u t a n y t h o u g h t o f n o t b e i n g a b l e t o c a r r y i t o u t . " F l o r e n c e p u t i t t h i s w a y : "I t h i n k I am a s r e c o v e r e d a s I am e x p e c t e d t o b e . . . . R e c o v e r y f o r me i s n o t b e i n g d e p e n d e n t . I t i s b e i n g a b l e t o g o v e r n my w h o l e d a i l y a c t i v i t i e s o n a l e v e l w h e r e I c a n b e s e l f s u f f i c i e n t . " A s o n e o f t h e r e c o v e r e d p a r t i c i p a n t s , F l o r e n c e w a s u n i q u e i n t h a t s h e saw l i m i t e d b e n e f i t f r o m h e r C F S e x p e r i e n c e a n d d e f i n i t e l y d i d n o t w a n t i t i n h e r l i f e : " C F S d o e s n ' t h a v e a n y r i g h t t o b e i n my l i f e . I t i s n o t my c h o i c e . " E i l e e n ' s p e r c e p t i o n o f r e c o v e r e d w a s 73 " f e e l i n g i n balance with nature and environment that i s more s i x t y - f o r t y . " By t h i s she meant that she was the s i x t y percent "going more outward rather than the environment coming inward at you." In summary, i t has been established that recovery: (a) as o r i g i n a l l y defined includes both the process of recovering, and recovered, the perceived end state of complete recovery i n which CFS i s present i n a background p o s i t i o n but does not control the person's l i f e (b) generally s t a r t s at a turning point i d e n t i f i e d by the person, and (c) i s d i f f e r e n t from cured which refe r s to successful treatment of an agent responsible for a disease, thus returning to a p r e - i l i n e s s condition i n which CFS i s gone. As well, the discussion reinforces the aspect of i n d i v i d u a l determination of recovery as used i n t h i s study. That i s , recovered and recovering were what the i n d i v i d u a l p a r t i c i p a n t perceived them to be - both i n the p a r t i c i p a n t ' s personal meaning of the concepts and i n h i s or her perception of i t s attainment. Some s p e c i f i c q u a l i t i e s of being recovered as i d e n t i f i e d by the p a r t i c i p a n t s included: recovered meant having a d i f f e r e n t l i f e s t y l e from t h e i r p r e - i l l n e s s way of l i f e , there was a respect for the fa c t that CFS had a background p o s i t i o n i n t h e i r l i v e s as long as they upheld t h e i r l i m i t a t i o n s , being "balanced" was important, and valuing a degree of p r e d i c t a b i l i t y . The next part of t h i s chapter goes on to describe Choice Making, one of the two main constructs of understanding healing pathways towards recovery. Choice Making E a r l i e r i n t h i s chapter, Choice Making was i d e n t i f i e d as the foundational process responsible for each p a r t i c i p a n t ' s movement along h i s or her recovery pathway. The data indicated that the o r i g i n s and outcomes of persons' choices were central to understanding the d i f f e r e n t responses 74 p a r t i c i p a n t s made to t h e i r i l l n e s s s i t u a t i o n s , and thus were c e n t r a l to understanding the uniqueness of recovery pathways. Some p a r t i c i p a n t s were more aware of the r e s p o n s i b i l i t y they had for Choice Making, and of the impact choice outcomes had on t h e i r recovery, a notion which seemed to r e l a t e to i n d i v i d u a l b e l i e f s . This part of the report w i l l further explicate the Choice Making process so as to provide a basis for understanding how i t fuels movement i n the three Relational Processes of the p a r t i c i p a n t s ' r e l a t i o n s h i p s with CFS. At the end of t h i s section, an example i s presented to demonstrate the Choice Making process i n operation i n the three Relational Processes. P a r t i c i p a n t s ' recovery pathways portrayed differences that, i n analysis, posed three questions. The f i r s t question was: why d i d p a r t i c i p a n t s i n seemingly s i m i l a r s i t u a t i o n s move d i f f e r e n t l y along t h e i r recovery pathways? Some pa r t i c i p a n t s struggled to get back to work as quickly as possible; while others struggled to stay on long term d i s a b i l i t y . For example, Annette and Helene returned to work a f t e r very b r i e f s i c k leaves. Helene said that besides her health, "my important point...was to go to my job". A l l a n and Monica needed to stay away from work. A l l a n had been on long term d i s a b i l i t y f o r three years and was a c t i v e l y f i g h t i n g to stay on i t . A l l a n talked about the " f r u s t r a t i n g f i g h t s " he had with.his professional association, and s a i d i t had "gotten me down more...I was cut off d i s a b i l i t y a year ago and here I am s t i l l wondering when I am going to get back on d i s a b i l i t y . " Monica had been on d i s a b i l i t y f o r two years, and d i d not foresee a time when she would go back to work. She said: "The longer i t goes on the less sure I am of when I am going to be back [to work]....So I don't see how I could work i n the near future." 75 P a r t i c i p a n t s sought d i f f e r e n t healers and used d i f f e r e n t healing approaches. David consulted every imaginable healer and healing modality a v a i l a b l e as evidenced i n the following statement: [There has been] just a general branching out of methods of healing that I have been exploring....Now embracing a l o t of i t , and continually reaching out and fi n d i n g new worlds and reading about d i f f e r e n t types of therapeutic modalities or healing p r a c t i c e s . Helene sought help only from her medical doctor, d i d not believe i n alternate healing modalities, and as she said, "I just don't l i k e to take s t u f f [medications]." David focussed on d i e t : "I focus on the food, but there i s a l o t more....My tendency i s to s t i c k more to the d i e t and the body s t u f f . . . " E i l e e n p r i m a r i l y used mind-body approaches which helped her to understand he r s e l f and take r e s p o n s i b i l i t y f or h e r s e l f . She said, "The mind and body are a l l one thing....Its not what happens to you, i t i s how you react, and only you can decide how you react....I think s e l f understanding i s the key to everything....Taking r e s p o n s i b i l i t y f o r yourself i s important... and taking r e s p o n s i b i l i t y for bad choices too." Raine a c t i v e l y and vigorously sought information, understanding, and healers. She t o l d about seeing at least four medical doctors, two homeopaths, two naturopaths, a sound therapist, a biofeedback s p e c i a l i s t , an environmentalist, and a n u t r i t i o n i s t . As well, she reported reading at lea s t ten books and taking a horde of vitamins, minerals, herbal medications, and homeopathic remedies: Annette avoided t a l k i n g about "medical" information: "I'm not medically - I don't have a medical background, so I don't know." She h e s i t a n t l y sought help p r i m a r i l y through her medical doctor. She said, "I don't l i k e p i l l s " and turned down her doctor's o f f e r f o r antidepressants. She d i d agree to take one medication (Dexatrim) because the "doctor said, 'This w i l l pump you up', and i t turned 76 out to cause an addiction problem for her. After i n i t i a l l y seeing an unsupportive medical doctor and t r y i n g a few a l t e r n a t i v e healers and modalities, Monica stayed with one medical doctor and kept using p r e s c r i p t i o n s he suggested although she d i d not perceive there was any improvement i n her health s i t u a t i o n . For example, she t o l d of r e c e i v i n g a Vitamin B i n j e c t i o n every day for one and a h a l f years, being on mega doses of Vitamin C, and taking "a natural progesterone". She said that her doctor, "was a l i t t l e disappointed that we hadn't struck on something here that was r e a l l y helping me." Don abandoned doctors who were not h e l p f u l (other than r e c e i v i n g a short course of antidepressants when he was " c l i n i c a l l y depressed"), and instead consulted homeopathic l i t e r a t u r e to develop h i s " s e l f help" healing program. As Don said, "These were just ways I discovered by myself. My source of information [was] the Encyclopedia of Naturopathic Medicine." This question of d i f f e r e n t pathways i n seemingly s i m i l a r s i t u a t i o n s frequently arose. The data provided the answer: i t was imbedded i n the notion of the -unique choices which i n d i v i d u a l s made. As Don said, "They [persons who have CFS] make the choices along the way. A l l those things that you have choices on, that you have to make choices about are a v i t a l part of t h i s [recovering from CFS] thing." And so, Choice Making was found to be the c e n t r a l construct underlying movement i n the R e l a t i o n a l Processes along recovery pathways. The second question then arose: Why d i d p a r t i c i p a n t s choose so d i f f e r e n t l y ? Where di d choices originate? Speaking about the o r i g i n of people's d i f f e r e n t choices, Helene said, "You are getting into such an area of humanness. What makes a person t i c k ? Like what kind of personality are you? And what sort of drive do you have? And [what] b e l i e f s . . . ? " Don, 77 David, and Helene indicated that a person's information also influenced h i s or her choices. Don spoke about people needing "processable information" and that i t needed to be assembled " i n a way that people can comprehend i t [so that i t ] f a c i l i t a t e s t h e i r d ecision making and choices". E i l e e n c l a r i f i e d the important influence of motivation i n Choice Making: You have to have a motive. You have to have a reason f o r doing i t [getting out of bed, walking].... I think that I was r e a l l y fortunate that I had the kids because i f I was just by myself, I would have slep t constantly. Don r e f e r r e d to the motivation concept i n the following way: " I t i s esteem....We a l l s t r i v e to obtain whatever that notion of success i s . " And' so, the o r i g i n of Choice Making was established as b e l i e f s , information, and motivation (based on esteem needs). The t h i r d question arose from the descriptions p a r t i c i p a n t s made of t h e i r recovery pathways. The journey was characterized as a maze of stops and s t a r t s . As David said, "Just along the way too there have been a l o t of ups and downs i n the four and a half years." What d i d the stops and s t a r t s (or ups and downs) represent i n the healing journey? The p a r t i c i p a n t s came to c a l l these .ups and downs "Moving On" and "Blank Walls". Moving On represented the outcome of choices which p a r t i c i p a n t s perceived improved t h e i r f e e l i n g of health and moved them along t h e i r recovery pathway. Blank Walls represented the outcome of choices which p a r t i c i p a n t s believed d i d not increase t h e i r f e e l i n g of wellness, or possibly made them f e e l worse. Blank Walls put a ha l t to movement on the recovery pathway. Depending on t h e i r i n t e r p r e t a t i o n s , p a r t i c i p a n t s perceived Blank Walls e i t h e r as a neutral r e s t i n g place or a negative sense of being stuck and discouraged. David's statement i s an example of h i s experience with Blank Walls: "I think people f e e l trapped because they don't know what to do. That's what I 78 found before I ;got that f i r s t book, and I didn't know i f exercise was good or bad because doctors say 'rest'." The above overview provides a foundation for the following discussion on the o r i g i n s of Choice Making: information, b e l i e f s , and motivation. Origins of Choice Making As stated e a r l i e r i n t h i s chapter, p a r t i c i p a n t s indicated that Choice Making was driven by three i n t e r r e l a t e d forces: information, b e l i e f s , and motivation (based on esteem needs). In r e a l i t y , the three forces r e c i p r o c a l l y i n t e r r e l a t e , however, the discussion w i l l focus separately on each of the three forces. Nevertheless, the interrelatedness of the three forces should be evident to the reader (see F i g . 2, p. 64). Information Because p a r t i c i p a n t s could only make choices based on the knowledge they had, information had a fundamental impact on Choice Making. That i s , p a r t i c i p a n t s ' choices originated only from a l t e r n a t i v e s they were ei t h e r consciously or subconsciously aware of. As Don said, "The only reason people don't do things, I don't think i t generally i s because they are too lazy. It generally i s because they don't have enough information to make the choice." Rachel shared another perspective: " I t i s easy to educate people. When people are educated about t h i s i l l n e s s , i t i s so much better. Instead of t h i s unknown factor. That of course brings fear too." P a r t i c i p a n t s indicated that several variables were important i n r e l a t i o n to the information force: source, a v a i l a b i l i t y , soundness, and the desire to seek information, and are discussed below. The source of information f e l l into two broad categories: i n t e r n a l and external. Internal sources of information were those which resided within each p a r t i c i p a n t , and included acquired information, knowledge about 79 s e l f , i n t u i t i o n , feedback from outcomes of previous choices and feedback from t h e i r impact on the Relational Processes. In the following statement, Florence provided an example of acquired information: "I know of some people who t r i e d to go back to normal l i f e before they were ready, and that just put them back." Such information undoubtedly influenced her tendency to move cautiously along her recovery pathway. E i l e e n demonstrated knowledge about herself when she said, "I also have t h i s thing about being very s e l f d i s c i p l i n e d . That was my coping way." Having that information influenced her choice to schedule her day, which made i t possible f o r her to make step by step progress along her recovery pathway. Annette used knowledge about herself i n the following example: "That i s something I w i l l do when I am f e e l i n g stressed, I w i l l go for a walk....I just seem to f e e l better i f I don't s i t around." Such information was i n f l u e n t i a l when Annette chose to go back to work. The following examples demonstrate p a r t i c i p a n t s ' use of i n t u i t i v e information. "I don't know. Something just t o l d me to do that [work]" (Annette). "I just knew that - I just knew i n t r i n s i c a l l y that i f I was not f e e l i n g well, I had to just slow down and I had to just r e s t " (Helene). Annette and Helene were influenced by t h e i r i n t u i t i o n i n Choice Making which helped them heal from CFS. Feedback from outcomes of Choice Making "looped back" to provide information for subsequent Choice Making. (See F i g . 2, p. 64). For example, despite her severe g a s t r o i n t e s t i n a l reaction, Raine talked about t r y i n g to comply with her doctor's order to take large doses of Vitamin C. She used the feedback information (severe g a s t r o i n t e s t i n a l reaction) i n her next choice: "I just f e l t l i k e I had to stop or slow down or something. My stomach was so upset....This cure [was] d i s a b l i n g me....And I am f i n d i n g I 80 am a c t u a l l y f e e l i n g better since I stopped." External information came from health professionals, alternate healers, family, friends, strangers, the l i t e r a t u r e , media, and others. Participants tended to value sources d i f f e r e n t l y . Generally t h i s was based on b e l i e f s formed on the basis of previous information the p a r t i c i p a n t had about that source. For example, Rachel t a l k s about i n i t i a l l y t r u s t i n g and b e l i e v i n g her doctors because "my h i s t o r y had been f i n e with them before. I had i m p l i c i t l y believed and trusted them." On the other hand, she was not as t r u s t i n g of information coming from a naturopath, and would not have ventured to seek i t except for the recommendation of a f r i e n d who was a professional: It was a f r i e n d who a c t u a l l y was a professional who recommended going to a naturopath, I am a lab technician. My mom i s a nurse.... Naturopath had never been a word i n our family. No one had ever i n e i t h e r family gone to a naturopath. And I never would have gone except for what she had t o l d me that i t had helped other people that she knew. For I trusted her. Note how because of new information from someone she trusted, Rachel, despite her strong b e l i e f s negating such a choice, was able to attend a naturopath. In essence, the new information allowed her to make a change i n her b e l i e f . An important early source of information for most p a r t i c i p a n t s was t h e i r medical doctor. The information received from physicians varied greatly. Helene considered herself fortunate to have a doctor who "was just doing research on [CFS]", and made av a i l a b l e to her a l l information that he had. His manner of providing that information seemed also to impact p o s i t i v e l y on Helene: So he said, "I think you've got t h i s chronic f a t i g u e . . . . A l l I can say to you at t h i s point i s you've got to l i s t e n to your body. Be sure you eat properly. Watch your exercise at t h i s point. But you [shouldn't] exacerbate your i l l n e s s e ither, which w i l l happen i f you 81 over exercise....Rest. That i s a l l I can t e l l you r i g h t now. Come back and see me." So that was very h e l p f u l to me. Helene valued her doctor's information and based Choice Making for her healing program on i t . She consulted no other healers, and took no medication. She balanced her rest and exercise, continued with her healthy d i e t , and she l i s t e n e d to her body - a l l of which helped her to progress along her healing pathway towards recovery from CFS. In Helene's example, her b e l i e f that her doctor was knowledgeable, capable, and caring also influenced her decision to accept the information and advice he gave her. Most p a r t i c i p a n t s were not as fortunate as Helene. They could not count on t h e i r doctors for accurate information about CFS. Sometimes pa r t i c i p a n t s were devastated by the lack of information, i n c o r r e c t information, and/or the doctor's scepticism of the r e a l i t y of the i l l n e s s , as i s evident i n the following examples. Rachel's doctor i n s i s t e d that her problem was depression, and "she [doctor] kept giving me a l o t of medication every time I went i n . . . , many of which I didn't f i l l " . I t was obvious that Rachel's doctor's information was not compatible with Rachel's thinking, as she chose not to use i t . The soundness of information a v a i l a b l e to a person was an important v a r i a b l e i n Choice Making. In the example c i t e d e a r l i e r , Helene's doctor provided accurate information which she could use. Sometimes the information that a p a r t i c i p a n t received was not as sound. Compare the information Annette received from her doctor: "You have CFS. There i s nothing we can do. Goodbye." Later, she received information (from another doctor) that Dexatrim would "kick s t a r t " her body, and thus she chose to use the medication because that made sense to her (was compatible with her b e l i e f s ) . When she became addicted to the medication, she learned that her 82 choice had been based on unsound information. Florence provided another example of using incorrect information for Choice Making. Medical s p e c i a l i s t s informed her that her CFS i n f l i c t e d ear pain was caused by mandibular j o i n t malformation. Based on that incorrect information, Florence chose to have unnecessary, expensive, and p a i n f u l reconstructive jaw surgery. Some p a r t i c i p a n t s a c t i v e l y sought information - others d i d not. Some pa r t i c i p a n t s sought information i n a l i m i t e d area (only medical) - others gleaned information from a var i e t y of sources (naturopathic, folk, s e l f -help, church, mind-body healing, l i t e r a t u r e , and so f o r t h ) . Helene was an acti v e information-seeker, as i s evident i n the following statement: I found that any b i t of information I could get, I got....I am an educator and I believe i n educating yourself - i n knowing everything. It i s the old story of i f you know what i t i s about, then i t i s n ' t so frightening or you can look into i t to see how you can surmount t h i s s i t u a t i o n . Don was an example of an active information-seeker who used a v a r i e t y of written resources: "I hammered the l i b r a r y and bookstores, and then when I found out there was a national [CFS] newsletter, that was a great source of information :too....The Encyclopedia of Naturopathic Medicine was a great wealth of information." Annette was a reluctant information-seeker. In fact, she more a c t i v e l y avoided i t . For example, she r e l a t e d minimal information and understanding about the legitimacy of her i l l n e s s , about medications she had used, and even about the " t i t r e t e s t " which she perceived could inform her i f she s t i l l had CFS. "I don't know how they diagnose anything, so I don't know." When the researcher asked i f Annette would l i k e some information about the t i t r e t est, her response was, "No. It doesn't i n t e r e s t me." 83 As discussed above, some of the v a r i a b i l i t y i n the use of the information force can be accounted for by i t s source, a v a i l a b i l i t y , soundness, and by the p a r t i c i p a n t ' s desire to seek information. I t was evident that Choice Making was not s o l e l y based on those v a r i a b l e s . As w i l l become evident below, the selected seeking and use of information r e c i p r o c a l l y r e l a t e d with the person's b e l i e f s and t h e i r motivation. B e l i e f s A b e l i e f i s a firml y held opinion or a t t i t u d e which i s accepted by the i n d i v i d u a l as true "based more on f a i t h than on f a c t " (Kozier, Erb, & B l a i s , 1992, p.182). P a r t i c i p a n t s ' b e l i e f s proved to have a strong influence on Choice Making. In some instances, p a r t i c i p a n t s e x p l i c i t l y stated t h e i r b e l i e f s , and t h e i r choices d i r e c t l y r e f l e c t e d those b e l i e f s . For example: Helene c l e a r l y stated her b e l i e f that "there c e r t a i n l y i s value i n working." Her b e l i e f was c l e a r l y operationalized i n her behaviour. She took only a three week sic k leave and then chose to return to work, giving work f i r s t p r i o r i t y i n r a t i o n i n g out her l i m i t e d energy. In other cases, b e l i e f s were more i m p l i c i t l y understood through behaviour, as neither the b e l i e f nor the choice was consciously acknowledged. For example, Monica repeatedly stated that she had no control over her symptoms, despite r e l a t i n g several s t o r i e s about f e e l i n g well i n s p e c i f i c s i t u a t i o n s which she could choose to repeat. She said, "In A p r i l of t h i s year, I had three weeks when I f e l t back to normal...but then i n May, down I went again." Later she t o l d that the three weeks of well time happened to be when she was on vacation. Yet when asked i f she could a t t r i b u t e the ups and downs to anything, she r e p l i e d , "The downs I can a t t r i b u t e to being overactive. If I do too much. The ups I can a t t r i b u t e to nothing." She seemed to believe that she had no influence or choice i n how 84 she f e l t , that- there was no choice that would help her f e e l better. An addi t i o n a l piece of information which explicates Monica's b e l i e f i s that fourteen years ago she had a s i m i l a r i l l n e s s experience. She perceived that she became well because of "nothing I did, nothing anyone d i d . " Monica's behaviour exemplified her implied b e l i e f that she just had to wait i t out, that she would one day simply recover. Some types of b e l i e f s that seemed relevant i n in f l u e n c i n g p a r t i c i p a n t s ' Choice Making along t h e i r pathway to recovery r e l a t e d to: i l l n e s s and health, healers and healing, s e l f , and l i f e s t y l e . One of Don's b e l i e f s i n each category w i l l be used to provide an example. His b e l i e f about i l l n e s s was "There could be so many elements involved i n someone's [CFS] that a l l c o l l e c t i v e l y create t h i s one i l l n e s s . " His healing program to put the i l l n e s s i n i t s place r e f l e c t e d the above b e l i e f . He chose to use several vitamins, minerals, and herbals as well as "a strong core of exercise" combined with l i f e s t y l e changes. In r e l a t i o n to healing, one of Don's b e l i e f was, "Well ultimately i t has to be the person themselves [who makes a de c i s i o n ] , but i t i s so dependent on how much information that person has and. how they are able to process i t . " This b e l i e f was evident i n the choices Don made to obtain a l l the information for himself and to i n i t i a t e h i s own healing program to recover. Don's b e l i e f that r e l a t e d to s e l f i s evident i n the following statement: "I s t i l l meditate and have become f a i r l y r e f l e c t i v e i n a way." Don believed that l i f e s t y l e was a major component of maintaining h i s recovery: " I t r e a l l y i s e s s e n t i a l l y a l i f e s t y l e change." Don's Choice Making c l e a r l y r e f l e c t e d h i s b e l i e f s . P a r ticipants who perceived they were recovered made changes i n some b e l i e f s along t h e i r recovery pathway. Changed b e l i e f s n a t u r a l l y provided new o r i g i n s for Choice Making, which subsequently led to d i f f e r e n t 85 outcomes. The-most common b e l i e f change was with regard to caring for oneself. Before having CFS, p a r t i c i p a n t s tended to push themselves to meet t h e i r perceptions of others expectations. During the recovery experience, t h e i r b e l i e f s changed to f i r m l y and a s s e r t i v e l y taking control of looking a f t e r t h e i r own needs i n l i f e . Annette t o l d about her change: "Like I was brought up to please people, to do what i s right....Yes, I think I am s t a r t i n g to stop l e t t i n g society pressure me....I am slowly progressing to the point where I'm the one I am t r y i n g to please now." Along her recovery pathway, Rachel said that she became more assertive with others: "Instead of doing what everyone else wanted [me] to - as I used to - [I would say] 'No, t h i s would be better for me'." E i l e e n t o l d about her change from f e e l i n g "trapped" to b e l i e v i n g "I can take control of myself. I have to take r e s p o n s i b i l i t y for my own l i v i n g . " Helene described her changed b e l i e f s t h i s way: "Before I f e l t I had to accomplish that whole world and run the world and everything e l s e . Now I r e a l i z e that I can't do i t and I don't necessarily want to do i t anyway." Another b e l i e f change evident i n many of the p a r t i c i p a n t s was t h e i r perception of who had influence over t h e i r i l l n e s s and health. At the time when they became i l l , p a r t i c i p a n t s primarily believed that t h e i r medical doctor had strong influence. By the time p a r t i c i p a n t s were i n recovery, many had changed t h e i r b e l i e f to perceiving that they held the most influence and the greatest r e s p o n s i b i l i t y for t h e i r i l l n e s s and t h e i r health. Annette expressed the struggle she experienced during the change from being brought up to believe "that doctors are always r i g h t " to "okay, the doctor i s t e l l i n g me I should take that, but I am sort of f e e l i n g that I need to l i s t e n to myself, and myself i s t e l l i n g me I am better off to do t h i s . " Don put i t t h i s way: "I never [used to] question authority.... So 86 part of the f a l l o u t from a l l t h i s [experience with CFS] i s that I [now] just don't have any trouble questioning anyone's authority or j u r i s d i c t i o n . " Monica and A l l a n were exceptions to both b e l i e f system changes described above. Neither expressed or demonstrated a b e l i e f i n having control over t h e i r l i f e or t h e i r health. Both tended to meet other's expectations and tended to look for d i r e c t i o n from others. Also, both seemed to believe that t h e i r medical doctor was responsible for t h e i r healing. As A l l a n put i t : "There i s nothing that I have done that I haven't cleared i t with [my doctor]." And Monica said, "I was sort of f e e l i n g that I would s t i c k with him [Dr. P.] because you have to believe i n something. So I think I am going to s t i c k there." Monica and Allan's b e l i e f that t h e i r doctor was responsible for t h e i r healing tended to deter them from gaining control of t h e i r i l l n e s s and t h e i r healing. Motivation (based on esteem needs) The importance of motivation i n Choice Making was c l e a r l y i d e n t i f i e d by E i l e e n . Her need to be a good parent for her f i v e young c h i l d r e n despite her extreme fatigue, gave her "the reason" for f o r c i n g herself to do even small things. As she said, "You have to have a motive. You have to have a reason for [getting up]. I wanted to be there for the kids. That was the main thing I was thinking about." E i l e e n t o l d how being motivated to choose to do even small things because of her c h i l d r e n helped her f e e l better and to heal: "So I think that I was r e a l l y fortunate that I had the kids because i f I was just by myself I would have slept constantly." As i s evident above, Eileen's motivation was rooted i n a strong need which was associated with how she f e l t about herself - how she valued her s e l f , her esteem needs. Generally, i t was found that esteem needs 87 strongly motivated p a r t i c i p a n t s ' Choice Making, and served as eit h e r p o s i t i v e or negative forces along the recovery pathway. For that reason, both the p a r t i c i p a n t s ' motivation i n Choice Making and t h e i r underlying (esteem) needs w i l l be i d e n t i f i e d i n t h i s section. Helene's motivation for getting up a f t e r her three week s i c k leave was her need to work i n order to value h e r s e l f . She said, " I t didn't occur to me to not work - except those [three] weeks when I couldn't p h y s i c a l l y do i t . . . . A s f a r as my work goes - because my work i s important to me - i s that I was able to maintain i t " . The determination to meet her need to work i s evident i n the following: It was my job i n my own mental state to get up, go to work, get home, collapse on the c h e s t e r f i e l d , and i f I could, make dinner....I had to [ p r i o r i t i z e ] , "Okay, my important point at t h i s time - besides my health I mean - was to go to my job'. Helene's choice to work was motivated by the fac t that she valued he r s e l f i n her work r o l e , that i s , work enhanced her esteem. She explains the motivation behind her Choice Making: Work and the fac t that I was able to continue with my work and the fact that I enjoy i t . Well f i r s t of a l l , you don't have time to s i t and l u l l yourself i n s e l f p i t y . That i s a very important point. You are...having to go out beyond t h i s s i c k body and do your job.... I think i n the long run that i s what helped me overcome some of t h i s . The f a c t that I knew I had to do t h i s , so I pushed my body a l i t t l e f urther. Annette expressed her d i s s a t i s f i e d feelings about herself when she was o f f work. She spoke about valuing (needing) her mother, wife and professional ro l e s , and having a strong motivation to reclaim them: I was l y i n g around and sleeping... and not accomplishing anything.... I f e l t that i f I got up and got doing things, the better I would be at being the mom, the wife, and the profess i o n a l . I was f e e l i n g that I r e a l l y could do more i f I just had that motivation. Annette's motivation was the esteem she acquired through her work r o l e , and thus she chose to return to work. The strength of her need to work was 88 emphasized by the fact that her husband and her doctor were against her working. Although she generally d i d as others expected of her, i n t h i s case her need to work provided stronger motivation i n Choice Making. Thus far -we have examined p a r t i c i p a n t s ' motivations which seemed to serve as p o s i t i v e forces towards recovery. Choice Making res u l t e d i n Moving On outcomes which f u e l l e d the healing journey along the pathway towards recovery. In some cases, Choice Making influenced by motivations tended to have a negative force on the p a r t i c i p a n t s ' healing journey. For example, Susan had a strong need to be l i k e her peers, "to be able to go camping for four days and hiking and a l l these things my active friends do." This need motivated her i n Choice Making. For example, she chose not to d i s c l o s e her i l l n e s s . Instead, when asked, she would casually admit that i t was something i n the past. "That seems a b i t more acceptable than, 'I have i t r i g h t now1." Choice Making influenced by her motivation to be l i k e her "active f r i e n d s " was evident i n her decision to frequently to disregard her l i m i t s . Susan summarized her needs which so strongly motivated her: I f e e l very insecure....[I need to learn] to accept - learn to f e e l more worthy. To f e e l more valuable. To get past those i n s e c u r i t i e s . Maybe I am a b i t too dependent on these outside opinions, and es p e c i a l l y opinions of what others think of me. Al l a n needed society and his professional a s s o c i a t i o n to v a l i d a t e him as a le g i t i m a t e l y i l l person who was worthy of respect and compensation. His Choice Making was strongly motivated by that need and was fi r m l y planted i n v e r i f y i n g h i s i l l n e s s , to the detriment of allowing h i s recovery to grow. Although A l l a n had information and healing s k i l l s , t h e i r value were disregarded i n favour of proving that he was le g i t i m a t e l y i l l and deserving compensation. When asked how he envisioned himself i n a years time, he responded: 89 I think that depends again on whether I can concentrate my energies on getting better. I see myself improving slowly. If I could concentrate a l l my energies on getting better, I would get better f a s t e r than I am. The question i s w i l l I get a chance to do that, so I don 11 know. Note how strongly Allan's needs motivated h i s Choice Making. His needs kept him from choosing a healing pathway. As i s evident i n the above discussion, p a r t i c i p a n t s ' Choice Making was driven by the i n t e r r e l a t e d forces exerted by information, b e l i e f s , and motivation. To summarize t h i s discussion an overview w i l l be presented of the impact of information, b e l i e f s , and motivation on Don's Choice Making along h i s pathway to recovery. Don was not diagnosed as having CFS when he f i r s t was i l l t h i r t e e n years ago. At that time he had extremely l i m i t e d information, believed that h i s medical doctor was the authority on h i s health, and h i s motivation focussed on h i s need to " e s t a b l i s h the notion of s e l f " and to value himself. As time went on, Don's b e l i e f s h i f t e d from doctor as healer to s e l f as healer. That change i n b e l i e f impacted on subsequent Choice Making. He became an a c t i v e information-seeker, which influenced him to form a strong b e l i e f about the fundamental importance of l i f e s t y l e . Outcomes of Choice Making increasingly put him i n charge of h i s healing program. The success he experienced i n progressing on h i s pathway to recovery was a p o s i t i v e force i n h i s need to "define" himself and to value himself. He had the confidence to choose to t r y a f i f t e e n day group b i k i n g t r i p , which became the turning point i n h i s i l l n e s s . Now that the reader has an understanding about the o r i g i n s of the Choice Making process, the discussion w i l l focus on the outcome of Choice Making: Moving On and Blank Walls. 9 0 Outcomes of Choice Making Par t i c i p a n t s ' s t o r i e s of t h e i r recovery pathways spoke of a rough, unpredictable journey of stops and s t a r t s : sometimes f e e l i n g that they were making progress, other times thinking things were no better, or even getting worse. Helene described i t t h i s way: "As I was recovering I would f e e l better for a l i t t l e while and then dip...and then I would go up again, and I would dip. As David said, "You need to s h i f t the a t t i t u d e to saying i t i s a long term process you have to grow in-. Just along the way too there have been a l o t of ups and downs." The growth and the ups and downs that the p a r t i c i p a n t s r e f e r r e d to were the r e s u l t or outcome of Choice Making. They represented movement along the recovery pathway i n each of the Relational Processes: Legitimizing, Putting the I l l n e s s i n i t s Place, and Redefining Healthy Self (See Fig.3, p. 65). Pa r t i c i p a n t s followed t h e i r i n d i v i d u a l patterns along t h e i r recovery pathway. I t seemed that they i n t r i n s i c a l l y needed to l e g i t i m i z e t h e i r i l l n e s s , needed to put t h e i r i l l n e s s i n i t s place, and at some point along the journey they learned to recognize the need to redefine healthy s e l f . Each movement 'in each process along the way was f u e l l e d by Choice Making, and the outcome was experienced i n at least one of the Relational Processes. P a r t i c i p a n t s i d e n t i f i e d the outcomes as "moving on" i n t h e i r healing journey, or as h i t t i n g a "dead end,11 "blank wall," or a "plateau". Sometimes p a r t i c i p a n t s i n i t i a l l y f e l t encouraged i n response to choosing a new approach, and thought they were on a p o s i t i v e pathway. There was an expectant f e e l i n g of Moving On. The notion of Moving On represented both f e e l i n g better and continuing along the recovery pathway. Raine described her f e e l i n g of Moving On when she chose to t r y a new medication: "pretty i n c r e d i b l e . I would say 80 - 90% [well]. I r e a l l y f e l t normal. 91 There was an i n c r e d i b l e sense of 'Yes, I can do t h i s ' . " Rachel t o l d about a s i m i l a r experience when she chose to use antifungal medication and a yeast free d i e t : "I couldn't believe how good I f e l t a f t e r . I couldn't believe the d i f f e r e n c e i n my cognitive a b i l i t i e s - how i t had improved to a major degree." Florence expressed her r e l i e f at Moving On when her doctor believed that her symptoms were r e a l : "So he [doctor] believed i n me, and he a c t u a l l y pushed beyond the usual d i f f i c u l t i e s that doctors have with t h i s i l l n e s s . So, I didn't go through t h i s , 'Oh, she probably i s depressed. We'll t r y some antidepressants on her'." From the p o s i t i o n of Moving On, pa r t i c i p a n t s had two possible outcomes: (a) They could make choices which continued them on the Moving On pathway; or (b) They eventually recognized that although the approach had eased some symptoms, CFS continued to i n t e r f e r e with t h e i r l i v e s . Progress on the recovery pathway came to a h a l t : they h i t a Blank Wall (See F i g . 2, p. 64). The notion of a Blank Wall outcome represented outcomes of Choice Making which the pa r t i c i p a n t s believed d i d not increase t h e i r sense of wellness, or possibly made them f e e l worse. Depending on t h e i r i n t e r p r e t a t i o n s , p a r t i c i p a n t s perceived Blank Walls e i t h e r as a neutral r e s t i n g place, or a negative sense of being stuck, discouraged, f r u s t r a t e d , or defeated. This second option was a Moving On - Blank Wall pattern quite t y p i c a l of a l l p a r t i c i p a n t s ' experiences as w i l l be seen i n the examples below. Monica said, "For the f i r s t l i t t l e while you think 'Yes, t h i s i s it.'...And then you think that i t r e a l l y hasn't helped." Generally choosing new healing modalities i n i t i a l l y r esulted i n some improvement (Moving On), but i n e v i t a b l y p a r t i c i p a n t s r e a l i z e d i t was not "the cure", and they h i t a Blank Wall. Raine expressed i t t h i s way: "Everything I t r y I think I f e e l 92 better, but then I f e e l worse." Susan provided an example of the Moving On - Blank Wall pattern. She received a. medical diagnosis of CFS, and i n i t i a l l y chose to use recommended treatment approaches. Susan had expectations of Moving On, and yet, she just didn't. She h i t a Blank Wall. Her symptoms di d not improve s u b s t a n t i a l l y . She continued to choose to seek new and d i f f e r e n t healers, but to no a v a i l : "I am t i r e d of doctor shopping. Yes. I am r e a l l y t i r e d of doctor shopping. E s p e c i a l l y seeking a l t e r n a t i v e methods. I think I have t r i e d everything. I am seeing a [new] homeopath r i g h t now [choice]. He's put me on..." In the following statement she verbalized her Choice Making process which blocked her from Moving On; however, she remained unable to change: "I am t r y i n g to move on without accepting [the r e a l i t y of the i l l n e s s ] . Like I don't t e l l people that I'm dealing with t h i s [CFS] because I don't want to deal with t h e i r scepticism." Susan continued h i t t i n g Blank Walls because her Choice Making, influenced by motivation (her esteem need), had a negative influence on achieving the three Relational Processes. This pattern of p a r t i c i p a n t s Moving On and h i t t i n g Blank Walls can be conceptualized as struggling to f i n d t h e i r way'through a maze. Sometimes p a r t i c i p a n t s f e l t that outcomes of t h e i r Choice Making made no difference, or even made things worse. This was perceived as an abrupt stop i n movement along t h e i r recovery pathway, and was described as h i t t i n g a Blank Wall, dead end, or plateau. Rachel t e l l s about h i t t i n g a Blank Wall when she chose to continue seeing her doctor: "She [doctor] absolutely d i d not believe i t [that CFS was r e a l ] . [According to her] I was just depressed because we had two s p e c i a l needs children, she was quite sure i t was the kids' f a u l t . " When Rachel's medical doctor discovered that she was using naturopathic medications, "she [medical doctor] took my 93 [naturopathic] ^medication and threw i t i n the garbage.... She said, 'You are never to go back there again'. She was l i k e a parent...She was l i k e a parent scolding me for taking i t . " Monica represented her stopping place t h i s way: "I don't seem to be going anywhere....I seem stuck." Sometimes the outcome that arose from h i t t i n g a Blank Wall represented (or was interpreted as) a place to r e s t f o r a while, perhaps a time for r e f l e c t i o n . Raine described such a stopping place: "So now I am at a l i t t l e b i t of a crossroad. Like I don't even know what r want to do i n my work....I'm not sure i t i s the best thing f or me....I f e e l i t may not be a healthy s i t u a t i o n [emotionally] for me." Annette's two month "hibernation" when she was on s i c k leave was such a r e s t i n g time: " I t seemed to help me to get things sorted out. That's when I came to a l o t of decisions about my l i f e s t y l e . " Although p a r t i c i p a n t s generally spoke of Blank Walls i n a negative l i g h t , David and Annette suggested that Blank Walls could serve a useful purpose on the recovery pathway. David put i t t h i s way: "I d e f i n i t e l y agree with the dead stop....the c r u c i a l thing i s , what do you do at that point....I have always come back to say, 'Well, t h i s dead end i s t e l l i n g me something'." Annette agreed, "We learn more from mistakes than we learn from doing things c o r r e c t l y . " David and E i l e e n expanded the concept of Moving On and Blank Wall. David perceived that the Blank Wall had a small door i n i t , and " i t i s just a matter i f you want to see that there i s a door there, you can get through i t . I t ' s just closed, i t ' s not locked." And so, the notion of movement beyond the Blank Wall was introduced. E i l e e n expanded the concept by adding that a person needs "energy to search for the door and to open i t . " She perceived that "the reason" (motivation) "generate[d] the energy to open 94 i t . " Monica was unable to v i s u a l i z e the door: "I don't seem to be gett i n g anywhere.... I'm stuck on t h i s plateau but I don't see the door or the step to the next one." As stated e a r l i e r , Monica lacked a motivation to move on along her recovery pathway. The Moving On-Blank Wall concept can be further explicated as perceiving d i f f e r e n t stages of movement: seeing the door, opening the door, and going through the door. Seeing the door represented having the information, opening the door meant being able to choose i t because i t was i n keeping with one's b e l i e f s , and going through the door was f u e l l e d by "the reason" (motivation). And so, we have come round f u l l c i r c l e to recognize that information, b e l i e f , and motivation (based on esteem needs) influence Choice Making which lead e i t h e r to Moving On or to a Blank Wall. The patterns of movement that the p a r t i c i p a n t s used can be summarized as follows: From Moving On the i n d i v i d u a l could: (a) through new Choice Making, continue Moving On, (b) through new Choice Making, h i t a Blank Wall, or (c) eventually come to a Blank Wall. From Blank Wall the person could (a) rest-a while or (b) through Choice Making lead to Moving On, or (c) through Choice'Making lead to another Blank Wall. (See F i g . 2, p. 64.) This section has focussed on the Choice Making process, o u t l i n i n g the o r i g i n s and the outcomes of Choice Making. As a summary of t h i s section, and as a bridge to the next section which discusses the three Rela t i o n a l Processes, an example i s provided which tracks some of Annette's Choice Making from o r i g i n s to outcomes. This example w i l l demonstrate the dynamic nature of the Choice Making process and how i t forms the basic unit for movement i n the three Rela t i o n a l Processes: Legitimizing, Putting the I l l n e s s i n i t s Place, and Redefining Healthy S e l f . 95 An Example When Annette had been on s i c k leave for two months, she chose to return to work despite her doctor and husband's disagreement. When asked how she made that choice (the o r i g i n s of her Choice Making), when i n fa c t she s t i l l was weak and unwell, her answers were as follows: I had been doing so much sleeping and not accomplishing anything.... I am one of those people who the more I have to do the better I do them....So I f e l t that i f I got up and got doing things, the better I would be at being the mom, the wife, and the professional than I"was just s i t t i n g around....I wasn't doing anything. I wasn't accomplishing anything....I guess poor s e l f concept as much as anything...I was f e e l i n g that I r e a l l y could do more i f I just had that motivation. And I think another thing that came into i t too was...the lack of confidence of doing a job a f t e r you have been away for a while. Like I started to wonder i f I could s t i l l be a [professional ] '. The o r i g i n of her Choice Making was embedded i n b e l i e f s , motivation, and information. Some of the b e l i e f s which are evident i n the above statement , and which influenced her choice to return to work seemed to be: (a) the more she had to do, the better she d i d things, (b) she valued accomplishing things, and doing things increased her s e l f confidence; (c) valuing herself r e l a t e d strongly to her work r o l e ; (d) she valued her mom, wife and professional r o l e s ; (e) she needed motivation to get going. The strong motivation for Annette was that her threatened confidence and s e l f concept (esteem) were connected with her work r o l e : that i s , i n order to f e e l worthwhile, she needed to work. The information which influenced her Choice Making was: (a) her doctor had t o l d her, "You have CFS. There i s nothing we can do. Good-bye.... He was very negative about i t . . . . I was absolutely devastated...and just f e e l i n g completely l e f t a d r i f t . " , and (b) her professional association had t o l d her that "at that time very few people had used [medical leave] for stress, and they were r e a l l y r e a l l y hard on the people who were o f f . " Based on the b e l i e f s , 96 motivation, and information described above, Annette chose to return to work. The outcome of her Choice Making was improved s e l f esteem and an increased sense of well being (Moving On). At that time, her CFS had been l e g i t i m i z e d by her doctor's diagnosis, but not by h i s approach. As a r e s u l t , the doctor's information influenced her b e l i e f s about the r e a l i t y of her i l l n e s s : "I think underlying i t a l l i s t h i s thought that I wasn't 're a l ' sick....Maybe at times I use i t [CFS] as a crutch." At that time, she had not f u l l y l e g i t i m i z e d her i l l n e s s . The outcomes of Choice Making based on such b e l i e f s undoubtedly re s u l t e d i n Annette paying less serious attention to her healing and to her l i m i t s . Annette t o l d of one occasion when Choice Making res u l t e d i n a Blank Wall outcome. She chose to r e g i s t e r for a u n i v e r s i t y course. This choice originated from information that increasing her education would r e s u l t i n increased pay, and from learning that she was strong enough to work f u l l time. The influence of Annette's student r o l e motivation and esteem reinforcement was obvious i n the following statement: "I could have been a professional student because I love learning. I love going to school. I love the f e e l i n g of being on the campus. I enjoy when I walk into a c l a s s . " Unfortunately, the outcome of. her choice to study was h i t t i n g a Blank Wall. That i s , a return of symptoms, needing to take more sic k time, and a frightened f e e l i n g that she may not be able to work. Perhaps she was not l i s t e n i n g to her body or observing her l i m i t s . The outcome of that experience provided Annette with information for future Choice Making. For Annette, being able to return to work tended to impede progress i n the Legitimizing process - i n understanding and accepting the r e a l i t y of her i l l n e s s . I t reinforced her physician's and her own doubts of the seriousness of the i l l n e s s . However, the esteem she got from work helped 97 her to f e e l better about herself, which helped her soul healing, thus Putting the I l l n e s s i n i t s Place. As well, she made numerous l i f e s t y l e adjustments (physical healing) which helped her manage her i l l n e s s around work, and thus contributed to Putting the I l l n e s s i n i t s Place. Another physical healing modality was the exercise benefit she got from working. Returning to work and being able to balance to do so contributed to Redefining the Healthy Self to include the compromises she needed to make i n order to be able to work. One of these compromises was bargaining (Putting the I l l n e s s i n i t s Place through negotiating the c r i t i c a l balance) by taking two days off work when she f e l t fatigued or p r i o r to a n t i c i p a t e d demanding work days. As can be seen, the o r i g i n a l choice of returning to work impacted on her progress i n several of the Relational Processes. The interrelatedness of a l l aspects of the two main processes (Choice Making and the R e l a t i o n a l Processes) was evident i n information, b e l i e f s , and motivation i n f l u e n c i n g one another, and each of the three Relational Processes r e c i p r o c a l l y i n f l u e n c i n g the other two. In the same l i g h t , outcomes from the three Relational Processes influenced information, b e l i e f s , and motivation (based on s e l f esteem, see F i g . 3, p. 65). The above discussion has provided an example which demonstrates the interrelatedness of Choice Making and the R e l a t i o n a l Processes, and thus serves as a bridge to the next focus: the three R e l a t i o n a l Processes. The Three Relational Processes In the previous chapter i t was established that Choice Making was ce n t r a l to p a r t i c i p a n t s ' movement along t h e i r recovery pathways, and that Choice Making was influenced by information, b e l i e f s and motivation. The outcomes of Choice Making were evident i n each p a r t i c i p a n t ' s unique pattern 98 of Moving On and Blank Walls which were seen i n each of the three Relational Processes. E a r l i e r i n t h i s chapter the reader had a beginning introduction to the three Relational Processes through which p a r t i c i p a n t s learned to move the i l l n e s s from a foreground to a background p o s i t i o n i n t h e i r l i v e s . Discussion w i l l now focus i n greater d e t a i l on the three processes. F i r s t , a b r i e f overview of the concept of the three processes w i l l be presented (see F i g . 1, p. 63). Overview The data indicated that each p a r t i c i p a n t had h i s or her s p e c i a l pattern for working on the three Relational Processes. There was a strong sense of i n d i v i d u a l i t y i n need, time, pace, content, and focus. This i n d i v i d u a l i t y can be at t r i b u t e d to: (a) the Choice Making process which the reader w i l l r e c a l l i s driven by the uniqueness of information, b e l i e f s , and motivation of each p a r t i c i p a n t , and to (b) the d i s t i n c t i v e ways i n which CFS manifested i t s e l f i n each p a r t i c i p a n t . As Florence said, "This i l l n e s s attacks the weakest part of a person's system, and that varies from i n d i v i d u a l to i n d i v i d u a l . " Consider the following examples. Annette, Don, Eileen, Helene and Susan reported a slow, in s i d i o u s onset characterized by cold and f l u symptoms. The other p a r t i c i p a n t s experienced a sudden onset of severe symptoms. A l l p a r t i c i p a n t s except Annette reported severely incapacitating cognitive dysfunction and head pain. Helene and Raine reported minimal muscular involvement; whereas, the other p a r t i c i p a n t s experienced incapacitating fibromyalgia. Nausea and other g a s t r o i n t e s t i n a l symptoms were reported by Annette, Don, All a n , David, Helene, and Ei l e e n . Severe food s e n s i t i v i t i e s were part of Florence, Raine, Monica, Susan, and Rachel's challenge. Such differences provided p a r t i c i p a n t s with d i f f e r e n t information about t h e i r i l l n e s s experiences, 99 and that information combined with other information as well as the influence of b e l i e f s and motivation, impacted on the i n d i v i d u a l way i n which each p a r t i c i p a n t approached the goals of the Rel a t i o n a l Processes. Consider the s i t u a t i o n s described below. Participants who had a sudden onset of symptoms were forced to attend to the i l l n e s s immediately. Rachel's symptoms came upon her " i n a matter of minutes", and she was h o s p i t a l i z e d soon thereafter. The r e a l i t y of her i l l n e s s experience (information) could hardly be contested, and she knew she had something very challenging to overcome ( b e l i e f ) . She immediately engaged i n the Legitimizing process - being h o s p i t a l i z e d has a way of confirming the legitimacy of an i l l n e s s . Annette's story was d i f f e r e n t . She had a nine month period of nagging f l u and cold symptoms with no confirmation of any legitimate i l l n e s s (information). Her f r u s t r a t i o n at lack of v a l i d a t i o n of " r e a l " i l l n e s s was evident i n her response to negative r e s u l t s from diagnostic t e s t s : "I don't want i t to be negative. I want i t to be p o s i t i v e . I want to know what I have." Her Legitimizing process lingered on. Annette's comments r e f l e c t e d her i n i t i a l questioning a t t i t u d e of the v a l i d i t y of her i l l n e s s experience: "Maybe I don't f e e l I was as s i c k as some people....I think underlying i t a l l i s t h i s thought that I wasn't 're a l ' s i c k . " P a r t i c i p a n t s d i d not necessarily engage i n the Relational Processes i n a l i n e a r manner, one process predictably following the other. I t seemed more to be a notion of p a r t i c i p a n t s p o t e n t i a l l y being involved i n a l l processes at any point i n time, but working more i n t e n t l y on one. The data indicated a notion of what might be r e f e r r e d to as a more e f f i c i e n t order of engaging i n the processes. There seemed to be a need for p a r t i c i p a n t s to reach the goals of one process before they could f u l l y move on to 100 accomplish another process. Generally, Legitimizing had to be f u l l y achieved before Putting the I l l n e s s i n i t s Place could be f u l l y attended to, which had to be achieved before Redefining Healthy Self could be f u l l y accomplished. The key word here was " f u l l y " because the data indicated that p a r t i c i p a n t s made e f f o r t s , for example, i n Putting the I l l n e s s i n i t s Place before f u l l y completing the Legitimizing process, but those e f f o r t were only p a r t i a l l y e f f i c i e n t and successful. Allan's s i t u a t i o n was an example. A l l a n had experienced the benefits of mind-body healing for enhancing h i s energy, and yet he d i d not choose t h i s modality for healing. He d i s c r e d i t e d i t s v a l i d i t y , and could not f u l l y engage i n healing (Putting the I l l n e s s i n i t s Place) because his p r i o r i t y focus remained i n proving to h i s professional union he was i l l ( Legitimizing). A l l a n was stuck i n the Legitimizing process, and as the above example demonstrates, could not f u l l y engage i n healing. He was also blocked i n the Redefining Healthy Self process, as he defined himself as being unwell, and said that h i s perception of recovered s e l f continued to be h i s p r e - i l l n e s s condition. Like A l l a n , Susan seemed to be stuck i n the Legitimizing process because she was unable to i n t e r n a l l y acknowledge the r e a l i t y of her i l l n e s s . Her motivation to be l i k e her "active f r i e n d s " blocked her progress i n i n t e r n a l Legitimizing, which i n turn blocked her work i n Putting the I l l n e s s i n i t s Place. She was not ready to Redefine the Healthy Self, as i s evident i n the following comment: What I want i s to be super person - to be able to go camping for four days and h i k i n g and a l l these things my active friends do. They don't have to worry about taking a couple of hours i n the morning just to wake up and loosen up. Susan was dabbling i n a l l three processes, but had not f u l l y achieved the goals of any. 101 When pa r t i c i p a n t s perceived themselves to be recovered, they had accomplished the work (reached the goals) of a l l three Relational Processes. That d i d not mean t h e i r r e l a t i o n s h i p with t h e i r i l l n e s s was terminated. As Annette said, " I t i s something I l i v e with." Having accomplished the work of the Relational Processes meant that the i l l n e s s was c o n t r o l l e d and thus was i n a background p o s i t i o n i n the r e l a t i o n s h i p . In order to maintain t h e i r recovered status, p a r t i c i p a n t s needed to uphold a maintenance program which continued to keep the i l l n e s s i n i t s place, as was evident i n Don's statement: "Ginseng, Pentago, and the exercise. When I go on a t r i p , I stock up on these and take them along." He went on to t e l l about taking h i s bike along on business t r i p s just to make c e r t a i n that he got the exercise necessary for maintaining h i s recovered status. Annette spoke about respecting the need for v i g i l a n c e (negotiating the c r i t i c a l balance) even when recovered: "I perceive that...I could get i t again, but I f e e l l i k e I am c o n t r o l l i n g i t r i g h t now. But i f I don't watch myself and l i s t e n to my own body, I could become sic k again." Even when p a r t i c i p a n t s perceived themselves recovered, there were times when they needed to r e v i s i t certain'processes. Annette t o l d about not l i s t e n i n g to her body's warning (nausea) that she had crossed her l i m i t s which resulted i n her getting s i c k and needing to attend to Putting the I l l n e s s (back) i n i t s Place: It s the nausea that ever comes back to the point - i t warns me. I have gotten b r o n c h i t i s back a couple of times since then [recovered] because I haven't paid attention to the nausea....I have taken some of my si c k days because I take them to sleep. Pa r t i c i p a n t s talked about each of the Relational Processes having important goals that needed to be achieved i n order to master that process. For example, the process of Legitimizing involved being believed and being 102 d i a g n o s e d , and -understanding and a c c e p t i n g t h e r e a l i t y o f t h e i l l n e s s . P u t t i n g t h e I l l n e s s i n i t s P l a c e r e q u i r e d h e a l i n g o f mind, body and s p i r i t , and n e g o t i a t i n g t h e c r i t i c a l b a l a n c e o f l i v i n g one's l i f e w i t h i n t h e l i m i t a t i o n s imposed by CFS. R e d e f i n i n g H e a l t h y S e l f i n c l u d e d a c c e p t i n g a new l i f e s t y l e and a c c e p t i n g CFS as a background h a b i t a n t i n one's l i f e . The d a t a i n d i c a t e d t h a t p a r t i c i p a n t s who o n l y p a r t i a l l y r e a c h e d p r o c e s s g o a l s , d i d show improvement, and te n d e d t o p e r c e i v e t h e m s e l v e s as r e c o v e r i n g , b u t not y e t r e c o v e r e d . D a v i d p r o v i d e d an example of a p e r s o n who had ( a t t h a t t i m e ) o n l y p a r t i a l l y a c h i e v e d h i s p h y s i c a l and s o u l h e a l i n g work. As he s a i d , "My tendency i s t o s t i c k more t o t h e d i e t and body s t u f f because i t i s j u s t more c o n c r e t e . . . . I keep r e a l i z i n g t h a t t h e mind keeps coming back, I wanted t o n e g l e c t t h e mind p a r t , because i t i s e a s i e r n o t t o work w i t h i t . " As he s a i d , he t h o r o u g h l y engaged i n p h y s i c a l h e a l i n g , b u t a l t h o u g h he r e c o g n i z e d t h e need t o a l s o work w i t h " t h e mind", he had o n l y m i n i m a l l y d a b b l e d w i t h i t . The above o v e r v i e w has o r i e n t e d t h e r e a d e r t o t h e o v e r a l l c o n c e p t o f t h e R e l a t i o n a l P r o c e s s e s . The d i s c u s s i o n w i l l now f o c u s i n g r e a t e r d e t a i l on each of t h e t h r e e p r o c e s s e s and t h e i r main g o a l s . L e g i t i m i z i n g L e g i t i m i z i n g r e f e r r e d t o t h e a c t i o n s , e n d e a v o r s , and t h i n k i n g p r o c e s s e s w h i c h p a r t i c i p a n t s used i n an a t t e m p t t o a f f i r m t h e g e n u i n e n e s s o f t h e i r i l l n e s s e x p e r i e n c e and t o l a b e l i t s i d e n t i t y . L e g i t i m i z i n g v a l i d a t e d t h e r e a l n e s s o f t h e i l l n e s s f o r p a r t i c i p a n t s and o t h e r s . I n t h e i L e g i t i m i z i n g p r o c e s s , p a r t i c i p a n t s needed t o a c q u i r e a l a b e l f o r t h e c o n d i t i o n , d e v e l o p u n d e r s t a n d i n g about t h e i l l n e s s , and l e a r n t o a c c e p t t h e r e a l i t y o f CFS f o r them. R a c h e l t o l d about she and h e r husband s e e k i n g a f f i r m a t i o n and u n d e r s t a n d i n g of h e r i l l n e s s : " I was j u s t d e v a s t a t e d . My 103 husband would come to doctor's appointments with me, so concerned of course. What was happening here? What was this? And getting no answers." She f i n a l l y (quite r e l u c t a n t l y ) went to a naturopath, who affirmed her experience: There were some things that he said that I r e a l l y knew he was r i g h t on what was wrong with me. Like I would say such and such, such and such, and he would confirm i t by saying. 'And do you also have...?' He knew what I was t a l k i n g about, whereas my general p r a c t i t i o n e r didn't. P a r t i c i p a n t s indicated that ultimately, i n order to achieve the goals of Legitimizing, they had to be accomplished i n t e r n a l l y . That i s , regardless of others' opinions, p a r t i c i p a n t s needed to believe and accept the r e a l i t y of t h e i r i l l n e s s . L egitimizing was also an external process inv o l v i n g society, health care professionals, insurance companies, work colleagues, friends, family, and others. I t seemed a matter of chance as to whether a person was externally l e g i t i m i z e d or not. Compare Helene and Eileen's experiences. Helene was cons i s t e n t l y validated by her doctor and her family: "I never had anyone say, 'Oh, i t s i n your head.' Not once! My husband never, ever so much as sighed the thought....I never ever had anything l i k e that, and I think i t i s very important." Helene's external and i n t e r n a l Legitimizing allowed her to move on to give her f u l l a t tention to Putting the I l l n e s s i n i t s Place: Taking the advice of my doctor and learning and l i s t e n i n g to everything I've been taught or I have learned about t h i s p a r t i c u l a r disease and putting i t together... The thing to do here was to get over t h i s thing. That was my thing. As i s evident i n Eileen's statement below, she d i d not have Helene's luck: My family was no help. I t was because I had f i v e c h i l d r e n then and they figured that was why I was worn put....At f i r s t the doctor s a i d i t was a post partum thing. I knew i t wasn't because when I f i r s t came home from the h o s p i t a l , I f e l t very good....I went to the 104 doctor and he just laughed. Eileen's story revealed numerous other s i t u a t i o n s of lack of v a l i d a t i o n from others. Even though her i l l n e s s was not externally validated, she d i d go on to understand the nature of her condition. Although she said, "I've never r e a l l y thought about i t as an i l l n e s s " , she d i d eventually l e g i t i m i z e her i l l n e s s experience. She sought to make sense of her experiences and sought information. E i l e e n t o l d about reading about CFS i n a magazine and thinking, "Oh gee. That f i t s so p e r f e c t l y " . When Ei l e e n f i n a l l y was t o l d by a medical doctor she had CFS, she "was already s t a r t i n g to f e e l better then." E i l e e n and Helene's s t o r i e s demonstrate that a person was fortunate to receive external Legitimizing, but i t s absence di d not necessarily block the person from i n t e r n a l l y achieving the goals o f Legitimizing. The data indicated that Choice Making determined the i n d i v i d u a l 1 s response to the presence or absence of external Legitimizing. Others who did have external v a l i d a t i o n d i d not make choices which led to i n t e r n a l v a l i d a t i o n . Susan's story provides an example. Even though she had been exte r n a l l y l e g i t i m i z e d by a medical doctor, she could not accept the r e a l i t y of her i l l n e s s . Her motivation to be l i k e her "active f r i e n d s " influenced her choice not to di s c l o s e her CFS to friend s . In t h e i r presence she t r i e d to behave as i f she d i d not have CFS. She had not i n t e r n a l l y l e g i t i m i z e d her i l l n e s s . P a r t i c i p a n t s t o l d about the powerful p o s i t i o n medical doctors had i n Legitimizing i l l n e s s . Rachel and Annette were t y p i c a l of p a r t i c i p a n t ' s b e l i e f s i n r e l a t i o n to doctors. Rachel said, "I had been ra i s e d to believe that they [doctors] knew everything and you have to tr u s t your doctor". When Annette was asked why she continued with a doctor who was not supportive and who offered no help, she said, "Maybe i t goes back to 105 respect for the'medical profession." Thus i t was no surprise that p a r t i c i p a n t s persisted with physicians who would not or could not le g i t i m i z e people's CFS experiences. Rachel t o l d about her physician refusing to confirm a previous CFS diagnosis (by a partner physician) and subsequently refusing to r e f e r her to a CFS s p e c i a l i s t that Rachel had heard about from a f r i e n d : You aren't r e a l l y being l i s t e n e d to [by the doctor]. I would take her materials on CFS, and she would just poo-poo them. Wasn't interested. When I asked to be ref e r r e d to Vancouver, she was so against that. I had to i n s i s t , and she f i n a l l y d i d . And then, we never ever got a c a l l back and she wouldn't follow i t up. So I wouldn't go [to that doctor] l a s t year....If I was sick enough, I would just go to a walk-in c l i n i c instead of seeing her, my general p r a c t i t i o n e r . Rachel went on to t e l l about f i n a l l y going back to the same doctor because of back pain: Once again, she absolutely would not buy i t [CFS], and gave me a pamphlet on depression. I wasn't even i n there for that [CFS]. I was i n there for my back, which I have now discovered through a scan i s a degenerated disk. Don reported h i s experience with t r y i n g to get affi r m a t i o n of, and help for hi s CFS associated depression: I had a family doctor who wasn't a l l that great. He wasn't very receptive"to emotions. I r e c a l l being i n the doctor's o f f i c e and having almost to force him to give me a name of a p s y c h i a t r i s t that I could t a l k to. Part i c i p a n t s also t o l d about the authority medical doctors had i n Legitimizing t h e i r need for s i c k leave. Speaking about persevering with work for a year a f t e r her body was unable to handle i t , Monica said, "I don't f e e l the medical profession was supportive at a l l . How else can you go off work i f your doctor won't support you?" A l l a n t o l d of his medical s p e c i a l i s t providing the most valuable testimony i n his d i s a b i l i t y hearings. Raine's union required the diagnoses of a medical s p e c i a l i s t i n order to continue her d i s a b i l i t y payments: "Right now I have to figure out 106 whether I should persevere with long term d i s a b i l i t y . What I have been t o l d by the union i s that i f you are not diagnosed by a s p e c i a l i s t , [you do not q u a l i f y ] . " When pa r t i c i p a n t s were a c t i v e l y engaged i n the Legi t i m i z i n g process, the i l l n e s s generally seemed to hold a foreground p o s i t i o n i n the re l a t i o n s h i p . Annette t o l d about the intruding nature of the i l l n e s s when she i n i t i a l l y was Legitimizing: I went through a b i t of a negative time with him [doctor] during that time because he just seemed to be putting me down every time I came to see him, and yet I was always f e e l i n g s i c k . I t didn't matter what tests he sent me for, they always came back negative, and he would say, 'Good news, i t s negative'. And I would cry and say, I don't want i t to be negative. I want i t to be p o s i t i v e . I want to know what I have'. Although the Legitimizing process was cons i s t e n t l y i n i t i a t e d early i n the p a r t i c i p a n t s ' r e l a t i o n s h i p with t h e i r i l l n e s s , not a l l achieved i t e f f i c i e n t l y . Some needed or were forced to l i n g e r i n i t . Helene p r i m a r i l y accomplished the Legitimizing process early; whereas, A l l a n and Susan c a r r i e d i t as an active process, constantly aware of CFS holding a foreground p o s i t i o n i n t h e i r l i v e s . In h i s lengthy d i s a b i l i t y b a t t l e with hi s professional union, Allan's Choice Making centred around proving that he r e a l l y was sick, which ultimately kept him i n a Blank Wall p o s i t i o n . The ongoing need to l e g i t i m i z e kept the i l l n e s s i n the foreground, and in t e r f e r e d with Allan's healing: "If I could concentrate a l l my energies on getting better [rather than f i g h t i n g for d i s a b i l i t y ] , I would get better fas t e r than I am." Once i n t e r n a l Legitimizing had been accomplished, occasional goals r e l a t i n g to the process arose, but were taken i n s t r i d e . For example, Helene t o l d about being prepared f o r an exchange doctor's possible scepticism on her f i r s t meeting with him: "Now what i s going to happen? I 107 was at that point where I thought, i f he says one word to me about i t being i n my head, I am out of that o f f i c e . I am looking for another doctor." The above overview of the Legitimizing process serves as a basis for the following discussion on the two main goals of t h i s process: (a) to be believed and diagnosed ( i n t e r n a l l y , and desirably e x t e r n a l l y ) , and (b) to understand the nature and to accept the r e a l i t y of t h e i r i l l n e s s . P a r t i c i p a n t s who accomplished these goals, s u c c e s s f u l l y accomplished the Legitimizing process, and could f u l l y move on to focus on the other two processes. Being Believed and Being Diagnosed In the Legitimizing process, p a r t i c i p a n t s i n i t i a l l y seemed to need to be believed and to be diagnosed by t h e i r doctors. They had a strong need for t h e i r physicians to believe the realness of t h e i r i l l n e s s experience. When the doctor believed, then family, employers, colleagues, friends, and the p a r t i c i p a n t s themselves were more l i k e l y to believe. When the doctor believed, p a r t i c i p a n t s ' experiences were authenticized, and that went a long way i n the Legitimizing process. Even when such support was not forthcoming from the doctor, c l i e n t s were not t o t a l l y blocked i n Legitimizing. As indicated e a r l i e r i n t h i s section, the bottom l i n e i n achieving Legitimizing was i n t e r n a l i z i n g the process, which meant b e l i e v i n g the r e a l i t y of one's own i l l n e s s experience, and deciding for oneself about the l a b e l of the i l l n e s s . Florence and Helene were believed by t h e i r doctors, and they considered themselves fortunate. They knew that being believed was not necessarily r e l a t e d to the devastating symptoms they were experiencing, but to the f a c t that they had known t h e i r physicians for a long time and to t h e i r h i s t o r y of only seeking attention for v a l i d reasons. As Florence 108 said, "My doctor knew me and believed i n me....He knew I wasn't a hypochondriac...where I would l a t c h onto an i l l n e s s and enjoy i t . " Helene's experience was very s i m i l a r : "[My doctor] knows I'm not i n the o f f i c e unless I'm very i l l or he sees me once a year for a medical. So he knows I am not crying wolf." When the doctor d i d not believe or when the doctor d i d not convincingly and supportively communicate the diagnosis, p a r t i c i p a n t s were sometimes l e f t questioning the r e a l i t y of t h e i r own perceptions of t h e i r i l l n e s s experience. As Monica said, "Sometimes I wonder i f i t i s i n my head". Pa r t i c i p a n t s t o l d about physicians who d i d not believe or provide support: "The doctor I was going to didn't even believe that CFS e x i s t [ e d ] " (David). "I went to the doctor and he just laughed....I know my doctor's reaction was just, 'Oh, just buck up'" (Eileen). "[I] had a problem with the general p r a c t i t i o n e r who didn't believe i n CFS....An old B r i t who wanted proof, and with CFS, you can't supply that" (A l l a n ) . As stated e a r l i e r , not being believed or supported by t h e i r doctors d i d not need to t o t a l l y block p a r t i c i p a n t s i n t h e i r Legitimizing work. The data indicated that i n t e r n a l Legitimizing was the e s s e n t i a l component. Lacking external Legitimizing just made accomplishing the process more d i f f i c u l t , e s p e c i a l l y for p a r t i c i p a n t s who strongly believed that physicians had greater influence on t h e i r healing than they d i d themselves. The data indicated that Legitimizing was more e f f e c t i v e when a diagnosis was promptly and compassionately delivered. Being medically diagnosed took from one month to eight years. As stated e a r l i e r , Helene's early diagnosis which was delivered i n a supportive manner seemed to allow her to work through the Legitimizing process e f f i c i e n t l y and to put i t aside. That i s , she d i d not need to continue putting energy into i t , but 109 confidently moved .on along her healing journey to focus on Putting the I l l n e s s i n i t s Place. When pa r t i c i p a n t s d i d not get a medical diagnosis early i n the i l l n e s s experience (Don), when the diagnosis was de l i v e r e d i n an unsupportive manner ("The test came back p o s i t i v e . There i s nothing I can do for you. Goodbye." [Annette]), or when p a r t i c i p a n t s or society d i d not completely accept the diagnosis (Allan, Susan), the Le g i t i m i z i n g process continued to demand attention, and the i l l n e s s remained i n the foreground of the r e l a t i o n s h i p . Understanding and Accepting Being believed and diagnosed was not the only goal important i n the accomplishing the Legitimizing process. There was also a need for p a r t i c i p a n t s to understand the nature of t h e i r i l l n e s s , and to accept the r e a l i t y of i t . Participants needed to make meaning of the i l l n e s s i n some way that would v a l i d a t e t h e i r experience. For example, through reading, Don and David eagerly sought information, and gained an understanding of the i l l n e s s they were r e l a t i n g with. They grew tb accept and embrace the i l l n e s s , and then they d i d not seem to need the confirmation of others. Annette expressed her perception of her i l l n e s s t h i s way: I probably f e l t I had brought a b i t of i t on myself....I think I was beginning to be one of those people who worked a l l the time. And I think t h i s [CFS] stopped me from doing that. She f u l l y accepted the r e a l i t y that she had constructed (reframed) of her i l l n e s s and had no i n t e r e s t i n hearing about any alternate views. Although Annette believed there was a blood t e s t she could have to determine i f she s t i l l had CFS, she d i d not request i t , saying i t d i d not i n t e r e s t her. " [ I f ] I was to go and they were to say to me, 'Oh, you're s t i l l r e a l l y sick', i t wouldn't change how I am f e e l i n g r i g h t now....Whether I have 110 s t i l l got i t , or haven't go i t , o r had i t or didn't have i t , doesn't matter. Not now." Florence's personal meaning of her horrendous i l l n e s s experience served to make i t possible for her to accept i t . She t o l d about learning to accept her CFS: "Well, what could, I do? I could e i t h e r accept i t or f i g h t it....When you are going through something l i k e that that i s beyond your control, you have to be kind to yourself." Don, David, Annette, Helene, and Florence developed an understanding of t h e i r CFS which gave them personal meaning. They accepted the r e a l i t y of t h e i r experiences with CFS, and i n that sense l e g i t i m i z e d i t s existence. Susan's scenario was d i f f e r e n t . She had been medically diagnosed, and showed a written document to prove i t . Susan had consulted numerous alternate healers, a l l of whom provided information and supported her diagnosis. She also sought information through reading. She seemed to have information about the i l l n e s s . And yet, she remained a c t i v e l y engaged i n the Legitimizing process. She was i n a dilemma, seeking more and more' external v a l i d a t i o n , yet unable to accept the r e a l i t y of the i l l n e s s h e r s e l f . On one hand, her b e l i e f s required her to be medically l e g i t i m i z e d : "What I need i s some medical doctor to t e l l me, 'Yes, you are s i c k ' . " On the other hand, her esteem needs required her to disregard the i l l n e s s : "I s t i l l don't t e l l people that I'm dealing with t h i s because I don't want to deal with t h e i r scepticism.... I want them [to understand] that i t i s not as easy for me as for you. Please understand." As i s evident i n Susan's example, i n order to l e g i t i m i z e the i l l n e s s , p a r t i c i p a n t s needed to learn to make meaning of the nature of the i l l n e s s and to accept the r e a l i t y of the i l l n e s s experience. A f t e r a l l , i t i s d i f f i c u l t to have a r e l a t i o n s h i p with something that i s not defined or I l l appears l i k e a-phantom. Monica's Choice Making had not allowed her to accept the r e a l i t y of her i l l n e s s . She said, "I don't even think I have accepted i t t o t a l l y . " Annette and Ei l e e n seemed to sum up the personal goal of the Legitimizing process: "People who are w i l l i n g to accept that t h i s i s the way i t i s , but I can change things, [can grow beyond CFS]. Not just accepting and staying and stagnating there" (Annette). "You have to accept, and not just stay there. You have to accept and move on" (Ei l e e n ) . Once p a r t i c i p a n t s i n t e r n a l l y believed, understood and accepted t h e i r i l l n e s s s i t u a t i o n , they had f u l l y met the goals of the Legitimizing process, and were then ready to devote t h e i r energy to Putting the I l l n e s s i n i t s Place. Putting the I l l n e s s i n i t s Place When pa r t i c i p a n t s f i r s t became aware of the r e a l i t y of t h e i r r e l a t i o n s h i p with CFS, they expressed f e e l i n g a sense of l o s i n g c o n t r o l . They were b a f f l e d and overwhelmed by the unfamiliar symptoms and the unusual ways "their bodies were behaving. Florence described her devastating introduction "to CFS: I had absolutely no symptoms one day, and the next day I couldn't get out of bed. Total exhaustion.... If you were ever so t i r e d that you even considered whether or not you could r o l l your eyeballs i n your socket that would be the way you could describe the exhaustion....My v i t a l energies were completely gone. That's the only way I can describe that. Helene described her reaction to her i l l n e s s t h i s way: "More than anything I was t r y i n g to figure out why t h i s was happening because I was always a very healthy person. I just couldn't understand why I was s i c k . " The loss of control experienced by a l l p a r t i c i p a n t s i s evident i n the following statements: "I just f e l t I didn't have any control over my l i f e . . . . I f e l t 112 quite trapped" '(Eileen). Rachel expressed i t t h i s way: "You loose control when you loose your health. You have never had to think, about it....Then a l l of a sudden i t i s going and you are not i n control any more." Helene said : I don't l i k e being i l l . . . I couldn't stand the f e e l i n g of not being well. There i s something i n me that just abhors that f e e l i n g of not being well...I guess maybe i t i s not being i n control of my body. Something else has taken over and I don't control i t any more. The above statements communicated the loss of control experienced by a l l p a r t i c i p a n t s when they f i r s t came to know they were i l l with CFS. Putting the I l l n e s s i n i t s Place i s the process through which p a r t i c i p a n t s learned what was necessary i n order to gain and keep control of t h e i r bodies and t h e i r l i v e s . Working to achieve the goals of t h i s process can be conceptualized as the person and the i l l n e s s s h i f t i n g back and forth, foreground and background, as pa r t i c i p a n t s t r i e d to regain the control over t h e i r body that they had l o s t to CFS. The focus of t h i s process was for pa r t i c i p a n t s to e s t a b l i s h a sense of ownership of the foreground space i n the r e l a t i o n s h i p with t h e i r i l l n e s s : to gain c o n t r o l . As p a r t i c i p a n t s were recovering they t o l d about' learning how to regain control over t h e i r body - learning to make choices that had Moving On outcomes. For example, they learned to l i s t e n to t h e i r bodies i n order to make choices that enhanced t h e i r well being. They learned to respond to t h e i r mind, body, and s p i r i t needs. They learned to respect the l i m i t s that CFS put on t h e i r bodies. With that learning, p a r t i c i p a n t s f e l t a sense of increased control - more foreground space for the person. E i l e e n t o l d about the increased control which was the outcome of choosing to stand up for herself and to look a f t e r herself, "Then I r e a l l y started to take co n t r o l of my own l i f e . That i s when my CFS started to go away." 113 Once recovered, p a r t i c i p a n t s again expressed control of t h e i r l i v e s , as i s evident i n the following statement: Recovery for me i s not being dependent. It i s being able to govern my whole d a i l y a c t i v i t i e s on a l e v e l where I can be s e l f s u f f i c i e n t . . . . Even i n the fact that I have decided not to overextend myself i n some areas i s a choice of my own control (Florence). Annette who said she "was rai s e d to please others" demonstrated her newly learned s k i l l when she t o l d about choosing to return to work against her doctor's recommendation: "This was just another case of me deciding what was best for me....I think I am t r y i n g to sort of say to people, 'Thank you for your advice. I w i l l make my decision'." Participants who d i d not perceive themselves i n recovery (considered themselves unwell) d i d not communicate t h i s renewed and increased sense of co n t r o l . A l l a n and Monica spoke as i f t h e i r i l l n e s s had a mind and a l i f e of i t s own over which they had no influence (CFS t r u l y was i n the foreground). There seemed to be a resistance to b e l i e v i n g that they had any influence on, or r e s p o n s i b i l i t y for dealing with t h e i r CFS. When A l l a n was asked what had helped with h i s i l l n e s s and what had not, he responded, "These things,are r e a l l y hard to t e l l because I've tended to cycle quite a b i t through my symptoms. I don't know i f i t i s because of anything I have done." In r e l a t i o n to a successful demonstration i n which he used hi s mind to energize h i s body, although A l l a n was amazed, he chose to negate the success and to downplay h i s a b i l i t y : "Had anybody showed me that [his experience], I would have thought i t was hocus-pocus. But t h i s was me, and i t worked. Now, I can't necessarily do that." Although the mind-body technique showed p o t e n t i a l i n Putting the I l l n e s s i n i t s Place, A l l a n d i d not choose to use i t . Like A l l a n , Monica d i d not perceive she had any control of her 114 i l l n e s s . She spoke of experiencing "cycles" that "out of the blue" just happened. When asked i f she perceived the cycles happened regardless of any Choice Making on her part, her quick response was, "Yes. D e f i n i t e l y ! " The focus for pa r t i c i p a n t s i n t h i s process was to reclaim a f e e l i n g of control i n t h e i r r e l a t i o n s h i p with CFS. The data suggested that two goals must be met i n order to reclaim c o n t r o l : healing of the body, mind, and s p i r i t , and negotiating the c r i t i c a l balance. Healing of the Body, Mind, and S p i r i t P a r t i c i p a n t s perceived that when they became i l l with CFS, t h e i r body was out of balance. As E i l e e n said, "I think that i s probably a l o t of the problem I had - why a l l those things happened. It i s because my homeostasis was not regulating i t s e l f properly." She went on to say, " I t i s not just p h y s i c a l . I t i s mental and physical....Mind, body, s p i r i t : i t s a l l one.... I f e e l everything was balanced the wrong way." The physical nature of the i l l n e s s was obvious to pa r t i c i p a n t s , and i t was no surprise that they sought numerous physical healing modalities. What was not o r i g i n a l l y as obvious was the need most p a r t i c i p a n t s had to also employ healing of the mind and s p i r i t . Eileen's statement above and Raine's below describe t h i s h o l i s t i c perspective: Even though I am p h y s i c a l l y i l l , the part of getting there was my i n a b i l i t y to see what I was doing to myself. I know that I have physical s e n s i t i v i t i e s . . . . N o t recognizing those was part of what made me i l l . Not recognizing what my [emotional] needs were i s part of what made me so i l l . P a r t i c i p a n t s used d i f f e r e n t terminology to r e f e r to the concept of t h e i r sense of imbalance being more than t h e i r physical body. Some spoke about mind and body; some used body, mind, and s p i r i t ; some used mental and physical; some ref e r r e d to physical and s p i r i t u a l ; and some used terminology which connected the being to the larger universal force. "Soul" 115 evolved as the ?term used to represent those non-physical aspects of the h o l i s t i c a l l y perceived being. Participants spoke of t h e i r "physical healing" and t h e i r "soul healing", and these terms w i l l be used i n t h i s report. P a r t i c i p a n t s ' comfort and experience with the soul part of s e l f varied greatly, but a l l p a r t i c i p a n t s acknowledged i t s value. Florence, Don, Eile e n , Raine, and Rachel embraced the concept t o t a l l y . Their healing programs were based on the premise that mind, body, and s p i r i t are one. Rachel said, "The mind and the body are very much connected. Very much so. So for each person, whatever i t takes for them to get that soul part, they have to do that: s p i r i t u a l , fun, support, whatever. Whatever i t takes for them." Don t o l d about the importance of prayer to h i s healing: One of the primary things was that I got to the point where for me prayer and meditation wasn't a [matter of] choice. Like do i t and reach out for some other unknown being for whatever i t might be, assistance or support. Or give up, forget i t . Annette and Helene valued soul healing, but d i d not e x p l i c i t l y express i t that way. Annette said, "I have done more as the years go on about s e l f and f e e l i n g of the, s e l f and the power of the s e l f . . . . I r e a l l y think that a l o t of things could be helped by your a t t i t u d e . " I n i t i a l l y , Helene seemed somewhat unaware of the soul healing she had done to recover. As she thought about i t she r e a l i z e d , Maybe for me i t i s a b e l i e f i n myself...and just learning to l e t go, too. That i s part of the soul work. And being better to yourself...Just allowing [yourself] to take a l i t t l e more time, or i f you want to do just nothing today, you can. I r e a l l y couldn't do that [before]. David said that although he believed i n and respected the connectedness of mind and body, at the present time he was more comfortable focussing on physical healing approaches. As David said, "I keep r e a l i z i n g 116 that the mind keeps coming back. I wanted to neglect the mind part because [for me] i t i s easier not to work with it....The power of the mind to balance the body." Monica, Allan, and Susan were less comfortable t a l k i n g about i t . They seemed to perceive that i f the mind could be used to heal CFS symptoms, that implied that the i l l n e s s might be fabricated by the mind. Susan described her preference to work with the p h y s i c a l : In the past I probably wouldn't have wanted to hear about i t [psychoneuroimmunology] because a l l my l i f e I was t o l d i t was i n my head. And so, I sort of shied away from i t when I heard about i t because, 'Okay, you have made yourself s i c k ' . But that doesn't mean the symptoms aren't r e a l , that you aren't r e a l l y sick....So I focus on the physical s t u f f : food, exercise. Healing the body, mind, and s p i r i t encompassed two categories of healing: physical healing, and what the p a r t i c i p a n t s and the researcher came to c a l l soul healing. The notion of "soul" healing r e f e r s to the mental, s p i r i t u a l , psychological, emotional, and r e l a t i o n a l healing approaches used by p a r t i c i p a n t s to put the i l l n e s s i n i t s place. P a r t i c i p a n t s seemed to have unique healing work to do i n each category, and seemed to need to do t h e i r appropriate physical and soul work i n order to maximize recovery and to maintain wellness. Healing approaches that p a r t i c i p a n t s t r i e d were dependent on t h e i r Choice Making which was driven by t h e i r information, b e l i e f s , and motivation (evolving from t h e i r esteem needs). Physical healing. In response to t h e i r devastating physical symptoms, p a r t i c i p a n t s turned to physical healing modalities with the outcome hope of regaining control over t h e i r bodies and t h e i r l i v e s . As with a l l Choice Making along t h e i r recovery pathway, some choices ended i n Moving On, and some i n Blank 117 Walls. Pa r t i c i p a n t s t r i e d numerous physical healing approaches. Some eagerly chose anything a v a i l a b l e (Raine, Susan, David). As Susan said, "I think I have t r i e d everything". Others were more s e l e c t i v e and somewhat hesitant i n t h e i r Choice Making (Helene, Rachel, Annette). Rachel reported deciding not to take some of the numerous medications prescribed for her: Even though I was as weak as I was emotionally and everything else, I'm glad I didn't take a l l those medications. Because I think I could have done a l o t of harm to myself. So I was very s e l e c t i v e i n what I did take. I have never been one to take a l o t of drugs anyways. A l l p a r t i c i p a n t s reported e i t h e r being offered or prescribed an antidepressant. Except for Don (who reported r e l i e f from symptoms of " c l i n i c a l depression" with the use of antidepressants over a short period of time) none of the p a r t i c i p a n t s who t r i e d antidepressants found them us e f u l . Several commented on d i s l i k i n g the side e f f e c t s experienced. Pa r t i c i p a n t s denied using any of the a n t i v i r a l medications or immune system boosters reported i n the l i t e r a t u r e . The only person who experienced an invasive treatment was Monica who received d a i l y vitamin B12 i n j e c t i o n s f o r one and a half years - which she reported to be of no benefit. Generally, most p a r t i c i p a n t s reported benefit from approaches r e l a t e d to l i f e s t y l e changes that decreased demands and stress, provided for a balance of exercise and rest, and focused on d i e t changes. As Don said, " I t r e a l l y i s e s s e n t i a l l y a l i f e s t y l e change." The physical healing approaches which p a r t i c i p a n t s reported using were too numerous to l i s t here. As a means of providing the reader with a sense of the v a r i e t y of p a r t i c i p a n t s ' physical healing work, the physical healing modalities used by Annette and David w i l l be presented. The reader i s reminded that a p a r t i c i p a n t generally t r i e d numerous approaches along the healing pathway, but d i d not 118 use a l l of them at the same time. A l l recovered p a r t i c i p a n t s had some aspects of physical healing i n t h e i r "maintenance program" (Don). Annette had a two month sic k leave, during which she reportedly s l e p t the whole time. She c a l l e d i t her "hibernation". She said, "That was when I came to a l o t of decisions about my l i f e s t y l e . " After the hibernation, she went back to work, but with decreased expectations of h e r s e l f . Because of her strong need to work, she chose to adjust other variables so as to conserve her energy for the a c t i v i t y she valued. She h i r e d a housekeeper, always l e f t work on time, and never took work home with her. She turned down requests which required her time or energy. Annette convinced h e r s e l f that she was "not indispensable", and that her workplace could survive without her: "They are not going to completely f a l l apart...without me." Whenever she f e l t her symptoms threatening, she took two days off work to rest up. If e s p e c i a l l y strenuous work was anticipated, she took two days off before the more demanding period. Her most useful remedies were: taking a h a l f Gravol p i l l f o r sleep, and using "Seabands" ( e l a s t i c i z e d bands which have a knob that goes over a pressure point on the wrist) to control nausea. She developed her e n t i r e healing program on her own. One not so h e l p f u l approach from e a r l i e r i n her i l l n e s s was using a prescribed amphetamine, which she became addicted to. On the recommendation of a colleague Annette also took a herbal medication c a l l e d "Power Trim." She perceived i t was meant to enhance her energy and control her weight. Although she reported that she f e l t well on i t and that she took i t " f o r years", she discontinued i t when i t was banned i n Canada. Diet and exercise were less important approaches for Annette. She f e l t there was some benefit from changing to a f a t - f r e e d i e t , but generally j u s t focused on eating h e a l t h i l y . 119 I n i t i a l l y she found i t d i f f i c u l t to t r y to comply with her doctor's order to "get out and walk." She said: I would t r y i t , but I would get a couple of blocks away from home, and I would l i t e r a l l y s i t down on the sidewalk and cry because I didn't know how I was going to get home again. I was so t i r e d . Later on she t r i e d to walk d a i l y , and f e l t that was b e n e f i c i a l to her maintenance program. Speaking i n retrospect, Annette wondered whether she could not walk, or whether she chose not to walk: I probably could have i f I decided I wanted to. I can do just about anything I decide I. want to, so I probably could have. I t just didn't seem l i k e something I wanted to do at the time. And I just didn't do i t . Annette's choices are c l e a r l y described above - the outcomes of her Choice Making were successful i n Putting the I l l n e s s i n i t s Place. David's physical healing approaches were quite d i f f e r e n t from Annette's. His focus was on d i e t , supplements, l i g h t exercise, and calming his l i f e s t y l e . By h i s own admission, David became f a n a t i c a l about h i s d i e t . Based on a book he read early i n h i s i l l n e s s , he made a "cold turkey" switch from h i s usual " a l l American junk food d i e t " to a purely vegan one. He l a t e r modified h i s d i e t to what he perceived as a better balance, including wild meats, but i n s i s t i n g on or g a n i c a l l y grown products. His focus on supplements was an equally strong passion for him, and included minerals, vitamins, herbals, homeopathics, and enzymes. He adjusted these throughout h i s recovery. David's use of exercise f o r healing changed throughout h i s recovery. At f i r s t he d i d not exercise at a l l : "I can remember them [friends] t e l l i n g me to go for walks around the block. I couldn't imagine doing that. Going to the couch and back to bed was about i t . " He gradually developed h i s strength and endurance so that he was able to cycle or walk every day as well as do some yoga and t a i - c h i . Sleep was 120 not an important focus for him, but r e l a x a t i o n exercises and slowing down his l i f e s t y l e were used as a means for r e s t i n g better: "I have to stop myself from getting too busy and too much into running around and from spending too much time d r i v i n g . " In the past he had also used massage therapy and c h i r o p r a c t i c adjustments. Soul healing. Soul healing r e f e r r e d to the v a r i e t y of mental, psychological, s p i r i t u a l , emotional, and r e l a t i o n a l ways of r e s t o r i n g h o l i s t i c well being along the recovery pathway. Mental approaches that c l i e n t s used included mind-body methods such as imagery, affirmations, and hypnosis; and cognitive avenues such a " s e l f - t a l k " , normalizing, minimizing, or refraining. P a r t i c i p a n t s reported using s p i r i t u a l healing through prayer, prayer groups, being anointed by Elders of the church, drawing strength from the power of the universe, and gaining support and strength from the memory of a deceased grandmother. Talking about h i s recovery from CFS, Don said, "Sometimes I think i t was as basic as a miracle." Emotional and r e l a t i o n a l healing approaches encompassed support from others; learning to stand up for oneself; focussing on u p l i f t i n g , p o s i t i v e and fun things (the joy f a c t o r ) ; and protecting oneself from stressors. Rachel and Florence's soul healing work w i l l be described as representative of the unique ways that p a r t i c i p a n t s used soul healing along t h e i r pathway to recovery. Rachel f e l t tremendous healing from the power of prayer and from the support and caring of her prayer group. She said: "Part of i t was someone else b e l i e v i n g me. Part of i t was someone praying, and that made such a d i f f e r e n c e . It gave me hope...It was the f i r s t time I f e l t hope i n years....The prayer r e a l l y helped." Another soul benefit from her 121 connection with her prayer group was developing a s p i r i t u a l f a i t h : "I have grown myself, s p i r i t u a l l y a l o t . I know I don't have to be i n t h i s alone. I have God." Making herself a p r i o r i t y , l e t t i n g go of demands she placed on her s e l f , and learning "to become more assertive with other people" were other soul healing approaches that Rachel used. Another important area of soul healing was laughing. She rented comedies and t r i e d to surround herself with p o s i t i v e , u p l i f t i n g people: "Another thing that r e a l l y helped was comedies - getting videos that were comedies. I had to be very c a r e f u l not to be around a l o t of down people." The support and b e l i e v i n g from her husband and some friends was another valuable source of soul healing for Rachel. I had a support system of people who had had CFS longer than me. They helped i n giving me information, l i s t e n i n g , [and] a l l those things....I have a supportive husband. I don't know what other people do, I mean other people don't [have supportive spouses]....1 had a very s p e c i a l g i r l f r i e n d , and she and I walked every Wednesday and we often went out for lunch. So again, that was r e a l l y p o s i t i v e . Rachel sums up her soul healing t h i s way: The part.that i s r e a l l y important i s the p o s i t i v e . I don't think that can be stressed enough.... That means b e l i e v i n g there i s hope. Believing that there i s healing. Having people that believe you -your support system. Having that soul thing. I t doesn't matter i f i t i s r e l i g i o u s or not. But you have to have that soul. The soul i s to give the peace, and [that] there i s a reason for a l l this....Anything p o s i t i v e , fun....There has got to be something p o s i t i v e i n your l i f e , and f i n d i n g i t i f i t i s n ' t there. Florence's soul work needs were s i m i l a r to, and d i f f e r e n t from Rachel's. Florence had a strong s p i r i t u a l b e l i e f before she became i l l . She talked about using prayer to help her t o l e r a t e extremely d i f f i c u l t symptoms and times: "I was praying that God would give me the strength for one more day." When she was into her f i f t h year of i l l n e s s she asked the Elders of her church to anoint her for healing. She said, "That was the turning point 122 i n me getting better. I started recovery from then on." In being anointed she put herself i n God's hands, g i v i n g Him control and promising, "If I am healed, I am going to give my l i f e to you to use i n which ever way that you want i n helping other people." Florence used a mental mechanism she c a l l e d " p o s i t i v e mental choices", through which she reframed the meaning of her experience i n a more p o s i t i v e way so as to maintain a sense of mastery and control over her being. For example, Florence reported being so weak that she could not ambulate from her bed to the bathroom, and could not feed herself or comb her h a i r . That could have been defeating to her, but her " p o s i t i v e mental choices" reframed the meaning as shown i n the following statement: In order to get better, I had to r e s t . I wanted to know what I could do to get better. That's what he [doctor] t o l d me to do to get better, and therefore I looked at i t as being p o s i t i v e , not negative.... I t makes a difference when you are r e s t i n g i f you perceive i t as p o s i t i v e r e s t i n g rather than punishment. You know, i f you are working with your problem to get better, i n my opinion, your chances of recovery are much greater. Florence emphasized how important " p o s i t i v e mental choices" were during her healing journey: I want to make sure you understand how important my p o s i t i v e mental choices were. That i s what c a r r i e d me through. By having that choice I was not f i g h t i n g with i t , and thus undermining my own strength. By going along with i t , I was c a p i t a l i z i n g a l l my strengths. Another mental mechanism that Florence used was perceiving that her i l l n e s s and s u f f e r i n g had a purpose, that i t was preparing her for her l i f e mission. She said, "I just don't believe that I am meant to be dependent on everybody else . [I believe] that I am here for a reason." She went on to say that her "reason" was to provide support and counsel for persons who have been abused. Feeling the support of her doctor and her husband was healing for 123 Florence: f I don't know i f my husband hadn't been the way he was, how I would have been. It would have been very hard....In order to get better, you just can't do i t [alone]. You have to have support. You just can't get better without some support. She f e l t that support was such an important component of healing that a person must somehow f i n d i t : " If they [persons who have CFS] are having d i f f i c u l t y with someone who i s not supporting them, i f they just don't understand, do not stop with that. Go on and f i n d someone who w i l l help." The above discussion has provided the reader with an opportunity to comprehend the concept of the physical and soul healing work which p a r t i c i p a n t s used to put the i l l n e s s i n i t s place. Another way that p a r t i c i p a n t s used to heal mind, body and s p i r i t was through negotiating the c r i t i c a l balance. For the p a r t i c i p a n t s , healing the body, mind, and s p i r i t was a t r i a l and error process of learning what healing modalities worked i n pushing the i l l n e s s into the background of t h e i r l i v e s . The notion of negotiating the c r i t i c a l balance r e l a t e s to learning how to keep the i l l n e s s there. Negotiating the C r i t i c a l Balance E a r l i e r i n t h i s section, Eileen's statement r e f e r r e d to f e e l i n g that "everything was balanced the wrong way" and that her "homeostasis was not regulating i t s e l f properly." A l l p a r t i c i p a n t s expressed t h i s sense of t h e i r bodies being out of balance, and the need to r e - e s t a b l i s h balance. David said, "I go i n and out of phases where I f e e l r e a l l y balanced and r e a l l y grounded....Balance and equilibrium meaning the same thing." Monica expressed i t t h i s way: "My body i s just sort of reacting to everything." Florence said that she focussed on balancing: "Balance i s what makes for an optimum chance to have good h e a l t h . . . b a s i c a l l y the idea i s to use a t o t a l 124 balance i n the'system....That was very important to me because I was so out of control [balance]." Participants reported a f e e l i n g of being out of balance, and a need to bring the body back into equilibrium. They also t o l d about a very narrow margin for balancing, p a r t i c u l a r l y i n the early stage of t h e i r i l l n e s s . At that time, i t took very l i t t l e to bring on symptoms, and each p a r t i c i p a n t had to work hard to learn and keep h i s or her c r i t i c a l balance. Pa r t i c i p a n t s negotiated the c r i t i c a l balance by learning from the outcomes of t h e i r Moving On and Dead End choices. Achieving t h i s goal was an ongoing process, with the terms constantly evolving and changing i n r e l a t i o n to the learning that had been achieved i n healing the body, mind, and s p i r i t . I t became a c r i t i c a l component of maintaining the recovered s e l f . Included i n t h i s category are the notions of l i s t e n i n g to my body and learning l i m i t s . L i s t e n i n g to my body. "Listening to my body" (Helene) was the notion of tuning into the messages that-the body sends about i t s well being. Frequently, p a r t i c i p a n t s perceived that" p r i o r to t h e i r i l l n e s s they had been out of touch with t h e i r body or f e e l i n g s , and that was r e l a t e d to becoming i l l . P a r t i c i p a n t s s a i d that being aware of the body's responses was the best and most r e l i a b l e i n d i c a t o r of the usefulness of a new healing approach or of learning t h e i r l i m i t s . Annette put i t t h i s way: You have to l i s t e n to your body and to yourself.... I'm learning to do that better.... I think I am s t a r t i n g to stop l e t t i n g society pressure me...to l i s t e n to myself more. I usually f i n d i f I do, I am usually r i g h t . If I don't, I wish I had. E i l e e n said, "Trust your own f e e l i n g s within. If you could t r u s t i n that, and turn to that, and be guided by that." Helene expressed her experience 125 t h i s way, "I just knew i n t r i n s i c a l l y that i f I was not f e e l i n g well, I had to just slow down and I had to just r e s t . " Don had learned that "a hard core of exercise" was v i t a l for "maintenance." By l i s t e n i n g to h i s body, he knew when he needed to pay attention to that need: "I just know when I need to get my heart rate up. Whatever the ph y s i o l o g i c a l components of aerobic exercises are, I need." If Don f a i l e d to l i s t e n to h i s body, there would be consequences: If I don't go for a long, long, bike r i d e t h i s afternoon, I w i l l be pooped tomorrow.... I would probably s t a r t o f f being very cranky -that would be the f i r s t thing. Then my sleep patterns would f a l l o f f because I would just end up with some form of insomnia....And that sort of sleep and stress b u i l d up. Rachel summarized the importance of l i s t e n i n g to her body i n r e l a t i o n to s e t t i n g her l i m i t s : "I r e a l i z e d I r e a l l y had to l i s t e n to my body... and [to know] what my l i m i t a t i o n s are." Learning l i m i t s . A l l p a r t i c i p a n t s spoke of the importance of learning l i m i t s i n order to achieve and maintain recovery. Annette expressed i t t h i s way: "Know your l i m i t s and know how to keep them. I think that r e a l l y does say i t a l l because i f you can do that...you can keep your l i f e i n pretty good balance." Keeping l i m i t s maintained the p a r t i c i p a n t s ' state of wellness. That i s , i t kept t h e i r symptoms under c o n t r o l . When pa r t i c i p a n t s d i d not choose to respect t h e i r l i m i t s , they experienced a return of symptoms and a decreased sense of well being. They also spoke of experiencing long term penalties for f a i l i n g to respect t h e i r l i m i t s . Florence put i t t h i s way: A person has to know within themselves whether something i s working or not. Some people w i l l ignore those signals, ignore [that] those a c t i v i t i e s are p u l l i n g them down, and w i l l push beyond that because they are angry at the i l l n e s s . And that r e a l l y impedes recovery.... It cuts out some a c t i v i t i e s for a long time. When making a deliberate choice about challenging t h e i r l i m i t s , 126 p a r t i c i p a n t s generally were t e s t i n g t h e i r l i m i t s or bargaining f o r a new deal. Monica t o l d about knowing that she had forced a l i m i t when she went hiking, and thus she suffered the consequences: "I knew that was too much. I shouldn't have done that. I w i l l probably have to pay for that....I f e l t awful a l l weekend, and that was me paying for i t . " Sometimes Monica challenged her l i m i t s , and there were no immediate i l l e f f e c t s . This happened on a three week holiday. During that time she ate and drank forbidden foods and was much more active than her l i m i t s usually allowed. She f e l t well - u n t i l she came home. Don had a s i m i l a r experience i n wondering whether he could even think of t r y i n g a group b i c y c l e t r i p i n Mexico, but h i s outcome was d i f f e r e n t . He decided to te s t h i s l i m i t s and to take the t r i p . He was pleased to f i n d that: "Almost to the day of going to Mexico, I f e l t better.... The t r i p was no problem, and I haven't looked back since." He a t t r i b u t e d the p o s i t i v e outcome of crossing h i s perceived l i m i t to: The combination of events. Like I had been through a l o t of the s e l f education process, and everything was sort of coming around, but nothingsquite clicked....And just the perception that there was an escape valve, that I didn't have to go on the t r i p , I could e a s i l y change my mind. Susan found i t hard to accept the l i m i t s of her i l l n e s s i n r e l a t i o n to keeping up with her "active f r i e n d s . " She t o l d about t e s t i n g her l i m i t s and bargaining i n order to f i t i n better with peers. When t e s t i n g her l i m i t s by eating a forbidden dessert with her friends she said, "I hope that nothing w i l l happen." When her symptoms increased, she was angry: " I t annoys me. The consequences annoy me." At a time when she had less stress i n her l i f e , Susan bargained with her i l l n e s s : "I haven't been under stress, and I haven't been following my regime at a l l . . . . I t i s sort of equal. I t has sort of compensated. The 127 stress i s gone, but now I'm not having to take care of myself." Annette also used bargaining to keep her i l l n e s s under c o n t r o l . She took two days off work ahead of an anticipated heavy schedule so as to have the reserve to handle the two days she would be exceeding her l i m i t s . The a c t i v i t i e s involved i n Putting the I l l n e s s i n i t s Place helped p a r t i c i p a n t s get to know t h e i r i l l n e s s and themselves better, and to use t h e i r newly gained knowledge to regain and maintain control of t h e i r l i v e s i n t h e i r ongoing r e l a t i o n s h i p with t h e i r i l l n e s s . Throughout t h i s process, p a r t i c i p a n t s experienced many changes, which hopefully were integrated into t h e i r r e d e f i n i t i o n of t h e i r healthy s e l f . Redefining Healthy Self P a r t i c i p a n t s who were recovered spoke about t h e i r health and t h e i r way of l i f e as being d i f f e r e n t from t h e i r p r e - i l l n e s s condition. Annette and Don's testimonies were t y p i c a l . When comparing her present l i f e with her l i f e before having CFS, Annette said, "Oh, i t s much d i f f e r e n t . [Before] I r e a l l y was doing everything to be the super-mom, the super-[professional], the super-wife....[It] f e e l s good." Don put i t t h i s way: "I do believe a f t e r you go through t h i s that...you know a f t e r coming out the other end, you are d i f f e r e n t . You are stronger. D i f f e r e n t . " "Healthy s e l f " was the notion used to r e f e r to the p a r t i c i p a n t s ' perceptions of themselves and t h e i r l i v e s when they considered themselves to be well, meeting t h e i r personal d e f i n i t i o n of s a t i s f a c t o r y health and " s a t i s f a c t o r y l e v e l of functioning" (recovery d e f i n i t i o n ) . Each p a r t i c i p a n t ' s perception of redefined healthy s e l f was analogous with h i s or her concept of recovered self.. Healthy s e l f was opposite to "unwell s e l f " , which the p a r t i c i p a n t s also r e f e r r e d to as " i l l " or "s i c k " . P a r t i c i p a n t s r e f e r r e d to t h e i r unwell s e l f as a time when they f e l t 128 overwhelmed and c o n t r o l l e d by CFS, a_ time when the i l l n e s s was i n the foreground of the r e l a t i o n s h i p . As Helene says: "That f i r s t year I was just s i c k . " E i l e e n spoke of her unwell s e l f as, "I was just t o t a l l y overwhelmed." Healthy s e l f was a time of f e e l i n g i n control of one's l i f e , and of being i n the foreground i n the r e l a t i o n s h i p with CFS. The notion of healthy s e l f and unwell s e l f had to do with the in d i v i d u a l ' s actual functional health compared to t h e i r perception of an acceptable recovered state. When the two matched, the person perceived themselves recovered, and they would have accomplished the goals of Redefining Healthy S e l f . Because of the i n d i v i d u a l determination of healthy s e l f , i t was possible for two persons to be i n very s i m i l a r health s i t u a t i o n s (as defined o b j e c t i v e l y by an outsider), but one person might i d e n t i f y that as t h e i r healthy s e l f ; whereas, the other person might perceive that was s t i l l t h e i r unwell s e l f . For example, compare Annette and Susan. Annette worked f u l l time but used many compensatory measures to keep her i l l n e s s i n i t s place i n order to be able to work. Part of her maintenance program was taking s i c k days to re s t up before or a f t e r taxing work a c t i v i t i e s . Annette considered herself recovered, and was s a t i s f i e d with, and accepted her redefined healthy s e l f . Although Susan also i n t e r m i t t e n t l y worked the equivalent of f u l l time, she d i d not consider herself recovered. Her health and way of l i f e d i d not match her d e f i n i t i o n of what healthy s e l f should be. She resented the l i m i t a t i o n s CFS placed on her and associated such r e s t r i c t i o n s with her unwell s e l f . Susan expressed her p r i o r i t i e s of a healthy s e l f when she explained why she would turn down a f u l l time job considered to be perfect for her: I'm thinking I could do that job. I r e a l l y could i f I was r e a l l y c a r e f u l about other factors. But you know what that means for me. Like s t r i k e , s t r i k e , s t r i k e i n every facet of my l i f e . . . . S o i f I 129 control everything else, I could do i t . But to me i t means, well okay 11m going to have to go to bed very early every night so I'm not t i r e d , so I can get up early. -Well that r e s t r i c t s my l i f e . Considering the l i m i t a t i o n s of her CFS, Susan was not prepared to make the necessary adjustments that t h i s job would impose on her. C l e a r l y her d e f i n i t i o n of healthy s e l f d i d not match her actual functional health. Her d e f i n i t i o n of healthy s e l f required that she could work without g i v i n g any extra considerations to her l i f e s t y l e . The notion of healthy s e l f changed for p a r t i c i p a n t s along the recovery pathway. At f i r s t , t h e i r notion of healthy s e l f was i d e n t i c a l to t h e i r p r e - i l l n e s s concept. Some p a r t i c i p a n t s hung on to that image. As previously discussed, Monica and A l l a n (who d i d not perceive themselves i n recovery) seemed to keep t h e i r p r e - i l l n e s s concept of healthy s e l f . They perceived they had minimal ( i f any) control over t h e i r i l l n e s s and were more i n c l i n e d to i d e n t i f y with t h e i r unwell s e l f concept. A l l a n put i t t h i s way: "I haven't had a normal day i n f i v e years. I guess I won't." Monica seemed to express her reticence to redefine her healthy s e l f i n the following statement: "I don't want to change everything i n my l i f e . I want to keep something as normal, the way I was....You shouldn't have to change your personality t o t a l l y because you are i l l . " This notion of the changing concept of healthy s e l f i s p a r t i c u l a r l y evident i n the v a c i l l a t i o n r e f l e c t e d i n the s t o r i e s t o l d by those p a r t i c i p a n t s who were recovering but not yet recovered. Susan v a c i l l a t e d between sometimes perceiving her actual functional health as close to her healthy s e l f , and at other times as being c l o s e r to her unwell s e l f . Her perceptions of control changed along with whichever s e l f her i l l n e s s experience more c l o s e l y matched. Notice how Susan expressed c o n f l i c t i n g f e e l i n g s i n the following statements. Sometimes she seemed to be t a l k i n g 130 about her healthy s e l f ; whereas, other times she was coming from her unwell s e l f (quotes are from the same interview). "I f e e l l i k e crap....I want to f e e l better....I have been pretty good....I don't want to be t h i s way.... My l i f e s t y l e r i g h t now i s a very high q u a l i t y of l i f e . Like what more do I want?" The notion of healthy s e l f was not necessarily s t a t i c . Some pa r t i c i p a n t s considered i t an ongoing state. P a r t i c i p a n t s ' functional health and t h e i r perceptions of recovered healthy s e l f could continue to evolve. Florence shared her ins i g h t into the concept of the changing recovered s e l f when she said, "I often ask myself, am I s a t i s f i e d with the l e v e l that I am at now, or i s that a compromise.... I compromise now i n what I think i s complete recovery, knowing that I have to do that i n order to be there." The process of Redefining Healthy Self r e l a t e d to two changing v a r i a b l e s : (a) Putting the I l l n e s s i n i t s Place (thus improving functional health), and (b) the p a r t i c i p a n t ' s acceptable d e f i n i t i o n of healthy s e l f . P a r t i c i p a n t s needed to work on the tasks of Putting the I l l n e s s i n i t s Place so as to improve functional health and to have better control of the i l l n e s s . As well, each person needed to accept the r e a l i t i e s of t h e i r recovered health s i t u a t i o n , and incorporate them into t h e i r d e f i n i t i o n of healthy s e l f . The redefined healthy s e l f represented a point at which these two variables met. In essence, the redefined healthy s e l f can be conceptualized as a process of bringing the two variables together - a time when the person's redefined healthy s e l f matched with the r e a l i t y of t h e i r improved functional health. Thus Redefining Healthy Self was i d e n t i f i e d as one of the necessary Relational Processes to work through i n order for p a r t i c i p a n t s to reclaim the foreground p o s i t i o n i n t h e i r r e l a t i o n s h i p with 131 CFS. Pa r t i c i p a n t s talked about t h i s process of Redefining Healthy Self as encompassing two main goals (goals, needs): accepting a new l i f e s t y l e , and accepting CFS as a background habitant of one's l i f e . Accepting a New L i f e s t y l e When pa r t i c i p a n t s perceived themselves as recovered, they generally had i n t e r n a l i z e d t h e i r i l l n e s s and i t s maintenance program so well that i t just became part of t h e i r l i f e s t y l e . Annette, Don, Eileen, and Helene had so thoroughly integrated t h e i r maintenance program into t h e i r l i f e s t y l e that i t was d i f f i c u l t f o r them to remember that they had designed the way they were l i v i n g to keep CFS under c o n t r o l . Don's comment was t y p i c a l : " I t i s a l i f e s t y l e r e v i s i o n , and there i s just a c e r t a i n amount of that that you are aware of daily....Once you do recover, you somehow just go on with the l i f e s t y l e changes that are permanent." Annette said, "Something i n our l i f e s t y l e got us to that point [CFS]. Therefore, to get away from that, we need to change something [in our l i f e s t y l e ] . I t [CFS] i s not r e a l l y something I think about." Monica (who perceived she was unwell) presented a contrast to the above comments from recovered p a r t i c i p a n t s , and expressed her resistance to accepting a new l i f e s t y l e : Its because I have cut back my l i f e s t y l e . [Any] wellness i s because I have cut back from who I r e a l l y am....So every time I shave off a l i t t l e , I appear better to other people just because I am not nearly as active as I should be. Generally, p a r t i c i p a n t s spoke of t h e i r new l i f e s t y l e as representing some gains compared with the way they l i v e d p r i o r to CFS. Rachel, who considered herself 90-95% recovered, put i t t h i s way: "The pace I am going now i s h e a l t h i e r than the pace I was going before I got s i c k . . . . I am not the same. What I am i s better. I am h e a l t h i e r even though i t i s not the same health." Florence t o l d about her gain: " I t has r e a l l y changed my sense 132 o f v a l u e s . T h i s i s s o m e t h i n g t h a t h a s c o m e f r o m t h i s i l l n e s s . . . . I v a l u e m y s e l f m o r e . " C o m p a r e d w i t h h e r p r e - i l l n e s s s t a t e , A n n e t t e s a i d , " I t h i n k . I am e v e n b e y o n d [ t h a t ] i n e n e r g y . Y e s . B e c a u s e I t h i n k I am l o o k i n g a f t e r m y s e l f b e t t e r . S o q u a l i t y i s d e f i n i t e l y b e t t e r , b u t I t h i n k my e n e r g y l e v e l i s b e t t e r , t o o , b e c a u s e I am n o t i n d i s p e n s a b l e a n y m o r e . " A n n e t t e s p o k e a s i f s h e a p p r e c i a t e d h e r new l i f e s t y l e : I j u s t f e e l r e a l l y g o o d a b o u t t h i n g s . I t [ C F S ] r e a l l y w o k e me u p , . . . m e a n i n g I t h i n k I was o n a d o w n h i l l t r e n d b e c a u s e I was w o r k i n g t o o h a r d a n d d o i n g t o o . m u c h . I was g o i n g t o b e s i c k - o n e way o r t h e o t h e r . . . . I t was a l i t t l e w a r n i n g . L i k e I t h i n k i t c o u l d h a v e b e e n a l o t w o r s e t h a n b e i n g t i r e d . I t was i n t e r e s t i n g t o n o t e t h a t D a v i d (who was r e c o v e r i n g ) e x p e c t e d i m p r o v e d h e a l t h w h e n h e r e c o v e r e d : " T h e d e g r e e o f w h a t I w o u l d s a y i s 100% h e a l t h i s m u c h h i g h e r now t h a n w h e n I g o t s i c k . " A c c e p t i n g C F S a s a B a c k g r o u n d H a b i t a n t i n O n e ' s L i f e N o n e o f t h e r e c o v e r e d p a r t i c i p a n t s s p o k e a b o u t C F S b e i n g t o t a l l y a b s e n t f r o m h i s o r h e r l i f e . I n R e d e f i n i n g H e a l t h y S e l f , p a r t i c i p a n t s n e e d e d t o l e a r n t o a c c e p t t h e f a c t t h a t C F S was p a r t o f t h e i r l i v e s , b u t t h a t t h e i l l n e s s c o u l d l i v e i n t h e b a c k g r o u n d p o s i t i o n i n t h e r e l a t i o n s h i p . Some p a r t i c i p a n t s h a d r e a c h e d t h i s g o a l - Some h a d n o t . P a r t i c i p a n t who c o n s i d e r e d t h e m s e l v e s r e c o v e r e d h a d a c c e p t e d C F S a s a b a c k g r o u n d h a b i t a n t o f t h e i r l i v e s . T h e y s p o k e o f r e s p e c t i n g a n d a c c e p t i n g t h e o n g o i n g p r e s e n c e o f t h e i l l n e s s . A n n e t t e , D o n , E i l e e n , a n d H e l e n e h a d s u c h a r e l a t i o n s h i p w i t h t h e i r i l l n e s s . R a c h e l (who s a i d s h e w a s a l m o s t r e c o v e r e d ) a l s o s p o k e o f a r e s p e c t f u l r e l a t i o n s h i p w i t h C F S : "I w o u l d b e a f r a i d t o s a y , ' O h , I h a v e l i c k e d i t ' . " T h e y k n e w t h a t t h e y n e e d e d t o c o n t i n u e w i t h t h e i r m a i n t e n a n c e p r o g r a m s a n d t o h o n o r t h e i r l i m i t s . I f n o t , t h e y f e a r e d t h a t t h e i l l n e s s c o u l d r e t u r n t o a m o r e d o m i n a n t p o s i t i o n i n t h e f o r e g r o u n d o f t h e r e l a t i o n s h i p . When a s k e d i f h e t h o u g h t h e c o u l d 133 ever become unwell again, Don said, "I perceive that i t i s at any time possible.... If I weren't on t h i s [maintenance] schedule, I would probably s t a r t to unbalance again." Annette put i t t h i s way: "I could get i t [CFS] ag a i n . . . i f I don't watch myself and l i s t e n to my own body, I could become sick again." Florence's respect for CFS remaining a threat i n her l i f e i s evident i n the following statement: "I would say I am [recovered]. Other than the fact that I have to guard my night l i f e . " Helene expressed how she l i v e d respecting the l i m i t s required by CFS: "I am very jealous of my body and my time and my health. I just won't put myself i n the p o s i t i o n where i t can deteriorate. I am just not going to l e t i t happen." Part i c i p a n t s who were unwell (Monica and A l l a n ) , or who were s t i l l recovering (Susan, Raine, David) had not accepted CFS as a background habitant i n t h e i r l i v e s . The reader w i l l r e c a l l previous discussions about: (a) Monica and A l l a n seeking to be cured of CFS, which meant that the i l l n e s s would be t o t a l l y absent from t h e i r l i v e s ; and (b) Susan, who resented CFS imposed l i m i t a t i o n s which i n t e r f e r e d with keeping up with her "active f r i e n d s " . They had not achieved the goal of accepting CFS as a background habitant, and had not su c c e s s f u l l y redefined t h e i r healthy selves. This chapter has described the two core processes relevant to understanding p a r t i c i p a n t s ' successful pathways to recovery from CFS: Choice Making and the three Relational Processes through which the r e l a t i o n s h i p between CFS and the p a r t i c i p a n t was changed. Figure 3 (p. 65) demonstrates the interrelatedness of the two main constructs and the concepts around which they are b u i l t . Before progressing to the next chapter, a b r i e f summary of t h i s research inquiry w i l l be presented. 134 Research Summary The purpose of t h i s study was to increase knowledge and understanding about successful pathways of healing towards recovery from CFS. It was intended that t h i s research would provide persons experiencing CFS and t h e i r f a m i l i e s , and health care workers an opportunity for increased knowledge and understanding of CFS recovery pathways. A c o n s t r u c t i v i s t paradigm research design was employed to study the research questions, "How do persons who have been medically diagnosed with CFS work su c c e s s f u l l y towards recovery? What healing pathways do they use? The findings indicated that recovering from CFS required that the person form a r e l a t i o n s h i p with the intruding i l l n e s s which was l i k e a f o r c e f u l , unknown "Beast". The pathway to recovery represented the core process of changing the r e l a t i o n s h i p between the person and h i s or her i n i t i a l l y oppressive i l l n e s s from one i n which CFS resided predominantly i n the foreground of the r e l a t i o n s h i p to one i n which CFS held a t i n y p o s i t i o n i n the background of the person's l i f e . This changing r e l a t i o n s h i p represented the healing journey p a r t i c i p a n t s took along the recovery pathway. Each'person's experience with, and expression of h i s or her i l l n e s s was i n d i v i d u a l , and each constructed an unique recovery pathway. A commonality was evident i n the three main processes which moved pa r t i c i p a n t s along on t h e i r recovery pathways: Legitimizing, Putting the I l l n e s s i n i t s Place, and Redefining Healthy Self (the three R e l a t i o n a l Processes). Each of the Relational Processes posed important goals that p a r t i c i p a n t s needed to work through i n order to a t t a i n that process. The goals of Legitimizing were: being believed and being diagnosed, and understanding and accepting the r e a l i t y of the i l l n e s s . In order to 135 s u c c e s s f u l l y a c h i e v e t h e g o a l s o f t h i s p r o c e s s , e x t e r n a l L e g i t i m i z i n g w a s d e s i r a b l e , b u t i n t e r n a l L e g i t i m i z i n g was m a n d a t o r y . P u t t i n g t h e I l l n e s s i n i t s P l a c e r e q u i r e d h e a l i n g o f t h e b o d y , m i n d , a n d s p i r i t ; a n d n e g o t i a t i n g t h e c r i t i c a l b a l a n c e o f l i v i n g o n e ' s l i f e w i t h i n t h e l i m i t a t i o n s o f C F S . T h e p r o c e s s o f R e d e f i n i n g H e a l t h y S e l f i n v o l v e d t w o i m p o r t a n t g o a l s : a c c e p t i n g a new l i f e s t y l e , a n d a c c e p t i n g C F S a s a b a c k g r o u n d h a b i t a n t i n o n e ' s l i f e . I t was f o u n d t h a t t h e i n d i v i d u a l i t y o f p a r t i c i p a n t s ' r e c o v e r y p a t h w a y s r e l a t e d t o C h o i c e M a k i n g . T h u s t o u n d e r s t a n d a p e r s o n ' s r e c o v e r y p a t h w a y , o n e m u s t l o o k t o t h e o r i g i n o f h i s o r h e r C h o i c e M a k i n g , w h i c h w e r e b a s e d o n h i s o r h e r i n f o r m a t i o n , b e l i e f s , a n d m o t i v a t i o n ( b a s e d o n e s t e e m n e e d s ) . T h e o u t c o m e o f C h o i c e M a k i n g b e c a m e a m a z e o f M o v i n g On ( f e e l i n g b e t t e r , m o v i n g a l o n g t o w a r d s r e c o v e r y ) a n d B l a n k W a l l s ( a s e n s e o f d i s c o u r a g e m e n t , f r u s t r a t i o n , o r d e f e a t a s s o c i a t e d w i t h a h a l t o r a p l a t e a u - a r e s t i n g p l a c e ) . T h e C h o i c e M a k i n g p r o c e s s was f o u n d a t i o n a l t o a n y a n d a l l m o v e m e n t i n e a c h o f t h e t h r e e R e l a t i o n a l P r o c e s s e s . T h e r e c i p r o c i t y a n d i n t e r r e l a t e d n e s s o f c h o i c e s made i n t h e t h r e e p r o c e s s e s g a v e t h i s c h a n g i n g r e l a t i o n s h i p a d y n a m i c q u a l i t y , a s c a n b e s e e n i n F i g u r e 3 , ( p . 6 5 ) . I n o r d e r f o r p a r t i c i p a n t s t o c o n s i d e r t h e m s e l v e s r e c o v e r e d , t h e y n e e d e d t o a c c o m p l i s h t h e w o r k o f a l l t h r e e R e l a t i o n a l P r o c e s s e s . P a r t i c i p a n t s p e r c e i v e d t h e y w e r e r e c o v e r i n g w h e n t h e y h a d a c h i e v e d s o m e p r o g r e s s i n t h e R e l a t i o n a l P r o c e s s e s , b u t t h e i r d e f i n i t i o n o f r e c o v e r e d h e a l t h y s e l f d i d n o t y e t m a t c h t h e i r p e r c e p t i o n o f how t h e y w e r e f u n c t i o n i n g . R e c o v e r y w a s d e f i n e d a s " r e - e s t a b l i s h i n g a s e n s e o f e q u i l i b r i u m , c o n t r o l , h a r m o n y , q u a l i t y [ o f ] l i f e , . . . a n d s a t i s f a c t o r y l e v e l o f f u n c t i o n i n g " ( C o l l i n g e , 1 9 9 3 , p p . 3 2 - 3 3 ) a s i d e n t i f i e d b y t h e 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 l a i n e d t h a t r e c o v e r y i n c l u d e d t h e p r o c e s s o f 136 recovering and recovered, the perceived end state of complete recovery where CFS i s present i n the background of the person's l i f e . Recovery was distinguished from cured which re f e r r e d to successful treatment of the agent responsible for a disease, thus returning the person to a p r e - i l l n e s s condition. When pa r t i c i p a n t s were stuck focussing on being cured, they continued to perceive that they were unwell, and recovery was impeded. The findings emphasized the i n d i v i d u a l i t y of the p a r t i c i p a n t s ' experiences with CFS, the unique meaning the i l l n e s s had i n t h e i r l i v e s , the f r a g i l e balance they l i v e d i n , the u n p r e d i c t a b i l i t y of the i l l n e s s , and the r e s p o n s i b i l i t y p a r t i c i p a n t s needed to take for Legitimizing, Putting the I l l n e s s i n i t s Place, and Redefining Healthy Self i n order to recover. Compared to persons experiencing acute i l l n e s s e s or other chronic i l l n e s s e s , those who had CFS faced some unique challenges. For persons who had CFS, the only given was the subjective experience. The fac t that they could at times look well b e l i e d the devastating d e b i l i t a t i o n they experienced. The fact that there were periods of time when persons could function r e l a t i v e l y normally and f e e l quite well b e l i e d the r e a l i t y of t h e i r experiences - even to themselves. As Monica sai d : I do f i n d i f I am preoccupied with something, I can f e e l much better during that time, and that happens quite often. For the longest time, I was sure t h i s was a l l psychological and t h i s was a l l i n my head.... But i t doesn't make sense. The fact that there were so many unknowns about CFS and such great in d i v i d u a t i o n of experience made the i l l n e s s uniquely challenging f o r the pa r t i c i p a n t s i n t h i s study. Thus i t took an exceptional degree of i n t e r n a l strength and perseverance to go through the process of being diagnosed with t h i s i l l n e s s , l e t alone learn how to recover from i t . P a r t i c i p a n t s who had health care workers who were supportive and h e l p f u l , were indeed fortunate. 137 Regardless of the support and assistance available, i n d i v i d u a l s who had CFS were required to engage i n t h e i r unique healing needs, and choice by choice work through the maze along t h e i r pathway towards recovery. Based on the above summary of t h i s research inquiry, the next chapter presents the discussion, implication, and l i m i t a t i o n s of t h i s research. 138 CHAPTER FIVE DISCUSSION, IMPLICATIONS, AND LIMITATIONS This chapter w i l l compare and contrast the findings generated i n t h i s research with l i t e r a t u r e r e l a t i n g to the recovery of persons who have CFS. Comparisons of the findings w i l l be made i n r e l a t i o n to: CFS research based i n t r a d i t i o n a l medicine and naturopathy, CFS research involving nurses, an anecdotal account of a person who i s recovering from CFS, chronic i l l n e s s research, mind-body studies, and s o c i o l o g i c a l l y based research. A d d i t i o n a l l y , t h i s chapter w i l l i d e n t i f y the implications these findings have f or nursing practice, education, and research. The chapter w i l l conclude with a discussion of the l i m i t a t i o n s of t h i s study. L i t e r a t u r e Comparison E a r l i e r t h i s report r e f e r r e d to CFS as an i l l u s i v e disease. Although much has been written about a CFS-like i l l n e s s throughout h i s t o r y and across cultures, the fac t remains that persons' experiences with CFS vary widely, the cause remains speculative, there i s no c l e a r diagnostic marker, there i s no cure, and there i s no sing l e treatment or healing regime that i s successful f o r everyone. The pa r t i c i p a n t s of t h i s study v e r i f i e d the above stated f a c t s . No ava i l a b l e l i t e r a t u r e reported any in-depth research about the i l l n e s s experience of persons who have CFS, about t h e i r successful healing pathways to recovery, nor about t h e i r perceptions of recovery. Research Based i n T r a d i t i o n a l Medicine and Naturopathy An abundance of reports of research i n v e s t i g a t i n g the cause of CFS and treatment t r i a l s of s p e c i f i c CFS therapeutic agents are a v a i l a b l e . Primarily such studies were conducted by medical science researchers, and focussed on pharmacological treatments, mainly antidepressants and other 139 neuropharmocologics (Behan et, a l , 1994; B l o n d e l - H i l l & Dhafran, 1993; Goldstein, 1994; Goodpasture, 1993a & 1993b; Klonoff, 1992; Lapp, 1992; Makela, 1994). Such studies report contradictory and inconclusive findings, but nevertheless they generally recommend that persons diagnosed with CFS be given a t r i a l of antidepressants (even i n the absence of depression) to treat sleep disturbance and chemical imbalances. Although a l l p a r t i c i p a n t s i n t h i s study were offered or prescribed an antidepressant, only one chose to use i t and he found i t somewhat h e l p f u l for a b r i e f period of time to treat " c l i n i c a l depression". Some p a r t i c i p a n t s i n t h i s study reported experiencing undesirable side e f f e c t s when they t r i e d antidepressants. The findings of t h i s study were consistent with the l i t e r a t u r e i n one respect: physicians were following the advice of researchers, and were p r e s c r i b i n g antidepressants for CFS (regardless of any symptoms of depression). In another respect, the findings of t h i s study were not supportive of medical research i n that only one p a r t i c i p a n t (who was diagnosed with c l i n i c a l depression) took, an antidepressant and found i t u s e f u l . Other p a r t i c i p a n t s d i d not report any benefit from t r y i n g antidepressants, reported undesirable side e f f e c t s , and chose to discontinue taking the medication. Some studies reported on the effectiveness of treatments more generally considered naturopathic (although sometimes also prescribed by medical doctors): vitamins, minerals, homeopathic, and herbal remedies (Cunha, 1993; Donova, 1988; Holzschlag, 1993; Klonoff, 1992; Lapp & Cheney, 1993; Lloyd, et a l . , 1994; Marinovic & Gray, 1994; Winther, 1992). Reports of studies examining the usefulness of naturopathic medications for CFS suggest that i n i n d i v i d u a l cases they (naturopathic medications) contributed to healing programs, but that outcomes were unpredictable. The findings of t h i s study are i n keeping with such l i t e r a t u r e . Some 140 p a r t i c i p a n t s reported f i n d i n g help from a va r i e t y of naturopathic remedies. Although some p a r t i c i p a n t s perceived s p e c i f i c vitamins, minerals, and herbal remedies absolutely e s s e n t i a l to t h e i r healing program (Florence, Don, David, Rachel), others e i t h e r chose not to t r y them or found them of no value (Annette, Eileen, Helene). Raine t o l d about her intolerance of high doses of vitamin C which was prescribed for her, and discontinued i t . Because researchers examining s p e c i f i c medical and naturopathic remedies focus on the usefulness of one agent (as i f looking for a cure), t h e i r inconsistent and inconclusive findings are understandable when compared with the findings of t h i s study. P a r t i c i p a n t s indicated some benefit from a var i e t y of agents, but t h i s was extremely i n d i v i d u a l to the person, and i t needed to be combined with other modalities i n a uniquely designed healing program. Johnson (1996) a j o u r n a l i s t who claims to have conducted nine years of research examining the issue of CFS, provides an extensive overview of an American cohort of persons who have CFS and the medical doctor-researchers who worked endlessly i n an attempt to f i n d the cause and the cure f o r what they perceived to be an i n f e c t i o u s disease of epidemic proportions. The book i d e n t i f i e s and quotes many of the medical s c i e n t i s t s c i t e d e a r l i e r i n t h i s section, and provides testimonials from t h e i r patients. Compared to the findings of t h i s study, the story presented by Johnson portrays most persons who have CFS as i f they are stuck at the Blank Wall and w i l l be there u n t i l a cure i s found: CFS...is a disease from which few people recover completely, though many improve over the course of years. Even among those rare few who claim recovery or substantial improvement, the transforming nature of the disease remains manifest; these patients i n e v i t a b l y describe a serie s of adjustments or realignments of goals and expectations that would have been unthinkable p r i o r to the onset of t h e i r illness....Recovery should not be confused with adaptation. 141 She r e f e r s to persons who have CFS as "victims", " s u f f e r e r s " , and " f u l l y disabled". A few of the forty-eight persons whom she quotes mention some p o s i t i v e aspects i n t h e i r l i v e s . For example, "CFS taught me that i t ' s okay not to win - that I don't always have to be number one" and "My symptoms began to disappear toward the end of 1988....There hasn't been anything to bring me back to the doctor since 1989". Nevertheless, Johnson draws a hopeless, bleak picture for persons who have CFS - completely opposite to the findings of successful pathway to recovery i n t h i s study. The researcher f e e l s compelled to comment that persons newly diagnosed with CFS would get an extremely negative perception of t h e i r i l l n e s s from t h i s book, a perception which negates the person's opportunity for changing t h e i r r e l a t i o n s h i p with t h e i r i l l n e s s . Research Involving Nurses Only one CFS research inquiry involving nurses was reported i n the l i t e r a t u r e . Two behavioral nurse therapists, (Butler & Chalder, 1990) reported on a study c a r r i e d put by a B r i t i s h team which they worked with. Their hypotheses was that CFS was e s s e n t i a l l y a learned behaviour, and as such, would be amendable to cognitive behaviour therapy. Although there were many l i m i t a t i o n s of the study (including the assumption that the symptoms experienced by persons who have CFS, have no r e a l pathological basis) which draws the findings into question, the study d i d seem to indi c a t e that for some persons who had CFS a graduated a c t i v i t y program improved stamina and increased a sense of well being. To a degree, that was true for the p a r t i c i p a n t s i n t h i s study. A l l p a r t i c i p a n t s said that they valued a balance of a c t i v i t y and rest, and perceived that the r i g h t balance for each i n d i v i d u a l d i d improve energy and well being. However, the p a r t i c i p a n t s spoke of times when they f e l t they lacked the stamina to stand 142 up, l e t alone exercise. Some pa r t i c i p a n t s d i d rest (exclusive of any exercise) when t o l d by t h e i r physician to do so, and l a t e r wondered i f they could have done more (Elaine, Annette). Others were absolutely sure that at a c e r t a i n time, they were incapable of any a c t i v i t y . This researcher suggests that rest and a c t i v i t y r e l a t e to the i n d i v i d u a l i t y of each person's experience with CFS and to the unique nature of each person's healing needs. The issue of exercise remains a question for further i n v e s t i g a t i o n . A l i m i t a t i o n obvious i n the medical, naturopathic, and nursing studies was that they tended to ignore one v i t a l v a r i a b l e : the i n d i v i d u a l i t y and the unique h o l i s t i c nature of the person. As stated e a r l i e r , p a r t i c i p a n t s who perceived themselves recovered c l e a r l y said that putting the i l l n e s s i n i t s place required more than a p i l l or any s i n g l e treatment modality. It required an uniquely designed healing program composed of the i n d i v i d u a l ' s s p e c i f i c physical and soul healing needs, and i t required that the i n d i v i d u a l learn to understand and comply with t h e i r l i m i t s (negotiating the c r i t i c a l balance). Unlike previous studies, t h i s study attended to the i n d i v i d u a l i t y and the unique h o l i s t i c nature of persons' experiences with CFS. An Anecdotal Account There was a wealth of l i t e r a t u r e i n the form of anecdotal reports provided by persons who had CFS and from t h e i r f a m i l i e s . Some of the anecdotal testimonials spoke a language very s i m i l a r to the p a r t i c i p a n t s of t h i s study. Like the p a r t i c i p a n t s , t h e i r s p e c i f i c healing modalities were i n d i v i d u a l , but they a l l needed to accomplish the three Relational Processes along the recovery pathway. One such person, defined h i s perception of recovery as: 143 h a v i n g enough energy t o p u r s u e t h e t h i n g s t h a t b r i n g j o y and meaning t o my l i f e . . . . I t a l s o means t h a t I do have a f o u n d a t i o n o f h e a l t h . B e f o r e [ C F S ] , t h a t f o u n d a t i o n was made of c o n c r e t e . I t i s now made of wooden p l a n k s . I can jump up and down on i t , and sometimes my f o o t punches t h r o u g h a weak s p o t , b u t t h e r e c o v e r y p e r i o d [now] i s two o r t h r e e days o f s t i l l n e s s and q u i e t , n o t two t o t h r e e months, o r y e a r s (Oates, 1 9 9 5 , p. 3 2 . ) A c c o r d i n g t o t h e d e f i n i t i o n s u sed i n t h i s s t u d y , Oates was s t i l l " r e c o v e r i n g " , as was e v i d e n t i n t h e f o l l o w i n g s t a t e m e n t : "My f o u n d a t i o n has h e l d up 90% of t h e t i m e [ o v e r t h e p a s t two y e a r s ] . I'm s t i l l b u i l d i n g my h e a l t h ; I do n o t t a k e i t f o r g r a n t e d " (p. 3 2 ) . Oates' s t o r y o f h i s f o u r and a h a l f y e a r h e a l i n g j o u r n e y i s s i m i l a r t o t h e maze of Moving On and B l a n k W a l l s outcomes o f C h o i c e Making d e s c r i b e d by t h e p a r t i c i p a n t s o f t h i s s t u d y . F o r example, i n i t i a l l y he chose t o f o c u s on r e g a i n i n g t h e w e i g h t he had l o s t . When h i s we i g h t g a i n was a c h i e v e d , he t h o u g h t : " I was w e l l (Moving On), but when I t r i e d t o r i d e my mountain b i k e , t h e f a t i g u e came r u s h i n g back, w i p i n g out a l l o f my p e r c e i v e d p r o g r e s s " ( B l a n k W a l l , p. 3 1 ) . L i k e s e v e r a l o f t h e p a r t i c i p a n t s i n t h i s s t u d y , he e x p e r i e n c e d a sudden o n s e t o f d e v a s t a t i n g symptoms. He was d i a g n o s e d a f t e r c o n s u l t i n g " f i v e d o c t o r s i n n i n e months" (Oates, 1 9 9 5 , p. 31 ) and was "put on d i s a b i l i t y l e a v e " ( e x t e r n a l L e g i t i m i z i n g ) . Oates d e s c r i b e d t h e n e x t p e r i o d o f t i m e as a f r a n t i c f l u r r y o f d o i n g " e v e r y t h i n g I c o u l d t h i n k o f t o g e t w e l l " (p. 3 1 ) , t r y i n g t o f i n d " t h e " c u r e . G r a d u a l l y , he came t o u n d e r s t a n d and a c c e p t t h e r e a l i t y o f h i s i l l n e s s " [ t h e ] f r u s t r a t i o n e v e n t u a l l y gave way t o r e s i g n a t i o n , t h a t t u r n e d i n t o a peace t h a t began t o t e a c h me" (p. 3 1 , i n t e r n a l L e g i t i m i z i n g ) , and t h e n p r o c e e d e d t o h e a l (Put t h e I l l n e s s i n i t s P l a c e ) : "An u n d e r s t a n d i n g o f h o l i s m and h e a l i n g began t o e v o l v e " (p. 3 1 ) . "There i s a w o r l d o f d i f f e r e n c e between w a n t i n g t o h e a l and w a n t i n g t o be symptom f r e e " (a b e g i n n i n g o f R e d e f i n i n g H e a l t h y S e l f , p. 3 3 ) . He s t a r t e d w i t h p h y s i c a l h e a l i n g a p p r o a c h e s : r e s t b a l a n c e d w i t h e x e r c i s e , 144 vitamins, fresh-squeezed j u i c e s , Echinacea, and Tylenol PM (only when absolutely necessary for sleep). For him, soul healing came l a t e r , but was v i t a l l y important. His soul healing included: a "supportive family", s p i r i t u a l healing ("The more quiet and peaceful I became, the more I was able to access that healing power of my s p i r i t " , p. 3 2 ) ) , j o u r n a l l i n g , i n t e r p r e t i n g h i s dreams, r e f l e c t i o n , "joy" a c t i v i t i e s , a rt work, i n the form of drawings and photography, and looking for h i s purpose i n nature and the universe". He t o l d about learning to respect h i s l i m i t s : " If I f e l t good enough to walk around the block, ever wary of s t i r r i n g the fatigue beast, I would instead walk around the yard" (negotiating the c r i t i c a l balance, p. 3 1 ) . Oates spoke of h i s new l i f e s t y l e : My whole l i f e i s one big creative accommodation.... I am "healthy" now....There were things I learned that changed the way I would have l i v e d my l i f e , given my youthful stubbornness and fev e r i s h pursuit for the material. Now I always l i s t e n to my heart and adjust my path accordingly. I am bound to a l i f e of seeking the flow and going with i t . I t ' s a choice I make every day and many times a day. Like the pa r t i c i p a n t s i n t h i s study, i n accepting h i s redefined healthy s e l f , Oates i d e n t i f i e d h i s l i f e s t y l e as d i f f e r e n t from his p r e - i l l n e s s ways. He remained aware of CFS being present i n a background p o s i t i o n i n the r e l a t i o n s h i p , but not gone: " I t [CFS] i s benevolent i f I l i s t e n to i t " . As i s evident from the above example, the anecdotal l i t e r a t u r e d e f i n i t e l y supports the findings of t h i s study. Chronic I l l n e s s Research An abundance of t h e o r e t i c a l and research l i t e r a t u r e r e l a t i n g to the chronic i l l n e s s experience portrayed i n the findings of t h i s study was av a i l a b l e (Donnelly, 1 9 9 3 ; Hinton-Walker, 1 9 9 3 ; Lindsey, 1994 & 1 9 9 5 ; M i l l e r , 1 9 9 2 ; Morse & Johnson, 1 9 9 1 ; P h i l l i p s , 1 9 9 0 ; Robinson, 1 9 9 3 ; Stephenson & Murphy, 1 9 8 6 ; Strauss, 1 9 7 5 ; Thorne, 1 9 9 3 ; Thome & Robinson, 145 1989; and Wiener, 1975). Aspects of the above reports r e l a t e to the findings of t h i s study, but pragmatic consideration does not allow an i n depth discussion within the bounds of t h i s report. Therefore, one study which had a p a r t i c u l a r f i t with the findings of t h i s research w i l l be discussed i n some d e t a i l . Lindsey's (1994, 1995) i n t e r p r e t i v e phenomenological study of eight p a r t i c i p a n t s investigated "the healing experience of people with chronic health challenges" (1994, p. 287). Many s i m i l a r i t i e s were apparent between Lindsey's findings and the r e s u l t s of t h i s study. She reported that the pa r t i c i p a n t s ' healing journey included "seven e s s e n t i a l themes" including: (a) i n the beginning (when p a r t i c i p a n t s described an overwhelming, powerless, out of control f e e l i n g ) ; (b) h i t t i n g the wall (a low point of f e e l i n g discouraged, where suicide was considered or attempted); (c) turning around ("a turning point", beginning to take c o n t r o l ) ; (d) l e t t i n g go "of t h e i r d e b i l i t a t i n g emotions and t h e i r u n r e a l i s t i c expectations" (1994, p. 108), l i k e an empowered acceptance; (e) opening up ("she [participant] moved from f e e l i n g blocked by a wall of fear to considering the wall a membrane which she could move through", p. 109); (f) " l e t t i n g i n " ("exploring and experiencing d i f f e r e n t healing modalities.... focused on the mind, the emotions, and the s p i r i t " , 1995, pp. 298-99); and (g) the g i f t (the i l l n e s s i s viewed as a p o s i t i v e event contributing to the person's appreciation of l i f e . ) Lindsey's (1994, 1995) themes have some s i m i l a r i t i e s with the three Relational Processes of p a r t i c i p a n t s ' recovery pathways described i n t h i s study. Lindsey's " i n the beginning" echoes the persistent, overwhelming, and demanding nature of the i l l n e s s intruder (described i n t h i s study) when i t dominates the foreground of the pa r t i c i p a n t ' s r e l a t i o n s h i p with CFS. 146 " H i t t i n g the wall" has s i m i l a r i t i e s with p a r t i c i p a n t s of t h i s study h i t t i n g a Blank Wall. "Turning around" i s s i m i l a r to the turning point that p a r t i c i p a n t s of t h i s study expressed. "Letting go" r e l a t e s i n t h i s study to the notions of accepting the r e a l i t y of the i l l n e s s , and to Redefining Healthy S e l f . "Opening up" i s very s i m i l a r to the issue of negotiating the c r i t i c a l balance. "Letting i n " compares well with t h i s study's p a r t i c i p a n t s ' notion of healing the body, mind, and s p i r i t . "The g i f t " has a s i m i l a r i t y with the findings of t h i s study i n r e l a t i o n to p a r t i c i p a n t s perceptions that the new recovered l i f e s t y l e was better than t h e i r pre-i l l n e s s way of l i f e . The above discussion demonstrates that Lindsey's (1994, 1995) perspective of the " e s s e n t i a l healing process" can be compared with aspects of the three Relational Processes which moved p a r t i c i p a n t s of t h i s study along t h e i r recovery pathways. Lindsey's healing journey i s described as "moving towards a sense of wellness....which led them to experience f e e l i n g healthy" (1994, pp. 97-8). That concept was compared with t h i s study's notion of Redefined Healthy Self, and some s i m i l a r i t i e s are noted. Lindsey's " f e e l i n g healthy" was described as being empowered, r e l y i n g on s e l f for the "expert opinion", l i s t e n i n g to one's body, expressing desires and needs a s s e r t i v e l y , and turning negatives into p o s i t i v e s (normalizing). These are also recognized as q u a l i t i e s inherent i n t h i s study's Redefining Healthy S e l f . Q u a l i t i e s of Lindsey's " f e e l i n g healthy" that do not f i t with t h i s study's notion of redefined healthy s e l f are: transcending the s e l f i n a sense of escaping the physical body, connecting with others for the purpose of s o c i a l r e l a t i o n s h i p s , and the condition of s p i r i t u a l grace. In t h i s study, Redefined Healthy Self was more concrete - each recovered 147 p a r t i c i p a n t described i t more l i k e a new l i f e s t y l e which generally was d i f f e r e n t , but better than before. This researcher a t t r i b u t e s some of the differences to the f a c t the CFS i s not a v i s i b l e i l l n e s s , and i s not considered progressive. Thus p a r t i c i p a n t s i n t h i s study could r e l y on l i v i n g well as long as they respected the background p o s i t i o n that CFS had; whereas, the p a r t i c i p a n t s i n Lindsey's study had more p h y s i c a l l y v i s i b l e and progressively d e b i l i t a t i n g i l l n e s s e s . They d i d not seem to be focussing on recovery, but on "an expansion of consciousness" (1995, p. 301). Over hal f of Lindsey's p a r t i c i p a n t s were on permanent d i s a b i l i t y pension. Considering the d i f f e r e n c e i n the nature of the i l l n e s s e s experienced by the two p a r t i c i p a n t groups, the f i t between the findings from the two studies i s remarkable. The findings are r e c i p r o c a l l y supportive and v a l i d a t i n g . By e x p l i c a t i n g the Choice Making process as the i n f l u e n t i a l construct of movement, t h i s study goes further i n providing a more comprehensive ins i g h t into p a r t i c i p a n t s ' movement along t h e i r pathways towards recovery. Mind-Body Healing Research The p a r t i c i p a n t s of t h i s study f e l t strongly about the importance of doing what they c a l l e d t h e i r "soul work" i n order to heal. Soul healing r e f e r r e d to t h e i r non-physical healing modalities and included mental, psychological, s p i r i t u a l , emotional, and r e l a t i o n a l ways of r e s t o r i n g h o l i s t i c well being. Examples of p a r t i c i p a n t s ' soul healing modalities included meditation; support of family, prayer group, friends, and health professionals; walks i n the forest, r e f l e c t i o n by the ocean; imagery; j o y f u l a c t i v i t i e s and laughter; d i r e c t i n g healing energy to a c e r t a i n body location, and others. Some pa r t i c i p a n t s were mystified by the healing power of soul modalities. For example, Don r e f e r r e d to h i s recovery i n the 148 following way: "sometimes I think i t was as basic as a miracle". Monica f e l t well during a three week holiday, but was i l l again when she came home. Rachel found that she f e l t well when she was with p o s i t i v e people, and that she f e l t unwell when she was with negative people. Many pa r t i c i p a n t s t o l d about the absolute necessity of having support from others i n order to be able to heal. A l l p a r t i c i p a n t s r e f e r r e d to t h e i r b e l i e f that stress increased symptoms of t h e i r i l l n e s s . The mind-body connection has been s c e p t i c a l l y viewed by western society. Some recent l i t e r a t u r e provides substantial evidence which supports the r e c i p r o c a l connectedness of mind and body - and which supports the findings of t h i s study. It has been generally agreed that persons who have CFS have immune system dysfunction. Goldstein's (1993a) limbic encephalopathy theory•provides an explanation for the l i n k between emotions, hormones, immune function, and the autonomic nervous system. Recently, scholars have researched and theorized about the power of the mind i n healing the body (Birney, 1991; Collinge, 1996; Dreher, 1995 Groer et a l . , 1993; Hillhouse & Adler, 1991; Houldin, Lev, Prystowsky, Redei, & Lowery, 1991; Moyers, 1993; Weil, 1995; Wooten, 1996; Z e l l e r , McCain, & Swanson, 1996). Some r e f e r to t h i s concept as psychoneuroimmulogy (PNI). Weil (1995) c a l l s i t spontaneous healing, and tal k s about the "healing system" i n which "the mental realm i s often the true locus of cause" (p. 65). Although no studies were a v a i l a b l e which investigated the use of PNI to healing CFS, several research reports indicated p o s i t i v e findings i n using what the pa r t i c i p a n t s c a l l e d "soul healing" to improve s p e c i f i c immune c e l l function. An experimental study conducted by Groer et a l . (1993) examined psychological stress and s a l i v a r y secretory immunoglobulin 149 (slgA) of patients who received a ten minute back rub, versus a control group who received no treatment. Findings indicated that "only the back rub group showed a s i g n i f i c a n t increase i n slgA" (p.6). Z e l l e r , McCain, & Swanson (1996) reviewed PNI studies c a r r i e d out by nurse researchers. They reported a study measuring immune function i n response to therapeutic touch (Quinn & Strelkauskas, 1993, c i t e d i n Z e l l e r et a l . , 1996). Recipients of treatment had reduced suppressor T-lymphocyte numbers (a c e l l generally abnormally increased i n persons who have CFS). Another study reported improved natural k i l l e r c e l l s (generally decreased i n persons who have CFS) counts i n persons with HIV disease who used nursing administered guided imagery, and progressive muscle re l a x a t i o n programs ( E l l e r , 1994, as c i t e d i n Z e l l e r , et a l . , 1996). Several nursing studies r e f e r r e d to increased symptoms or decreased immune c e l l function i n r e l a t i o n to higher anxiety or stress l e v e l s (Annie & Groer, 1991; McCarthey et a l , 1992; Nicholas & Webster, 1993; Swamson et a;. 1993a, 1993b; a l l as c i t e d i n Z e l l e r , et a l , 1996). Such studies c e r t a i n l y provide credence to the p a r t i c i p a n t s ' soul healing experiences, and suggest a need for nursing s c i e n t i s t s to investigate the PNI connection i n persons who have CFS. Dreher (1995) brought together the research of G. E. Schwartz (the Attend, Connect, and Express (ACE) f a c t o r ) ; J . W. Pennebaker (the capacity to confide); S. Ouellette (hardiness: commitment, control, and challenge), G. F. Solomon (assertiveness); D. McClelland ( a f f i l i a t i v e t r u s t ) ; A. Luks (healthy helping - the t r a i t of altruism); and P. L i n v i l l e (self-complexity -the healthy hydra) to support h i s theses of an "immune power pe r s o n a l i t y " (p. 2). His theory was based on the premise that "the mind can contribute to our r i s k and our recovery from almost any disease" (p. 1) and "the 150 p i v o t a l psychological factor i n i l l n e s s i s not stress but rather how we cope with s t r e s s " (p. 1) which he a t t r i b u t e s to personality. He describes a person who has an immune power personality as "an i n d i v i d u a l who i s able to f i n d joy and meaning, even health, when l i f e o f f e r s up i t s most d i f f i c u l t challenges...[one who] handles s t r e s s f u l events not with denial but with acceptance, f l e x i b i l i t y , and a willingness to learn and grow" (p. 2 ) . According to Dreher, immune power personality t r a i t s are unique to the i n d i v i d u a l and can be learned: "They are healthy p o t e n t i a l i t i e s each of us can maximize and express i n our own unique way" (p. 9 ) . Each of the areas of personality t r a i t research described by Dreher (1995) were supported i n the p a r t i c i p a n t s ' experiences of soul healing. For example, Florence, David, and E i l e e n demonstrated the healthy helping -altruism t r a i t i n t h e i r b e l i e f that the purpose of t h e i r i l l n e s s experience was to help others. A l l p a r t i c i p a n t s spoke about growing (during t h e i r recovery) i n t h e i r a b i l i t y and commitment to express t h e i r needs and desires r e l a t i o n s h i p s with others - the assertiveness t r a i t . The hardiness q u a l i t y of control of one's l i f e and health was important to the p a r t i c i p a n t s i n t h i s study. As the reader w i l l r e c a l l , reclaiming control of t h e i r l i v e s was fundamental to the p a r t i c i p a n t s changing t h e i r r e l a t i o n s h i p s with CFS so that the i l l n e s s moved from a foreground to a background p o s i t i o n . The studies c i t e d by Dreher are too numerous to s p e c i f i c a l l y describe i n t h i s report. As an example of the r e c i p r o c a l support such studies had i n r e l a t i o n to the findings of t h i s inquiry, the work of one researcher (Schwartz, 1979 & 1990, c i t e d i n Drehr, 1995) w i l l be presented i n more d e t a i l . The ACE (attend, connect, and express) personality t r a i t concept developed by Schwartz (1979 & 1990, c i t e d i n Dreher, 1995) was r e c i p r o c a l l y 151 supportive with the findings of t h i s study. Based on h i s therapy and research experiences, Schwartz viewed "the bodymind as a system" (Dreher, p. 35), and observed that "people who disconnect from bodymind feedback experience disharmony while people who attend to feedback maintain harmony and physical health" (p. 35). During t h e i r recovery, p a r t i c i p a n t s of t h i s study t o l d about needing to learn to l i s t e n to the body and soul i n order to learn to put the i l l n e s s i n i t s place. Schwartz emphasized the need f o r persons to tune into t h e i r bodies, to "take control of our current l i f e circumstances...[and to] take action to r e e s t a b l i s h balance and health." In t h i s study, p a r t i c i p a n t s ' needs to regain control of t h e i r l i v e s and to bring t h e i r h o l i s t i c health back into balance was v i t a l to t h e i r recovery. Schwartz coined the term "repressive coper" for persons who d i d not acknowledge or deal with bodymind feedback, and "expressive coper" for persons who acknowledged and took action to express bodymind feedback. In a 1979 study Schwartz & Weinberger ( c i t e d i n Dreher, 1995), investigated the "psychological signs [heart rate and muscle tension] of inner s t r e s s " (p. 63) i n three subject groups: those who had low anxiety l e v e l , those who had high anxiety but repressed i t , and those who had high anxiety and expressed i t . Findings indicated that those who t r u l y were not anxious "maintained s t a b i l i t y i n heart rate and muscle tension" (p. 63), those who were anxious but expressed i t d i d have some increases i n heart rate and muscle tension, but considerably le s s than subjects who were highly anxious but denied or f a i l e d to express i t . Schwartz expanded his hypothesis i n 1988 when he investigated the anxiety-repressor-expressor l i n k with endocrine tests and immune c e l l function i n 312 patients (Jammer, Schwartz, and Leigh, 1988, c i t e d i n Dreher, 1995). The findings indicated that both the highly anxious persons 152 with no coping and those who repressed t h e i r anxiety "had a reduced number of monocytes [immune c e l l s necessary for the inflammatory process]" (p. 66). Persons who displayed low anxiety and a high degree of expression of stress had the "greatest number of c i r c u l a t i n g monocytes" (p. 67). The expressor group had fewer c i r c u l a t i n g eosophiles ( c e l l s activated during a l l e r g i c reactions - often elevated i n persons who have CFS). The research reported by Dreher (1995) validated the findings of t h i s study, and provided credence to the soul healing experiences p a r t i c i p a n t s expressed and believed,, but could not explain. Likewise, t h i s study supports the research findings of Schwartz and other researchers c i t e d by Dreher. S o c i o l o g i c a l Research The findings of t h i s study indicate that p a r t i c i p a n t s had a p a r t i c u l a r l y challenging time i n Legitimizing t h e i r i l l n e s s experience. As stated e a r l i e r i n t h i s chapter, there seemed nothing concrete that p a r t i c i p a n t s could use to prove t h e i r devastating experience - sometimes they d i d not even look s i c k ! In our society, medical physicians are generally vested with the authority to l e g i t i m i z e i l l n e s s . Society has not only entrusted doctors to provide a diagnosis for the patient, but also to l e g i t i m i z e i l l n e s s i n r e l a t i o n to r i g h t s and r e s p o n s i b i l i t i e s of the i l l person's r i g h t f or health care service or exemption from work. Hingson, Scotch, Sorenson, & Swazey (1981) compared "the authority that doctors can exercise i n doctor-patient encounters, and even i n society at large" (p. 120) to the Greek physician, Aesculapian, who "was eventually elevated to the Greek pantheon of gods" (p. 120). The esteem which society has for doctors i s evident i n the following statement: 153 C l e a r l y , physicians have been viewed as a powerful, i n f l u e n t i a l c l a s s i n our "society, a group of highly educated experts whose a c t i v i t i e s involve l i f e and death decisions and whose motives and a c t i v i t i e s are often assumed to be t e c h n i c a l l y and e t h i c a l l y beyond question or assessment by the people (p. 120). Parti c i p a n t s of t h i s study who generally were s o c i a l i z e d to the above stated b e l i e f that medical doctors l e g i t i m i z e i l l n e s s , were devastated and fru s t r a t e d when a diagnosis was not forthcoming. At times, even i f the diagnosis of CFS was given, i t was delivered with the scepticism of a physician who did not believe the i l l n e s s was r e a l or that the p a r t i c u l a r person's reported symptoms were i n t h e i r head. Even recent l i t e r a t u r e implies that persons who have CFS are faking t h e i r i l l n e s s . The following quote demonstrates the scepticism which some persons confront when they seek aff i r m a t i o n of and care for t h e i r CFS: Unfortunately, there are self-diagnosed patients for whom CFS i l l n e s s i s an advantage and t h i s colours the view when [physicians are] faced with genuine patients....For many "fake" s u f f e r e r s , there i s an advantage i n staying i l l . . . . A b u s e of the i l l n e s s occurs by those for whom being i l l has an advantage.... In t h e i r desperate search for treatment, patients frequently seek the help of a healer [not s p e c i f i e d ] , and commonly f i n d benefit i n the sympathy and compassion they f i n d . . . Healers' e f f o r t s before underlying problems are resolved are probably no more than psychological i n t h e i r e f f e c t (Dowson, 1993). Undoubtedly, s o c i e t a l l y ascribed b e l i e f s and roles had a s i g n i f i c a n t impact on the p a r t i c i p a n t s of t h i s study who sought medical care. Although no s o c i o l o g i c a l studies are reported s p e c i f i c a l l y i n r e l a t i o n to the s i c k r o l e of persons recovering from CFS, a comparison of the findings of t h i s study w i l l be made i n r e l a t i o n to a l i m i t e d s e l e c t i o n of s o c i o l o g i c a l l i t e r a t u r e pertaining to sic k r o l e and health b e l i e f models. Sick Role-Patient Role Although i t has received much c r i t i c i s m , Parsons'(1951) s i c k r o l e model (c i t e d i n Parsons & Fox, 1952) continues to r e f l e c t at le a s t some 154 s o c i e t a l b e l i e f s about the r o l e of the unwell person and of the physician. Two analogies are drawn i n the model: "the s i m i l a r i t y between i l l n e s s and the status of the c h i l d i n the family...[and] the overlap between the physician's r o l e and that of the parent" (pp. 32-33). Note the s i m i l a r i t y of the above analogies with Rachel's experience: My general p r a c t i t i o n e r i n the spring had found out I had been to the naturopath and she took my [naturopathic] medication and threw i t i n the garbage - the whole thing....She said, "You are never to go back there again." She was l i k e a parent. I am probably older than she i s . She was l i k e a parent scolding me for taking i t . According to Parsons' model, the a t t r i b u t e s that society ascribe f or a sic k person include: the r i g h t to be absolved of the r e s p o n s i b i l i t y for h i s or her condition and for work and other commitments; and the r e s p o n s i b i l i t y to d i s l i k e being sick, to want to get well, and to seek and cooperate with competent help. A d i s t i n c t i o n i s made between the si c k r o l e and the patient r o l e which i s described t h i s way: "The si c k i n d i v i d u a l i s c a l l e d upon to acknowledge the authority of medical personages over himself, the obligations of the r o l e of the patient imply temporary relinquishment of the r i g h t s , as well as the duties, of normal adulthood" (Parsons & Fox, 1952, p. 38). The above statement c l e a r l y describes the dominant-submissive r e l a t i o n s h i p which some pa r t i c i p a n t s i n t h i s study experienced with t h e i r physicians. It also r e f l e c t s the b e l i e f s of some p a r t i c i p a n t s i n r e l a t i o n to t h e i r submissive, passive r o l e r e l a t i v e to physicians. Twaddle's (1978) research findings expanded Parsons' model to include the influence of some i n d i v i d u a l variables such as "the nature of the well role...the nature of the condition" (p. 12), and c u l t u r a l v a r i a t i o n . Twaddle q u a l i f i e d that "a large proportion of the respondents reported that they neither sought nor were they expected to seek an exemption [from normal r o l e o b l i g a t i o n s ] " (p. 9). Further, they d i d not necessarily 155 cooperate with the "treatment agent". Cle a r l y , the predicts of Parsons' s i c k r o l e model and Twaddle's expansion of i t d i d to some degree represent some people's b e l i e f s i n t h i s study, which presented a problem for persons t r y i n g to l e g i t i m i z e t h e i r CFS. When the person who has CFS does not look i l l and can produce no provable signs of i l l n e s s , doctors and others are r e t i c e n t to honour them with si c k r o l e status, regardless of the person's attempts to seek and comply with competent help, t h e i r d i s l i k e f o r being unwell, and t h e i r earnest desire to get better. That i s , regardless of complying with Parsons' si c k r o l e c r i t e r i a , society does not r e a d i l y grant that the person who has CFS i s "sick". Wolinsky & Wolinsky's (1981) exploratory study of 500 subjects examined the " r e l a t i o n s h i p of i n d i v i d u a l expectations for and receipt of s i c k - r o l e l e g i t i m a t i o n " (p. 229). Their study was based on the assumption that physicians l e g i t i m i z e the sic k r o l e by the "issuance of a p r e s c r i p t i o n [for medication]...[which i s viewed as] 'a badge of i l l n e s s ' " (p. 232). Based on the p r e s c r i p t i o n c r i t e r i a , t h e i r main f i n d i n g indicates that persons who expect and seek l e g i t i m i z i n g from a doctor are most l i k e l y to receive i t . There i s no f i t between Wolinsky & Wolinsky's r e s u l t s and the findings of t h i s study. F i r s t , p a r t i c i p a n t s i n t h i s study were frequently showered with pr e s c r i p t i o n s which mostly were not used. Except for Florence and Helene, p a r t i c i p a n t s ' i l l n e s s e s were not medically leg i t i m i z e d , sometimes for years. In t h i s study, r e c e i v i n g medical p r e s c r i p t i o n s d i d not r e l a t e with Legitimizing of the s i c k r o l e . Secondly, expecting to be diagnosed, p a r t i c i p a n t s repeatedly consulted with physicians, but generally t h e i r i l l n e s s was neither diagnosed nor le g i t i m i z e d . C l e a r l y , there i s more to Legitimizing i l l n e s s than receiving a p r e s c r i p t i o n . The findings of t h i s study indicated that external Legitimizing through being believed and 156 diagnosed were desirable, but that i n t e r n a l L egitimizing was mandatory. Kassebaum and Baumann (1965) studied the s i c k r o l e of c h r o n i c a l l y i l l persons i n r e l a t i o n to four dimensions: dependence, r e c i p r o c i t y , r o l e -performance and d e n i a l . Their r e s u l t s indicated minimal s i m i l a r i t y of s i c k r o l e expectations of t h e i r 201 c h r o n i c a l l y i l l subjects. Cl e a r l y , generalized and narrow sic k r o l e expectations for the needs of persons experiencing a chronic i l l n e s s i n general, and even more s p e c i f i c a l l y those experiencing CFS do not f i t with the r o l e ascribed by society and represented i n the l i t e r a t u r e . The question remains: For persons who have CFS, to what degree does society's s i c k r o l e expectations i n t e r f e r e with healing? As previously indicated, the findings of t h i s study suggest that persons who have CFS, the unprovable i l l n e s s , are confronted with numerous challenges. Health B e l i e f Models Rosenstock's (1974) health b e l i e f model focusses on persons "not currently s u f f e r i n g d i s a b l i n g disease" (p.328), and i s "oriented to the avoidance of-disease" (p. 328). The model i s b u i l t around four v a r i a b l e b e l i e f s : perceived s u s c e p t i b i l i t y to a disease, perceived seriousness of the disease, and perceived benefits and b a r r i e r s to taking action. The f a c t that h i s work examines the o r i g i n s of decision making i n r e l a t i o n to health r e l a t e d actions supports the concept of the Choice Making process reported i n the findings of t h i s study. However, t h i s research inquiry went far beyond Rosenstock's premier work by i d e n t i f y i n g the complexity and the i n d i v i d u a l i t y of influences on Choice Making as well as the feedback from outcome variables and from the three Relational Processes i n which the impact of outcomes were experienced. A problem with Rosenstock's health b e l i e f model i s i t ' s disease 157 avoidance focus. In contrast, Armentrout (1993) posed a wellness o r i e n t a t i o n rather than a disease prevention model, and thus i s more i n keeping with current health focus towards caring and healing and with the concept of c h r o n i c i t y . Armentrout compared c h a r a c t e r i s t i c s of a wellness b e l i e f system with those of a medical, disease-oriented b e l i e f system. Her wellness model has not been researched, but looks promising i n r e l a t i o n to the findings of t h i s study. That i s , i n numerous ways i t p o s i t s an idealogy which f i t s with t h i s research inquiry: i t s focus on health rather than on sickness, on recovery rather than on cure, on promoting one's health rather than f i x i n g a s p e c i f i c disease, on l i f e s t y l e rather than on singular treatments, and on the human as a h o l i s t i c being rather than a number of separate parts. A number of other studies r e l a t e d to s p e c i f i c b e l i e f s impacting on decision making i n r e l a t i o n to health choices were reviewed (Brown, Muhlenkamp, Fox, & Osborn, 1983 ; Furnham & Beard, 1995 ; and Seeman & Seeman, 1 9 8 3 ) . These studies examine b e l i e f s about control, s e l f e f f i c a c y , and just world b e l i e f s versus chance as the o r i g i n of choices. Although p a r t i c i p a n t b e l i e f s had some s p e c i f i c f i t s with reported study r e s u l t s , t h i s research inquiry provided a more comprehensive model of Choice Making influenced by the interrelatedness of information, b e l i e f s , and motivation (based on esteem needs). Having compared the findings of t h i s study with relevant s c h o l a r l y l i t e r a t u r e , the implications for nursing pra c t i c e , education, and research w i l l now be discussed. Implications and Recommendations for Nursing Medical science continues to conduct research i n an attempt to e s t a b l i s h the cause and to f i n d a cure for CFS. In the mean time, numerous people who have CFS continue to experience the. devastating impact of t h i s 158 unknown Beast,-CFS, which i n t e r f e r e s with t h e i r l i v e s . As the findings of t h i s study indicate, many persons who have CFS are l e f t to navigate the pathway to recovery with very l i t t l e support, advocacy, knowledge, or resources from health care professionals. The findings of t h i s study imply a need for health care professionals, including nurses, to f u l f i l t h e i r r e s p o n s i b i l i t y to persons who have CFS - to provide care. Implications for Nursing Practice The fact that there are so many unknowns about CFS and such great i n d i v i d u a t i o n of experience made t h i s i l l n e s s uniquely challenging for the p a r t i c i p a n t s i n t h i s study. Thus i t took an exceptional degree of i n t e r n a l strength and perseverance to be diagnosed with t h i s i l l n e s s , l e t alone learn how to recover from i t . P a r t icipants who had health care workers who were supportive and h e l p f u l were indeed fortunate. Regardless of the support and assistance available, i n d i v i d u a l s who had CFS were required to engage i n t h e i r unique healing needs, and choice by choice work through the maze along t h e i r recovery pathway. This researcher believes that the healing journey through the maze could be improved i n q u a l i t y and could be made easier with the help of a knowledgeable health care worker providing accurate information, affirming the r e a l i t y of a person's i l l n e s s experience, supporting h i s or her i n t e r n a l wisdom, and engaging the person i n a helping r e l a t i o n s h i p which would allow him or her to be empowered i n reclaiming control of h i s or her l i f e . This researcher believes that nurses have the s k i l l s to f i l l t h i s r o l e , but that they need to be educated about the r e a l i t y of CFS and about the healing journey along the pathway to recovery from CFS. Thus, i t i s incumbent on p r a c t i c i n g nurses to become informed about CFS and to learn to understand how to provide care for persons experiencing 159 t h i s d e v a s t a t i n g i l l n e s s . T h e f i n d i n g s o f t h i s s t u d y i m p l y t h a t i n o r d e r t o m e e t t h e n e e d s o f p e r s o n s e x p e r i e n c i n g C F S , n u r s e s a n d o t h e r h e a l t h c a r e p r o f e s s i o n a l s m u s t : 1 . A d d r e s s p e r s o n s who h a v e C F S a s s u c h , a n d n o t a s C F S v i c t i m s o r C F S s u f f e r e r s . T h i s s t u d y i n d i c a t e s a s t r o n g n e e d f o r p e r s o n s e x p e r i e n c i n g C F S t o b e e m p o w e r e d t o r e g a i n c o n t r o l o f t h e i r b o d i e s , a n d t o f e e l e m p o w e r e d i n r e l a t i o n t o t h e i r i l l n e s s . " V i c t i m s " a n d " s u f f e r e r s " a r e n o t w o r d s t h a t i m p l y p o w e r . 2. U n d e r s t a n d t h a t i n i t i a l l y , t h e p e r s o n ' s c o n c e p t o f r e c o v e r y m o s t l i k e l y w i l l b e t h e i r p r e - i l l n e s s h e a l t h c o n d i t i o n , a n d t h a t r e d e f i n i n g t h e i r c o n c e p t o f h e a l t h y s e l f i s a p r o c e s s t h a t t h e i n d i v i d u a l m u s t w o r k t h r o u g h a l o n g t h e r e c o v e r y p a t h w a y . T h e f i n d i n g s o f t h i s s t u d y i n d i c a t e t h a t p e r s o n s who f o c u s o n a " c u r e " ( s u c c e s s f u l t r e a t m e n t o f t h e a g e n t r e s p o n s i b l e f o r a d i s e a s e ) , t e n d t o b e b l o c k e d i n R e d e f i n i n g H e a l t h y S e l f , a n d t h i s i m p e d e s t h e i r r e c o v e r y . 3. P r o v i d e a p p r o p r i a t e r e s o u r c e s f o r e a c h p e r s o n i n a way t h a t c a n b e " p r o c e s s e d " ( D o n ) b y t h a t p e r s o n a t t h a t t i m e . I t m u s t b e r e m e m b e r e d t h a t p e o p l e ' s e x p e r i e n c e s w i t h C F S a r e e x t r e m e l y i n d i v i d u a l , a n d p e r s o n s n e e d t o t r a v e l t h e i r r e c o v e r y p a t h w a y i n t h e i r own way a n d a t t h e i r own p a c e . T h e f i n d i n g s i m p l y t h a t h e l p e r s n e e d t o o f f e r a n d t o g u i d e , b u t m o r e i m p o r t a n t l y , t o w o r k f r o m a p o s i t i o n o f s e n s i t i v e a w a r e n e s s o f t h e n e e d s o f t h e i n d i v i d u a l who h a s C F S . 4. R e c o g n i z e t h a t t h e i n d i v i d u a l e x p e r i e n c i n g C F S m o v e s a l o n g h i s o r h e r r e c o v e r y p a t h w a y i n r e s p o n s e t o c h o i c e s t h a t h e o r s h e m a k e s . T h u s , t h e h e l p e r n e e d s t o u n d e r s t a n d t h e i m p o r t a n c e o f i n f o r m a t i o n , b e l i e f s , a n d m o t i v a t i o n ( b a s e d o n e s t e e m n e e d s ) f o r t h e i n d i v i d u a l . T h e f i n d i n g s o f t h i s s t u d y s u g g e s t t h a t t h e f o l l o w i n g s p e c i f i c i n f o r m a t i o n may b e u s e f u l t o t h e 160 person who has.CFS: (a) the need for i n d i v i d u a l l y determined balance between a c t i v i t y and res t , (b) the need to learn l i m i t s , and to " l i s t e n to my body", (c) the need for i n t e r n a l Legitimizing of the i l l n e s s , determining unique physical and soul healing needs, and Redefining Healthy Self, and (d) experiences of persons who have recovered from CFS. The findings of the study imply that some b e l i e f s tend to f a c i l i t a t e a person's a b i l i t y to engage i n healing towards recovery from CFS. In t h i s study, p a r t i c i p a n t s indicated that during t h e i r recovery experience, two s p e c i f i c b e l i e f s changed. F i r s t , caring for oneself changed from a focus on pushing oneself to meet one's perceptions of other's expectations, to a commitment to firml y and a s s e r t i v e l y taking control of one's own l i f e needs. Second, the person's perception of who has influence over i l l n e s s and health changed from b e l i e v i n g that the doctor was most important and had the strongest influence, to perceiving that they themselves held the most influence and the greatest r e s p o n s i b i l i t y f o r handling t h e i r own i l l n e s s and health. These findings imply that health care professionals working with' persons who have CFS should support and foster persons i n firmly and a s s e r t i v e l y taking control of t h e i r l i v e s , and i n learning the importance of s e l f e f f i c a c y i n r e l a t i o n to t h e i r i l l n e s s and health. The findings of t h i s study i d e n t i f i e d the impact that motivation (based on esteem needs) had on Choice Making made along the recovery pathway, and that motivation could serve as. a p o s i t i v e or a negative force. When helping persons who have CFS, health care professionals need to understand t h i s concept, and to i d e n t i f y and understand motivating influences i n each person's l i f e . For, as Ei l e e n informed t h i s study, a person can not move on unless they have a "reason" which motivates them to do so. These findings also imply the use of esteem-enhancing approaches 161 w h e n w o r k i n g w i t h p e r s o n s who h a v e C F S . When s p e a k i n g a b o u t m o t i v a t i o n , i t i s i m p o r t a n t t o a c k n o w l e d g e t h a t p e r s o n s who h a v e C F S ( o r a n y c h r o n i c i l l n e s s ) e x p e r i e n c e s o m e d e g r e e o f d e p r e s s i o n i n r e s p o n s e t o t h e l o s s e s w h i c h c h a l l e n g e s e l f c o n c e p t a n d s e l f e s t e e m . T h u s , s k i l l s h e l p f u l i n p r o v i d i n g c a r e f o r p e r s o n s e x p e r i e n c i n g l o s s o f e s t e e m a n d d e p r e s s i o n b e c o m e i m p o r t a n t i n p r o v i d i n g c a r e f o r t h e p e r s o n who h a s C F S . 5 . A p p r e c i a t e t h a t t h e r e c o v e r y p a t h w a y i s a p r o c e s s o f t h e p e r s o n c h a n g i n g h i s o r h e r r e l a t i o n s h i p w i t h t h e i r i l l n e s s , a n d t h a t t h r e e R e l a t i o n a l P r o c e s s e s m u s t b e a t t a i n e d i n o r d e r f o r r e c o v e r y t o b e a c c o m p l i s h e d . T h e n u r s e c a n s u p p o r t t h e p e r s o n i n h i s o r h e r L e g i t i m i z i n g w o r k , P u t t i n g t h e I l l n e s s i n i t s P l a c e , a n d i n R e d e f i n i n g H e a l t h y S e l f . B e i n g a w a r e o f t h e r e t i c e n c e o f s o m e h e a l t h c a r e p r o f e s s i o n a l s t o a u t h e n t i c i z e t h e p e r s o n ' s C F S i l l n e s s , t h e n u r s e c a n h e l p b y a f f i r m i n g t h e p e r s o n ' s i l l n e s s e x p e r i e n c e a n d b y a d v o c a t i n g f o r t h e m i n t h e h e a l t h c a r e s y s t e m . A d d i t i o n a l l y , t h e n u r s e n e e d s t o u n d e r s t a n d t h a t f o r t h e p e r s o n e x p e r i e n c i n g C F S , i n t e r n a l L e g i t i m i z i n g i s m a n d a t o r y . T o t h a t e n d , t h e n u r s e c a n u s e r e l a t i o n a l a p p r o a c h e s w h i c h e n a b l e t h e p e r s o n t o r e c o g n i z e t h e i r own p o w e r a n d t h e i r e x p e r t r o l e i n r e l a t i o n t o a c k n o w l e d g i n g a n d a f f i r m i n g t h e r e a l i t y o f t h e i r i l l n e s s e x p e r i e n c e . 6. P e r s o n s e x p e r i e n c i n g C F S a r e g e n e r a l l y k e e n t o know a b o u t w a y s t o p u t t h e i l l n e s s i n i t s p l a c e . T h u s , t h e n u r s e m u s t b e c o g n i z a n t o f t h e m u l t i p l e r e a l i t i e s o f p e r s o n s ' i l l n e s s e x p e r i e n c e s . E a c h p e r s o n w i l l n e e d h e l p f i n d i n g t h e i r own r e c o v e r y n e e d s , a n d t h e i r own m o d a l i t i e s f o r a c c o m p l i s h i n g t h e m . T h e f i n d i n g s p o i n t t o t h e i m p o r t a n c e o f e a c h p e r s o n u n d e r s t a n d i n g a n d w o r k i n g t o m e e t t h e i r p h y s i c a l a n d s o u l h e a l i n g n e e d s i n o r d e r t o a c h i e v e r e c o v e r e d s t a t u s . T h e i n d i v i d u a l i t y o f e a c h p e r s o n ' s way o f c a r r y i n g o u t t h e i r h e a l i n g w o r k m u s t b e s u p p o r t e d b y t h e n u r s e . 162 Additionally, the findings imply the need to be sensitive to the Moving On readiness of persons who have CFS. The findings indicate that some may need to rest a while at a Blank Wall. 7. Help persons experiencing CFS understand that "recovered" is different from "cured", and that Redefined Healthy Self is different from the pre-CFS l i f e s t y l e , but that most persons find i t better. 8. Understand and communicate that CFS is what the person who is experiencing i t says i t i s , and that recovering and recovered are what the person perceives them to be. Findings of this study support the literature which indicates that CFS cannot be objectively validated by existing medical technology. This researcher views CFS as a 21st century illness which is beyond current diagnostic technology and knowledge. The devastating experience of persons who have CFS must not continue to be discredited because of society's lack of knowledge. 9. Educate the public with regard to information presently known about CFS. The public need to understand the reality of CFS, i t s symptoms, and general information' about seeking professional help. Educating the public may: (a) help remove the social scepticism which questions the reality of CFS, and (b) f a c i l i t a t e persons with CFS symptoms to seek early professional help. Implications for Nursing Education The findings of this study have implications for nursing education in two areas: basic nursing education and ongoing nursing education. The findings of this study suggest the need for nurse educators to include in basic nursing education programs, information about healing pathways to recovery from CFS. Focus areas may include: the nature of CFS as an illness, the individual experiences of persons recovering from CFS, 163 h o l i s t i c (mind-body) healing, communication and r e l a t i o n a l s k i l l s , and others. Also, nurse educators must model and mentor student nurses i n learning the nursing s k i l l s e s s e n t i a l to provide help for a person who has CFS. An a d d i t i o n a l implication from t h i s study i s that nurse educators provide ongoing education for p r a c t i c i n g nurses i n order that they may increase t h e i r knowledge and understanding of CFS and about person's experiences with CFS. Implications for Nursing Research This research inquiry contributes two main constructs i n theory development of healing pathways towards recovery from CFS: the Choice Making process and the three Relational Processes. The findings of t h i s study suggest a need for further research of persons' experiences i n recovering from CFS. Replications of t h i s study could r e f i n e and extend these findings. One s p e c i f i c focus could be r e p l i c a t i n g the study using p a r t i c i p a n t s who have no greater than high school diploma l e v e l of education. With the important f i n d i n g of the need for p a r t i c i p a n t s to engage i n both physical and soul healing, research i n the area of psychoneuroimmunology would be useful . P a r t i c i p a n t s expressed a great need and i n t e r e s t i n knowing about p a r t i c u l a r healing modalities. Research focused on the usefulness of s p e c i f i c healing modalities could prove valuable. One research focus indicated i n the findings of t h i s study r e l a t e s to the balance of r e s t and a c t i v i t y . Many physicians advocate r e s t . However, a l l p a r t i c i p a n t s found that at a c e r t a i n time i n t h e i r healing journey, exercise was useful, even though i t may not have been easy. Thus research into the healing r o l e of a c t i v i t y f o r persons who have CFS i s suggested. Two questions which might be asked are: 164 1. Is a self-determined, graded exercise program b e n e f i c i a l i n healing from CFS? 2. Under what conditions i s a self-determined, graded exercise program b e n e f i c i a l to the person healing from CFS? As i s evident i n the above discussion, t h i s study i d e n t i f i e s several implications for nursing practice, education and research. Nursing has not yet accepted r e s p o n s i b i l i t y for i t s r o l e i n caring for persons who have CFS. The findings of t h i s study indicate a need,to do so. Limitations In c o n s t r u c t i v i s t ( n a t u r a l i s t i c ) studies, generalization i s not claimed, nor i s i t sought for (Lincoln & Guba, 1985). The researcher who works from the context bound, multiple r e a l i t i e s ontology of c o n s t r u c t i v i s t idealogy endeavors to present a "thick d e s c r i p t i o n " (p. 125, 217, 359) of the studied context so as to provide data necessary for the reader to decide on t r a n s f e r a b i l i t y of findings. Thus, although the researcher does not consider i t a " l i m i t a t i o n " as much as a "point of information" the reader must be aware that the findings of t h i s study claim to be trans f e r r a b l e to persons whose context and situatedness has s i m i l a r i t y to that of the p a r t i c i p a n t s i n t h i s study. A "thick d e s c r i p t i o n " has indeed been given i n t h i s report, thus providing the reader with ample information on which to judge t r a n s f e r a b i l i t y . A l i m i t a t i o n that was recognized when compiling demographical data i s acknowledged i n t h i s study. I t was discovered that the s e l f s e l e c t i n g p a r t i c i p a n t s a l l had a post secondary l e v e l of education, and that except for one, a l l had a baccalaureate degree or higher. One might expect that on the basis of education, t h i s cohort's healing pathways may have been d i f f e r e n t from those with a lower l e v e l of education. Thus the reader i s .165 advised to have an awareness of t h i s fact when judging t r a n s f e r a b i l i t y . A r e p l i c a t i o n of t h i s study with p a r t i c i p a n t s whose education was no higher than a high school l e v e l could expand the findings of t h i s research inquiry. CONCLUSION Pr i o r to t h i s study, no reported research had examined the healing journey of persons who were recovering from CFS. Medical researchers had focused on studies i n v e s t i g a t i n g the cause and a cure f o r CFS, but findings were inconsistent and inconclusive. Research i n v e s t i g a t i n g the healing benefit of naturopathic remedies (such as vitamins, minerals and herbals) showed some b e n e f i c i a l r e s u l t s i n some persons, but also were inconsistent and inconclusive. Only one study involving nurse researchers was reported, and i t s l i m i t a t i o n s made i t s ' f i n d i n g s questionable. The paucity of nursing l i t e r a t u r e i n t h i s area i s evidence of the l i m i t e d r o l e that nurses have played i n the health care of persons who have CFS. The abundance of s e l f -help l i t e r a t u r e suggests that persons who have CFS f i n d cause to seek, healing modalities beyond the t r a d i t i o n a l health care system. Having an i l l n e s s which many view with scepticism, one for which there i s no known cause, no objective marker, extremely i n d i v i d u a l i s t i c symptoms, no known cure, and no s p e c i f i c treatment protocol, makes CFS a lonely, devastating, and frightening experience f o r persons who had CFS. Despite a l l , some report recovery. This researcher "had a hunch" that persons who had experienced success i n recovery could help health care professionals develop knowledge about healing from CFS. This study indicates that i s so. The purpose of t h i s study was to increase knowledge and understanding about successful pathways of healing towards recovery from CFS. The 166 research questions asked were: "How do persons who have been medically diagnosed with CFS work successfully towards recovery? What healing pathways do they use?" Through a c o n s t r u c t i v i s t paradigm research design using an hermeneutic d i a l e c t i c data gathering process and a constant comparison analysis method, the researcher brought together the i n d i v i d u a l l y constructed r e a l i t i e s of eleven persons who volunteered to p a r t i c i p a t e i n t h i s study. The recovery pathway was conceptualized as a changing r e l a t i o n s h i p between the person and t h e i r i l l n e s s . I n i t i a l l y , when the person f i r s t became aware that they had an overwhelming, persistent i l l n e s s that defied treatment, the i l l n e s s held a prominent foreground p o s i t i o n i n the r e l a t i o n s h i p . During the healing journey, the person learned to control the i l l n e s s , and b i t by b i t , the i l l n e s s moved into a background p o s i t i o n i n the r e l a t i o n s h i p . When the person perceived him or he r s e l f recovered, the i l l n e s s held a small, background p o s i t i o n i n which the person f e l t i n control of t h e i r i l l n e s s and t h e i r l i f e . The researcher was puzzled about the very d i f f e r e n t ways i n d i v i d u a l s responded i n seemingly s i m i l a r s i t u a t i o n s . P a r t i c i p a n t s s a i d that the differences r e l a t e d to the impact of information, b e l i e f s and motivation (based on esteem needs) on the unique choices made by each person. The outcome of choices was e i t h e r Moving On or a Blank Wall. Moving On represented progress towards recovery; whereas Blank Wall indicated a h a l t i n the healing journey, possibly a r e s t i n g place. The healing journey can be v i s u a l i z e d as working through a maze of Moving On and Blank Wall. This Choice Making construct came to be understood as the process responsible for a l l movement i n any of the three Relational Processes along the recovery pathway. 167 For a person to perceive themselves as recovered, three R e l a t i o n a l Processes had to be accomplished along the recovery pathway: Legitimizing, Putting the I l l n e s s i n i t s Place, and Redefining Healthy S e l f . The i n d e f i n i t e nature of CFS made Legitimizing challenging. P a r t i c i p a n t s looked to t h e i r medical doctor for a diagnosis, but that frequently was not r e a d i l y forthcoming. Nevertheless, most p a r t i c i p a n t s l e g i t i m i z e d the i l l n e s s i n t e r n a l l y , and moved on i n t h e i r healing journey. Internal Legitimizing was found to be mandatory. Putting the I l l n e s s i n i t s Place required that p a r t i c i p a n t s complete t h e i r s p e c i f i c physical and soul healing work, and that they negotiate the c r i t i c a l balance of l i v i n g t h e i r l i f e within CFS imposed l i m i t a t i o n s . Healing the body, mind, and s p i r i t brought the i l l n e s s into i t s place, and negotiating the c r i t i c a l balance kept i t there. P a r t i c i p a n t s t o l d that the l i f e of redefined healthy s e l f was d i f f e r e n t , but i n some ways better than the p r e - i l l n e s s health state. Generally, recovery brought a l i f e s t y l e change i n which p a r t i c i p a n t s perceived they had better q u a l i t y of l i f e and f e l t more empowered. 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J o u r n a l o f A d v a n c e d N u r s i n g , 2 3 , 6 5 7 - 6 6 4 . 1 8 0 Appendix A: Information Letter The information l e t t e r was made av a i l a b l e to persons diagnosed with CFS who might be interested i n p a r t i c i p a t i n g i n the study. I t was d i s t r i b u t e d by the researcher and by others including colleagues, friends, and other professionals. The l e t t e r was intended to provide information so that interested persons would have an understanding about the study, would know whether they q u a l i f i e d as p a r t i c i p a n t s , and could decide whether they were interested i n requesting further information or i n volunteering. 181 Successful Healing Pathways towards Recovery from CFS Information Letter I would l i k e to i n v i t e you to p a r t i c i p a t e i n a study I w i l l be conducting to complete my requirements for a Masters of Nursing Degree from the University of B r i t i s h Columbia. For quite some time, I have been interested i n chronic fatigue syndrome (CFS). For persons who have CFS, there are a multitude of questions, but very few answers. That i s , there i s no known cause, no diagnostic test, and no one treatment to cure CFS. In speaking with persons who have CFS, I have noticed that i n d i v i d u a l s seem to develop unique ways that work well for them i n healing towards recovery. That i s the focus of my study: to learn how persons who have CFS work su c c e s s f u l l y towards recovery. I believe that by bringing together the wisdom and experiences of persons l i k e yourself, I can learn to understand something more about recovering from CFS, and that I can develop knowledge which can be useful for persons who have CFS and for health care professionals. Let me t e l l you what i t might be l i k e to be a p a r t i c i p a n t i n t h i s study. If you volunteer to p a r t i c i p a t e i n t h i s study, we w i l l meet to t a l k about your experiences i n recovering from CFS. It w i l l be important for me to understand your views accurately, and for you to have the opportunity to give me feedback about my i n t e r p r e t a t i o n s . Therefore, i t may be necessary for us to get together on two or three occasions. Each session w i l l take about one hour, w i l l be arranged at a mutually convenient time, and can take place anywhere that i s comfortable for you. Our conversation w i l l be audiotaped and transcribed into printed form. Any information which could possibly i d e n t i f y you w i l l be deleted from the printed t r a n s c r i p t . The tape of our conversation and the printed copy w i l l be stored i n a locked cabinet, and w i l l be a v a i l a b l e only to me and to my two UBC f a c u l t y advisors. You are welcome to hear our tape or to read the t r a n s c r i p t of our discussion. At the end of the study, I w i l l ask for your feedback on a printed summary of my findings, to be c e r t a i n that I have accurately brought together the information given by you and by other p a r t i c i p a n t s . I am asking that p a r t i c i p a n t s i n t h i s study are over the age of 25 years, were diagnosed with CFS by a medical doctor over two years ago, are geographically accessible for interviews (that i s , we can arrange to get together), are conversant i n the English language, and are w i l l i n g to give some time .to share t h e i r views and experiences about recovering from CFS. 183 Appendix B: Informed Consent Form 185 your experiences i n recovering from CFS, and w i l l request your feedback i n r e l a t i o n to my i n t e r p r e t a t i o n . Our tal k s w i l l be about an hour i n length, and I expect we may need to get together two or three times. In addition, I w i l l ask for your feedback on a summary of the findings. In t o t a l , your p a r t i c i p a t i o n i n t h i s study may take about three or four hours of your time. Voluntary Participation, Confidentiality, Anonymity Your p a r t i c i p a t i o n i n t h i s project i s completely voluntary, and you may withdraw from the study at any time without prejudice, and without needing to give an explanation. In the event that you might wish to withdraw from the study, simply contact me to inform me of your decision. Our discussions w i l l be audiotaped and l a t e r transcribed into printed form. Any information which could possibly i d e n t i f y you w i l l be deleted from the printed t r a n s c r i p t . The tape of our conversation and the printed copy w i l l be stored i n a locked cabinet, and w i l l be a v a i l a b l e only to me and to my two UBC f a c u l t y advisors. The information gained from t h i s research w i l l be shared with the p a r t i c i p a n t s , with the lay community, and with health care providers. I w i l l make every e f f o r t to honour your c o n f i d e n t i a l i t y and anonymity. It must be acknowledged that anonymity cannot be absolutely guaranteed i n any study. Information obtained i n t h i s study may also be used for educational purposes and research which may involve a secondary analysis of the interviews, with the understanding that any ad d i t i o n a l research projects that use the interviews w i l l be approved by the appropriate u n i v e r s i t y committees. Signature of Researcher (Delcie E. C. H i l l ) Date Participant's Statement The study described above has been explained to me. I understand the nature of the study, and v o l u n t a r i l y consent to p a r t i c i p a t e i n t h i s a c t i v i t y . I understand that the information r e s u l t i n g from t h i s project may be reported, but that I w i l l not be i d e n t i f i e d . I have had an opportunity to ask questions, and understand that future questions I may have about the research are welcomed by the researcher. I have received a copy of the information l e t t e r and t h i s consent form to keep for future reference. Signature of Par t i c i p a n t Date copy to p a r t i c i p a n t Source: Woods & Catanzaro (1988, pp. 80-81) Appendix C Summary Report for Par t i c i p a n t Feedback. - Letter to Pa r t i c i p a n t . - Summary Report. - The Beast Story. 188 S u m m a r y R e p o r t f o r P a r t i c i p a n t F e e d b a c k S u c c e s s f u l H e a l i n g P a t h w a y s i n t h e R e c o v e r y f r o m C F S A s I l i s t e n e d t o y o u r p e r c e p t i o n s a b o u t y o u r j o u r n e y a l o n g t h e p a t h w a y t o r e c o v e r y , a n d a s I t h o u g h t a b o u t t h e m e a n i n g o f t h e s t o r i e s y o u t o l d m e , I b e g a n t o v i s u a l i z e t h i s i l l n e s s c a l l e d " c h r o n i c f a t i g u e s y n d r o m e " ( C F S ) a s a n i n t r u d i n g b e a s t i n y o u r l i f e . T h u s , t h e s t o r y a t t h e e n d o f t h i s s u m m a r y . T h e s t o r y h e l p e d me t o make m e a n i n g o f t h e c h a n g i n g r e l a t i o n s h i p b e t w e e n y o u a n d t h e i l l n e s s a s y o u m o v e d o n y o u r h e a l i n g j o u r n e y . I t i s a r e l a t i o n s h i p o f f o r e g r o u n d - b a c k g r o u n d . I n t h e s t o r y , t h e B e a s t p u s h e d i t s way i n t o t h e f o r e g r o u n d o f t h e p e r s o n ' s l i f e . T h e s t o r y o f r e c o v e r y e n c o m p a s s e s t h e p r o c e s s e s t h e p e r s o n u s e d t o p u s h t h e B e a s t " t o i t s p r o p e r p o s i t i o n way i n t h e b a c k g r o u n d " s o t h a t t h e p e r s o n c o u l d r e c l a i m t h e i r " p r o p e r p o s i t i o n i n t h e f o r e g r o u n d " o f h i s o r h e r l i f e . A l t h o u g h y o u r p a t h w a y i s u n i q u e , I f o u n d t h a t s i m i l a r p r o c e s s e s m o v e d y o u a n d t h e o t h e r p a r t i c i p a n t s t o w a r d s r e c o v e r y ( b a c k i n t o t h e f o r e g r o u n d o f y o u r l i f e ) . Y o u c o u l d t h i n k o f t h e p r o c e s s e s a s i s s u e s t o b e a c c o m p l i s h e d a l o n g t h e p a t h w a y . F o u r m a j o r p r o c e s s e s w e r e e v i d e n t i n t h e p a r t i c i p a n t ' s s t o r i e s : l e g i t i m i z i n g , p u t t i n g t h e i l l n e s s i n i t s p l a c e , n e g o t i a t i n g t h e c r i t i c a l b a l a n c e , a n d r e d e f i n i n g h e a l t h y s e l f . T h e p a r t i c i p a n t s ' s t o r i e s r e p r e s e n t e d t h e s e a s o n g o i n g p r o c e s s e s w h i c h w e r e i n d i v i d u a l l y d e t e r m i n e d . T h a t i s , y o u a n d t h e o t h e r p a r t i c i p a n t s h a n d l e d t h e m i n y o u r own w a y , o r d e r a n d p a c e . T h e f o u r p r o c e s s e s a r e f u r t h e r e x p l a i n e d i n P a r t I I I o f t h i s s u m m a r y . F r o m o u r d i s c u s s i o n s , I l e a r n e d t o u n d e r s t a n d t h a t m o v e m e n t i n t h e p r o c e s s e s a l o n g t h e h e a l i n g p a t h w a y r e l a t e d t o t h e c h o i c e s made b y e a c h i n d i v i d u a l . " C h o i c e s " s t o o d o u t a s t h e c e n t r a l c o n c e p t i n t h e u n i q u e p a t h w a y y o u a n d t h e o t h e r p a r t i c i p a n t h a v e u s e d i n y o u r h e a l i n g j o u r n e y . I n P a r t I I o f t h i s s u m m a r y , I w i l l f u r t h e r d i s c u s s " c h o i c e s " , t h e i r o r i g i n s a n d t h e i r o u t c o m e s . I n o u r d i s c u s s i o n s , we t a l k e d a b o u t o u r d e f i n i t i o n o f " r e c o v e r y " a n d t h e m e a n i n g i t h a s f o r y o u . M a n y p a r t i c i p a n t s i d e n t i f i e d a d i s t i n c t i o n b e t w e e n " r e c o v e r i n g " a n d " r e c o v e r e d " , a n d how t h e s e r e l a t e t o " r e c o v e r y " . D e f i n i n g t h e s e c o n c e p t m o r e c l e a r l y w i l l h e l p i n o u r u n d e r s t a n d i n g o f h e a l i n g p a t h w a y s . T h e s e t h r e e c o n c e p t w i l l b e c l a r i f i e d i n P a r t I o f t h i s s u m m a r y . P a r t I: R e c o v e r y , R e c o v e r i n g , R e c o v e r e d . A l l p a r t i c i p a n t s a g r e e d w i t h t h e f o l l o w i n g d e f i n i t i o n o f r e c o v e r y : " R e - e s t a b l i s h i n g a s e n s e o f e q u i l i b r i u m , c o n t r o l , h a r m o n y , q u a l i t y [ o f ] l i f e , . . . a n d s a t i s f a c t o r y l e v e l o f f u n c t i o n i n g " ( C o l l i n g e , 1 9 9 3 , p p . 3 2 - 3 3 ) a s i d e n t i f i e d b y t h e i n d i v i d u a l . O n e p a r t i c i p a n t p o i n t e d o u t t h e n e e d t o c l a r i f y w h e t h e r " r e c o v e r y " i s a p r o c e s s o r a n e n d s t a t e : "I d o n ' t t h i n k I am n e c e s s a r i l y r e c o v e r e d . I t h i n k i t s a p r o c e s s o f r e c o v e r i n g . . . " S e v e r a l p a r t i c i p a n t s d e s c r i b e d t h e m s e l v e s a s i n t h e " p r o c e s s o f r e c o v e r i n g " . O n e p e r s o n who p e r c e i v e d h e r s e l f a s " r e c o v e r i n g " e s t i m a t e d t h a t s h e w a s 90 -95% a l o n g t h e p a t h w a y t o " r e c o v e r e d " . A n o t h e r e s t i m a t e d 50%. F i v e p a r t i c i p a n t s p e r c e i v e t h e m s e l v e s a s b e i n g " r e c o v e r e d " - d e f i n i n g 189 t h a t a s a n e n d s t a t e . O n e p a r t i c i p a n t s p o k e o f " r e c o v e r e d " i n t h e f o l l o w i n g w a y : "I h a v e b e e n w e l l f o r o n e a n d a h a l f y e a r s n o w . " A n o t h e r p a r t i c i p a n t who p e r c e i v e d h i m s e l f a s r e c o v e r e d s a i d , " O v e r a l l - p h y s i c a l , e m o t i o n a l , m e n t a l a n d s p i r i t u a l [ I am ] m o r e t h a n 1 0 0 % " . I t b e c o m e s c l e a r i n t h e a b o v e d i s c u s s i o n t h a t " r e c o v e r y " a s we d e f i n e d i t c a n i n c l u d e b o t h t h e p r o c e s s o f " r e c o v e r i n g " a n d t h e p e r c e i v e d e n d s t a t e o f " r e c o v e r e d " . P a r t I I : C h o i c e s - O r i g i n s a n d O u t c o m e s I q u e s t i o n e d w h a t i t was t h a t f u e l l e d i n d i v i d u a l m o v e m e n t t o w a r d s a n i n d i v i d u a l l y p e r c e i v e d r e c o v e r y . Y o u a n d t h e o t h e r p a r t i c i p a n t s t o l d me i t r e l a t e d t o t h e n o t i o n o f " c h o i c e s " . C l e a r l y , e a c h p e r s o n made d i f f e r e n t c h o i c e s , b u t , w h a t made o n e p e r s o n c h o s e o n e p a t h w a y a n d a n o t h e r p e r s o n c h o o s e a v e r y d i f f e r e n t o n e ? F o r e x a m p l e , o n e p a r t i c i p a n t c h o s e t o c o n s u l t o n l y w i t h h e r t r a d i t i o n a l m e d i c a l d o c t o r , w h e r e a s t w o o t h e r p a r t i c i p a n t s h a v e s e e n n u m e r o u s d i f f e r e n t h e a l e r s . T h r e e p a r t i c i p a n t s s o u g h t i n f o r m a t i o n a b o u t C F S a n d r e a d e v e r y t h i n g t h e y c o u l d g e t t h e i r h a n d s o n , w h e r e a s a n o t h e r p a r t i c i p a n t h a d m i n i m a l i n t e r e s t i n " k n o w i n g t h e f a c t s " . A s we w o r k e d t o g e t h e r , y o u h e l p e d me u n d e r s t a n d t h e m e a n i n g o f c h o i c e s - t h e i r o r i g i n s a n d o u t c o m e s . I n r e l a t i o n t o o u t c o m e s , y o u a n d t h e o t h e r p a r t i c i p a n t s s p o k e a b o u t t h e n o t i o n o f " m o v i n g o n " t o new a p p r o a c h e s a n d " m o v i n g o n " a s y o u f e l t s o m e i m p r o v e m e n t a l o n g t h e h e a l i n g p a t h w a y . I n e v i t a b l y y o u h i t a " b l a n k w a l l " ( a l s o p e r c e i v e d a s a " d e a d e n d " o r a " p l a t e a u " ) a n d r e a l i z e d t h a t t h i s was n o t t h e " c u r e " . Some o f t h e new a p p r o a c h e s y o u t r i e d l e d d i r e c t l y t o a " b l a n k w a l l " . Y o u may h a v e n e e d e d t o r e s t t h e r e f o r a w h i l e ( a c h o i c e i n i t s e l f ) b e f o r e y o u m o v e d o n t o m a k i n g o t h e r c h o i c e s . T h e i m a g e o f w o r k i n g y o u r way a l o n g a m a z e c o m e s t o m i n d . I l e a r n e d t h a t t h e i n d i v i d u a l i t y o f y o u r c h o i c e s w a s d r i v e n b y t h r e e f o r c e s : y o u r i n f o r m a t i o n , y o u r b e l i e f s , a n d y o u r e s t e e m n e e d s . E s t e e m n e e d s r e p r e s e n t w h a t i s m o s t f u n d a m e n t a l l y i m p o r t a n t t o y o u r f e e l i n g g o o d a b o u t y o u r s e l f a s a p e r s o n . L e t me g i v e y o u a n e x a m p l e . I f y o u k n e w t h a t p e o p l e who h a v e C F S h a v e i m p r o v e d w i t h t h e u s e o f h e r b a l m e d i c a t i o n s p r e s c r i b e d b y a n a t u r o p a t h , t h e n t h a t i n f o r m a t i o n i s a v a i l a b l e t o y o u w h e n m a k i n g c h o i c e s . I f y o u b e l i e v e t h a t n a t u r o p a t h s a r e n o t a v a l i d s o u r c e o f h e a l t h c a r e , t h e n y o u w o u l d h e s i t a t e t o s e e k s u c h c o u n s e l . H o w e v e r , i f y o u r i d e n t i t y o f y o u r s e l f i s s t r o n g l y a t t a c h e d t o y o u r w o r k r o l e , t h a t m i g h t m o t i v a t e y o u t o c o n s u l t a n a t u r o p a t h w i t h t h e h o p e t h a t y o u w o u l d b e w e l l e n o u g h t o w o r k . T h e d i a g r a m b e l o w r e p r e s e n t s t h e m o v e m e n t a r o u n d m a k i n g c h o i c e s . I n f o r m a t i o n B e l i e f s E s t e e m N e e d s 190 Part I I I : The Four Processes As I mentioned e a r l i e r , your r e l a t i o n s h i p with CFS on the pathway towards recovery can be represented i n four major processes: l e g i t i m i z i n g , putting the i l l n e s s i n i t s place, negotiating the c r i t i c a l balance, and redefining healthy s e l f . In t h e i r r e l a t i o n s h i p with CFS, p a r t i c i p a n t s have not necess a r i l y experience the processes i n a l i n e a r manner with one predictably following another. I t seems more to be a notion of a l l processes p o t e n t i a l l y e x i s t i n g at any one point i n time, but that one process may be more predominant at that time. For example, the l e g i t i m i z i n g process may have been more prominent early i n your r e l a t i o n s h i p with CFS. That i s when you were looking for a diagnosis and for an understanding of what was happening to you. However, the l e g i t i m i z i n g process continues throughout the r e l a t i o n s h i p , but i n a le s s prominent p o s i t i o n . For example, as you encountered persons who d i d not believe or understand. At that time, you may have found that you and others again where questioning i f your experience with CFS i s genuine - again l e g i t i m i z i n g . The above discussion communicates the concept of the processes which you and other p a r t i c i p a n t s t o l d me changed i n your r e l a t i o n s h i p with CFS as you moved towards recovery. Now I would l i k e to b r i e f l y o u t l i n e what each process can encompasses. Legitimizing Legitimizing deals with "being believed" and "b e l i e v i n g " - that i s , others and s e l f recognizing, accepting, and v a l i d a t i n g the r e a l i t y of the i l l n e s s . Part of t h i s process r e l a t e s to "understanding myself" and "understanding the nature of the i l l n e s s " . A l l p a r t i c i p a n t s commented on the doctor's r o l e i n the process of l e g i t i m i z i n g . By v i r t u e of our society entrusting the t r a d i t i o n a l medical doctor with the authority of diagnosing i l l n e s s and v a l i d a t i n g need for si c k leave, the doctor holds a powerful r o l e i n l e g i t i m i z i n g . As you know, the scepticism of some professionals and lay persons about the r e a l i t y of CFS as an i l l n e s s can make t h i s a discouraging, f r u s t r a t i n g and humiliating process. The goal of l e g i t i m i z i n g i s well expressed by one p a r t i c i p a n t : "you need to accept and move on". When the l e g i t i m i z i n g process i s active, the i l l n e s s i s predominantly i n the foreground of your l i f e . That i s , the ways that CFS i n t e r f e r e with l i f e are consciously i n the person's awareness. One p a r t i c i p a n t explained her f r u s t r a t i o n about having no legitimate way to v e r i f y that she could not take on a job that to others seemed ide a l for her: "I am a b i t too dependent on these outside opinions...always seeking that approval, that legitimacy. I have to get past that". Putting the I l l n e s s i n i t s Place This process encompasses learning about the ways that worked for you i n putting the i l l n e s s more i n the background of your l i f e . There are two main categories i n t h i s process: r e - e s t a b l i s h i n g h o l i s t i c homeostasis and defending the s e l f concept. Lets look at each b r i e f l y . 191 Re-establishing h o l i s t i c homeostasis. We have talked about t h i s category i n r e l a t i o n to physical and soul healing work. I learned from you and the other p a r t i c i p a n t s that each person had unique healing work i n each category, and that the i n d i v i d u a l needed to do the appropriate physical and soul work i n order to maximize healing and to maintain wellness. For example, one p a r t i c i p a n t ' s physical work included: "a hard core of exercise", Ginseng, vitamins and minerals, Pentago (for g a s t r o - i n t e s t i n a l support), St. John's (for l i v e r support), a high f i b r e d i e t , and being ever a l e r t to h i s l i m i t s . His soul work included: s p i r i t u a l connectedness, meditation, prayer, a one-month sun holiday every year, easing up on expectations he tended to place on himself, and being i n control of l i f e choices. Another p a r t i c i p a n t ' s physical work involved a slowly progressive exercise program balanced with scheduled r e s t periods, eating l i v e r once a week, and maintaining a healthy d i e t . Her soul work re l a t e d to "taking care of myself", maintaining a strong sense of being i n control of her l i f e , making work a p r i o r i t y , learning to handle her s e n s i t i v i t y i n r e l a t i o n s h i p s , valuing her r i g h t to look a f t e r her own needs, and maintaining a supportive group around her. The interconnectedness of the mind, body and s p i r i t i n bringing the h o l i s t i c "body" back into balance was recognized by each p a r t i c i p a n t . Your unique needs and comfort may have been predominant i n e i t h e r physical work or soul work. Defending the s e l f concept. When a person experiences an i l l n e s s as frightening and in c a p a c i t a t i n g as CFS, t h e i r image of themself i s threatened. This can put an a d d i t i o n a l load on a devastate being. In order to maintain a sense of intactness of s e l f , the mind tends to develop mechanisms which for the i n d i v i d u a l makes more acceptable meaning of the experience. You and the other p a r t i c i p a n t demonstrated the s p e c i a l ways of "making meaning" which helped "put the i l l n e s s i n i t s place" - to push i t towards the background so that you had more control over your l i f e . Five mechanisms that p a r t i c i p a n t s used were: normalizing, minimizing, reframing, l e t t i n g go, and there i s a purpose. These are described below. The notion of normalizing involved viewing oneself as "not so d i f f e r e n t " from others. An example might be the p a r t i c i p a n t who perceived she caught the same colds and flues as colleagues, but " i t i s just that what I am getting wants to stay with me a l i t t l e longer". Minimizing was used to perceive aspects of the i l l n e s s experience as having minimal importance. Like making l i g h t of the i l l n e s s . For example, "I think i t could have been a l o t worse than being t i r e d . " Another example: "Underlying i t a l l was t h i s thought that I wasn't " r e a l ' s i c k " . Reframing i s the notion of r e i n t e r p r e t i n g the i l l n e s s experience i n such a way that i t i s more p o s i t i v e for the i n d i v i d u a l . One p a r t i c i p a n t used what she c a l l e d " p o s i t i v e mental choices" which helped her perceive her dependent s i t u a t i o n as a c t u a l l y g i ving a g i f t to the caretaker i n allowing them to do for her. She says, " I t does make a diff e r e n c e how you perceive what i s going on". L e t t i n g go represents the notion of putting aside expectations and perceived demands. For example one p a r t i c i p a n t said, "I am not so much of a 192 p e r f e c t i o n i s t . . . . I now accept less of myself". The notion of "there i s a purpose" involves perceiving that there i s a good reason f o r the i l l n e s s experience i n a bigger p i c t u r e of the universe. Several p a r t i c i p a n t s expressed t h e i r b e l i e f that "I have a very good idea of why I got s i c k . My roads to recovery I need to share with other people". So by using mental mechanisms which allows the person to experience the i l l n e s s as less threatening, le s s c o n t r o l l i n g , and less incapacitating, you and other p a r t i c i p a n t s "put the i l l n e s s i n i t s place". Negotiating the C r i t i c a l Balance This process encompasses learning from the "moving on" and "blank w a l l " experiences and taking.control of making choices which promote a sense of "healthy s e l f " . In t h i s process, you and other p a r t i c i p a n t s learned to " l i s t e n to my body", respect the l i m i t s , and learned an increasing sense of control over the i l l n e s s within you. As you developed these s k i l l s , you gained a sense of personal power i n r e l a t i o n to the i l l n e s s . In t h i s process you learned your strengths i n bargaining - " I f I , then I can ". An example i s a p a r t i c i p a n t who rested for two days i n order to be able to f u l f i l a heavier work load expected on the t h i r d and fourth day. S k i l l s learned i n t h i s process also allow you the choice of trade o f f s . For example, a p a r t i c i p a n t who strongly valued engaging i n a c t i v i t i e s with her "active f r i e n d s " chose to partake f u l l y knowing that she would "pay" with an increase of symptoms. Sometimes the c r i t i c a l balances were tested, and you were pleasantly surprised that the boundaries imposed by CFS had expanded. Negotiating the c r i t i c a l balance i s an important process i n your r e l a t i o n s h i p with CFS i n that i t develops your s k i l l s i n taking control of the i l l n e s s within you. You learn how you can make choices to push the i l l n e s s i n the background - choices that maximize wellness. And so, t h i s process serves an important r o l e on your pathway to recovery. Redefining Healthy Self The healthy s e l f integrates CFS into the concept of s e l f but i n such a way that the i l l n e s s increasingly s i t s peacefully and s i l e n t l y i n the background, and you have an increasing sense of control over i t . Redefining healthy s e l f was an ongoing process i n your r e l a t i o n s h i p with CFS. For each "moving on" and "blank wall" experience, there was a redefining of the healthy s e l f . You arid the other p a r t i c i p a n t s have t o l d me that movement i n t h i s process can r e l a t e to expectations. For example, "I believed that I was going to get better" or "I am going to beat t h i s thing" sets an expectation of reclaiming the notion of healthy s e l f . You have t o l d me about two other aspects of t h i s process which become important i n your r e l a t i o n s h i p with CFS: "you are d i f f e r e n t " and "a l i f e s t y l e r e v i s i o n " . P articipants who perceived that they were recovered t o l d me that the redefined healthy s e l f i s " . . . d i f f e r e n t . You are stronger. D i f f e r e n t . " The dif f e r e n c e you have talked about i s expressed i n a p o s i t i v e sense. One pa r t i c i p a n t said that her recovered healthy s e l f has "taken charge of my l i f e and made me a happier more f u l f i l l e d person....So 193 q u a l i t y i s d e f i n i t e l y better". When recovered, some p a r t i c i p a n t s ' redefined healthy s e l f as integrated i n a healthy " l i f e s t y l e agreement". "Once you do recover, you just somehow go on with the l i f e s t y l e changes that are permanent." And so, that i s my construction of what we learned about your healing pathways i n the recovery from CFS. The construction looks at the meaning of the changing r e l a t i o n s h i p between you and CFS as you move along your healing journey. Your unique journey i s a story of the processes as you have used (or are using them) to push the Beast way into the background of your l i f e so that you could (can) reclaim you r i g h t f u l place i n the foreground, i n control of your l i f e . The construction discussed the "choices" as a cen t r a l concept i n understanding the i n d i v i d u a l i t y of "moving on" and "blank walls". The diagram below depicts my construction of our wisdom. LEGITIMIZING CRITICAL BALANCE REFORMULATING THE RELATIONSHIP BETWEEN CFS AND ME 194 Taming of the Beast A Story of Recovering from Chronic Fatigue Syndrome Chronic fatigue syndrome i s l i k e an unknown Beast which intrudes into the l i f e of an unsuspecting person. The Beast sneaks up from the background of the person's awareness, i t s presence unnoticed. There comes a time when the person r e a l i z e s that something i s i n t e r f e r i n g with t h e i r health. It i s the Beast. The s i g n i f i c a n c e of the intruder i s not f i r s t recognized. The person thinks, "This Beast can be tamed. I w i l l go to the Beast tamer who can prescribe the proper Beast taming treatment. This i s just an ordinary Beast. I w i l l get over i t " . But i t i s not so. The Beast le e r s on, becoming more and more a frightening threat i n the foreground of the person's l i f e . The curious thing about t h i s Beast i s that i t cannot be seen by others - only by the person whose l i f e i t shares. The beast tamer does not see the Beast, and knows of no way of proving i t e x i s t s . Soon others wonder i f the Beast r e a l l y e x i s t s or i f i t only l i v e s i n the person's head. "But i t i s r e a l " , the person pleads, " W i l l no one believe me? Do you think I choose to s u f f e r t h i s way? I want t h i s Beast out of my l i f e . Get i t out of my l i f e ! " But no one can. A t e r r i f i e d f e e l i n g comes over the person when the tamer confesses that there i s no known way of r i d d i n g them of the Beast. "What s h a l l I do?" The Beast-infested person f r a n t i c a l l y searches to f i n d persons or potions that might tame the Beast. Some help a b i t for a while, but none can r i d them of the Beast. The person t r i e s to ignore the Beast, hoping i t w i l l go away. The Beast, however, does not l i k e to be ignored. As i f to teach a lesson, the Beast makes sure that the person takes notice of i t and i t s power. When the Beast becomes t h i s powerful, i t predominates i n the foreground of the person's l i f e ^ The person says, "Let i t have i t s way. I don't have the energy to f i g h t i t . I don't have any control over i t anyways. Do as you w i l l , Beast!" By and by, the person learns more about the nature of the Beast, and learns to accept that the Beast i s here to stay. The person learns to negotiate with the Beast. As the i n d i v i d u a l learns more about taming the Beast, the person becomes more powerful, and the Beast becomes smaller and less demanding. At times the Beast can even seem h e l p f u l , pointing out ways of l i f e that are happier for the person - ways of l i f e that also appease the Beast. As the person's sense of control grows, the Beast's power defl a t e s and moves way into the background of the person's l i f e . But make no mistake, the Beast i s not gone. I t l i v e s q u i e t l y i n the background, ready to remind the person to take care of s e l f and to l i s t e n to h i s or her body. The person accepts the tamed Beast as part of h i s or her new s e l f . And so the person reclaims a proper p o s i t i o n i n the foreground of h i s or her l i f e . The small, tamed Beast takes i t s proper p o s i t i o n way i n the background, almost (but never t o t a l l y ) forgotten. The Beast i s tamed, and the person and the Beast l i v e peacefully together ever a f t e r - well most of the time. THE END 195 Appendix D My B e l i e f s About Chronic Fatigue Syndrome 196 My B e l i e f s About Chronic Fatigue Syndrome: March, 1995 In order to hold myself accountable to my present emic views about CFS, and i n order to ensure that those views do not i n c o r r e c t l y influence the research I am embarking on, I have chosen to state my b e l i e f s i n r e l a t i o n to CFS. Let me c l a r i f y that as I perceive c o n s t r u c t i v i s t ( n a t u r a l i s t i c ) inquiry, my b e l i e f s (and my t a c i t knowledge) are assumed to be important to the inquiry, and can and w i l l be part of the f i n a l construction. What I want to be held accountable for i s my intent not to influence p a r t i c i p a n t s (but to hear t h e i r constructions), and not to " f i n d " my own views during analysis (but to work to construct a consensual r e a l i t y as evolves from interviews with the p a r t i c i p a n t s ) . B e l i e f s About Etiology I support a multicausal (probably limbic system mediated) e t i o l o g i c a l theory of CFS, and believe that the i n d i v i d u a l who becomes i l l with CFS: (a) has predisposing q u a l i t i e s which may be inherited, (b) has immune system involvement - e i t h e r i n h e r i t e d or trauma-stress induced, (c) has hormonal and metabolic imbalances - e i t h e r i n h e r i t e d or trauma-stress induced, (d) i s i n a state of h o l i s t i c homeostatic imbalance as a r e s u l t of a, b, and c, above, and (e) i s confronted with at l e a s t one of several possible p r e c i p i t a t i n g factors (for example: physical trauma, microbial trauma, hormonal trauma, psychological trauma) which serve as an assault to the h o l i s t i c a l l y perceived body. When the above conditions occur, the i n d i v i d u a l ' s precarious health state i s tipped into exacerbation of CFS symptoms. Metaphorically I compare t h i s with a kaleidoscope pattern i n which a s p e c i f i c l a s t "piece" f a l l s precariously into the perfect place to produce the CFS "picture". I believe that the symptomology of CFS i s i n d i v i d u a l i s t i c and depends 197 on at le a s t three f a c t o r s : (a) the s p e c i f i c pathway of circumstances which lead to CFS i n the i n d i v i d u a l ; (b) pathology secondary to CFS (for example: opportunistic i n f e c t i o n s , s e n s i t i v i t y responses, reactive depression/anxiety); and (c) personal and cultural-based responses of the i n d i v i d u a l . I believe that there may be as many pathways to the signs and symptoms of CFS as there are in d i v i d u a l s who have the i l l n e s s . B e l i e f s About Persons Who are Experiencing CFS & the Health Care System I believe i t i s an accepted fact that society has placed medicine as the gatekeeper of health care. I believe that i t i s an unfortunate and f r u s t r a t i n g event for a l l involved that CFS seems not to be an i l l n e s s which f i t s i nto the mandate of medical science: to diagnose and treat b i o p h y s i o l o g i c a l disorders. Nevertheless, i n order for persons who have CFS to have t h e i r i l l n e s s experience validated i n our society, they must convince a physician that they q u a l i f y i n r e l a t i o n to the CDC c r i t e r i a . If medically diagnosed with CFS, persons may receive a v a r i e t y of services from a medical physician: placating advice, symptomatic medication, support for s i c k leave, or possibly a r e f e r r a l to another physician. Medical based care i s supported by health care insurance. Generally, physicians do not r e f e r persons diagnosed with CFS to other health care professionals such as: naturopaths, s o c i a l workers, psychologists, nurse p r a c t i t i o n e r s , massage therapists, physiotherapists, or acupuncturist. And yet, I believe that these are some of the health care professionals whom persons diagnosed with CFS f i n d h e l p f u l . Generally, the services of these "other health care workers" are not covered by health care insurance. I believe that the wisdom of many d i s c i p l i n e s and schools of thought must be used by the person experiencing CFS i n order to learn how to work towards recovery. I view the possible contribution of each d i s c i p l i n e as a 198 piece of a pie, cut into d i f f e r e n c e s i z e pieces for each i n d i v i d u a l who has CFS - the whole pie representing the optimal care plan for that i n d i v i d u a l . For example, one i n d i v i d u a l may need two large pieces (two d i f f e r e n t therapies or t h e r a p i s t s ) , and another may need four or s i x , or more. I think i t would be i d e a l for a m u l t i d i s c i p l i n a r y team to provide care for persons who are experiencing CFS. I believe that i n developing h i s or her unique health care plan towards recovery, most persons experiencing CFS need support, information, and advocacy from a health care p r o f e s s i o n a l . I believe that nurses have a great deal to o f f e r persons who have CFS. I perceive that nurses can employ t h e i r s k i l l s as teachers, advocates, empathic supporters, researchers, and coordinators of care i n carrying out t h e i r mandate. From my personal experience, the majority of nurses have not developed t h e i r knowledge nor t h e i r r o l e f or working with persons who have CFS. That i s one of the motivating factors for my choice of topic for t h i s research. The other motivation i s that I have CFS. My Personal Experience with CFS I was medically diagnosed with CFS two and a h a l f years ago. As f a r as I know, i n my community there i s no physician who a c t i v e l y works with persons who are experiencing CFS. When f i r s t diagnosed (by the s p e c i a l i s t my physician r e f e r r e d me to i n a larger c i t y ) I assumed that we (my physician and I) would be working together towards my recovery. It has not worked that way. My physician does the best he can maintaining i n t e g r i t y to h i s p r a c t i c e b e l i e f s , but I perceive I have had to discover and develop my own pathways to recovery. I continue to investigate new pathways, and am keenly interested i n learning from p a r t i c i p a n t s i n the study. Healing pathways which I have found useful include: maintaining control of my recovery program; emphasizing my well systems; physical 199 a c t i v i t y and exercise program (according to how I f e e l that day) balanced with r e s t ; sleep between 2200 and 0530; mind-body healing, ( v i s u a l i z a t i o n , affirmations, self-hypnosis, therapeutic touch); vitamin and mineral supplements (vitamin C, beta-carotene, vitamin E, zinc, magnesium, calcium, salmon-oil, o i l of primrose); avoiding food s e n s i t i v i t i e s (refined sugars and alcohol); avoiding c a f f e i n e ; avoiding preservatives; increasing exposure to fresh a i r , sunshine and fun; minimizing exposure to, and regulating my response to stressors; and s e l f t a l k . I believe recovery i s possible for me, but that I am vulnerable to recurring episodes of exacerbated symptoms. I think we can learn much about the pathways to recovery from CFS by asking the i n d i v i d u a l s who t r a v e l those roads. That i s the focus of my research. 

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