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Casual attributions and the search for a sense of purpose in women with inflammatory arthritis 1995

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CAUSAL ATTRIBUTIONS AND THE SEARCH FOR A SENSE OF PURPOSE IN WOMEN WITH INFLAMMATORY ARTHRITIS by VAUGHAN MILLER B.A., Simon Fraser University, 1983 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF ARTS in THE FACULTY OF EDUCATION Department of Counselling Psychology We accept this thesis as conforming to the required standard 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 July , 1995 © V a u g h a n M i l l e r , 1995 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department of The University of British Columbia Vancouver, Canada Date Sgpy-gmr^/ In f DE-6 (2/88) 11 ABSTRACT This study sought to understand the ways i n which women with inflammatory a r t h r i t i s , including rheumatoid a r t h r i t i s (RA), juvenile rheumatoid a r t h r i t i s (JRA), and p s o r i a t i c a r t h r i t i s (PA), developed t h e i r own causal models over the course of t h e i r i l l n e s s , and the ways i n which the elements of these causal models influenced the way they l i v e t h e i r l i v e s . By asking patients "why do you think you got a r t h r i t i s ? " and by tracing the route these patients took i n a r r i v i n g at t h e i r causal conclusions, the world views of the co- investigators were revealed, to some extent, as were the ways i n which these world views had been modified i n order to make sense of chronic i l l n e s s . This study included 12 co-investigators, and took a q u a l i t a t i v e approach. Repeated in-depth, open-ended interviews were conducted with each co-investigator, and data i s presented here i n the form of l i f e schemes. Data analysis involved an examination of s i m i l a r i t i e s and differences across s t o r i e s , and a determination of the kinds of events that influence the formation of causal conclusions. This study found that the causal models of the co- investigators developed i n a f a i r l y t y p i c a l manner, st a r t i n g f i r s t with physical causes, then expanding to i i i incorporate psychological causes, then expanding further to a consideration of e x i s t e n t i a l explanations. A general story was written to synthesize the information, and to show the o v e r a l l pattern of development of the causal models. Within the general story differences across causal models are highlighted, as are the d i f f e r e n t meanings assigned to the same causal a t t r i b u t i o n by d i f f e r e n t co-investigators. i v Table of Contents Abstract i i Table of contents i v Acknowledgements v i i CHAPTER I - INTRODUCTION 1 Purpose of the Study 3 De f i n i t i o n of Terms Used.. 4 Strengths and Limitations 5 Significance of the Study.. 7 Personal Perspectives 9 CHAPTER II - LITERATURE REVIEW 11 Coping with Rheumatoid A r t h r i t i s 12 Causal Attributions for D i s a b i l i t y and I l l n e s s 16 Il l n e s s Narratives and Causal A t t r i b u t i o n 28 L i f e Schemes and the Search for Meaning.. 32 Assumptions 36 Summary . . 37 CHAPTER III - METHODOLOGY 39 Rationale 39 Co-investigators 43 Rationale for including only women i n the study 48 Data C o l l e c t i o n 49 Data Analysis 54 Summary 58 CHAPTER IV: RESULTS - THE LIFE SCHEMES 60 Diana . 60 V Marlene 68 Sophie 76 Tamar a 83 Gwen 93 Madeleine 101 Stacey 108 Caroline .117 Lorna 123 Marilyn 131 Jess 135 Robin 144 CHAPTER V: THE GENERAL STORY 156 Overview 156 In the beginning: A focus on the physical 160 External causes 162 Constitutional 162 The way you are 163 What you are doing 163 In the middle: The incorporation of stress into the causal model....164 Towards the end: A consideration of the metaphysical 167 Influences incorporated into the model ..171 The nature of the general story 174 CHAPTER VI: DISCUSSION 176 Summary of the findings 177 v i The l i f e scheme framework and the study's findings...178 Implications for counselling.... 182 Limitations of the study 184 Implications for further research... 185 A footnote: What the medical profession says about the etiology of a r t h r i t i s 186 REFERENCES 189 APPENDICES 194 Appendix A: Co-investigator demographics 195 Appendix B: My own story 196 Appendix C: Interview protocol .....218 Appendix D: Sample timeline... 219 Appendix E: Outlines of the causal models 220 Appendix F: Summary of the causes given 233 Appendix G: Consent form 236 v i i Acknowledgements I g r a t e f u l l y acknowledge the guidance, i n s p i r a t i o n , and f a i t h of my thesis supervisor, Dr. Bonita Long; her t i r e l e s s devotion to her students, and to good research, i s a constant source of amazement. I acknowledge the support of BC Rehab and the A r t h r i t i s Society, who gave me permission to interview t h e i r c l i e n t s . I thank the women who shared t h e i r s t o r i e s with me; t h e i r willingness and t h e i r candour were marvellous g i f t s . I. Chapter I: Introduction The f e e l i n g that one's l i f e i s meaningful has, according to Thompson and Janigian (1985), two prerequisites. F i r s t , one must view the world as a place i n which order p r e v a i l s , i n which the p r i n c i p l e s of cause and e f f e c t are known to the i n d i v i d u a l to the extent that he or she can prevent, or at le a s t anticipate, the occurrence of negative events. Second, one must have a sense of purpose, a set of goals that can reasonably be r e a l i z e d given the way the world i s perceived to work. The onset of a di s a b l i n g disease such as rheumatoid a r t h r i t i s (RA) can s t r i p the i n d i v i d u a l of a sense of meaningfulness. The inexplicable intrusion of RA throws the in d i v i d u a l into chaos, not only i n terms of his or her day-to-day existence, but also i n terms of the world view from which he or she operates. As Bury (1982) states, the onset of RA implies "a xpremature ageing' for the i n d i v i d u a l . As such i t mark[s] a biographical s h i f t from a perceived normal tr a j e c t o r y through r e l a t i v e l y predictable chronological steps, to one fundamentally abnormal" (p. 173). Most people, at least i n mainstream North American culture, espouse a world view characterized by an overestimation of the justness, p r e d i c t a b i l i t y , and c o n t r o l l a b i l i t y of l i f e ' s events (Lerner, 1980), and t h i s may prove functional most of the time, and for most people, but 2 unsatisfactory i n the face of an unexpected negative event. Unable to detect congruence between the event of RA and a world view that disallows unpredictably, the RA patient i s l e f t with two choices, to reconstrue the event, or to reconstruct t h e i r world view to accommodate the occurrence of RA. One way to get a sense of the way patients f i t t h e i r i l l n e s s into t h e i r world views i s to explore t h e i r causal a t t r i b u t i o n s . By asking patients "why do people suffer?", and more s p e c i f i c a l l y , "why have you been made to suffe r with a r t h r i t i s ? " , we can begin to understand how people reconcile s u f f e r i n g with the just, orderly world that we want to believe e x i s t s , and how they place themselves i n the world as they perceive i t . Because the current state of s c i e n t i f i c knowledge about the etiology of RA i s such that p r a c t i t i o n e r s can only o f f e r l i m i t e d and incomplete explanations to t h e i r patients, medical explanations are t y p i c a l l y "supplemented by, and set against, a body of knowledge and meaning drawn from the ind i v i d u a l ' s own biography" (Bury, 1982, p. 181). One's biography incorporates elements such as family, r e l i g i o u s , s o c i a l , and 3 c u l t u r a l influences (Kleinman, 1988; Williams, 1984). Several causal hypotheses may be t e n t a t i v e l y formed and then rejected along the way as RA patients move through d i f f e r e n t stages of the l i f e course (Bury, 1991), and as they attempt to f i n d a f i t between t h e i r world views and t h e i r i l l n e s s e s . The process of developing a causal explanation may occur simultaneously with a reexamination of the path one's l i f e i s taking. L i f e goals may be reassessed and modified i n accordance with the physical l i m i t a t i o n s imposed by RA and with s h i f t i n g p r i o r i t i e s . Reestablishing a sense of purpose f o r oneself i s an important task with which RA patients must cope. Purpose of the Study The purpose of t h i s study i s to explore the causal a t t r i b u t i o n s of RA patients and the world views i n which these a t t r i b u t i o n s are embedded. In addition, I address several related sub-problems: 1. What i s the process by which causal conclusions are reached, and what are the key events that f a c i l i t a t e t h i s process? 4 2. How do s i g n i f i c a n t others (e.g., family members, close friends, clergy) influence the formation of these conclusions? 3. How do people with RA f i n d a sense of purpose i n t h e i r l i v e s ? In order to preserve the contexts i n which respondents place t h e i r experience of RA, I present these experiences i n narrative form (Kleinman, 1988; Mishler, 1986). D e f i n i t i o n of Terms Used In the present study, i t i s e s p e c i a l l y important to c l e a r l y state a d e f i n i t i o n of a t t r i b u t i o n because the way I use the word " a t t r i b u t i o n " i s d i s t i n c t from the way i t i s commonly used i n psychology. In adopting t h i s word, I return to the o r i g i n a l dictionary d e f i n i t i o n of "causal explanation" (Stien, 1983), and then widen my focus to include philosophical or e x i s t e n t i a l explanations as well. In addition to considering i n t e r n a l and external factors that people perceive as having an influence on the course of the disease, I consider the explanations people construct i n order to understand why they became i l l i n the f i r s t place. 5 When I r e f e r to the coping strategies used by RA patients, I am not using the word "coping" to mean "adjusting" or "adapting". Rather, I use the d e f i n i t i o n of coping proposed by Lazarus and Folkman (1984): the "constantly changing cognitive and behavioral e f f o r t s to manage s p e c i f i c external and/or in t e r n a l demands that are appraised as taxing or exceeding the resources of the person" (p. 141). This d e f i n i t i o n i s process-oriented, as opposed to t r a i t - oriented, and i s context-specific. In t h i s study, I seek to ascertain the ways i n which RA patients cope s p e c i f i c a l l y with the task of f i n d i n g a purpose i n l i f e . This involves an exploration of the aspirations each patient had before the onset of RA, and the process by which these aspirations were reevaluated, and modified as the disease progressed. Strengths and Limitations There are both strengths and l i m i t a t i o n s to any study that presents data i n narrative form. Viney and Bousfield (1991) evaluated the usefulness of narrative analysis i n understanding the experiences of AIDS- affected men. Advantages include the f a c t that narratives come closer than other methods of data 6 c o l l e c t i o n and presentation to conveying the unique experiences of respondents. Narratives are respectful of respondents, t r e a t i n g as important not only the d e t a i l s and the nuances contained within t h e i r s t o r i e s , but the ways i n which they t e l l t h e i r s t o r i e s as well. The very strength of t h i s approach i s also i t s weakness; while i t allows for very f u l l and r i c h p o r t r a i t s of indi v i d u a l s , i t disallows the formulation of conclusions that w i l l generalize to a population. Further, narratives cannot conform to the same standards of o b j e c t i v i t y demanded of quantitative research; narratives are, i n a very r e a l sense, collaborations between respondents and the investigator to whom they t e l l t h e i r s t o r i e s ; they are interpretations of the t e l l e r s ' s t o r i e s , and as such they in e v i t a b l y r e f l e c t the biases and assumptions of the investigator (Mishler, 1986; Williams, 1984). As Mishler (1986) states, "the meanings of questions and responses are contextually grounded and j o i n t l y constructed by interviewer and respondent" (p. 34). Significance of the Study This study may have c l i n i c a l implications. F i r s t , an understanding of the world views of RA patients, and 7 the causal hypotheses that have sprung from these world views, may help medical c l i n i c i a n s to give more e f f e c t i v e treatment to t h e i r patients. Kleinman (1988) advocates an approach to the practice of medicine that i s "captured by the words empathic listening, translation, and interpretation" (p. 228); he says that these are the s k i l l s of the c l i n i c i a n who treats i l l n e s s , the l i v e d experience of disordered physiology, as opposed to just disease. Although, the f u l l range of perspectives taken by RA patients cannot possibly be represented here, perhaps an in d i c a t i o n of the d i v e r s i t y of these perspectives might persuade medical p r a c t i t i o n e r s to set aside some of t h e i r assumptions i n the i n t e r e s t of t h e i r patients. Second, psychotherapists working with RA patients w i l l be more e f f e c t i v e i f they are sensi t i v e to the e x i s t e n t i a l c r i s i s often provoked by the disease. They might choose to use some logotherapeutic, meaning- based, or cognitive reframing interventions to f a c i l i t a t e the restoration of a sense of order and purpose a f t e r the onset of RA. Russell (1991) points to the importance of narrative i n cognitive therapy. He espouses the 8 narrative paradigm that assumes that to e x i s t as a human being i s to perceive one's l i f e as a story l a t e r to be t o l d . I f a c l i e n t has a defective or dysfunctional view of his or her r e l a t i o n to the world, the task of the cognitive therapist i s to a s s i s t the c l i e n t to construct a new and more functional personal narrative. This new personal narrative competes with, and eventually subsumes, the old personal narrative. Reminiscence, or l i f e review, i s gaining r e s p e c t a b i l i t y as a therapeutic method. Haight (1991) reviewed the l i t e r a t u r e on therapeutic reminiscence from 1960-1990 and found that of 97 published a r t i c l e s , only 7 reported negative outcomes; the remainder were either p o s i t i v e or non-evaluative. Poulton and Strassberg (1986) l i s t the adaptive consequences of reminiscence as the resolution of previously-unresolved c o n f l i c t s , the maintenance of goal-directed behavior, and the maintenance of feelings of self-esteem and personal s i g n i f i c a n c e . The s t o r i e s contained within my study may be of value to the psychotherapist, not only because of the i n s i g h t they might impart with respect to the e x i s t e n t i a l issues that face RA patients, but also 9 because they w i l l allow him or her to witness the struggle toward wholeness embedded i n the narrative, and the ways i n which the narrative functions as a symbolic f i e l d i n which to enact and resolve t h i s struggle. Personal Perspectives I have had RA for 25 years, and i n that time I have spent several lengthy periods i n ho s p i t a l , including one period of almost two years when I was an adolescent. During these h o s p i t a l i z a t i o n s , I met hundreds of other people with RA, many of whom were hosp i t a l roommates, and I r e c a l l many a night l y i n g i n bed and t a l k i n g to people, i n the dark, about the struggle to come to terms with the disease. I l l n e s s does not respect c u l t u r a l , ethnic, or socioeconomic differences i n people, and the education I received i n hospital f a r surpassed anything I might have learned i n junior high school. I was fascinated to explore with people the various b e l i e f systems from which they operated, each one grappling with the same task of making sense of a seemingly senseless a f f l i c t i o n , and each doing so i n his or her own way. I was also witness to the problems that arose when 10 patients' b e l i e f systems were incongruous with those of medical personnel. Research shows that the functional capacity of RA patients often has l i t t l e to do with the severity of t h e i r disease. My own observations support t h i s empirical finding. I t has always seemed to me that one's philosophical outlook has a great e f f e c t on how well people deal with t h e i r i l l n e s s . This study i s an outgrowth of years of informal observation. 11 Chapter I I : Literature Review The l a s t few decades have seen a barrage of research studies that deal with psychosocial aspects of rheumatoid a r t h r i t i s (RA). These studies have looked at the physical, s o c i a l , and psychological factors associated with coping and with adjustment i n RA patients. The trend i n t h i s research has been toward focused quantitative inquiry, and away from h o l i s t i c examination of the experience of RA. Although there have been numerous studies that have examined the e x i s t e n t i a l questions, the "why me?" of i l l n e s s , that a r i s e for people with health problems such as spinal cord injury and cancer (e.g., Bulman & Wortman, 1977; Gotay, 1985; Timko & Janoff-Bulman, 1985), there i s very l i t t l e research that focuses on these questions as dealt with by RA patients. The search f o r meaning often provoked by a d i s a b l i n g injury or i l l n e s s i s a two-pronged search. F i r s t , one must adjust one's perceptions of the event, or of the world and how i t operates so that a sense of order i s restored. Second, one must reexamine and modify one's l i f e goals i n order to achieve a sense of purpose (Thompson & Janigian, 1988). 12 Exis t i n g research i n the areas of coping with RA, causal a t t r i b u t i o n s for i l l n e s s and injury, and the search for meaning i s reviewed here. Coping with Rheumatoid A r t h r i t i s RA i s a disease characterized by damage to the j o i n t s ; the severity of the damage and i t s consequent d i s a b i l i t y varies widely between i n d i v i d u a l s . Many researchers have noted that, for many patients, the severity of the physical damage bears l i t t l e r e l a t i o n s h i p to functional impairment (Genest, 1983; Moos & Solomon, 1964; Moscovitz, 1971), where functional impairment i s defined broadly as disruption i n the capacity to function i n a l l aspects of d a i l y l i f e , i n work, family and s o c i a l r o l e s , and i n one's sense of emotional well-being (Genest, 1983). This finding has prompted a search f o r the psychological variables that mediate between physical impairment and functional capacity. Many investigators have considered the ways i n which patients cope a c r i t i c a l determinant of functional status, noting that some ways of coping are adaptive, and others maladaptive (Smith & Wallston, 1992). 13 Over the l a s t several years, numerous studies have investigated the relationships between coping antecedents ( i . e . , patients' appraisals of t h e i r s ituations as determined by functional status, and by b e l i e f s regarding a b i l i t i e s and in t e r n a l and external resources), and the employment of p a r t i c u l a r coping strategies such as d i s t r a c t i o n , information-seeking, self-blame, and downward comparison (Zautra & Manne, 1992). Other studies have looked at the relationships between coping strategies and various outcome measures such as health status, psychological adjustment, and severity of pain (Zautra & Manne, 1992). Recently, i n an e f f o r t to integrate the findings of previous studies, Smith and Wallston (1992) conducted a longitudinal study that sought to incorporate coping antecedents, coping strategies, and outcome measures into the stress and coping framework proposed by Lazarus and Folkman (1984). In doing so, they considered the contribution of factors from the physical, psychological, and s o c i a l domains to coping, and ultimately to well-being, i n RA patients. The work of Smith and Wallston (1992) i s a f i r s t step i n establishing causal d i r e c t i o n i n data that 14 previous research has shown to be correlated. However, despite the large number of subjects, the eight waves of data c o l l e c t i o n over a four-year period, and the complex s t a t i s t i c a l analyses, t h i s study has some shortcomings. Several of the measures used by the investigators give only s u p e r f i c i a l consideration to very complex variables. For example, the investigators used a 7-item measure, apparently of t h e i r own construction, to gather data about psychosocial impairment; t h i s measure asked RA patients to assess the degree to which RA had i n t e r f e r e d i n each of seven areas: family relationships, hobbies and sports, sexual a c t i v i t i e s , sleeping, s o c i a l a c t i v i t i e s , working, and comforting and helping others. The complexity and d i v e r s i t y of these areas can hardly be addressed adequately by a measure such as the one used i n t h i s study. The researchers report the i n t e r n a l consistency of the measure i n order to substantiate i t s psychometric properties, but they do not provide support for i t s v a l i d i t y . Another weakness i n the study i s i t s narrow focus on pain i n the coping measure. Smith and Wallston (1992) ask t h e i r readers to believe that the way RA 15 patients cope s p e c i f i c a l l y with t h e i r pain mediates between several coping antecedents only i n d i r e c t l y r elated to pain (e.g., l i f e s a t i s f a c t i o n and depressive symptomotology) and health outcomes. My strongest reservation about t h i s study, however, l i e s i n the f a c t that, as a member of the population to which the findings are intended to apply, I f e e l that the study i s so abstracted from the experience of RA patients, so absorbed i n i t s own manipulations of data and complicated path analyses, that i t actually says very l i t t l e about the l i v e s of the people i t has set out to understand. This study has convinced me of the need to retreat from the path of increasingly complex quantitative research on RA patients. In addition to my reservations about the methodological directions research on RA patients has taken, I have noticed an omission i n the l i t e r a t u r e . To date there i s v i r t u a l l y no research that examines the influence of the philosophical b e l i e f s of RA patients on coping and on adjustment. Researchers have large l y ignored the "noological dimension", as Viktor Frankl (1969) c a l l s i t , the active search for meaning 16 that people tend to engage i n when confronted with serious i l l n e s s and d i s a b i l i t y (Janoff-Bulman & Timko, 1985; Kleinman, 1988; Wong & Weiner, 1981). Causal Attributions for I l l n e s s and D i s a b i l i t y One aspect of the search for meaning involves the conclusions patients reach to the question "why me?", the problem of bafflement (Kleinman, 1988), or, to use the language of psychology, the causal a t t r i b u t i o n s people make i n order to explain why they have been injured or a f f l i c t e d with disease. Af f l e c k , P f e i f f e r , Tennen, and F i f i e l d (1987) dealt somewhat s u p e r f i c i a l l y with RA patients' philosophical b e l i e f s about the cause of t h e i r i l l n e s s i n a larger study of patients' e t i o l o g i c a l theories. They posed the question, "Some people who become seriously i l l say they have asked the question *Why me?'. Others say they have never asked themselves t h i s question. Did you ever f i n d yourself asking *Why am I the one to have t h i s condition instead of someone else?'. I f so, do you s t i l l f i n d yourself asking t h i s question or have you found an answer to i t ? " (p. 928- 929). Responses to t h i s question were assigned to categories such as "Fate", "Purpose for the i l l n e s s " , 17 "Never asked xWhy me?", and " S t i l l ask and no answer". The researchers o f f e r l i t t l e discussion or elaboration on these categories, except to say that patients who continue to search for a causal explanation report greater functional problems, and greater helplessness, and are rated by health care providers as e x h i b i t i n g less p o s i t i v e psychosocial adjustment. There have been a number of studies of causal a t t r i b u t i o n s that have used samples drawn from other patient populations. For example, researchers have looked at the a t t r i b u t i o n s of people who have suffered spinal cord i n j u r i e s . Bulman and Wortman (1977) conducted extensive interviews with 29 spinal cord patients, chosen for the study because chance seemed to define the s e l e c t i v e incidence of t h e i r i n j u r i e s , and found that a l l of t h e i r respondents had posed the question "why me?". Further, they found that 28 of the 29 had developed s p e c i f i c hypotheses to explain why t h e i r accidents had happened to them. Thematic analysis yielded s i x categories of explanations: p r o b a b i l i t y , chance, fate, divine plan, p o s i t i v e r e i n t e r p r e t a t i o n , and deservedness. When the researchers compared the causal explanations offered by 18 the respondents with coping scores, they found that cer t a i n a t t r i b u t i o n s were predictive of poor coping whereas other a t t r i b u t i o n s were predictive of good coping. A major l i m i t a t i o n of t h i s study i s to be found i n the coping measure. For each respondent, a nurse and a s o c i a l worker f a m i l i a r with the case marked a 16-point scale with endpoints of "coped very poorly" and "coped extremely well". When the researchers were asked by raters what was meant by "coped", the researchers provided suggestions offered by other raters. As i s true i n so much of the l i t e r a t u r e , the word "coped" i s used without an operational d e f i n i t i o n ; here i t seems to be synonymous with "accepted", "adapted", or "adjusted", i n themselves vague terms. Bulman and Wortman's (1977) study lends support to the Just World Hypothesis proposed by Lerner (1980). This hypothesis i s based on the notion that the world i s a just place, that people get what they deserve and deserve what they get. Lerner remarks, "people want to and have to believe they l i v e i n a just world so that they can go about t h e i r d a i l y l i v e s with a sense of 19 t r u s t , hope and confidence i n the future" (Lerner, 1980, p. 14). Most of the respondents i n the Bulman and Wortman (1977) study developed hypotheses consistent with Just World views. Seven respondents suggested predetermination as an explanation for t h e i r d i s a b i l i t i e s : "these things are always planned before your time by a Supreme Power" (Bulman & Wortman, p. 359). In more fully-developed hypotheses, 10 people explained that God must have had a reason to allow or to cause the accidents. Although God's design might not be r e a d i l y apparent, surely there are benefits to be derived. For example, one i n d i v i d u a l responded, " i t ' s a learning experience; I see God's t r y i n g to put me i n si t u a t i o n s , help me learn about Him and myself and also how I can help other people" (Bulman & Wortman, p. 358). Six respondents reevaluated t h e i r circumstances as p o s i t i v e , stressing that the benefits of t h e i r new situations outweighed the negative consequences: Since the accident, I've learned an awful l o t about myself and other people. You meet d i f f e r e n t people i n a hard-up s i t u a t i o n that I never would have met. I was leading a sheltered l i f e , I suppose, compared to what i t i s now. Now I'm just 20 i n a s i t u a t i o n which I enjoy (Bulman & Wortman, 1977, p. 359). These individuals were able to hold on to both t h e i r self-esteem and t h e i r Just World views by reconstruing what might appear t r a g i c to others as p o s i t i v e . Two respondents explained t h e i r fates i n terms of deservedness. These people r e c a l l e d t h e i r past behaviors and believed that t h e i r accidents were f a i r and l o g i c a l outcomes of t h e i r own wrongdoing: " i f you do wrong, you reap what you sow" (Bulman & Wortman, 1977, p. 360). Four of the respondents attributed t h e i r accidents to p r o b a b i l i t y , and three others s o l e l y to chance, and these a t t r i b u t i o n s would seems to contradict the Just World Hypothesis. But as Thompson and Janigian (1988) remark: On the surface i t may appear that orderliness i s diametrically opposed to chance or p r o b a b i l i t y . However, a b e l i e f that s p e c i f i c events happen according to chance does not mean that there i s not an underlying order to the world. One might engage i n a c e r t a i n action with the understanding that there i s a high r i s k of injury. A resultant accident would follow orderly from the b e l i e f that c e r t a i n actions are more r i s k y than others and that one "takes one's chances" by engaging i n them (p. 263). 21 Numerous studies c i t e d by Lerner (1980) indicate that, when misfortune s t r i k e s , people tend to engage i n self-blame to an extent that f a r exceeds t h e i r own objective blameworthiness. This observation holds true i n the Bulman and Wortman (1977) study, and, consistent with other studies c i t e d by Lerner, respondents who engaged i n self-blame were better adjusted than those who blamed others. Bulman and Wortman speculate that perhaps j u s t i c e and control issues might explain these findings. That i s , patients who blamed themselves for t h e i r i n j u r i e s were able to see them as f a i r and l o g i c a l outcomes to t h e i r actions, whereas those who blamed others were unable to place t h e i r i n j u r i e s i n the context of a just and orderly world. The work of Bulman and Wortman (1977) i l l u s t r a t e s several points related to the Just World Hypothesis. F i r s t , i t shows the extraordinary need people have to see the world as orderly, and to see catastrophic events as predictable. Second, i t demonstrates the need we have to imbue the events of our l i v e s with meaning. F i n a l l y , i t shows the many ways i n which 22 people c o g n i t i v e l y reconstruct events so as to a l i g n them with Just World views. Researchers who have attempted to r e p l i c a t e the work of Bulman and Wortman (1977) have tended to focus primarily on the psychological dimension, rather than the noological dimension. For example, Sholomskas and S t e i l (1990) divided t h e i r respondents into two groups, those who engaged i n self-blame, and those who engaged i n other-blame. In doing so, they stayed within the arena of in t e r n a l and external locus of control, a d i s t i n c t l y psychological domain that has already been addressed i n the a r t h r i t i s l i t e r a t u r e (Zautra & Manne, 1992). Gotay (1985) asked 31 cancer patients, and 20 of t h e i r mates, to address the problem of bafflement, and attempted to determine whether certa i n types of causal a t t r i b u t i o n s were predictive of adjustment. Two methods were used to c o l l e c t data on causal a t t r i b u t i o n s . F i r s t , cancer patients and t h e i r mates were asked the open-ended question, "with respect to your health problem, have you ever asked the question *why me?' How did you answer i t ? " . Responses were content-analyzed and coded according to the 23 c l a s s i f i c a t i o n scheme developed by Bulman and Wortman (1977). Second, respondents were given a structured questionnaire that read "I'd l i k e to know how much you blame each of the following factors for your health problem. Please assign a percentage of blame for each factor. If a given factor has no influence, you may assign i t a zero". The four factors from which respondents could choose were "Yourself - the kind of person you are", "Things you have done", "The environment and other people", and "Chance". When Gotay examined the data e l i c i t e d by these two methods, she found considerable discrepancy. Although some respondents were unable to answer the open-ended question posed i n the interview, none were unable to complete the questionnaire. However, the questionnaire's format precluded c e r t a i n types of responses and the investigator found i t necessary to supplement i t with additional measures, such as a measure of r e l i g i o s i t y . Indeed, one of the more in t e r e s t i n g findings of t h i s study i s that the kind of causal question asked greatly a f f e c t s the answers obtained. 24 Gotay's (1985) study makes other important contributions as well. Jaber, Steinhardt, and T r i l l i n g (1991) remark that the family i s the most important s o c i o c u l t u r a l context i n which meanings and values are learned (and, I would argue, constructed), and t h i s study, by including cancer patient's mates, acknowledges the role of s i g n i f i c a n t others i n the construction of meaning. In addition, Gotay compared the a t t r i b u t i o n s of early-stage cancer patients ( i . e . , patients with pre- cancerous conditions, as well as those whose colposcopy indicated that further treatment was necessary) and t h e i r mates, and the a t t r i b u t i o n s of advanced-stage cancer patients ( i . e . , patients with Stage III or Stage IV gynecological or breast cancer) and t h e i r mates. Attributions to the s e l f or to the patient showed a main e f f e c t for stage, such that advanced-stage patients were more l i k e l y to say that the i n d i v i d u a l herself bore some r e s p o n s i b i l i t y for the development of the cancer. Advanced-stage patients were also more l i k e l y to c i t e religiously-based reasons. By comparing the a t t r i b u t i o n s of these two groups, Gotay suggests 25 the p o s s i b i l i t y that a t t r i b u t i o n s change over the course of an i l l n e s s . Timko and Janoff-Bulman (1985) studied breast cancer patients i n an e f f o r t to understand the relationships between causal a t t r i b u t i o n s , perceived v u l n e r a b i l i t y to cancer recurrence, and adjustment. Respondents were asked to indicate the extent to which they thought other people, the environment, and chance were responsible for the development of t h e i r cancer. They were also asked to indicate the extent to which they thought they had developed cancer because of the kind of people they were ph y s i c a l l y , because of the kinds of personality they had, and because of t h e i r past behaviors. In addition, respondents answered questions about t h e i r perceived v u l n e r a b i l i t y to the occurrence and recurrence of cancer. The r e s u l t s of t h i s study indicate that there i s not a d i r e c t l i n k between causal a t t r i b u t i o n s and adjustment; rather the attribution-adjustment r e l a t i o n s h i p i s mediated by perceived i n v u l n e r a b i l i t y and i t s associated cognitions. For example, respondents who pointed to past behaviors as causal i n t h e i r cancer were better adjusted than respondents who 2 6 attributed t h e i r cancer to characterological flaws, or to others. Whereas behaviors are con t r o l l a b l e and modifiable, one's character and the c h a r a c t e r i s t i c s of others (e.g., the genes of r e l a t i v e s who have passed along v u l n e r a b i l i t y to cancer) are r e l a t i v e l y stable and uncontrollable. Like the Bulman and Wortman (1977) study, t h i s study lends support to the idea that people who are able to frame t h e i r i l l n e s s as the l o g i c a l outcome of a modifiable behavior tend to be better adjusted. A study of I s r a e l i breast cancer patients by Baider and S a r e l l (1983) highlights the e f f e c t of culture on the kinds of at t r i b u t i o n s patients make. ^Oriental' women (Jews born i n the predominantly Moslem cultures of North A f r i c a and the Middle East) were l i k e l y to see t h e i r disease as caused by themselves or others, or as a punishment, whereas xWestern' women (Jews born i n Europe or the Americas) tended to explain t h e i r i l l n e s s i n terms of d i v i n i t y , fate, or chance. The ways i n which these two groups coped d i f f e r e d as well. The investigators l a b e l l e d the c h a r a c t e r i s t i c modes of coping of the *Western' group % r a t i o n a l - s c i e n t i f i c ' ( i . e . , active, s e l f - r e l i a n t ) , and the 27 x O r i e n t a l ' group *non-rational, magical' ( i . e . , passive, f a t a l i s t i c ) . However, the investigators did not draw e x p l i c i t connections between the causal at t r i b u t i o n s of t h e i r respondents, and the ways i n which respondents coped. Jenkins and Pargament (1988) studied the cognitive appraisals of cancer patients and t h e i r r e s u l t s were consistent with the findings of others (e.g., Timko & Janoff-Bulman, 1985) who showed that people seek to gain a sense of personal control over threatening events, and that higher l e v e l s of perceived personal control promote more favorable adjustment. They made some other i n t e r e s t i n g findings as well. For example, they found that "perceived control over emotional reactions seems to be a useful predictor of psychosocial competence, d i s t i n c t from perceived control over the events themselves" (Jenkins & Pargament, 1988, p. 626). This finding i s reminiscent of Frankl's (1969) assertion that, although we can not always control the events around us, we are free to choose the stance we take with respect to misfortune. The design of t h i s study was such that respondents were able to elaborate on t h e i r b e l i e f s regarding God- 28 c o n t r o l . Their remarks tended to describe an active process of exchange with God, rather than a passive submission to an external force. Respondents often expressed the b e l i e f that God worked through t h e i r own e f f o r t s , and through the e f f o r t s of t h e i r physicians. They also spoke of prayer and f a i t h as means of accessing control from God. Thus, some respondents, saw God not as an impersonal external force, but as a being with whom one could i n t e r a c t , a collaborator. The subject of r e l i g i o u s a t t r i b u t i o n s and r e l i g i o u s coping e f f o r t s i s extremely complex (Pargament et a l . , 1990), and few studies i n the area of i l l n e s s and causal a t t r i b u t i o n s give more than s u p e r f i c i a l treatment to i t . I l l n e s s Narratives and Causal Attributions Causal a t t r i b u t i o n s are dealt with i n c i d e n t a l l y i n a study of the autobiographies of people with multiple s c l e r o s i s (Robinson, 1990). Respondents i n t h i s study were asked to write t h e i r " l i f e s t o r i e s , including anything i n t h e i r l i v e s — e v e n t s , experiences or f e e l i n g s — w h i c h was important to them" (Robinson, 1990, p. 1177). The investigator d e l i b e r a t e l y refrained from t e l l i n g respondents what to write about, how to write, 29 or how much to write. The narratives were then analyzed and assigned the labels of progressive, regressive, or stable narratives according to the emotional t r a j e c t o r i e s of the s t o r i e s . Robinson c a l l s a subset of the progressive narratives xdetective s t o r i e s ' because they are e s s e n t i a l l y concerned with the mystery "why me?" and the immediately following question "what can I do about i t ? " . Some of these detective s t o r i e s are accounts of searches for medical explanations and treatments, but others are centred on the intervention of the supernatural. "The narrative may embrace the intervention of a malevolent supernatural force which i s being engaged i n a personal struggle... [or] may embrace the discovery of po s i t i v e divine intervention, i n which God may not only prove to be an a l l y a f t e r the onset of the disease, but i n some cases be perceived as o f f e r i n g salvation" (Robinson, 1990, p. 1181). Because t h i s study i s based on narrative accounts, we are able to see the range and the nuances of responses that might otherwise be grouped under a single heading such as "God-control". Williams (1984) undertook a study of 30 a r t h r i t i s patients, both men and women, i n which he conducted 30 lengthy interviews that began with the question "why do you think you got a r t h r i t i s ? " . Most of the narratives written by the investigator are lay accounts of the etiology of a r t h r i t i s . One respondent, f o r example, hypothesized that h i s a r t h r i t i s resulted from exposure to t o x i c substances i n the factory i n which he worked; another respondent f e l t that the stress of her family l i f e had caused her a r t h r i t i s . Williams e n t i t l e d the former respondent's story "narrative reconstruction as p o l i t i c a l c r i t i c i s m " , and the l a t t e r respondent's story "narrative reconstruction as s o c i a l psychology"; his tendency i s to take a s o c i o l o g i c a l perspective with respect to his respondents' s t o r i e s . He seems somewhat frustrated as he recounts the story of one respondent who believes that her a r t h r i t i s was preordained by God; he f e e l s that she has transcended causality, and thus gendered the narrative quest f o r ca u s a l i t y unnecessary. Williams' (1984) decision to present his data i n narrative form allowed him to preserve the r i c h d e t a i l provided him by his respondents. He states i n the introduction to his study his desire to "elucidate the sty l e s of thought and modes of cognitive organization employed by... people s u f f e r i n g from RA i n making sense 31 of the a r r i v a l of chronic i l l n e s s i n t h e i r l i v e s " (Williams, 1984, p. 176). So rather than d i s t i l l i n g the explanations of his respondents into the discrete, investigator-defined categories they seemed to f i t best, Williams traced the routes respondents took i n a r r i v i n g at t h e i r causal conclusions. Williams (1984) regards accounts of the o r i g i n s of i l l n e s s as attempts to e s t a b l i s h "points of reference between body, s e l f , and society and to reconstruct a sense of order from the fragmentation produced by chronic i l l n e s s " (Williams, 1984, p. 177). Thus, the creation of the i l l n e s s story i s an act of meaning- making, of restoring oneself to wholeness and balance, of reckoning with a body that has betrayed the s e l f and a society that reassigns i d e n t i t y according to the status of one's health. The story represents an imaginative reconstruction of the past whose purpose i s to lend meaning to the present. My study i s s i m i l a r to Williams' (1984) study i n i t s respondents, i n i t s consideration of the s o c i a l and c u l t u r a l forces that shape causal a t t r i b u t i o n s , and i n i t s presentation of data i n narrative form. However, my study allows for multi-factor causal theories, and 32 embraces the philosophical notions of the co- investigators. Williams' study might be c a l l e d hermeneutical because i t i s heavily i n t e r p r e t i v e ; the author extrapolates from the raw data provided by respondents to construct s o c i o l o g i c a l arguments. In presenting my respondents' s t o r i e s , I have t r i e d to be less i n t e r p r e t i v e . L i f e Schemes and the Search f o r Meaning Thompson and Janigian (1988) r e f e r to the kind of story t o l d by Williams' (1984) respondents as a l i f e scheme. A l i f e scheme has several elements; f i r s t , i t s protagonist i s the s e l f as seen from one's own perspective; second, i t reveals a p a r t i c u l a r world view, that i s , a set of b e l i e f s and assumptions about the world and how i t operates; t h i r d , i t says something about the goals of the protagonist, whether they be s p e c i f i c and measurable, such as the attainment of a ce r t a i n job, or loose and i l l - d e f i n e d , such as the betterment of oneself; f i n a l l y , i t recounts events relevant to the attainment of these goals, including events that render impossible the achievement of desired goals, events that necessitate goal- 33 modification, and events that f a c i l i t a t e goal- attainment. L i f e schemes can be accounts of the search for meaning. xFound meaning' (as opposed to i m p l i c i t meaning, the product of the appraisal process that occurs when one i s faced with a p o t e n t i a l l y s t r e s s f u l situation) has, according to Thompson and Janigian (1988), two components: a sense of order and a sense of purpose. A person with a sense of order believes that he or she l i v e s i n an orderly world governed by rules, laws, or p r i n c i p l e s . Meaningful events are those that follow from or f i t within t h i s order, and seem to have some purpose or reason for being. The l i f e scheme integrates these two aspects of found meaning; order i s provided by stable world and s e l f views, and purpose by goals and by the p o s s i b i l i t y of t h e i r attainment. The search f o r meaning occurs when one's l i f e scheme no longer provides a sense of order, or a sense of purpose, or both. The advent of a disa b l i n g i l l n e s s such as RA may challenge the components of the l i f e scheme, casting doubt on the accuracy of one's world views, for example, or causing one to rethink one's goals and reevaluate the 34 p o s s i b i l i t y of t h e i r attainment. The search for meaning i s an attempt to restore the sense that one's l i f e i s orderly and purposeful. A t t r i b u t i o n a l questions often a r i s e as part of the challenge to the l i f e scheme posed by RA. I f , as Lerner (1980) asserts, people want to believe that the world i s so ordered that people get what they deserve and deserve what they get, then one might expect RA patients to view t h e i r i l l n e s s as punishment for past wrongs. Yet numerous investigators (e.g., Bulman & Wortman, 1977; Robinson, 1990; Schussler, 1992) have found that r e l a t i v e l y few patients see t h e i r i l l n e s s as punishment; contrary to expectations, a large proportion of patients see t h e i r i l l n e s s i n a p o s i t i v e l i g h t . Schussler (1992), for example, found that 60% of the 50 RA patients he studied viewed t h e i r i l l n e s s as a challenge, whereas only 10% viewed i t as a punishment. A negative event such as the onset of a di s a b l i n g i l l n e s s i s l i k e l y to pose a challenge to world and s e l f views. The sick person then has two choices: he or she may either change the l i f e scheme, or change perceptions of the event. Piaget (cited i n Solso, 35 1988) might have used the terms *accommodation' and x a s s i m i l a t i o n ' to describe these two adaptational processes. By questioning people about t h e i r causal a t t r i b u t i o n s for t h e i r i l l n e s s , one might get a sense of which of these two processes has been chosen, and of the cognitive journey taken i n the reordering of one's world view, or the reconstruing of the event of i l l n e s s . Causal a t t r i b u t i o n s encompass the larger question of why people s u f f e r , as well as the more s p e c i f i c question of why a p a r t i c u l a r i n d i v i d u a l s u f f e r s ; they provide the researcher, therefore, a glimpse of the world views of h i s or her respondents, a perspective from which to view the struggle towards the reestablishment of a sense of order. The other component of found meaning i s , as mentioned, a sense of purpose. The means by which one achieves a sense of purpose, the goals to which one aspires, may be profoundly affected by a disabling condition, whether by physical d i f f i c u l t y or i m p o s s i b i l i t y , or by a reordering of one's p r i o r i t i e s . The rethinking and the possible modification of one's goals often demanded by RA i s one aspect of coping. 36 For example, one may respond to RA by abandoning one's goals, regarding goal-setting as pointless i n the face of the unpredictable and sometimes unrelenting course of RA; conversely, one might f e e l inspired to d i r e c t one's work i n a p a r t i c u l a r way because of t h e i r experience of RA; a further p o s s i b i l i t y i s the abandonment of action-oriented goals i n favour of a bettering of the inner s e l f . Assumptions In embarking on t h i s study, I assumed that the findings with respect to causal a t t r i b u t i o n s i n the spinal cord injury and cancer l i t e r a t u r e do not generalize to the a r t h r i t i s patient population. Several facts support t h i s assumption. F i r s t , the demographics of the populations are d i f f e r e n t . For example, patients with spinal cord i n j u r i e s tend to be young and male, whereas a r t h r i t i s patients tend to be older and female. The samples from which the data on spinal cord patients are derived are comprised of a r e l a t i v e l y large proportion of Black and Hispanic i n d i v i d u a l s ; the prevalence of RA amongst F i r s t Nations indiv i d u a l s i s l i k e l y to be r e f l e c t e d i n a sample of RA patients. Second, the nature of the d i s a b i l i t i e s or 37 i l l n e s s e s d i f f e r . Spinal cord injury i s sudden and the patient's functional capacity remains r e l a t i v e l y s t a t i c . The course of a r t h r i t i s , l i k e the course of cancer, can be unpredictable, with a general decline i n functional capacity over time. RA d i f f e r s from cancer i n many ways, not the l e a s t of which i s the f a c t that i t i s r a r e l y f a t a l . Third, the degree to which d i f f e r e n t patient populations can make external a t t r i b u t i o n s varies. Because the cause of spinal cord injury i s to be found i n the environment, the spinal cord patient i s afforded the opportunity to construct plausible external a t t r i b u t i o n s . Although cancer patients are not able to make such d i r e c t external a t t r i b u t i o n s , they may be able to point to environmental contributors to t h e i r disease. A r t h r i t i s , with i t s unknown etiology (Berkow, 1987), affords no such opportunities. Summary Aside from the fact that findings about the causal a t t r i b u t i o n s of other patient populations might not apply to RA patients, none of the studies c i t e d gives consideration to the development of causal hypotheses over time, and none, except Gotay (1985), take into 38 account the influence of the family and s o c i a l environments on the formation of these hypotheses. Further, none of these studies looks at the ways i n which causal a t t r i b u t i o n s might be associated with a p a r t i c u l a r kind of coping, that of achieving a sense of purpose. This study endeavours to extend the findings of previous studies by addressing these d e f i c i e n c i e s . 39 Chapter I I I : Methodology This study takes a q u a l i t a t i v e approach to understanding causal a t t r i b u t i o n s , and i s based on i n - depth, open-ended interviews. The decision to take t h i s approach r e f l e c t e d my desire to gain a broad understanding of the causal a t t r i b u t i o n s of RA patients rather than t e s t a s p e c i f i c hypothesis (Hammersley & Atkinson, 1983), and my own b e l i e f that the meanings constructed by indiv i d u a l s are best understood when the context from which these meanings arose are explored and preserved. The respondents' data are presented i n narrative form, as a l i f e scheme, to use the term employed by Thompson and Janigian (1988). Rationale This method was chosen f o r several reasons. F i r s t , although there are standardized instruments available to measure a t t r i b u t i o n s i n the psychological realm, a t t r i b u t i o n s related to concepts such as locus of control (e.g., Multidimensional Health Locus of Control) and helplessness (e.g., A r t h r i t i s Helplessness Inventory), no such instruments e x i s t to measure at t r i b u t i o n s i n the noological realm, i . e . , philosophical constructions that indi v i d u a l s use to 40 explain c a u s a l i t y . In any case, i t i s questionable whether any standardized instrument would be adequate or appropriate for understanding the experience of chronic i l l n e s s . Kleinman (1988) makes a case f o r the inadequacy of t r a d i t i o n a l quantitative research i n t h i s area; he states: the thinned-out image of patients and families that... must emerge from such research i s s c i e n t i f i c a l l y r e p l i c a b l e but o n t o l o g i c a l l y i n v a l i d ; i t has s t a t i s t i c a l , not epistomological, s i g n i f i c a n c e ; i t i s a dangerous d i s t o r t i o n . . . to evaluate s u f f e r i n g requires more than the addition of a few questions to a s e l f - r e p o r t form or a standardized interview; i t can only emerge from an e n t i r e l y d i f f e r e n t way of obtaining v a l i d information from i l l n e s s narratives. Ethnography, biography, history, psychotherapy—these are the appropriate research methods to create knowledge about the personal world of s u f f e r i n g . These methods enable us to grasp, behind the simple sounds of bodily pain and p s y c h i a t r i c symptoms, the complex inner language of hurt, desperation, and moral pain (and also triumph) of l i v i n g an i l l n e s s (pp. 28-29) Second, the type of a t t r i b u t i o n s that I sought to discover were below the l e v e l of conscious awareness for some, or had never been p u b l i c a l l y expressed by others; the interviews allowed co-investigators to bring into consciousness t h e i r modes of thinking and to express verbally ideas that seldom enter everyday conversation. Third, the nature of the subject matter 41 i s such that some people had d i f f i c u l t y i n understanding what I was looking f o r ( p a r t i c u l a r l y as they were so accustomed to giving accounts that were purely medical as opposed to e x p e r i e n t i a l ) , or found i t d i f f i c u l t to a r t i c u l a t e t h e i r b e l i e f s ; the language I used therefore had to be appropriate to the understanding of each co-investigator, and I had to continually probe and c l a r i f y to ensure that I understood accurately what the co-investigators were t e l l i n g me. Indeed, many of the co-investigators i n t h i s study were quick to give t h e i r consent to pa r t i c i p a t e , believing that they would simply be required to repeat o f t - t o l d chronologies of medical events. F i n a l l y , as mentioned, t h i s study does not focus narrowly on causal a t t r i b u t i o n s and the seeking of a sense of purpose at a single point i n time, and i n i s o l a t i o n from the context that gave r i s e to them; rather i t traces the thought processes of the co- investigators, as they developed t h e i r causal hypotheses and t h e i r l i f e goals over time, noting the s o c i a l and c u l t u r a l forces that shaped them. 42 Kleinman (1988) emphasizes the value of the l i f e scheme, both f o r the patient and f o r the c l i n i c i a n . He re f e r s to the sick i n d i v i d u a l ' s personal myth, a story that gives shape to an i l l n e s s so as to distance an otherwise fearsome r e a l i t y . The c l i n i c i a n attends to the patient's and the family's summation of l i f e ' s t r i a l s . Their narrative highlights core l i f e themes—for example, i n j u s t i c e , courage, personal v i c t o r y against the o d d s — f o r whose prosecution the d e t a i l s of i l l n e s s supply evidence. Thus, patients order t h e i r experience of i l l n e s s — w h a t i t means to them and to s i g n i f i c a n t o t h e r s — a s personal narratives. The i l l n e s s narrative i s a story the patient t e l l s , and s i g n i f i c a n t others r e t e l l , to give coherence to the d i s t i n c t i v e events and long-term course of s u f f e r i n g . The p l o t l i n e s , core metaphors, and r h e t o r i c a l devices that structure the i l l n e s s narrative are drawn from c u l t u r a l and personal models for arranging experiences i n meaningful ways and for e f f e c t i v e l y communicating those meanings. Over the long course of chronic disorder, these model texts shape and even create experience, (p. 49). Thus, the story i t s e l f i s the meaning unit. To extract a t t r i b u t i o n s or coping strategies from the story, wrenching them from the context i n which patients so c a r e f u l l y place them, i s to collapse the structures that support t h e i r meaning. The s t o r i e s that were t o l d to me by my co-investigators i l l u s t r a t e that meaning-making i s a process f a process that can be understood through a narrative. 43 Co-investigators Research participants were s o l i c i t e d from the i n - patient a r t h r i t i s service of Pearson Hospital, Vancouver, B r i t i s h Columbia. This hospital i s the p r o v i n c i a l r e f e r r a l centre to which people with severe d i s a b i l i t i e s are sent for s p e c i a l i z e d care. My decision to interview only hospital inpatients was based on several factors. F i r s t , because t h e i r a r t h r i t i s was severe enough to warrant h o s p i t a l i z a t i o n , I believed that my co-investigators would be more motivated to search for causal explanations than would people whose a r t h r i t i s was a minor inconvenience. Secondly, my own experience suggested that people's i n c l i n a t i o n to engage i n a causal search i s heightened i n the hospital environment where attention i s focused so intensely on the disease, and where people are witness to so much su f f e r i n g . Third, the hospital atmosphere was conducive to the kind of thoughtful r e f l e c t i o n that I t r i e d to encourage. The women I interviewed were free from the demands and d i s t r a c t i o n s of t h e i r homes, and had the privacy that allowed them to speak f r e e l y ; t h i s point was reinforced f o r me when 44 I talked to them by telephone a f t e r they had returned home. The advantages of interviewing only hospital patients could have been outweighed by the disadvantage of not being able to get the kind of demographic d i v e r s i t y I wanted. For t h i s reason I i n i t i a l l y arranged f o r permission to s o l i c i t research participants from the A r t h r i t i s Society support group population as well. Fortunately, t h i s problem did not a r i s e . I chose to interview 12 i n d i v i d u a l s , based on the f a c t that other research i n the department of Counselling Psychology with a s i m i l a r design has found t h i s sample siz e useful for i l l u s t r a t i n g both the d i v e r s i t y and the commonalties i n respondents' s t o r i e s (e.g., Marshall, 1993; Swain, 1990). I interviewed my co-investigators i n the evening so that they would not be d i s t r a c t e d by the necessity of meeting appointment times or having to attend t h e i r medical programs. I approached the charge nurses, a l l of whom were f a m i l i a r with my study, and asked them to suggest patients who met a l l of the c r i t e r i a for my study, and who might be w i l l i n g to be interviewed. The 45 nurse would go alone to the patient's room, and explain who I was and what I was doing. I was then formally introduced to prospective co-investigators by the nurse. Only one person who was approached, an el d e r l y Asian woman, declined to be interviewed, apparently because she f e l t too shy. After several co-investigators had been interviewed, I began to engage i n t h e o r e t i c a l sampling, looking for participants whose demographic c h a r a c t e r i s t i c s were not already represented i n my group; fo r example, i t was very easy to f i n d w i l l i n g p articipants i n the 40-60 age range, but I had to ac t i v e l y seek younger and older co-investigators. The c r i t e r i a f o r i n c l u s i o n i n the study were as follows: 1. for the reasons stated below, co-investigators had to be women; 2. co-investigators had to have been diagnosed at leas t 3 years previously as I wanted to see how causal models developed over time; 3. co-investigators had to have a systemic, inflammatory form of a r t h r i t i s , rather than osteo- (wear-and-tear) a r t h r i t i s ; and 46 4. co-investigators had to speak English f l u e n t l y so that I could be sure I had a thorough understanding of t h e i r s t o r i e s . Other than these basic c r i t e r i a , I strove f o r d i v e r s i t y i n the par t i c i p a n t group, e s p e c i a l l y with respect to age, culture, and socioeconomic status. The requirement that participants speak fluent English lim i t e d the degree of c u l t u r a l d i v e r s i t y i n the group, but some d i v e r s i t y was possible. Appendix A contains a table of co-investigator demographics. The ages of the co-investigators ranged from 22-78, with a mean of 45.3 and a standard deviation of 14.3. The age of onset ranged from 2 to 51, with a mean of 29 and a standard deviation of 13.3. The number of years since onset ranged from 4 to 32, with a mean of 16.3 and a standard deviation of 8.5. A number of occupations were represented i n the group; there were two nurses, four f u l l - t i m e mothers, a career m i l i t a r y person, a c l e r i c a l worker, a student, an unemployed r e t a i l worker, and a t r i b a l elder. I t was very apparent to me that there was a wide range i n t h e i r s k i l l as his t o r i a n s , i n t h e i r propensity to 47 engage i n introspection, and i n t h e i r capacity f o r abstract thinking. Six of the co-investigators were of the dominant white, English-speaking North American culture, one was a fi r s t - g e n e r a t i o n English immigrant, one a f i r s t - generation Welsh immigrant, one French-Canadian, one second-generation Sikh, and two were F i r s t Nations women. Nine of the women were diagnosed with the adult form of RA, and two with juvenile-onset RA. According to Medsger and Masi (1985), " c l i n i c a l and epidemiological differences between the onset types of juvenile a r t h r i t i s suggest that a vari e t y of syndromes overlap age l i m i t s , and that the age d i s t i n c t i o n between adult and juvenile cases i s an a r t i f i c i a l one." The remaining participant was diagnosed with p s o r i a t i c a r t h r i t i s , a form very s i m i l a r to RA except that p s o r i a s i s i s present as well as j o i n t inflammation (Berkow, 1987); I f e l t that i t was worthwhile to include t h i s p a r ticipant as she can be viewed as someone with the symptoms of RA, and a minor secondary skin problem. 48 Rationale for Including Only Women i n the Study There were several reasons for including only women i n t h i s study. The b i o l o g i c a l and acquired r i s k s for developing RA are d i f f e r e n t f o r men and women (Reisine, 1993). Women are three times as l i k e l y as men to develop RA (Medsger & Masi, 1985), and t h i s may be i n d i c a t i v e of genetic or hormonal influences. Women with RA experience more disease f l a r e s than men with RA, though men have higher rates of osteonecrosis (Reisine, 1993). Men tend to have more physician v i s i t s , longer hospital stays, and e a r l i e r j o i n t a rthroplasties (Reisine, 1993), possibly because they tend to be more active i n t h e i r l e i s u r e pursuits and to have more ph y s i c a l l y demanding jobs. On average, women tend to be f i v e years older than men at the time of jo i n t replacement, and have more severe d i s a b i l i t y (Reisine, 1993). Women with RA are less l i k e l y to be married, and tend to have fewer supports available to maintain t h e i r functional status than do t h e i r male counterparts (Reisine, 1993). They are more l i k e l y to lab e l symptoms as i l l n e s s , and tend to report more pain and d i s a b i l i t y than men, even though t h e i r condition might 49 not be worse (Reisine, 1993). The ways i n which they t e l l t h e i r s t o r i e s , therefore, i s apt to be quite d i f f e r e n t . Women are also more l i k e l y than men to develop depressive symptoms (Frank et a l . , 1988). In summary, the r i s k factors for RA may be d i f f e r e n t f o r women than f o r men, access to and u t i l i z a t i o n of medical and s o c i a l resources i s d i f f e r e n t , psychological outcomes are d i f f e r e n t , and the experience of the disease i t s e l f i s d i f f e r e n t . These differences point to the need to study women's causal models separately from those of men. Data C o l l e c t i o n Mishler (1986) states: "the complex and varied procedures that constitute the core methodology of interview research are directed primarily to the task of making sense of what respondents say when the everyday sources of mutual understanding have been eliminated by the research s i t u a t i o n i t s e l f " (p. 3). There are several factors that may widen the gap between interviewer and respondent. For example, the respondent must understand what the interviewer i s looking f o r , and must t r y to narrow his or her responses to the phenomenon of i n t e r e s t to the 50 researcher; respondent and interviewer must share a common language; the interviewer must be f a m i l i a r enough with the *culture' of which the respondent i s a member to ask f r u i t f u l questions. In the course of my study i t became very obvious to me that there i s a common language shared by people with a r t h r i t i s . Not only i s there a short-hand way of speaking about a r t h r i t i s when two people have had si m i l a r experiences, but the very words chosen may be misunderstood or heard wrong by others unfamiliar with the language. For instance, i n reviewing the tr a n s c r i p t s returned to me by my t y p i s t , I found that she had substituted the word "exasperate" for "exacerbate", and could not make out cer t a i n words commonly used i n the culture of a r t h r i t i s . I have had to make major revisions to many of the tr a n s c r i p t s because the t r a n s c r i p t i o n i s t was not f a m i l i a r with the language of a r t h r i t i s . Because I have l i v e d with a r t h r i t i s f o r many years I have an extraordinary advantage i n understanding the s t o r i e s of my co- investigators . Dyck (1988, c i t e d i n Carpenter, 1991, p. 65) defines "insider research [as the] study of one's own 51 society, with the researcher p a r t i c i p a t i n g as a member of the group being studied." The advantage to i n s i d e r research i s , of course, the potential for true understanding of respondents' perspectives. On the other hand, I am acutely aware that my own experience with RA means that I bring to the research c e r t a i n ideas about the experience of RA that may not be shared by others. I kept a f i e l d journal to record my own thoughts and feelings as the research progressed and used the technique of xbracketing': I included my own story of a r t h r i t i s (Appendix B), so that I can show that I am not simply overlaying my own experience on my co-investigators' s t o r i e s . The interviews tended to be quite lengthy, with most exceeding 2 hours, and 11 of the 12 co- investigators were interviewed more than once. The o r i g i n a l interviews were tape-recorded and transcribed, as were follow-up telephone interviews that occurred during the writing of the s t o r i e s . Unfortunately, my recording equipment f a i l e d both times that I interviewed one p a r t i c u l a r co-investigator, but I took copious notes from which I constructed her story, and I 52 phoned her as I was completing the written story to check my understanding and to seek elaboration. During the f i r s t interview, I began by saying: I am doing a study to understand the ways i n which people make sense out of the fac t that they have a r t h r i t i s . I wonder i f you could t e l l me about the experience of your a r t h r i t i s . When I say "the experience of your a r t h r i t i s " I am not just t a l k i n g about your medical history, although that i s a part of i t . I'd l i k e you to t e l l me about your a r t h r i t i s as though you were t e l l i n g a story with a beginning, a middle, and an end. While t e l l i n g your story, t r y to remember as many d e t a i l s as you can about what you were thinking, f e e l i n g , and doing at d i f f e r e n t points i n time. Any questions? This interview was open-ended, and, depending on the philosophical orientations of the respondents, explored such topics as why God causes or allows people to suffer , whether people who become sick are to blame for t h e i r sickness, whether there i s heroism i n suf f e r i n g , the truth of sayings such as "God never gives us burdens greater than we can bear", and the degree of randomness i n the universe. Appendix C contains a more complete l i s t i n g of interview questions. I was cautious to avoid leading the respondents to any pa r t i c u l a r conclusions. 53 At the s t a r t of subsequent interviews, I checked my understanding of the co-investigators' s t o r i e s . I then asked them to elaborate, and to answer questions d i r e c t l y related to causal a t t r i b u t i o n s , p a r t i c u l a r l y i f t h i s element was not spontaneously offered i n the s t o r y t e l l i n g . Eight of the 12 co-investigators received follow- up telephone c a l l s ; these c a l l s were separated from the o r i g i n a l interviews by a year or more, and i n t e r e s t i n g l y , I usually found that I was offered very valuable information that had not been offered i n the o r i g i n a l interviews. Perhaps the passage of time had allowed the co-investigators to r e f l e c t more f u l l y on t h e i r own a t t r i b u t i o n a l processes, or perhaps they were simply i n d i f f e r e n t frames of mind at home than they were i n h o s p i t a l , and able to approach the questions from d i f f e r e n t perspectives. Another p o s s i b i l i t y i s that over the course of interviewing several co- investigators my appreciation of what information was relevant had broadened, making me more attentive to things that at f i r s t I might have disregarded. 54 Data Analysis To begin, the respondents' s t o r i e s were analyzed i n d i v i d u a l l y . A story has a beginning, a middle, and an end. "In the beginning, the story i s bounded by two poles, i s and ought to be (Cochran, 1990, p. 18). For the RA patient, the " i s " might be a state of chaos, confusion, a sense of disorder and i n j u s t i c e . "Ought to be" might be the restoration of a sense of order and peace. The gap between " i s " and "ought to be" defines the movement of the story. The middle of the story i s an account of the protagonist's e f f o r t s to move from " i s " to "ought to be". The end of the story might be an achievement of "ought to be" as o r i g i n a l l y envisioned by the protagonist, i t might be an unanticipated, yet s a t i s f y i n g , new set of circumstances, or i t might be an abandonment of the quest for "ought to be". Analysis of the story involves a determination of the s i t u a t i o n a l and psychic events that propelled the protagonist from the beginning of the story to the end. The interviews often started with a clear beginning then meandered or jumped backwards or forwards i n time, making the s t o r i e s d i f f i c u l t to 55 follow. Also, second and subsequent interviews, when overlaid on preceding interviews, f i l l e d i n gaps and fleshed out d e t a i l s . So i n order to give myself a coherent framework from which to reconstruct the st o r i e s , I drew timelines f o r each co-investigator, gleaning information from the t r a n s c r i p t s , and placed s i g n i f i c a n t l i f e events below the l i n e s and, for c l a r i t y , the causal elements that were incorporated into the s t o r i e s above the l i n e s . A s i m p l i f i e d example of one of the time l i n e s i s contained i n Appendix D. I used the time l i n e s to write chronological s t o r i e s . Often I began the s t o r i e s with the co- investigators own words, but sometimes other approaches seemed to give more information. For example, when I wrote Stacey's story I started by describing some of the nurturing behaviour I had observed before I even met her; the theme of the disabled nurturer, or wounded healer, was c r i t i c a l to her story, and I wanted to underscore t h i s theme by s t a r t i n g and f i n i s h i n g her story with vignettes that i l l u s t r a t e d i t s importance to her. With Jess's story I wanted from the outset to dismantle any stereotypes the reader had about Sikh women because none of them apply to Jess. When I 56 reconstructed Madeleine's story, I decided to t e l l the story of the s t o r y - t e l l i n g , as opposed to just t e l l i n g the story. Madeleine spent most of the time i n our interviews dispassionately describing her r e l a t i o n s h i p to her a r t h r i t i s , and a l l the while her t a l k served to cover the r e a l story; t h i s became bl a t a n t l y apparent when an innocent question from me unleashed a flood of emotion and the r e a l story s p i l l e d out. In writing t h i s story I t r i e d to give a sense of what happened i n the interviews as a way of i l l u s t r a t i n g her r e l a t i o n s h i p to the r e a l story without resorting to too much overt int e r p r e t a t i o n . In each of the s t o r i e s I t r i e d to give a sense of the person, and of the language they used to t e l l t h e i r story. I included a l l of t h e i r causal a t t r i b u t i o n s and t r i e d to give a sense of how these a t t r i b u t i o n s came to be. The s t o r i e s provide the context for the a t t r i b u t i o n s and provide d e t a i l s about t h e i r sources and t h e i r meanings. The evolution of causal models i s documented i n two ways i n t h i s study: the s t o r i e s provide the context and d e t a i l , and the bare-bones outlines of the causal models contained i n Appendix E f a c i l i t a t e the 5 7 c l u s t e r i n g of themes and comparisons across s t o r i e s . These outlines contain columns for key l i f e events, causes incorporated into the model, influences incorporated into the model, and causes rejected. An implied time l i n e runs down the left-hand side of the page, to give an i n d i c a t i o n of where these various elements were introduced i n the course of the i l l n e s s . The l i f e events give some in d i c a t i o n of what was happening around the time each element was incorporated. From these outlines I began to c l u s t e r causal themes. The a t t r i b u t i o n s f e l l very e a s i l y into physical, psychological, and metaphysical themes. I subdivided these themes into one more l e v e l ; for example, within the physical theme there were causes that were "from the outside" (e.g., viruses, physical abuse), " c o n s t i t u t i o n a l " (e.g., genetic, " i n your system"), r e f l e c t i v e of "the way you are" (e.g., menopausal, overweight), and r e f l e c t i v e of "what you are doing" (e.g., working too hard, working i n inclement conditions). A l l of these themes and sub- themes are very low-inference; they did not require me to make subjective interpretations of the data or 58 d i f f i c u l t decisions about which theme or sub-theme a p a r t i c u l a r cause should f a l l under. Appendix F contains a summary of the elements contained within the themes and sub-themes. From t h i s summary of causes and influences I constructed a "general story" of the development of causal models for a r t h r i t i s . This process was f a c i l i t a t e d by the f a c t that across s t o r i e s the causal models developed i n a f a i r l y t y p i c a l way, f i r s t incorporating the physical, then the psychological, then the noological. The challenge i n constructing the general story was at once to illuminate the s i m i l a r i t i e s and the differences across s t o r i e s . The data lent themselves well to t h i s approach because the framework was si m i l a r across s t o r i e s , but the elements within the framework varied widely. Summary The general d i r e c t i o n of psychosocial research i n RA i s toward increasingly complex s t a t i s t i c a l treatment of data that measures extremely s p e c i f i c aspects of the experience of t h i s disease. I undertook t h i s study with the b e l i e f that a d i f f e r e n t methodological approach would provide fresh insights into l i v i n g with 59 RA, and, i n p a r t i c u l a r , would increase our understanding of the way people develop causal models. This study demonstrates not only that causal models are more complex than e x i s t i n g l i t e r a t u r e would suggest, but also that in-depth q u a l i t a t i v e methods are suited to t h i s type of inquiry. 60 Chapter IV: Results Diana Shortly before Diana's b i r t h i n 1942, her family t r a v e l l e d from t h e i r home i n B r i s t o l , England, to Bath, because t h e i r home c i t y was being bombed. Her mother was admitted to a hospital f o r the impending b i r t h . The night Diana was born, the hospital was bombed. Diana's father stayed at the hospital with his wife and new c h i l d , and said to his wife " i f you and the baby are going to be k i l l e d , I want to be with you." The wing that Diana's family inhabited was spared, whereas the rest of the hospital was destroyed. The circumstances of Diana's dramatic a r r i v a l into the world were r a r e l y discussed i n her family, and then only matter-of-factly. Hers was a family that preferred not to make a fuss about hardship for i t was an i n e v i t a b l e part of l i f e . Despite the f a c t that Diana was born into war-time England, she remembers only one period during which her family suffered some d i f f i c u l t y that made any impression on her. When she was 16, her f r a t e r n a l grandfather, who was dying of cancer, came to l i v e with the family. Her mother had reasoned that she would be 61 well-advised to take i n her father-in-law so that when her own mother became i l l she would be e n t i t l e d to a s i m i l a r arrangement. Diana does not r e c a l l how her family dealt emotionally with the addition to the household of her dying grandfather, but she does remember herself a " l i t t l e b i t c h , " saying to her mother "well i f he's staying here I'm going!". I t seemed that each of the family members concerned themselves primarily with the personal p r a c t i c a l i t i e s of t h i s s i t u a t i o n . Diana's f i r s t a r t h r i t i s symptoms appeared i n 1972 when she was 30 years old, shortly a f t e r the b i r t h of her only b i o l o g i c a l c h i l d . She does not consider herself p a r t i c u l a r l y maternal, and f e l t pushed into motherhood by s o c i a l expectation; as well, she and her husband were struggling f i n a n c i a l l y at the time, so the baby's a r r i v a l was quite s t r e s s f u l . At f i r s t one arm was badly affected, "almost as though i t were paralyzed"; then, she began to f e e l pain whenever she bumped her fingers and toes. The doctor t o l d her "you've got p l a i n old a r t h r i t i s — y o u haven't got rheumatoid which w i l l c r i p p l e you". She understood t h i s to mean that she only had o s t e o a r t h r i t i s , the 62 "wear-and tear" form of a r t h r i t i s that comes with age or injury, and t h i s r e l i e v e d her. Diana responded, "oh good—I can put up with the pain, as long as I don't get any c r i p p l i n g or deformities." For the f i r s t two years she regarded her a r t h r i t i s as merely "annoying," although, i n retrospect, she says many of the tasks associated with caring f o r a small c h i l d were d i f f i c u l t . In 1974 Diana moved to Canada with her husband and c h i l d , and came under the care of a new doctor. He did not suspect rheumatoid a r t h r i t i s either. I t was only when he went away, and was replaced by another doctor, that a correct diagnosis was made. This temporary doctor took one look at her swollen knee and said "I know rheumatoid a r t h r i t i s when I see i t , and you've got i t . " He recommended immediate admission to G.F. Strong, the p r o v i n c i a l r e h a b i l i t a t i o n centre. Again, p r a c t i c a l considerations took center-stage as Diana's parents were coming from England for a s i x - week v i s i t . Eventually she was admitted to h o s p i t a l , and when her physiotherapy program f a i l e d to achieve s a t i s f a c t o r y r e s u l t s , she went for knee surgery. 63 At the time, Diana had no idea what had caused or exacerbated her a r t h r i t i s . She had no family history of i t , and accepted that, l i k e multiple s c l e r o s i s , a r t h r i t i s was simply a disease about which l i t t l e was known. She says now that she must have "had i t i n [her] system," and that the physical and emotional stress of having a c h i l d probably triggered i t . After Diana was diagnosed as having rheumatoid a r t h r i t i s , she r e c a l l e d that when she was an adolescent she had had symptoms consistent with t h i s diagnosis. She was always extremely t i r e d , and found i t necessary to sleep i n the afternoons. She r e c a l l s pain upon kneeling i n the bathtub, and pain i n her chest that she now att r i b u t e s to inflammations of the j o i n t s that j o i n the sternum to the r i b s and c l a v i c l e s , j o i n t s that she did not know existed i n years past. So having the correct diagnosis allowed her to make sense of symptoms that previously she had t r i e d to ignore. When Diana was admitted to the r e h a b i l i t a t i o n centre, she saw several older a r t h r i t i s patients who were confined to wheelchairs. Upset by the ravages that had been wreaked on these people by the very disease she knew she had, she denied the p o s s i b i l i t y 64 that she might become s i m i l a r l y affected. She attributed t h e i r severe d i s a b i l i t y to poor medical advice: i n the 1940s and 1950s they were t o l d to just go to bed. Looking at them she thought, "oh, I ' l l never progress to that." Reflecting on what she thought then, she now says "I guess you're i n a form of den i a l . " She was confident then that the new medical wisdom that prescribed a balanced program of re s t and exercise would keep her from becoming seriously disabled. Diana had one roommate i n G.F. Strong f o r whom she developed a p a r t i c u l a r fondness. This woman was more severely affected by her a r t h r i t i s than Diana was at the time, and Diana would help her with many of her d a i l y tasks. Now, others do for her what she once did for her roommate. "You don't r e a l i z e that progression i s going to come to you," she now says. "When i t does you r e a l i z e that you don't have as much control over your body as you think you do... Some things you can't control by p o s i t i v e thinking." After her knee surgery, Diana functioned r e l a t i v e l y well u n t i l about 1979, by which time her feet had worsened considerably. She was determined to 65 wear "nice shoes," however, and was delighted when she discovered that there was an operation that would f i x her feet. She had t h i s surgery, as well as another knee operation, and again she was able to continue with her regular a c t i v i t i e s . Diana i s a great lover of dogs, and during the early 1980s she took two of her three dogs to extended care homes on a regular basis to do pet therapy. She was active i n other volunteer pursuits as well: she was involved i n her children's school, i n Beavers, and i n the Welcome Wagon, and she was a block parent coordinator. She also t r i e d to take courses at Douglas College, but found that they made her too t i r e d . Diana remembers 1984 as the landmark year when the "fatigue r e a l l y started to s e t t l e i n . " One of her dogs had puppies, and t h i s experience took her to the point of exhaustion. "I couldn't do that again," she says. "That's how I know that i n '84 fatigue caught up with me." She says now that she was doing too much. "You're t o l d to rest, but you want to keep going. I don't always rest when I know I should." Since the time that Diana's way of l i f e began to be altered by her a r t h r i t i s , the question "why me?" has 66 weighed heavily on her mind. "When I die, i f there's a heaven and I go up there, the f i r s t question I'm gonna ask *why did I get t h i s ? ' " The j o v i a l i t y that had characterized Diana's s t o r y t e l l i n g f e l l away af t e r she said t h i s . "I say i t i n a joke context, but, I mean, i t ' s kind of, sort of, I'm serious." She i s es p e c i a l l y confused when she thinks about a l c o h o l i c s and smokers, and others who abuse t h e i r bodies, yet are seemingly healthy: "why do they get away with i t . . . that's not f a i r , i s i t ? " Although she was raised to believe i n God, Diana now considers herself an agnostic, perhaps because of the s u f f e r i n g she has experienced herself, and the suf f e r i n g she has seen i n others. " I f there's a God up there, why i s there a l l t h i s s u f f e r i n g i n the world?", she asks. The search for the answer to t h i s question continues, and to date the only answer that she can muster i s that people are hurt through "quirks of fate." Diana struggles to q u e l l the resentment she f e e l s about having a r t h r i t i s . "Deep down I can be quite b i t t e r about being lumbered with t h i s , " she says, but 67 at the same time she recognizes that "you can't l i v e bitterness." For Diana, one of the most d i f f i c u l t aspects of having a r t h r i t i s i s the fac t that the seemingly normal and modest expectations one has f o r one's l i f e w i l l not be met. In the early days of motherhood, she dreamed of the day when the children were grown and gone, when she would be free to pursue her own int e r e s t s , but " i t didn't work that way." Though her desires were "not grand... just day-to-day" things l i k e hiking and digging i n the garden, she has had to s e t t l e f o r less than she would have l i k e d . She now derives pleasure from her dogs, from feeding wild birds, and from belonging to garden and n a t u r a l i s t clubs. Diana has two d i s t i n c t groups of friends: those with a r t h r i t i s , and those without. With the l a t t e r group she i s able to escape a focus on her i l l n e s s , and pursue the inte r e s t s that preceded the onset of a r t h r i t i s ; with the former group she gets genuine understanding of the physical, s o c i a l , and emotional consequences of having a r t h r i t i s , and i s able to contribute through her leadership of a r t h r i t i s support groups. 68 During our interviews, Diana was i n c l i n e d to laugh e a s i l y , and several times seemed to apologize for what seemed to her to be complaining. I t seemed to me that she was struggling with herself to maintain the appearance of lightheartedness, but that a flood of emotion was barely contained, p a r t i c u l a r l y when she spoke of the lack of support from her husband. "Men haven't got the same understanding of things as women do," she said, then added, "at le a s t when they're over 50 and English they haven't." Although these comments were made with laughter, l a t e r comments suggest that she harbours great sorrow over the state of t h e i r r e l a t i o n s h i p . She acknowledges that i f she did not have a r t h r i t i s she would probably have l e f t him, so frustrated i s she by his emotional distance. Feeling that t h i s option i s closed to her, she seeks solace instead from her women friends, from her dogs, and from the peace she finds i n the outdoors. Marlene In 1978, two weeks a f t e r her 30th birthday, Marlene developed swelling and pain i n the bottom of her feet. A career m i l i t a r y person, she l i v e d i n a society i n c l i n e d , she says, to a t t r i b u t e sickness to 69 either smoking or overweight; t h i s i n c l i n a t i o n delayed her diagnosis, f i r s t by making her reluctant to complain for fear of being blamed fo r her condition, and second, by i n h i b i t i n g the doctors' willingness to entertain the p o s s i b i l i t y of other explanations. When Marlene f i r s t sought medical attention, she was t o l d that her problems were caused by her being overweight, although she says that she was no more than 5 pounds overweight, i f indeed she were overweight at a l l . Marlene's mother and grandmother had both had rheumatoid a r t h r i t i s , so she was very f a m i l i a r with the disease's manifestations. Yet, despite t h i s , she was not prepared to accept the p o s s i b i l i t y that i t might be a r t h r i t i s , even when i t was eventually suggested to her. She thought to herself that "they didn't r e a l l y know what they were t a l k i n g about, that i t was probably some dreaded disease that wasn't a r t h r i t i s . " Asked why she would not consider the p o s s i b i l i t y that i t might be a r t h r i t i s , knowing that her symptoms were not unlike her mother's, she responded, "because I didn't want i t . I mean I could see what i t did to my mom, and I didn't p a r t i c u l a r l y want i t . " So a f r a i d was she that she had the same disease that her mother had, she preferred to think that she might have some "dreaded disease." Some years l a t e r , when Marlene's s i s t e r developed the symptoms of RA, she engaged i n the same sort of denial, claiming f o r 2 years that she did not have a r t h r i t i s , that i t was something else, despite her f u l l knowledge of Marlene's experience. Six months af t e r Marlene's symptoms f i r s t appeared, a f t e r she had been forced to take considerable time from work, a c i v i l i a n doctor, aware of the hi s t o r y of RA i n Marlene's family, and having made a diagnosis based on c l i n i c a l signs, began to tr e a t her for a r t h r i t i s . Even then, Marlene was reluctant, as was her s i s t e r years l a t e r , to accept her diagnosis u n t i l i t "showed up i n [her] blood," a reference to the appearance of a blood factor often found i n RA patients. Once the physical evidence, the blood factor, had convinced Marlene of her diagnosis, she began to think about why she had developed a r t h r i t i s . Aware that her doctor had based her diagnostic hunches on Marlene's family's medical history, she looked to the r o l e of genetics, and came, with some assistance from her doctor, to a cert a i n understanding. I t i s "not 71 necessarily hereditary because I've been t o l d that i t . . . can run i n fami l i e s , but i t ' s not hereditary because there i s a gene that c a r r i e s . . . the a r t h r i t i s , or the rheumatoid a r t h r i t i s factor, and i f you i n h e r i t that p a r t i c u l a r gene from... your parents, then you are l i k e l y to get i t . " She has some i n k l i n g that RA i s associated with a p a r t i c u l a r gene, and that having the gene makes one more l i k e l y to develop RA, but does not have the language to express well her theory of genetic transmission. In retrospect, Marlene looks back on the time during which her a r t h r i t i s f i r s t developed as a s t r e s s f u l time. She was a single mother with a f i v e - year-old son, and was among the f i r s t single mothers to l i v e i n housing designated for m i l i t a r y f a m i l i e s . Her stressors were many: she had sole r e s p o n s i b i l i t y for a young c h i l d , she l i v e d i n a society where there are few single women, and fewer single mothers, and she was regarded by other women i n her neighbourhood as a threat. Her 30th birthday was something of a c r i s i s for her as she feared that she would never marry, and now she wonders whether that c r i s i s might have preci p i t a t e d the onset of her a r t h r i t i s . 72 Marlene's work was extremely important to her, both because i t allowed her to support herself and her son, and because she took great pride i n the qua l i t y and quantity of the work i t s e l f . "I guess I t h r i v e under stress at work," she says, "and that's the only time I ' l l r e a l l y enjoy my job i s when you give me too much to do and I have to prove to you that I can get i t a l l done by myself." But the culture of Marlene's work environment was not tolerant of weakness or sickness. Further, the job was d i f f e r e n t than a c i v i l i a n job; even those i n administrative and c l e r i c a l positions were expected to pa r t i c i p a t e i n physical exercise and m i l i t a r y parades. "They don't want a bunch of s i c k i e s i n the m i l i t a r y , " she says. Marlene t r i e d for many years to carry her f u l l work load, and she managed to be excused from exercise and m i l i t a r y d r i l l s . She kept her eye on the 20-year mark, knowing that then she would be able to c o l l e c t a pension. Eventually, however, her d i s a b i l i t y was so apparent that she was c a l l e d before a review board, and asked to sign a paper acknowledging that she would have "career and geographical r e s t r i c t i o n s " because of her 73 a r t h r i t i s . She was not bothered by the geographical r e s t r i c t i o n s , as they were intended to keep her near a large medical f a c i l i t y ; she had no choice but to accept that she would never be promoted because she needed her job. Marlene had gone from a high-pressure, responsible, and f u l f i l l i n g job to sorting mail and putting things i n numerical order. She was given the option of working only half-days, and, discouraged by the meniality of the work she was given, she did so. But she forced herself to work i n the mornings rather than the afternoons, a time when she, l i k e most people with a r t h r i t i s , have the most d i f f i c u l t y . She wonders now whether her condition might be worse i f she had not forced herself i n t h i s way. Marlene f e e l s that stress greatly affected the course and severity of her a r t h r i t i s . S p e c i f i c a l l y , the "mental str e s s " of t r y i n g to conceal her physical d i f f i c u l t i e s while producing copious amounts of work "played havoc" with her a r t h r i t i s , r e s u l t i n g i n a few ho s p i t a l i z a t i o n s . She also believes that weather has some e f f e c t , though i n the opposite d i r e c t i o n to what 74 others claim; when the sun shines she f e e l s t e r r i b l e , but when the r a i n comes she recovers. Marlene has often asked the question "why me?," p a r t i c u l a r l y when her pain was severe. Though she s t i l l struggles with the question, her tentative answer i s that i t i s "just the way things are, the way l i f e i s . . . some are l u c k i e r than others." Marlene seems to have the notion that one's willpower has an a f f e c t on one's physical status. Even her mother, who she says had worse a r t h r i t i s than anyone she has seen, did not r e l y on a wheelchair. " I t i s n ' t the future for me. I w i l l never be l i k e those people who have to stay i n wheelchairs... my mother never was i n a wheelchair." Her optimism also stems from her r e l a t i v e youth, and the f a c t that she was t o l d by doctors i n the beginning that i f she started on medication immediately her a r t h r i t i s would "progress, but [she] wouldn't be as bad o f f " . Marlene's fears about never finding a husband were unfounded. A man who befriended her son through the Big Brothers organization eventually became her husband. Her son i s now ah adult and has recently moved away from his parents' home. 75 Marlene has now r e t i r e d , and i s able to c o l l e c t her hard-won pension. She plans to spend her retirement reading, doing c r a f t s and volunteer work, and t r a v e l l i n g with her husband. The struggles of being alone and of r a i s i n g a son alone, of t r y i n g to conceal an i l l n e s s i n a society that disallows physical weakness, of taxing her body beyond i t s l i m i t s , and of having to accept reassignment to meaningless work despite her best e f f o r t s , are now behind her. Marlene maintained quite a d i s c i p l i n e d , unemotional tone i n our interviews. But when we were finished , I noticed on her bedside table a book that lay with i t s pages pressed open, i t s own cover concealed by a red p l a s t i c cover. I asked her what she was reading, and blushingly, she admitted that i t was a romance novel. Although she had t o l d me the facts of her fears about being alone, that novel and i t s disguise seemed to t e l l me something about the depths of the fears that she had f e l t . Marlene must s t i l l cope with flare-ups, h o s p i t a l i z a t i o n s , and surgeries, but the worst seems to her to be over, and she plans to savour the v i c t o r y . 76 Sophie In the la t e 1940s, 79-year-old Sophie worked for the V i c t o r i a n Order of Nurses, as a nurse who cared for patients i n t h e i r own homes. She r e c a l l s one patient i n p a r t i c u l a r who had rheumatoid a r t h r i t i s , and who required a nurse to a s s i s t her i n bathing. "She was propped up on a hospital bed i n her l i v i n g room with pillows a l l around her. I ' l l never forget i t , " Sophie says. "Every breath she took she moaned. I thought, my gosh, never l e t me get t h i s . Anything but t h i s . " Twenty years or so l a t e r , Sophie suffered acute flareups i n her jo i n t s over three consecutive weekends. F i r s t her thumb f l a r e d , then her shoulder, then a t h i r d j o i n t she can't r e c a l l , and she knew to go to the doctor r i g h t away. Her family doctor booked an appointment with an i n t e r n i s t two weeks from then. When the i n t e r n i s t examined her he was alarmed enough to march her immediately next door to see a rheumatologist. Her RA was diagnosed and she was t o l d that she would need to be admitted to hospital f o r a week to " s t a b i l i z e . " After returning home from hospital Sophie continued to worsen as she and her doctor t r i e d to f i n d 77 medications that she could t o l e r a t e . Two or three months l a t e r , having met with l i t t l e success, her rheumatologist t o l d her she needed to go into a convalescent home for a month or so. She started to cry and said "I can't do that. I have children at home." But her 10-year^old daughter and 15-year-old son f i n a l l y became the reason f o r her admission: she knew she had to "forget about everything except getting better" because her children needed her. During her admission i n the convalescent home and af t e r her return home she had her worst shoulder injected with cortisone two or three times, and she had a "very good" physiotherapist who bent her shoulders back u n t i l she screamed. She also had her knees aspirated and injected with cortisone every s i x weeks. But mainly she took to bedrest, a practice that i s very much discouraged now. When her a r t h r i t i s was new, Sophie concerned herself less with the fundamental causes of a r t h r i t i s than with what things made her f e e l better or worse. The one thing that seemed to most influence the severity of her a r t h r i t i s was heat. She spent her f i r s t summer with a r t h r i t i s at her cousin's house where 78 she could lay on the couch and enjoy the a i r conditioner. "The hot weather k i l l s me," she says. "That's the worst thing that happens to me, the hot, humid weather." This b e l i e f i n the detrimental e f f e c t s of heat would lead her, some years l a t e r , to move from her home province of Quebec to the more moderate climate of the West coast. Even here she finds herself spending time i n the parkade below her condominium, t r y i n g to cool down. For the f i r s t few years Sophie spent much of her days l y i n g i n bed. Yet, anxious to conceal the seriousness of her i l l n e s s from her children, she always arose i n t h e i r presence, and always made dinner for them i n the evenings. She hid from them the f a c t that she was taking medications because she feared, given the s o c i a l climate of the s i x t i e s , that they would be more apt to turn to drugs themselves i f they knew. Sophie's friends t r i e d to coax her into s o c i a l p a r t i c i p a t i o n . "They say well a long walk w i l l do you good, or come over, we're having a party, i t ' l l do you good to get out." But Sophie became very firm i n turning down these i n v i t a t i o n s , f e a r f u l that excessive 7 9 physical a c t i v i t y would exacerbate her a r t h r i t i s . Though she has become much more aware of the need f o r physical a c t i v i t y , she s t i l l struggles with t r y i n g to s t r i k e a healthy balance between res t and a c t i v i t y : The hardest thing about a r t h r i t i s i s learning to balance what you can do and what you want to do. I'm always t e s t i n g the waters, always wanting to do a l i t t l e more than I should. You know I always wanted to climb that h i l l over there, or walk an extra block. That way, I found out what I could do and what I couldn't do. Some years into the course of her disease, Sophie's ideas about i t s cause started to take shape. At f i r s t she looked to physical causes, and pointed p a r t i c u l a r l y to her enthusiasm f o r tennis. She had been playing tennis for a year or two before the onset of her a r t h r i t i s a f t e r a period of r e l a t i v e i n a c t i v i t y , and says that perhaps she "went at i t too strong". Further r e f l e c t i o n led to the incorporation of stress into Sophie's explanatory model. She says that around the time of onset she was having problems i n her marriage because of her jealous husband. She now says that "everything sort of came together at the same time" to produce her a r t h r i t i s . Sophie had also come to notice that the severity of her a r t h r i t i s was influenced by changes i n 8 0 barometric pressure, an idea that i s commonly held by people with a r t h r i t i s , and a notion that was reinforced by her own observation. Over the years, Sophie was i n and out of hospital many times, and underwent several operations. She says that her ho s p i t a l i z a t i o n s reminded her of how "lucky [she was] getting a f t e r the a r t h r i t i s r i g h t away" because she saw i t s devastation i n people whose treatment was delayed. Sophie was also witness i n hospital to the struggles of many young people who had been injured i n accidents. Of them she says, "you drive too f a s t , you're l i a b l e to get into trouble. You l i g h t a match, you're going to get burned." Thus, she sees the misfortunes of many others as the l o g i c a l outcomes of t h e i r behaviour. Yet at the same time she shies away from any notions of blameworthiness, preferring to look simply at the l i n k s i n the causal chains rather than the character of those affected. This kind of thinking, she believes, may have been p a r t l y an outcome of her experiences as a nurse. This detached attitude toward suf f e r i n g may also have been fostered by the emotional climate of her 81 fami l y - o f - o r i g i n . The family d i d not have any mystical b e l i e f s about causation, and shows of strong emotion were extremely rare. Sophie r e c a l l s only one event during which she witnessed the g r i e f of a family member. She had returned home from overseas shortly before the end of the second world war. Though two of her brothers had been k i l l e d i n the war, the family would not speak of them, instead holding t h e i r sorrow to themselves. One day Sophie and her mother had a s l i g h t disagreement, but so close to the surface were people's emotions that the disagreement sent her mother crying to the upstairs bedroom. But that was the end of i t : "somebody said she'd never c r i e d a f t e r the war." Sophie likewise took an unemotional approach to her a r t h r i t i s . Asked whether she had ever asked "why me?" she frowned and r e c o i l e d , h a s t i l y dismissing the u t i l i t y of such questions. "I'm a r e a l i s t and i t would never occur to me to say *why me?'" she says adamantly. "My philosophy i s a problem i s something that you do something about. You deal with things as they come along as well as you can." An atheist, she does not look to the supernatural to explain events but instead explains the unexplainable i n terms of chance. "People 82 get a l l sorts of things and a l l sorts of things happen because, l o t s of things happen per chance. I mean you go around one corner instead of another corner and what happens." Eleven years a f t e r the onset of her a r t h r i t i s , at the age of 62, Sophie separated from her husband. This was a time of transformation f o r her; buoyed by her newfound freedom, she flew to Europe, purchased a Eur o r a i l pass, and t r a v e l l e d the continent on her own, te s t i n g the l i m i t s of her physical endurance. "I c e r t a i n l y learned that I could look a f t e r myself with that t r i p , " she says. Though she has been able to t r a v e l less i n the past few years, she s t i l l attends jazz f e s t i v a l s a l l over North America, s a t i s f y i n g her love f o r music through l i s t e n i n g and studying, rather than playing as she did i n the past. Humour plays a big part i n Sophie's l i f e , and she t r i e s at a l l times to laugh at herself and her si t u a t i o n : I had a black lab dog f o r 22 years and I f i n a l l y had to put him down — he was getting too old. He used to go down the stone steps from our front door to our sidewalk, he used to go down the steps just l i k e me. I mean he used to go down with h i s legs bent l i k e that. I used to stand and laugh. He was just l i k e me. 83 Overall, Sophie f e e l s she has gained much from her experience of a r t h r i t i s . Though she has not undergone a profound s h i f t i n her world view because she has a r t h r i t i s , her focus has s h i f t e d , she says f o r the better: When you've had t h i s happen to you i t ' s usually good. If you come through. You know i f you work i t through you're better o f f because you've learned an awful l o t . Understanding other people. Not only i n the pain area of other people. I t ' s understanding of other people generally, because you're l y i n g back and observing a l o t . I mean you're s i t t i n g back and you're observing. You're not rushing around and doing so many things and keeping busy. Your horizons are widened i n that way. T r i v i a l i t i e s go by the board. Tamara Fifte e n years ago, at the age of 36, Tamara went to bed a very healthy person and woke up the next morning "completely paralyzed i n a l l [her] major j o i n t s l i k e knees and feet and elbows and hands." At f i r s t , she says, doctors thought she had blood c l o t s , but af t e r r u l i n g out t h i s p o s s i b i l i t y they were at a loss to explain her symptoms. She had been l i v i n g i n northern Quebec and was sent to Montreal General, the closest major medical centre, where she was eventually diagnosed as having p o l y a r t h r i t i s . 84 Tamara had recently had a tuberculosis vaccination, and i t i s f o r t h i s reason, she says, that the "Rh" factor did not show up i n her blood, thus precluding an i n i t i a l diagnosis of rheumatoid a r t h r i t i s . "The doctors must be t o t a l l y s c i e n t i f i c " and r e f r a i n from c a l l i n g i t rheumatoid u n t i l a f t e r the blood factor shows up, an event that could, according to Tamara, follow the TB vaccination by 5 or 10 years. Nevertheless, Tamara says she knew she had RA because her father had shown i t s symptoms, and because "genetic t e s t i n g " had revealed that she c a r r i e d "the gene" fo r RA. She believes that t h i s genetic predisposition, combined with the f e a r f u l l y cold conditions i n which she had worked, and the f a c t that she had been an athlete, caused the a r t h r i t i s to be "activated." The onset of Tamara's a r t h r i t i s was sudden and i t s course was rapid. I t completely destroyed some of her j o i n t s within the f i r s t two years, necessitating very early j o i n t replacement. Doctors suggested to her that the r a p i d i t y of i t s progression could be attributed to her lack of estrogen, for she had undergone a hysterectomy nine years e a r l i e r . 85 Before her i l l n e s s Tamara had been a d i s s a t i s f i e d Roman Catholic. She had been, by her own description, very status-conscious, very m a t e r i a l i s t i c , overly concerned with her own physical beauty. She was, at the same time, "searching for the answers to l i f e and not getting them... I had trouble b e l i e v i n g i n a God who created a l l things and sent X number of people to h e l l f o r e t e r n i t y , " she says. "I didn't l i k e God. I thought God was a male chauvinist. As a Catholic I thought the highest you could go was to be a Pope, and the f a c t that I'm female I couldn't even make i t . I also had trouble during wars. One country would pray to i t s God and the other country would pray to i t s God, and whoever won, well that was the side God favoured. So I didn't l i k e God very much." While she undergoing diagnostic t e s t s , Tamara was i n a hospital i n which many of the e l d e r l y patients were cared f o r by private nurses. One of these nurses who worked the night s h i f t was about the same age as Tamara, and took a s p e c i a l i n t e r e s t i n her, bringing her books and t a l k i n g with her long into the night. This nurse introduced her to the writings of Edgar Cayce, whose ideas about reincarnation and natural 86 j u s t i c e provided some explanations about the i n j u s t i c e she saw i n the world, and were an important stepping stone to some l a t e r s p i r i t u a l b e l i e f s . A couple of years into her i l l n e s s Tamara incorporated psychological stress into her causal theory as well. She had noticed that the onset of cer t a i n diseases such as cancer was often preceded by a period of excessive stress. Looking back at the period preceding the onset of her a r t h r i t i s she was able to point to several factors which, taken together, had produced mental and physical exhaustion for her. She had recently adopted two young children, 15 months apart, and she was taking four u n i v e r s i t y courses at night while working f u l l - t i m e as a teacher. The b e l i e f i n the strong influence of psychological and physical stress on the course of her a r t h r i t i s has been reinforced for her several times over the course of her disease as flareups have always coincided with periods of excessive stress. A doctor once t o l d Tamara that, l i k e cancer and MS, RA i s one of the "anger-diseases." That i s , people who carry around a l o t of anger, h o s t i l i t y , and bitterness are vulnerable to these p a r t i c u l a r diseases. 87 She does not see herself as angry, h o s t i l e , or b i t t e r , but instead thinks of a r t h r i t i s as an " i r r i t a t i o n - disease" or a "worry-disease." A few years a f t e r the onset of Tamara's a r t h r i t i s , a rheumatologist made an additional diagnosis of fibromyalgia, based on the excruciating pain she f e l t at key pressure points i n her neck, shoulders, and back. This new problem complicated her treatment as the kinds of therapies that a l l e v i a t e d the fibromyalgia were often ones that exacerbated her RA. Tamara was not t e r r i b l y perturbed by t h i s new development, however, f e e l i n g that RA and fibromyalgia were both forms of a r t h r i t i s , and that the d i f f e r e n t labels were meaningful only to the doctors. At around t h i s time, a life-changing event occurred one day when friends came to v i s i t . In t h e i r presence Tamara t r i e d to do some l i t t l e task that was made very d i f f i c u l t by her a r t h r i t i s . Frustrated, she made a comment to the e f f e c t that she must have done something r e a l l y awful i n a past l i f e f o r t h i s disease to have been i n f l i c t e d on her. These friends, i t turned out, were followers of Eckankar, a r e l i g i o n that teaches that our present l i v e s are affected by our past 88 l i v e s , that the d i f f i c u l t i e s v i s i t e d upon us now are the natural consequence of wrongdoing i n our past l i v e s . Tamara was captivated by the seemingly l o g i c a l answers that Eckankar provided. "A whole l o t of fears that I have i n t h i s l i f e , I was shown that they were caused from another l i f e , " she says. "For instance, I never trusted my husband and I had no reason to mistrust him, so I asked why. And i n past l i v e s we've been married several times, and i n a past l i f e he was a womanizer. So I've c a r r i e d that over. When I r e a l i z e d that I thought x w e l l , that's i n the past and I can drop i t ' . " Devotees of Eckankar practice contemplation f o r 28 minutes every day. Through contemplation they are shown the past and how i t a f f e c t s l i f e now. " I t i s l i k e looking at a video," Tamara says. "Even though you are a d i f f e r e n t person, either male or female, d i f f e r e n t s i z e , d i f f e r e n t looks, everything, you do recognize yourself." I t was through one of the revelations that came i n a period of contemplation, that Tamara learned why she had been struck with RA and fibromyalgia. In a past l i f e , she says, she was a 89 Roman s o l d i e r who had thrown Christians to the l i o n s . For that she must pay r e t r i b u t i o n . "What you do unto others i s done unto you. So I believe r i g h t now I'm just paying o f f my karmic c r e d i t card." Tamara's day-to-day l i f e changed i n tandem with her s p i r i t u a l l i f e . She had been a school teacher for a number of years but the great fatigue that accompanied her a r t h r i t i s had forced her to quit teaching. In an e f f o r t to take her attention o f f of herself she returned to school, f i r s t completing a business diploma, and eventually a bachelor's degree i n environmental geography. She c r e d i t s her a r t h r i t i s f o r these accomplishments, saying that i t "opened doors for [her] that she never would have perceived." I t exposed the shallowness of her former pursuits and forced her to look f o r other p o s s i b i l i t i e s . So she sees her i l l n e s s as both blessing and punishment. One of the p o s s i b i l i t i e s that Tamara chose to pursue was volunteer work with Cansurmount and hospice. As a c h i l d Tamara's family had l i v e d on a small i s l a n d o f f the coast of Newfoundland. There was no hospital there, l e t alone hospice, and when people were i l l and approaching death they came to Tamara's mother for 90 care. This woman had a strong b e l i e f that the body was something quite d i s t i n c t from the s p i r i t or essence, and consequently had no fear of death. As people approached physical death she encouraged them to l e t go of t h e i r struggles and go towards the l i g h t . She t r i e d to i n s t i l l the same attitudes about death i n her children, though Tamara says she did not f u l l y understand u n t i l much l a t e r i n l i f e , when she learned about Eckankar, and when she had her own near-death experiences. The f i r s t near-death experience occurred f i v e years ago when Tamara was having hip-replacement surgery. She describes i t t h i s way: The doctor l e f t me paralyzed. He forgot to release the drug I had. As a r e s u l t of that I was c l i n i c a l l y dead f o r about twenty minutes. I had a choice to come back or stay where I was, because where you are i s very, very, b e a u t i f u l . You see the l i g h t and hear the sound. I t ' s beyond anything comprehensible to t h i s world. I did not want to come back but I r e a l i z e d I had small children and I took these on, and maybe I should continue with them. So the s p i r i t u a l being said that was correct. I t ' s l i k e a t e s t you're given. Her second near-death experience occurred l a s t year and was more immediately relevant to her a r t h r i t i s . She had an i d i o s y n c r a t i c reaction to a large dose of prednisone; her heart enlarged, she says, pushing on her lungs and esophagus and preventing her from breathing. That was d i f f e r e n t . The children were raised now and I had a choice and I r e a l l y wanted to stay on the other side. I said to the s p i r i t u a l being " i f I die now would I have to come back and f i n i s h the karma I have now?" and I was t o l d yes. So I thought what the heck. I'm fifty-two years old now. What the h e l l . I ' l l come back. The universe, according to Tamara's b e l i e f s , operates such that i n one's present l i f e one has to pay r e t r i b u t i o n for past wrongs and experience a change i n consciousness; otherwise one i s doomed to experience the same hardship i n the next l i f e . When people pray for Tamara's healing she erects a "sh i e l d of l i g h t . " She does not want to be denied the experience of her a r t h r i t i s , l e s t she be forced to r e l i v e the experience a l l over again i n the next l i f e . Besides, she was shown i n a revelation that although she would have to experience many years of s u f f e r i n g i n t h i s l i f e , the suffe r i n g would end i n the next few years, leaving her without pain and d i s a b i l i t y f o r the remainder of t h i s l i f e . In explaining the etiology of her a r t h r i t i s Tamara s t i l l s says "A, B, C, and D, E, F must come together before i t i s activated." If one st a r t s with a genetic 9 2 predisposition, and meets with the r i g h t environmental conditions, say, cold climate, stress, hormonal deficiency, and a history of a t h l e t i c i n j u r i e s , symptoms w i l l appear. Now, however, having l i v e d with her a r t h r i t i s for 15 years, the s p i r i t u a l explanation i s most s a l i e n t f o r her. Paying r e s t i t u t i o n for past wrongs i s a l o g i c a l and s a t i s f y i n g explanation for her su f f e r i n g . Further, her involvement i n Eckankar has provided her with a sense of purpose; she publishes a nat i o n a l l y d i s t r i b u t e d newsletter f o r Eckankar, and she regularly conducts workshops on subjects related to near-death experiences, fears, stress, and v i s u a l i z a t i o n . She i s also writing a book on coping with i l l n e s s , and dealing with doctors. She f e e l s at peace knowing her a r t h r i t i s i s part of the natural order. If I had not gotten sic k , I would not have been sent to Montreal. I would not have met the nurse that gave me Edgar Cayce's book, and a f t e r his book there was something missing i n i t , and then I searched and I found. I became a d i f f e r e n t person. I am not the same person I was 15 years ago. I'm very p o s i t i v e , seldom negative. I look at things now and figure the karma has been finishe d , and now I'm just sort of going to a p u r i f i c a t i o n . And each stage i s an expansion of consciousness and a s p i r i t u a l growth. Eventually 93 I w i l l be fi n i s h e d with t h i s and w i l l learn i n a new way. Gwen In 1980, Gwen was painting her family's home, preparing i t for sale a f t e r the bank's foreclosure; so she began her story. She noticed that her toes were very sore but decided that the pain must have been caused by her having to stretch on tiptoe to reach high places with her paintbrush. Over the next s i x months or so, other j o i n t s became involved as well: f i r s t her hands, then her knees. She went to see her family doctor who then referred her to a rheumatologist. Diagnosis of rheumatoid a r t h r i t i s was prompt, and i t was suggested that she be admitted immediately to G.F. Strong or to Rufus Gibbs, a lodge which houses people s e r i o u s l y - i l l with a r t h r i t i s while they attend intensive, f u l l - t i m e treatment at the A r t h r i t i s Centre. Gwen offered a plethora of excuses f o r not going to either of the two centres. "I'd use anything," she says. "*0h, I've got two dogs', you know. Just to think r e a l l y my a r t h r i t i s i s so bad that I've got to do something about i t . " She managed i n t h i s way to avoid h o s p i t a l i z a t i o n f o r the next four years. 94 In the early days of her a r t h r i t i s , Gwen ruled out heredity as a possible cause of her a r t h r i t i s as she could think of no other family member with s i m i l a r symptoms. Instead she pointed to menopause as the tr i g g e r that set o f f her a r t h r i t i s : "I would have been la t e 40s, r e a l l y , and maybe I wonder sometimes i f that age has something to do with the change, too, you know. Why would a r t h r i t i s come at that p a r t i c u l a r age?" However another explanation, stress, came to the fore as slowly Gwen began to come terms with the events that had occurred over several years preceding the onset of her a r t h r i t i s . She had had a very t r a d i t i o n a l marriage; her husband was a prominent businessman and the sole breadwinner f o r the family, and Gwen's r o l e was to care f o r the home and three children, and to play the supporting role to her husband, entertaining h i s colleagues and customers. They l i v e d i n quite a grand s t y l e i n a "select" neighbourhood, and t h e i r children only attended expensive private schools. But a l l was not as i t seemed; Gwen's husband mortgaged t h e i r house to prop up hi s f a i l i n g business and was behaving i n ways she now c a l l s "scandalous." He had developed a very serious drinking problem and 95 had become extremely "promiscuous." Gwen t r i e d a l l the while to remain the stable, genteel wife, turning a bl i n d eye to much of what was happening and draping the family's l i f e with a v e i l of c i v i l i t y : I was always there to be dependable. I would never have been able to depend on him r e a l l y . Oh, the uncertainty of i t a l l , you know, waiting. I'd have cheese s o u f f l e , you know, for dinner. He was taking courses at [a university] and he'd say, well, you know, "wait to eat." He'd be home at 11 o'clock a f t e r taking t h i s course, so " l e t ' s have a so u f f l e , you know, we'll have a late dinner." And I'd make the so u f f l e but you know what happens i f you don't eat i t . You know 11 o'clock would go, maybe one day, two days, three days. Just an impossible way to l i v e . Yet Gwen's husband belonged to a sort of "culture" where t h i s kind of behaviour was the norm. Increasingly, Gwen resented the "phoniness" of t h i s culture, and began to question her ro l e i n supporting i t . " I t was such a phony kind of l i f e , you know, the friends that I had to entertain... I don't appreciate people who r e a l l y abuse t h e i r families and don't t r e a t them very n i c e l y , and to have to entertain these people, you know, there was a l o t of phoniness, too." Gwen's husband's v o l a t i l e behaviour had a profound e f f e c t on the children as well: I was so oblivious, you know, to them being so hurt, but ah. Oh, i t takes a tremendous t o l l , you know. I mean now when you hear of dysfunctional 96 fam i l i e s , I mean my goodness here we were, my children going to private school, I mean what a phony facade i t was, r e a l l y , and, you know, kind of a wall... [meanwhile at home] children never knowing what's going to happen when they come i n through the door. I t ' s a t e r r i b l e way f o r children to l i v e . . . I f e l t t e r r i b l y g u i l t y about i t . Children are very f o r g i v i n g and they say "well, you know, what could you have done about i t ? " I mean we were l i k e helpless babies... we were such a pathetic bunch, you know, to think that r e a l l y i n a way t h i s man was the engine, you know, that had kind of driven us to where we were. And without him there was t o t a l collapse. In 1975 Gwen i n i t i a t e d divorce proceedings, determined to seek peace and s t a b i l i t y f o r herself and her children. But her resolve crumbled beneath the weight of her husband's charm; on New Year's Day, 1976, a day which held great emotional si g n i f i c a n c e for her because of i t s association with endings and beginnings, he made a surprise appearance at her house. "I was so exhausted and I remember him coming to the kitchen, you know, and he just hugged me and gave me a ki s s and would you believe that was the s t a r t of the r e c o n c i l i a t i o n , you know, but re c o n c i l i n g to the same patterns, even worse than before." Her husband's drinking, l y i n g , and i n f i d e l i t y continued despite the r e c o n c i l i a t i o n . At one point he went to Seattle to admit himself to an alcohol treatment centre, but not only did t h i s f a i l to solve 97 hi s drinking problems, he met a woman there with whom he began a long-term a f f a i r . Many subsequent t r i p s were made to Seattle on the pretence of checking into the YMCA to "figure things out." Though Gwen became aware of t h i s other woman, she was receiving mixed messages from her husband, and believed that he would not leave her to be with the other woman. She says, "I just thought I'd be married forever." Gwen's l i f e continued i n t h i s manner fo r the next four years or so, and she was ever-hopeful that things would improve. "I thought i f he stopped drinking everything would be a l r i g h t . And he did eventually, and when he did he l e f t me." In 1980 Gwen's marriage broke down, her husband's business f a i l e d , and the bank took her family home: To lose your home i s such a waste i n a way. I t ' s quite scandalous to lose i t i n such a manner. You know, i t meant that he had no value on home, children, marriage, or family. I t meant nothing to him and fo r me those were, you know, what else i s there i n l i f e — f a m i l y , a roof over your head. So, you know, by nature I think I'm a calm person, but I must say that I remember f e e l i n g such fear. At t h i s point, too, her children were reaching adulthood and were leaving home. So i t seemed to Gwen that the only thing she l i v e d f o r , her family, had disintegrated. I t was at t h i s time, as she said at the 98 beginning of her story, that she developed the symptoms of a r t h r i t i s . But i t was not u n t i l some time had passed that she began to incorporate stress into her explanatory model. Looking back she says: I knew that tremendous things were happening to my body. I mean the day I r e a l i z e d we owed the bank money, l o t s , you know — $40,000 — and that's when the bank said i t would send a truck. You know taking your beds and everything. I just paced l i k e a madwoman. I mean something has to happen to your body, you know, either the heart gives out or you have high blood pressure. I think i f you have stress where you r e a l l y haven't a way of resolving i t or doing something about i t yourself, well I think i t has to do something to your body, t r i g g e r something. So began a very d i f f i c u l t new period. Suddenly she had no home, no savings, and no marketable s k i l l s with which to generate an income. Complicating matters was the f a c t that she did not have true closure on her marriage; her husband was s t i l l i n and out of her l i f e " l i k e a wayward c h i l d . " Gwen describes the development of her a r t h r i t i s as gradual and insidious, but probing reveals that i t s physical development was not gradual; rather, her recognition of i t s seriousness and her willingness to submit to treatment were slow i n coming. She i n s i s t e d , f o r the f i r s t few years, on being the s t o i c , the strong one on whom others could depend. Preservation of t h i s 99 image of herself was e s s e n t i a l to her coping, and precluded the acknowledgement that her body was degenerating. In 1985, Gwen f i n a l l y ended her r e l a t i o n s h i p with her husband once and f o r a l l . In divorce proceedings she t r i e d to argue that the physical abuse she had suffered from her husband had contributed to the development of her a r t h r i t i s . He had kicked her many times over the years i n the knees and i n the r i b s , a fa c t of which she i s very ashamed and which she t e l l s v i r t u a l l y no one, and to t h i s day, she says, she i s the only person she knows who has a r t h r i t i s i n the r i b s . Though her lawyer t o l d her that "you can't prove that a good kicking and a good beating cause a r t h r i t i s , " she continues to believe that they were contributing factors. As Gwen closed the book on her marriage, the r e a l i t y of her a r t h r i t i s h i t her face-on, both phy s i c a l l y and emotionally: I woke up one morning, awake a l l night, my hands and arms were quite sore. When I woke up I couldn't move either arm, you know, just as i f you'd had a stroke. And I remember my hands being pale, pale and waxy, just shiny, you know, f r u i t - - a r t i f i c i a l f r u i t i n a bowl, shining l i k e that. That's what my hands were l i k e . Oh I f e l t so i l l . That's what got me into the [Rufus Gibbs] lodge 100 then, you know. That frightened me because r e a l l y something happened that I had no control [over]. I t was at t h i s point that Gwen began to question "why me?" She says she had l i v e d i n a "dream world" most of her l i f e , and t h i s was the time that the sti n g of r e a l i t y was f e l t most acutely. On one hand she looked back at her l i f e and a l l that she had suffered and wondered why a further c r u e l t y had to be i n f l i c t e d on her. But as time passed she saw that she had survived a l l that had happened and that she would survive t h i s too. Indeed, though she does not consider herself a r e l i g i o u s person, she had always had a vague sense that "someone was watching over [her]," and she came to believe that "someone" would see her through her a r t h r i t i s as well. In the years since t h i s d i f f i c u l t period, Gwen has gone through several exacerbations of her a r t h r i t i s , several surgeries, and several h o s p i t a l i z a t i o n s . Though she has seen improvements through physiotherapy, these improvements have only been sh o r t - l i v e d . She has come to believe that "for some kinds of a r t h r i t i s nothing works." Nevertheless, Gwen says unequivocally that t h i s i s the best time of her l i f e . Hers i s a story of paradox: 101 only now that she has been stripped of a l l that she l i v e d f o r , only now that she has to "be a c o n t o r t i o n i s t to get into a dress," only now that she faces a degenerative disease f o r which l i t t l e seems to work, has she been able to f i n d peace. She says her l i f e i s "so sweet," "so calm," and she finds pleasure where she can: i n a book, i n the birds at her window, and " i n a good cup of coffee." Madeleine In 1985, when Madeleine was 35 years old, she developed sudden and severe swelling i n both of her index fingers. She had been camping recently, and at f i r s t thought that the swelling was due to something that had happened on the camping t r i p ; perhaps she had banged her fingers or had been b i t t e n by mosquitoes. But the swelling persisted beyond what Madeleine thought was a reasonable period of time, and she sought the advice of her doctor. Madeleine's diagnosis of rheumatoid a r t h r i t i s was very quick. Soon she developed pain and swelling i n her knees and feet as well. "I had flare-ups l i k e I could hardly walk," she says. " I t was just so p a i n f u l . I was very t i r e d . " 102 Madeleine started to read everything about RA that she could get her hands on. Much of what she read suggested that RA i s a hereditary disease, and looking at her own family's medical hi s t o r y she had l i t t l e trouble believing t h i s . "My mother had a r t h r i t i s , l i k e i n her 40s. And l i k e on her side of the family there were 13 of them, and both men and women, just about a l l of them had [rheumatoid] a r t h r i t i s . " Madeleine spoke to me i n brisk tones as she described how she t r i e d to adopt an unemotional, p r a c t i c a l stance toward her a r t h r i t i s : "When I got a r t h r i t i s I thought x w e l l I've got a r t h r i t i s , my mother l i v e d with i t , now I ' l l have to t r y to do my best'. I s t i l l f e e l that way. I can't say that I deny having a r t h r i t i s , but I don't accept i t e i t h e r . " Madeleine i s annoyed by the way that a r t h r i t i s i n t e r f e r e s with normal interpersonal i n t e r a c t i o n s : "I resent the fac t that some people before they say x H i , how are you?', they say *how i s your a r t h r i t i s ? ' . And i t ' s l i k e * a r t h r i t i s ? What a r t h r i t i s ? I don't have a r t h r i t i s ' . And I t r y to change the subject." She once attended an a r t h r i t i s support group meeting, and though she found i t very informative, she f e l t 103 alienated from the group because of her r e l a t i v e youth, and did not return. Besides, she i s not one to s i t around and complain. Madeleine c a l l s her approach to medical treatment "stubborn." Though she has t r i e d many medications she i s convinced that only one works, and that i n any case the side e f f e c t s of drugs are not worth t h e i r benefits; she does not want to add something l i k e a l i v e r problem to her l i s t of medical ailments. She has frustrated her doctor by discontinuing new medications a f t e r three or four months when she doesn't see impressive r e s u l t s . "Most of the time I was going without drugs," she says. "Then when i t would get r e a l l y , r e a l l y bad I went to see my doctor and then he'd say vyou just don't stay on the drugs long enough so we don't know'. But then I'd say *well by three months I should be able to f e e l better or whatever'." Lately, though, she has begun to accept her doctor's argument that although the drugs w i l l not arrest the a r t h r i t i s , they w i l l at least slow i t s progress. "I'm not sure I believe that but that's what they say. So I guess I'm not as stubborn as I used to be. I just f i n a l l y gave i n . " 104 Madeleine spent most of her time during our interviews describing her r e l a t i o n s h i p with her a r t h r i t i s , t a l k i n g i n a very strong, dispassionate manner. But a c e r t a i n question profoundly changed the tone of our interview; I asked "what was happening i n your l i f e around the time your a r t h r i t i s started?" Madeleine's expression changed completely; she looked as though she had been h i t i n the head with a brick. She turned the tape recorder o f f and her trembling l i p soon gave way to full-blown sobs. For a long while she could not speak. "I had a handicapped daughter," she f i n a l l y said. "She died three years ago when she was 14." When she was able to c o l l e c t herself Madeleine t o l d me the story of her daughter's i l l n e s s , a story she seldom t e l l s because the hurt i s s t i l l so deep. Inga was born a seemingly normal baby. She started to walk a l i t t l e l a t e at 15 months, but her doctor was unconcerned. By the time she was two years old, however, her neurological symptoms were pronounced enough that she was diagnosed as having cerebral palsy. Madeleine was d i s s a t i s f i e d with her daughter's diagnosis as i t did not seem to f i t with what she read 105 about cerebral palsy or with what the physiotherapists were saying. Further, whatever condition i t r e a l l y was seemed to be progressive i n nature. S t i l l , no further medical investigations were undertaken, probably because of the lim i t e d medical resources i n the small northern town where Madeleine's family l i v e s . By the time she was 8 years old, Inga was walking with the use of a walker, but she had much d i f f i c u l t y doing so because her legs were "s c i s s o r i n g " ; that i s , the spasms i n her adductor muscles that p u l l the leg i n at the hip were so strong that they were act u a l l y causing her legs to cross over each other i n v o l u n t a r i l y as she t r i e d to walk. She was sent to Children's Hospital i n Vancouver for surgery to address t h i s problem, but s p e c i a l i s t s here t r i e d instead to diagnose Inga's true problem. In addition to the symptoms that resemble those of cerebral palsy, Inga had others that had gone unexplained, such as "graying" around her eyes. The doctors f i n a l l y diagnosed her with Cockayne's Disease, a condition so rare that only 19 people i n North America have i t . The prognosis for Inga was poor: continued degeneration and death at an early age. 106 It was around the time of Inga's diagnosis with Cockayne's Disease that Madeleine f i r s t developed the symptoms of a r t h r i t i s . At the time Madeleine devoted her energies to Inga's care and did not stop to wonder about the e f f e c t that her stress had on her a r t h r i t i s . Inga's degeneration was rapid. Within a year she had l o s t her sight and was wearing a hearing a i d . "Her muscles deteriorated to the point that she was folded i n half l i k e an accordion... she went from being able to walk with a walker and being able to eat by herself and doing a l l those things to b a s i c a l l y doing nothing." At night Inga's condition required Madeleine to be up every 15 minutes or so, about 20 times per night. The r e s p o n s i b i l i t y f o r Inga's physical care rested squarely on Madeleine's shoulders, despite Madeleine's own physical problems. "Plus the worrying, I mean, just to see her l i k e that." Now that Inga has passed away, Madeleine's attention has f i n a l l y been able to s e t t l e on herse l f , and she has started to consider the role stress might have played i n the onset of her a r t h r i t i s . "I've heard so many people who say that they had a part of t h e i r 107 l i f e where they had so much str e s s , " she says. "I think that personally that's what triggered i t . " Now that Madeleine i s i n her 40s and has RA, she i s becoming more and more frightened as she r e f l e c t s on her mother's experience at the same age. Though her mother never complained and seldom even spoke of her a r t h r i t i s , the disease was evident i n the way she moved, i n the way she had to cut back on her sewing, her most cherished a c t i v i t y , at times. "I can think back of when my mom was i n her 40s, and sometimes I look at myself i n the mirror... i t ' s not that we just look a l i k e , but now I know that there was pain on her face, and i t was the pain of a r t h r i t i s . " Now that Inga i s gone, Madeleine i s able to see the pain on her own face. She f e e l s angry, and r a i l s at the i n j u s t i c e s that were done to her daughter and that are been done to her now. Asked i f anything good has come of her a r t h r i t i s she shoots back a h o r r i f i e d , emphatic "no!". The question "why me?" looms large i n her mind, and she has no answer for i t . "Why [some] people s u f f e r more than others [I have] no idea," Madeleine says. " I t just i s n ' t f a i r . " She searches i n her mind fo r l i f e - e v e n t s that might be 108 associated with subsequent misfortune, and comes up empty. Nothing she has done i n her l i f e leads l o g i c a l l y to where she i s now, f o r she had always t r i e d to l i v e a good l i f e , a healthy l i f e . Only h a l f - jokingly she says, "In another l i f e I ' l l be a drunk and a p r o s t i t u t e . " Stacey I f i r s t saw Stacey when I was waiting to t a l k to the charge nurse on the a r t h r i t i s ward, waiting for a suggestion as to a who might be interested i n p a r t i c i p a t i n g i n my study. The young c h i l d of one of the a r t h r i t i s patients had been injured s l i g h t l y when her father's e l e c t r i c wheelchair went astray, and Stacey was immediately on the scene tending to the wound and o f f e r i n g advice about f a c i l i t a t i n g i t s healing. She seemed very professional and knowledgeable, but she was dressed i n a long gown, and although the dress code f o r nurses at Pearson i s very relaxed, I did not think that she could have been one of the s t a f f . She bandaged up the l i t t l e g i r l and sent her on her way, then went into one of the patient rooms. When the ward nurse returned to the desk and I 109 asked her to introduce me to someone who might be w i l l i n g to be interviewed, I was introduced to Stacey. Forty-four-year-old Stacey f i r s t developed the symptoms of a r t h r i t i s i n 1986. At f i r s t she only had pain i n her back and i n her s a c r o i l i a c s , the j o i n t s between the spine and the p e l v i s . She had been working as a nurse i n the emergency department of a large Toronto hospital and at f i r s t a ttributed her pain to the very physical nature of her job. But when the pain persisted she began to look to other explanations. The hospital where she worked had a large t r o p i c a l diseases unit and her muscle aches were not inconsistent with a v i r a l i n f e c t i o n ; she began to wonder whether she had picked up some unusual virus i n the course of her work. Simultaneously, she began to wonder whether the h e p a t i t i s B vaccine that she had been required to take might have produced her symptoms. Diagnosis of Stacey's a r t h r i t i s took about a year. In that time several p o s s i b i l i t i e s had been investigated including polymyositis, lupus, and lymphoma. Although her pattern of symptoms was somewhat at y p i c a l because i t included, by t h i s time, inflammation of the shoulders, knees, and fingers, 110 Stacey was diagnosed with P s o r i a t i c A r t h r i t i s (PA). This condition i s very s i m i l a r to RA i n that i t i s a systemic, inflammatory form of a r t h r i t i s , but people who have i t have a skin condition (psoriasis) as well, and t y p i c a l l y have a d i f f e r e n t pattern of j o i n t involvement than people with RA. Stacey's physical tolerance f o r the heavy work and the 12-hour s h i f t s that her job required was markedly reduced as her a r t h r i t i s worsened. Her personal l i f e was strained as well because her sick father, whose care had been her r e s p o n s i b i l i t y , had died unexpectedly within months of the onset of her a r t h r i t i s . For the next three years she was only able to work on and o f f as she t r i e d to cope with her i l l n e s s and with the loss of her father. Away from work, Stacey f e l t stripped of her i d e n t i t y . From the time she was a l i t t l e g i r l she had devoted herself to learning as much as she could about nursing, voraciously reading her aunt's medical texts instead of doing things that were t y p i c a l f o r g i r l s of her age. When she became an adult, her nursing career was more important than anything else i n her l i f e : The one thing I did r e a l l y well was nursing. I mean I'm not married, I don't have any children. I l l Nursing was my l i f e . And so that was the thing that - i f I'd get up i n the morning and I wasn't having a good day, I could say that I ' l l be working i n emergency tomorrow and I ' l l shine there. Stacey's forced withdrawal from work thrust her into deep depression. The question "why me?" tormented her, and she looked everywhere f o r answers. She says that she i s Ch r i s t i a n , and for a long while thought that God must be punishing her f o r something. One day a f r i e n d said to her "you know you're smart and you r e a l l y love nursing. You must have been r e a l l y bad i n your l a s t l i f e because you're getting so badly punished [now];" t h i s comment started Stacey wondering i f there might be something to t h i s idea. At one point Stacey became involved with the Church of Jesus Christ, a f a c t that she i s now loathe to admit because i t i s i n d i c a t i v e of the desperation with which she searched f o r answers. Church members persuaded her to move out of her own apartment and into a communal house shared by other church members. There they t r i e d to r e c r u i t her as a nanny to the evangelist's children saying " t h i s i s what God wants you to do." The pressure mounted u n t i l f i n a l l y she 112 r e a l i z e d with a s t a r t that she had succumbed to a c u l t , and she quickly extracted herself from i t s hold. Meanwhile Stacey's a b i l i t y to work continued to decline u n t i l 1989 when she had to quit altogether. Over the three years that she had t r i e d to keep her job in the emergency department, support from her nursing peers and supervisors had deteriorated considerably. "Nursing doesn't take care of nursing," she says. "It' s not l i k e other professions where t h e y ' l l sort of crowd around and t r y and help you out. It' s not l i k e that i n nursing." When she f i n a l l y resigned, she received a very c r i t i c a l l e t t e r from her supervisor that was to have a devastating a f f e c t on her a b i l i t y to secure future employment. Many of Stacey's friends also abandoned her i n her i l l n e s s . "Suddenly you're not Stacey anymore. You're Stacey with an i l l n e s s . " She even began to question the basis of t h e i r friendships with her, and wondered whether they only wanted to be friends so long as she was able to give to them. " A0h gee, you know, she used to look a f t e r us when we had our children and when we were s i c k ' , " she imagines them saying. Stacey moved to Vancouver i n 1989. Her s i s t e r l i v e s here, but she turned out to be l i t t l e help or support. Partly, Stacey figures, t h i s i s because of the r e l a t i v e i n v i s i b i l i t y of her disease. But she also came to r e a l i z e that her s i s t e r was s t i l l grieving t h e i r father's loss, and was not emotionally prepared to allow that another loved one could be seriously i l l . In Vancouver, Stacey took a job as a venipuncturist with the Red Cross, believing that the work's physical demands would not exceed her a b i l i t i e s . When she was hired she made i t cl e a r to her supervisor that she was seeking t h i s work because her a r t h r i t i s precluded further work as an emergency room nurse. However, she soon discovered that one of her duties was to unload medical supplies from trucks, a task well beyond her a b i l i t i e s . Frustrated, but anxious to work, she did her best to perform as required, but had to quit a couple of months l a t e r . Her supervisor "made [her] sound l i k e the worst nurse i n the whole world and how could [she] ever possibly have made i t through so many years of ICU and emergency." She quit before she thought to apply for long-term d i s a b i l i t y benefits, and so began her descent into poverty. 114 By 1993 Stacey's a r t h r i t i s had progressed to the point that she was admitted to G.F. Strong f o r a period of intensive treatment. Her condition improved, and she decided to s t a r t applying for work i n the nursing f i e l d once again. Three hospitals turned down Stacey's applications, and she started to get angry, believing that she was being discriminated against because of her i l l n e s s . She l a i d complaints with the B.C. Human Rights Council against the three hospitals that had declined to h i r e her. She decided further to launch a l e g a l s u i t against her supervisor i n Toronto whose "reference" l e t t e r had so badly damaged her chances of f i n d i n g work in nursing. "I f e e l very strongly about what they've done to me," she says. "I can't just s i t and take i t because i t ' s l i k e acknowledging that I am what they say I am, that I'm no good, that I'm useless. That I've got a r t h r i t i s and how could I possibly be a good nurse anymore." The stress of f i g h t i n g her l e g a l b a t t l e s , of t r i p s to the welfare o f f i c e , of dealing emotionally with the loss of her beloved career, began to take i t s t o l l on Stacey. She began to notice that exacerbations of her 115 a r t h r i t i s tended to occur i n times of p a r t i c u l a r stress, and she began to wonder about the ro l e of stress i n bringing on her a r t h r i t i s i n the f i r s t place. She had always thought that she thrived on the high stress of working i n an emergency room, but on r e f l e c t i o n she started to think that perhaps she was just too busy to notice i t s physical e f f e c t s : In emergency they're coming i n so fa s t and they're so acutely i l l that you don't even have time to think of a l l the things that go on... l i k e you know you have to go out and t a l k to a family and say your father's just died... but, you know, f i v e minutes l a t e r you just clean up the room and you've got another trauma coming i n . But away from t h i s whirlwind pace she could f e e l the d i r e c t e f f e c t of stress on her body. Looking back, too, she remembered the stress of her father's i l l n e s s and death. She r e c a l l s that the night before he died she had taken her phone o f f the hook, not r e a l i z i n g that death was so near; perhaps he had t r i e d to reach her to say something to her, she says, and for that she i s f i l l e d with g u i l t . In the past few years, Stacey has come to believe that stress has played a part both i n the onset and the worsening of her a r t h r i t i s . Stacey s t i l l experiences periods of profound depression, and has even considered taking her own 116 l i f e . Yet she also experiences surges of firm resolve i n which she vows to make something good of her i l l n e s s . During the dark times she s t i l l struggles with the question "why me?", but i n the good times she thinks she can see an answer: I wonder i f maybe I've gotten t h i s because as a nurse I wasn't looking at [suffering] from inward. Now I can r e a l l y look at i t . Like I was always very understanding of people i n wheelchairs, I thought — u n t i l I got into one one day and I thought, My God, I had no idea i t was t h i s hard to work these things or no idea i t would be t h i s frightening to go i n a wheelchair across the road... And I can teach somebody else that... maybe [that's] what I ' l l do my thesis on. Stacey i s t r y i n g to view her i l l n e s s as something that w i l l make her a better nurse, and as something that w i l l nudge her into promoting systemic change i n the practice of nursing, change that focuses on the " a r t " of nursing rather than the "science" of nursing. Stacey s t i l l wrestles with the philosophical questions surrounding her i l l n e s s , but at the same time she continues to look f o r medical clues as to i t s etiology. Recently she had an opportunity to review her own medical charts, and the p o s s i b i l i t y that the he p a t i t i s B vaccine triggered her a r t h r i t i s has come to the fore f o r her once again. 117 As we parted ways Stacey t o l d me to c a l l her i f I ever needed any medical information. Caroline "In 1977, the beginning, I went to the doctor and he n o t i c e d — I noticed b e f o r e — t h a t my tongue was going a d i f f e r e n t way, going sideways." So began Caroline's story of her a r t h r i t i s . At the age of 14, Caroline, a native g i r l l i v i n g i n a small northern community, was forced to undergo painfu l diagnostic procedures, such as spinal taps, as doctors suspected that she had a brain tumour. Though Caroline's family was f r a n t i c with worry, Caroline was unperturbed, and she says now that the potential seriousness of what the doctors were saying was " l o s t on [her]," young as she was. She had heard from other people that stress could cause a r t h r i t i s , but hers was not merely the stress of worry. The physical stress of these procedures, Caroline believes, was also responsible for bringing on her a r t h r i t i s . Though she had been t o l d that her spinal tap would not be p a i n f u l , she found the procedure excruciating, perhaps, she says, because of the ineptness of the person performing i t . 118 Caroline says that t h i s causal theory was somewhere i n her consciousness when a discussion with a ce r t a i n nurse brought i t forward: She mentioned i t and i t r e a l l y got me to thinking because I heard other people t a l k i n g about something happened just before they found out they had a r t h r i t i s , something happened before that. Like a husband died, something. I t gets you to wonder, you know. I t can't be a coincidence. This theory has since been reinforced several times by fellow hospital patients: I t seems to me that a few people have said that stress has brought i t on, t h e i r a r t h r i t i s . Like a lady here had chickenpox. Right a f t e r she got chickenpox, she found out she had a r t h r i t i s . Within a few months of beginning the medical investigations, Caroline f e l t as though she were "walking on peas," and she woke up every morning with cramps i n her legs. Despite these a t y p i c a l complaints, i t was not long before doctors diagnosed rheumatoid a r t h r i t i s . The mystery of the crooked tongue has never been solved, though doctors t e l l her to watch f o r headaches and other symptoms that might suggest a brain tumour. For two years a f t e r her diagnosis, Caroline spent a week or so every month i n the h o s p i t a l , t r y i n g to calm her frequent flareups. Attending school was 119 d i f f i c u l t ; she could hardly step up onto the school bus, walking was exhausting, and her f r i e n d s ' lack of understanding made her f e e l i s o l a t e d . So, at age 16, she "just gave up" and quit school. Caroline r e c a l l s one p a r t i c u l a r day at around t h i s time when she started asking "why me?". She was walking down a h i l l f e e l i n g so much pain that she was praying to reach the bottom. She was at a point i n her i l l n e s s where she was constantly y e l l i n g at her brothers and s i s t e r s , and f e e l i n g l i k e a burden to everyone. The only conclusion that she could come up with then, and s t i l l the only answer she has, i s that she must have done something bad i n a past l i f e . Asked whether she i s joking when she says t h i s she r e p l i e s "no, I'm serious." The urge to ask the question eased somewhat when she met the man who was to become her husband. "I f e l t l i k e giving up, and then I met my husband. He's changed my l i f e . " At the age of 17 she married, became pregnant, and gave b i r t h to a daughter. She became pregnant, she says, because she had heard that " i f you're pregnant... your a r t h r i t i s stops i n most people." The opposite was true for her; she was required to cut back on her medication, her a r t h r i t i s , worsened, and she spent most of her pregnancy i n hos p i t a l . Caroline had a strong support network from which to draw when i t came time to care for her newborn. Her mother, s i s t e r , mother-in-law, and husband r a l l i e d around her, helping not only with the care of the baby, but with Caroline's return to school as well. Caroline managed to complete grade 10, but her knees and hips were rapidl y worsening, and she returned from school each day drained and unable to do anything else. She f e l t , too, as though her daughter barely knew her, because of her physical absence during the day and her physical and emotional withdrawal while at home. When she was 21 Caroline made her f i r s t t r i p to G.F. Strong. Her knees were so badly deteriorated by t h i s time that j o i n t replacement surgery was suggested, but she f e l t emotionally unprepared. She met another young woman with RA while i n ho s p i t a l , and u n t i l then she had not r e a l i z e d that there were any other young people with a r t h r i t i s . She f e l t some comfort i n knowing she was not the only one. She also met a r t h r i t i s patients who had r e l a t i v e s with RA; one woman in p a r t i c u l a r had a mother and a s i s t e r who also had RA. Though she knew of no a r t h r i t i s i n her own family, she started to believe that a r t h r i t i s has a genetic o r i g i n . The next 7 years were h e l l i s h f o r Caroline. Not only was her a r t h r i t i s progressively worsening, she was dealing with deep depression as well. She spent much of her time i n bed, unable to move, and found herself crying a l l the time. I t was during t h i s time that she started to pay attention to what made her a r t h r i t i s better and what made i t worse. Not su r p r i s i n g l y , she found that overuse, "physical s t r e s s , " made her jo i n t s f l a r e up. But she also noticed that c e r t a i n foods l i k e strawberries and bread, which she considers "acidy," made her a r t h r i t i s worse. Further, she started to consider hypotheses that she had read about; for example, she read i n Reader's Digest that a r t h r i t i s might be triggered by the amalgam used i n tooth f i l l i n g s . A fter these 7 years Caroline f i n a l l y mustered up the courage to return to Vancouver for j o i n t replacement surgery. Within a few months she had one 122 hip and both knees replaced. Though these surgeries eventually led to some functional improvement, her progress was slowed because she developed an i n f e c t i o n a f t e r having a root canal; t h i s i n f e c t i o n , she says, caused a flare-up of her a r t h r i t i s . The l a s t f i v e years have been f i l l e d with h o s p i t a l i z a t i o n s , with surgeries, and with the search for an e f f e c t i v e medication. Caroline's doctor recommended that she t r y methatrexate, a drug commonly used i n cancer chemotherapy. Stern warnings about not becoming pregnant accompany t h i s drug, and she was t o l d that she would have to have her tubes t i e d i f she were to take i t . The t e r r i b l e decision has weighed heavily on her the past couple of years. She i s very a f r a i d of dying and leaving her daughter alone, without a brother or s i s t e r . But more and more, the desire to have another c h i l d "seems l i k e an impossible dream." For the most part i t seems that Caroline has adopted a rather f a t a l i s t i c stance toward her a r t h r i t i s . At one point she went for surgery on her l e f t ankle because i t was very p a i n f u l , and grating so loudly that other people could hear i t . In the operating room the anesthesiologist commented that her 123 chart had "right ankle" written on i t ; rather than acting alarmed and i n s i s t i n g that they straighten out the mistake, she l e t i t go. "At the time I was undecided," she says, "so I figured ^that's f a t e ' . " Occasionally resistance swells up i n Caroline, pushing her to question the dictates of medical wisdom and making her say "I never want to be t h i s helpless again." But primarily, hers i s a story of worry, of a l i f e that peaked f a r too early. "I'm worried how I'm gonna make i t through the next part," she says. "How can you be thinking of 40 when you're 31? I always wonder how i t ' s gonna be because i t ' s already getting t h i s bad." Lorna Lorna, a native woman from a small northern community, f i r s t developed rheumatoid a r t h r i t i s at the age of 20, shortly a f t e r the b i r t h of her t h i r d c h i l d . She had had "one of the l a s t of the arranged marriages" at the age of 15, had married a man 11 years her senior, the son of her grandmother's dear f r i e n d . He was a drinker and a rock 'n' r o l l musician, and Lorna barely knew him, but she loved her grandmother very much, and wanted to please her. 124 Lorna and her s i s t e r had been raised by t h e i r grandmother. Their own mother had been rendered emotionally incapable of caring for children because her husband, Lorna's father, had died when Lorna was two-and-a-half. What made his death a l l the more unbearable was the f a c t that the couple had been forced to separate before his death. Because they both belonged to the Bear Clan they were forbidden to marry. The clan had forced them apart, and had sent Lorna's father to l i v e i n another v i l l a g e . Lorna's mother never f u l l y recovered from the loss of her husband. U n t i l Lorna was 12 years old she believed that her grandmother was her mother, and that her mother was her s i s t e r . I t was only a f t e r many years that Lorna was able to forgive her mother for abdicating her maternal r o l e ; Lorna's brothers and s i s t e r s were never able to forgive. When Lorna was 11 years old, her grandfather contracted tuberculosis. The re s t of the family was tested, and t h e i r r e s u l t s were negative. However, Lorna and her s i s t e r were forced to leave t h e i r grandparents, and were put into a Catholic r e s i d e n t i a l school. Lorna believes that authorities used her 125 grandfather's i l l n e s s as an excuse to require t h e i r removal from t h e i r grandparent's home. Lorna f e l t ambivalent about the r e s i d e n t i a l school. On one hand she resented the tyranny that had put her there, and wanted to be home with her grandparents. But on the other hand, she had a great a f f e c t i o n f or Bishop O'Grady, the man who governed the school. Under his d i r e c t i o n , Lorna's Catholic f a i t h flourished. Bishop O'Grady was held i n such high regard that when he r e t i r e d , "even the elders c r i e d . " His successor, Bishop O'Connor was not so well loved, and years l a t e r was charged with sexually assaulting some of the students i n his charge. As a g i r l , Lorna had had many dreams. She dreamed of becoming a lawyer, of becoming a master i n martial a r t s . But when Lorna was 15, her a i l i n g grandmother, f e a r f u l that she d i d not have much time to l i v e , f e l t that i t was time to pass the helm to Lorna. And so she arranged for Lorna to don the cloak of adulthood, of r e s p o n s i b i l i t y , and duty. She arranged for Lorna to be married to a man she barely knew, to become the family caretaker. 126 Lorna had always been destined for r e s p o n s i b i l i t y ; from an early age she had been groomed to become a t r i b a l elder. She granted her grandmother's wishes w i l l i n g l y , r e l i n q u i s h i n g her own aspirations i n the service of others. So, at the age of 20, she attributed her new diagnosis of rheumatoid a r t h r i t i s to stress. But hers was not a simple theory, t i e d up as i t was i n the notion that a r t h r i t i s can be overcome by a f i g h t i n g s p i r i t . She says that 3 of the 7 women who had a r t h r i t i s and were i n hospital with her when she was f i r s t diagnosed, have now experienced a remission, a f a c t that she attributes to t h e i r f i g h t i n g s p i r i t s . Asked why, with her own f i g h t i n g s p i r i t , she had not experienced a remission as well, she r e p l i e d that her s p i r i t had been weakened by "three kids and a rock 'n' r o l l husband," r e s p o n s i b i l i t y for a wide c i r c l e of family members, and the legacy of a youth abandoned. Lorna spoke of physical stressors as well. Her grandmother had pointed to the f a c t that she had spent some time as a tree planter; the cold and the damp must surely have contributed to the onset and the worsening 127 of the symptoms, she reasoned. Lorna accepts t h i s explanation, coming as i t does from her grandmother. The f i r s t few years a f t e r the onset of her a r t h r i t i s , Lorna became mired i n what she then thought was depression. Overwhelmed and unhappy, she struggled on with her new condition, and with the stresses that brought i t about. She now fe e l s ashamed at the way she was back then, at the f a c t that she l a b e l l e d her emotional state a "depression." She fe e l s she now knows, given the events of recent years, and her reaction to them, " r e a l " depression. The person that emerged from those early years was a character she c a l l s "Fighting Lorna." She made a resolution to learn as much as she could about a r t h r i t i s and to take what she learned to her people, many of whom suffer from a r t h r i t i s , and most of whom have l i t t l e access to good medical information and treatment. She also took i t upon herself to educate the new doctors, who undertook rotations i n her community every two years, about what kinds of issues and problems her people were facing. Once, when she figured a p a r t i c u l a r doctor did not know enough about a r t h r i t i s to be tr e a t i n g people, she sent him down to 128 Vancouver for more t r a i n i n g . Now, she says, "he knows just about as much as I do." Her friends started to c a l l her "Mrs. Ombudsman." In 1977 Lorna gave b i r t h to her youngest daughter. By t h i s time her a r t h r i t i s was quite bad, and for the f i r s t several years of her daughter's l i f e , when the requirement for physical care-taking was greatest, she could not care f o r her c h i l d h e r s e l f . I t was then that she started asking "why me?." Her friends t r i e d to console her, saying that she was meant for some higher purpose i n t h i s l i f e , a purpose that would not be impeded by a r t h r i t i s . Though she clung to t h e i r words she was hurting t e r r i b l y inside. Over the years Lorna has been heavily involved with the band council. Because she has such a tremendous knowledge of her people's heritage, and because she speaks her native language f l u e n t l y , she was nominated three times to become chief. She declined, however, because she f e l t she was s t i l l too young. Lorna says that when she was a c h i l d she only knew one person with a r t h r i t i s , her paternal grandfather. Now, she says, so many people have i t that i t seems 129 epidemic. She i s not sure whether genetics has played a r o l e , but f e e l s quite sure that the change i n the food that her people eat has contributed to the r i s e i n the incidence of a r t h r i t i s . But more importantly, Lorna f e e l s that i t i s the tremendous stress of l i v i n g on reservations, and of fe e l i n g stripped of c u l t u r a l i d e n t i t y , that has caused so much a r t h r i t i s i n the native people. The stress has not only led to a r t h r i t i s , i t has led to excessive drinking, which i n turn worsens the symptoms of a r t h r i t i s . Lorna speaks with great sorrow about the state of her people, and seems to see a r t h r i t i s not only as a consequence of t h i s sorry state but also as a sort of metaphor for the s p i r i t u a l c r i p p l i n g that has been experienced by the native people i n the l a s t few generations. In 1989 Lorna started to go on "elder t r i p s , " gatherings of native elders from across the province. Usually people are not i n v i t e d on these t r i p s u n t i l they about 60 years of age, and she was only 40. But the knowledge that she had, combined with her leadership experience and the grooming that her 130 grandmother had done, had prepared her early to become an elder, a position higher than that of a c h i e f . But Lorna's a b i l i t y to lead her people was c u r t a i l e d f o r a long period s t a r t i n g i n 1991. While i n hospital she witnessed a shooting at close range. That experience, coupled with the f a c t that her name and face were shown on t e l e v i s i o n coverage of the event (despite the p r o b a b i l i t y that the k i l l i n g was gang- related) put her into a profound depression from which she i s now just s t a r t i n g to emerge. She had a l l of the symptoms of Post-Traumatic Stress Disorder, according to her p s y c h i a t r i s t ; she had nightmares and panic attacks, and could not turn the l i g h t s out at night. The shooting incident even changed the way she thought of her a r t h r i t i s , dwarfing i t i n comparison. Now that Lorna i s s t a r t i n g to recover, she i s able to devote herself once again to her l i f e ' s work i n c u l t u r a l teaching and native leadership. She says that her purpose i n l i f e i s to bridge the gap between the native and non-native cultures, and to reach out to young native people, encouraging them to learn about and preserve t h e i r culture and heritage. Her grandmother always t o l d her that "everything has a 131 purpose," and the elders always say that the truth w i l l be revealed as one ages, that the pieces of the puzzle w i l l come together. LOrna has come to believe t h i s . Marilyn In 1991, at the age of 27, Marilyn was working i n the shipping and receiving department of a large hardware store, putting s t i c k e r s on merchandise with a price gun. The jo i n t s of her fingers started to swell and at f i r s t she thought that the r e p e t i t i v e motions of using the price gun were causing the swelling. But aft e r a while she started to worry that maybe i t was something else; as she explains i t i n her own folksy way, "oh these are awful sore to be doing that." Marilyn went to the doctor and was diagnosed almost immediately as having rheumatoid a r t h r i t i s . She had not known anyone with RA and has very l i t t l e knowledge of medicine, so she did not know what to expect. S t i l l she thought of her a r t h r i t i s as having been caused by overuse. Within a month of her diagnosis she started to get swelling i n her knees, elbows, and shoulders as well. Since then her a r t h r i t i s has been continually active; though some 132 times are better than others, the pain and inflammation have never l e t up. At f i r s t Marilyn had a tough time emotionally, and had no one she f e l t she could t a l k to about her a r t h r i t i s : "I f i n d i t hard [to have a r t h r i t i s ] when you are young 'cause you don't have someone to t a l k to, l i k e me and you, and saying xhey, how do you f e e l ? ' . Like we never d i d . " Her family was not emotionally supportive either; they believe i n keeping one's troubles to oneself. P r i v a t e l y , Marilyn spent much of her time crying and f e e l i n g very hopeless. Marilyn's f i r s t stay at G.F. Strong happened early i n the course of her i l l n e s s and was help f u l to her i n learning to cope with her a r t h r i t i s . " I t helped a l o t 'cause you would see worser people than you and would think *well i f they learned to l i v e with i t , and they are older, well I can, hey'." This idea that one just has to "learn to l i v e with i t " i s repeated so often i n Marilyn's story that i t i s l i k e a mantra. "Learning to l i v e with i t " means, i n part, learning to follow the instructions of doctors and books to the l e t t e r . Marilyn follows a r i g i d program of exercise and res t , believing that both have a 133 b e n e f i c i a l e f f e c t . She puts i c e on her j o i n t s regularly, and takes her medications exactly as directed. In fa c t , her adherence to the prescribed program has become her way of l i f e , taking up so much time that she barely has time f o r anything else. Paradoxically, t h i s focus on treatment takes her mind of f of that for which she i s being treated. " I t takes your mind o f f o f — I keep going, then you don't worry about things... l i k e f i r s t , when I got the rheumatoid a r t h r i t i s l i k e I worried xoh well, I got rheumatoid a r t h r i t i s ' and you would be stressed out, and you would cry, and that's no good." Though Marilyn at f i r s t denied that she thinks stress a f f e c t s her a r t h r i t i s , she went on to explain that i t i s important to have a p o s i t i v e outlook so that the a r t h r i t i s w i l l not progress: " l i k e you can't f e e l sorry 'cause you f i n d i f you do the s t r e s s — t h e a r t h r i t i s i s gonna get worse and you have to l i v e with i t . " So she d i s t r a c t s herself with her medical treatment, shuts the future out of her mind, and repeats her mantra. Marilyn's ways of coping with her a r t h r i t i s r e f l e c t the kinds of coping i n which her family-of- 134 o r i g i n engages. Asked i f her family had struggled through some d i f f i c u l t times Marilyn could think of nothing. But she l a t e r said that her father had l e f t her mother shortly a f t e r her own b i r t h , leaving her mother to care for 7 children alone. She seemed to have no appreciation of the s t r a i n her mother must have been under, saying only that her mother didn't complain about anything. But when I queried her about whether she saw any s i m i l a r i t i e s between how she was coping and how her mother coped she said that her mother "learned to l i v e with i t — l i k e me." The question "why me?" dogged Marilyn i n the early days of her a r t h r i t i s and she seems to have only one answer: she i s being punished for doing bad things, p a r t i c u l a r l y f i g h t i n g with her s i s t e r : "When I have the cortisone i n j e c t i o n , probably because I was mean to my s i s t e r , i t ' s payback time. She h i t s me on the shoulder and I said *0w, I just got my i n j e c t i o n , be nice'... I f i g h t with her a l l the time. Like we're a year apart. So now i t ' s payback time f o r her to get me." Such i s Marilyn's simple l o g i c . This explanation f i t s n i c e l y with her b e l i e f that she must simply swallow the f a c t that she has a r t h r i t i s and carry on as best she can, 135 ( i . e . , learn to l i v e with i t ) . S t i l l , Marilyn looks to her Catholic f a i t h for redemption. She prays to God that she might have a remission. Marilyn continues to f i l l her days with a c t i v i t i e s prescribed to her by her doctor. She t r i e d to return to her old job about a year a f t e r the onset of her a r t h r i t i s but couldn't cope; that experience convinced her that once you have a r t h r i t i s you are simply unable to work. Despite t h i s she remains quite p h y s i c a l l y active, swimming everyday and even cross-country s k i i n g occasionally. She sees herself continuing i n d e f i n i t e l y i n t h i s manner and del i b e r a t e l y t r i e s not to think too much about the future. Instead she has s e t t l e d into s t o i c resignation: "I'm doing better. Like I learned to l i v e with i t now, by getting used to the pain and how to cope with i t , and now i t ' s a routine. You got used to i t . " Jess Jess i s a 25-year-old Sikh woman, born i n London, England, and raised, for the l a t t e r half of her childhood, i n Canada. Though her parents hold on to Indian t r a d i t i o n s , she i s f a r from t r a d i t i o n a l herself. Whereas Indian t r a d i t i o n discourages g i r l s and women 136 from cutting t h e i r h a i r , for example, she shaves her head and dyes the stubble exotic colours when i t grows back. She engages i n body pierc i n g and has even had herself branded. She i s drawn to the underside of c i t y l i f e , saying she never wants l i f e to be "too easy." She a c t i v e l y rebels against structure and i n s t i t u t i o n s , and quit school i n grade 10 because she f e l t as though she were being indoctrinated. Five years ago Jess was working i n London at a new job she adored when she started to have symptoms. At f i r s t one knee became painful and, although she walked a l o t , she wondered whether she wasn't getting enough exercise because she was i n the habit of taking the London tube. Her l i v e - i n boyfriend became increasingly concerned as her symptoms worsened and spread, and i n the mornings he would say to her, "you were just l i k e a radiator l a s t night," r e f e r r i n g to her feverishness. Jess's condition deteriorated r a p i d l y . I t became harder and harder for her to get ready for work i n the morning and before long i t was taking her three hours. She t r i e d her best to conceal her d i f f i c u l t i e s but within a month or two her performance at work was su f f e r i n g enough that i t was remarked on by her 137 supervisor. He asked her whether she had started losing i n t e r e s t i n the job, and t o l d her that she needed to increase her e f f o r t as she was s t i l l only i n the probationary period of her employment. At her boyfriend's urging, Jess f i n a l l y saw a doctor a f t e r three months or so of progressively worsening symptoms. By that time, she says, she had inflammation " i n a l l my j o i n t s , and I have jo i n t s I didn't even know I had." The doctor ordered blood tests and c a l l e d her immediately, advising her to see a rheumatologist. But she was only two days away from a scheduled holiday back i n Canada, and she ignored her doctor's advice. She says now that she was very much in a state of denial, and that she just "pretended i t would go away." Besides, her boyfriend persuaded her that whatever was causing the symptoms might be s t r e s s - related and that a holiday would do her good. When Jess arrived i n Canada her mother thought she looked awful. But her mother's alarm was met with i r r i t a t i o n from Jess; she f e l t impatient with what she saw as her mother's t y p i c a l dramatic overreaction to things. S t i l l she consented to go to her father's doctor who gave her "run-of-the-mill" anti-inflammatory 138 drugs without a c t u a l l y looking f o r the cause of Jess's symptoms. A family t r i p to Calgary, i n what was supposed to be the l a s t week of Jess's 3-week holiday, f i n a l l y convinced her that she needed to get to the bottom of what was happening to her. The car t r i p was 14 hours long, with only occasional short breaks, and she st i f f e n e d up so badly that i t took several people to help her out of the car. Immediately upon her return to Vancouver Jess went to another doctor who t o l d her she needed to be admitted to hospital through emergency that same night. Her parents had to act u a l l y carry her out to the car; her pain was so bad that she could not coordinate her limbs well enough to walk. The orderly at the hospital asked i f she were i n f o r a coordination problem. "I thought I'd be out overnight," she says. "I was very, I guess, ignorant." The doctor diagnosed Jess with " p o l y a r t h r i t i s , " a non-specific term that simply means " a r t h r i t i s i n several j o i n t s . " She l a t e r learned that she has rheumatoid a r t h r i t i s . "None of us knew what that meant," she says. " I t wasn't something I could hang on 139 to, l i k e cancer or something. I had no idea what he was t a l k i n g about." But Jess quickly r e a l i z e d that her disease was serious; an occupational therapist came to see her i n hospital and spent four hours "bombarding" her with questions and information. "When she l e f t I burst into tears," Jess says. "The way she made i t sound she was giving me a l i f e sentence. I t was s t a r t i n g to dawn on me but I could [only] take i t i n b i t s and pieces, not l i k e she'd presented i t . " A f ter two-and-a-half weeks i n hospital Jess flew back to London, because that was where she f e l t her l i f e was. But because her "holiday" had been extended unexpectedly, she returned to no job and no place to l i v e . The stress of looking f o r work and a new apartment, plus the f a c t that she had discontinued her medications, "kept [her] i n a flare-up state f o r quite a long time." The permanence of her condition was s t a r t i n g to become a r e a l i t y f o r her: I t was a couple of months a f t e r that when I was l i v i n g pn my own, I found i t r e a l l y hard because I was s t i l l r e a l l y sick and I was s t i l l getting things l i k e fevers and my mobility s t i l l wasn't good. I started to r e a l i z e that maybe t h i s was something that I'd have to s t a r t adapting to. 1 4 0 Jess remained i n London for the next two years, only working off-and-on because she was so sick. Then, missing her friends and family, and t i r e d of the fr u s t r a t i o n of t r y i n g to get medical and s o c i a l services i n England's floundering economy, she decided to return home to Vancouver. Jess's return to her parents home delighted her mother whose l i f e ' s purpose as an Indian woman i s to care f o r her family. But Jess f e l t smothered by her mother, f e l t that she had been put i n an " i n v a l i d box." Her parents believe that a r t h r i t i s i s " i n your system" and that "something t r i g g e r s i t , " a b e l i e f i n l i n e with what Jess has heard and read, and a b e l i e f that she therefore espouses (though they think the t r i g g e r must have been the cold of London, a notion she r e j e c t s ) . But some of t h e i r ideas are less palatable to her; f o r instance, one of her aunts i n India was supposedly miraculously r e l i e v e d of her a r t h r i t i s by ingesting a plant that only grows i n India. Jess i s d e f i n i t e about not jumping to any treatment on the basis of anecdotal evidence: "I'm not there and I'm not about to go over for a treatment that I've only ever heard of done on one person." 141 Another thing that rankled Jess when she l i v e d with her parents was the tendency of r e l a t i v e s and friends, p a r t i c u l a r l y those newly-arrived from India, to come over to show t h e i r concern, then to t a l k to her parents about her i n her presence. "Women i n India [are] not seen as human beings i n society," she says. "There i s no reason why they should be talked to; they are either talked at or talked about. But they are not talked to as equals, e s p e c i a l l y by men." After eight months of l i v i n g with her parents she decided to s t r i k e out on her own. Over the past three years or so Jess has gone through periods of work, of unemployment, of ho s p i t a l i z a t i o n , and of s i t t i n g waiting f o r surgery. She worked for a year with the DisAbled Women's Network on a project dealing with suicide and disabled women. She was an active volunteer with an AIDS organization, and worked on a peer counselling video project f o r people with a r t h r i t i s . In general she has a strong in t e r e s t i n the advocacy issues of people with d i s a b i l i t i e s . "I've been t o l d from the beginning that I'm doing too much," she says. "A l o t of that's got to do with the fac t that I'm not 84 years o l d . " 142 Jess's concern f o r herself focuses less on the physical aspects of her a r t h r i t i s than on t h e i r s o c i a l and emotional consequences: I know the physical part of i t i s important, but I guess what gets me i s the other ways that i t has affected me. Because, l i k e , I'm a r e a l control freak. I f e e l I have less control over them than I do over what i t does to me p h y s i c a l l y . . . The f i r s t thing that I always state that i t has affected i s self-esteem. And then that branches off into other things. Like that's the core from which things l i k e not being able to work or not being able to go out or how I f e e l about myself emotionally or p h y s i c a l l y . After she had stopped denying her a r t h r i t i s she went through a long period of t r y i n g to conceal her a r t h r i t i s from other people. She d i s l i k e people's reaction to her when they learned she had a r t h r i t i s . She was a f r a i d of being babied, on one hand, but on the other hand she did not want her problems minimized either. Often on hearing that she had a r t h r i t i s people would say something l i k e "oh yeah, I had tendonitis i n my arm," not r e a l i z i n g the vast difference between a l o c a l mechanically-produced problem and a systemic i l l n e s s . She was a f r a i d , too, of things l i k e d being denied a job because of people thinking that they couldn't count on her. So she pushed on, denying her 143 pain to other people, and replacing v u l n e r a b i l i t y with attitude. The question "why roe?" makes Jess cringe because i t "reeks of hopelessness." When she hears of people asking t h i s question she f e e l s i r r i t a t e d and wants to say "get your s h i t together." For her i t i s a useless question that takes people away from dealing with p r a c t i c a l i t i e s : I don't think there's always a reason f o r something and l i f e i s too short going around looking for them i f they are not there. I'm not saying I didn't, but I guess the reasons I would look f o r would be more p r a c t i c a l . Like more things that I think that might have been i n my control that brought i t on. Like stress or foods that I eat, or the environment I l i v e i n . This focus on p r a c t i c a l i t i e s may be a product of her c u l t u r a l background. In India, she says, " d i s a b i l i t y i s the norm... because of things l i k e environment, poverty, and malnutrition, so people don't think twice about i t . " Jess s t i l l struggles with flare-ups and with the setbacks produced by lengthy h o s p i t a l i z a t i o n s . But she says she has learned something about her own inner strength from the experience of a r t h r i t i s : Now knowing that I have the strength that I have. Like before i t wasn't something that I would ever doubt, but I never had any cause to put i t into 144 action... I didn't know that I wouldn't give myself a p i t y t r i p and I didn't know that I wouldn't give i n to a l o t of things I didn't want to give i n t o . . . I didn't know that I wouldn't just get t i r e d of myself a f t e r awhile. I guess I r e a l l y didn't know what my attitude would be because a hypothesis i s something so d i f f e r e n t from what you have to l i v e with. Robin In around 1962, when Robin was 2 years old, she developed a fever, swollen j o i n t s , and symptoms suggestive of a strep throat. She was taken f i r s t to a family doctor, then to a s p e c i a l i s t i n in t e r n a l medicine. Several tentative diagnoses were offered, among them rheumatic fever and s c a r l e t fever. But her parents "were never happy with that because [the i l l n e s s ] did not resolve i t s e l f l i k e a virus would do... i n t h e i r experience s c a r l e t fever doesn't l a s t f o r a year, and rheumatic fever, i f i t does l a s t f or a year, c e r t a i n l y doesn't keep going on and on with a l l t h i s j o i n t involvement." When a new American s p e c i a l i s t came to town, Robin's parents took her to see him, hoping that he could shed some l i g h t on her ailment. Within 5 minutes of seeing her he pronounced her as having juvenile rheumatoid a r t h r i t i s . Though she l i v e d i n a small town an hour or two outside of Vancouver, she was referred to the A r t h r i t i s Centre 145 here for spe c i a l i z e d treatment, and she established with them a regular pattern of check-ups and treatments that continues to t h i s day. The p r e v a i l i n g wisdom i n the 1960s was that parents who have young children with a r t h r i t i s ought to trea t them as they would any other c h i l d , not givi n g them special treatment or p r i v i l e g e s . Robin's parents t r i e d to follow t h i s advice to the l e t t e r , though they found i t d i f f i c u l t to do so. She says: "They were, I think, always upset," because they knew so well her pain and her struggle. Though she did not know i t at the time, her parents hypothesized that her a r t h r i t i s had been triggered by chicken pox, by strep throat, or by the DPT vaccination. By the time Robin started school her a r t h r i t i s was phy s i c a l l y apparent: I looked d i f f e r e n t . I mean from the time I was about 6 years o l d I was s t a r t i n g to look a r t h r i t i c . I had a s t i f f neck that I couldn't move, I had sore and swollen knees, had puffy wrists and hands, and bent elbows, and, you know, that started f a i r l y early, and i t wasn't too deforming at that point, but I was very s t i f f and I moved s t i f f l y , my g a i t was s t i f f . . . and I f e l t l i k e I was sic k . Though she had four or f i v e good friends at school, her a r t h r i t i s was noticed by the other children and some of 146 the boys used to tease her and c a l l her names. Sometimes people would ask her how she got a r t h r i t i s and she would have to say "Nobody knows what causes i t , nobody knows why I have i t . 1 1 Robin was well aware that she was d i f f e r e n t from other children. "I saw myself as disabled," she says. Her physical l i m i t a t i o n s prevented her from p a r t i c i p a t i n g f u l l y i n school a c t i v i t i e s . When the class played team games i n gym cl a s s , for example, she was always appointed scorekeeper by the teacher. But, she says, "I did lose i n t e r e s t . I was a b i t of a daydreamer so I usually kept score and then I'd kind of s t a r t thinking about something and kids would y e l l at me xwhat's the score?'. And I'd go Agee, I don't know'." Things were not easy at home either. "I had a brother and a s i s t e r and often I would get more attention than they would," Robin says, "and they would f e e l r e a l l y r e s e n t f u l . So i t was sort of a d i f f i c u l t thing. I t was hard f o r me and i t was hard f o r my s i b l i n g s . " Her mother bore most of the r e s p o n s i b i l i t y f o r her considerable physical care, and had to endure 147 the constant f e e l i n g that her e f f o r t s were only torturous f o r Robin: I just couldn't move my j o i n t s i n the morning, and my mom would have to run a bath for me so that could a c t u a l l y become mobile enough so that I could a c t u a l l y walk to school. I remember having a bath every day from the time I was about 7 or 8 u n t i l the time I was a teenager. I would always have t h i s warm bath i n the morning and I'd go i n there and I'd not move very much and my mom would be coaxing me i n the tub "move a l i t t l e b i t , t r y to bend your knees, t r y to move your toes, t r y to bend your elbow, t r y to move your wrist", things l i k e that. And I used to cry. I remember crying a l o t . I remember crying at night because I was i n pain. I remember crying i n the mornings and not wanting to go to school, and my mom would have to force me out of the door with my l i t t l e lunch bucket and I remember crying sometimes as I was going out the door because I f e l t so t i r e d and I f e l t so much pain that I didn't want to go to school. Occasionally, even as a young c h i l d , Robin would s t a r t to wonder i f maybe t h i s were a l l i n her head, i f there were something wrong with her psychologically. Yet her many t r i p s to the doctor, and the serious concern of those around her seemed to refute t h i s p o s s i b i l i t y . So then she would s t a r t to think maybe i f she " t r i e d to be r e a l l y good, or maybe i f [she] t r i e d to work r e a l l y hard, i t would go away." She occupied herself with thinking that " i f [she] just found some key to t h i s puzzle [she] could unlock t h i s puzzle and everything would be changed." But at the same time something 148 inside her t o l d her that "lack of exercise didn't cause i t , or laziness didn't cause i t , so even as a l i t t l e c h i l d [she] kind of understood that there was not much [she] could do about i t . So [she] learned to l i v e with i t . " During her elementary school years Robin developed a r i c h fantasy l i f e , and she read books voraciously. At school she was a high achiever, and she also excelled i n her musical studies, developing a great fondness f o r the piano. High school introduced a whole new set of problems into Robin's l i f e . The physical demands on her were much greater because she had to use a locker, to change classrooms between subjects, and to climb s t a i r s f or a couple of classes. Also, her appearance became a much bigger issue for her and her poor self-image increased her sense of al i e n a t i o n from her peers. " I t just made i t hard," she says. "Especially when you are i n puberty and looks are so important and teenagers are always t r y i n g to look good for each other and f i t into groups and f i t into c l i q u e s . And then I think more than ever I f e l t on the outside." The physical d i f f i c u l t y , the exhaustion, and the sense of i s o l a t i o n 149 began to take t h e i r t o l l and her condition deteriorated rapi d l y . I t was at t h i s time that she began to notice a r e l a t i o n s h i p between the disease a c t i v i t y of her a r t h r i t i s and stress. Around t h i s time her s p i r i t s were at an a l l - t i m e low: I think by the time I was a teenager I b a s i c a l l y had almost given up. I had a very big chip on my shoulder at that point and f e l t that a f t e r having a l l t h i s a l l my childhood that there was no use f i g h t i n g t h i s disease anymore. I t was just gonna do what i t wanted anyway. So why exercise? And why make myself exercise because I would be i n more pain a f t e r exercising and I would s t i l l have nothing to achieve... i t was l i k e an u p h i l l b a t t l e and I was always s l i p p i n g back a l i t t l e more. I guess somewhere i n my head I always had sort of a sense of desperation. To add i n s u l t to injury Robin was forced to give up the piano because her fingers were so badly affected. This was the l a s t straw i n the great b a t t l e and i t was then that she started asking "why me?". For a long time she found no answer to t h i s question. Robin's condition deteriorated to the point that she had to be admitted to G.F. Strong f o r treatment. She c a l l s t h i s a r e a l turning point for her; she had grown up i n a small town, more i s o l a t e d than other children because of her a r t h r i t i s . She f e l t as though she were on a " b i t of an adventure because [she] was by 150 [her]self i n t h i s place with other adults and [she] could pretend to be an adult." Though she was a l i t t l e frightened by some of the people she saw there, e s p e c i a l l y young male patients who used drugs and engaged i n rowdy behaviour, the experience was a very good one for her. She learned a l o t about her disease and how to care f o r i t , and she also f e l t happy that her parents could have a break from her. At the age of 15 Robin became the youngest person ever at G.F. Strong to have hip replacement surgery. "There's a l i t t l e notoriety i n that!" she laughs. In f a c t , she says, she f e l t l i k e a r e a l c e l e b r i t y , getting a l o t of attention both from the s t a f f and the older a r t h r i t i s patients. After having f e l t i s o l a t e d f o r so many years, she r e v e l l e d i n a l l the attention that was showered upon her. She used to play her guitar and sing for other patients. But more importantly, she f e l t that she was i n a p o s i t i o n to help many of them: So many people were wracked with pain with a r t h r i t i s and dealing with getting the disease. I had i t so long i t was l i k e o ld hat to me by that time. I'd pretty well dealt with a l l these awful things early on i n my wee youth. I know that thinking back on i t possibly that maybe I gave people hope that just had the disease, that maybe had fears that they would become unhappy, b i t t e r people. They could see that a f t e r having the disease a long time you don't have to be unhappy and b i t t e r , that you could have a good q u a l i t y of l i f e . This experience started Robin thinking that she had an a b i l i t y to help other people, and she set her sights on becoming a s o c i a l worker. Robin had three more stays at G.F. Strong over the remainder of her high school years. These stays gave an unexpected boost to her s o c i a l status back home: I was a c e l e b r i t y i n my home because I was the only k i d i n my school that was allowed to take a month of f and go away without anything t e r r i b l e happening to them i n c l a s s . . . Because I was from a small town there was a l i t t l e b i t of "she's gone to the c i t y , she's gone to Vancouver for a whole month. How does she rate?"... They were kind of jealous. So i n a way the whole G.F. Strong thing sort of gave me a r e a l c e l e b r i t y status that I was badly i n need of at that time of my l i f e . A fter high school Robin was forced to attend a community college at f i r s t , rather than a univ e r s i t y , because her long absences from school had prevented her from keeping up with her French. She got good marks there, but her self-image problems v i s i t e d her once again, and she f e l t s o c i a l l y ill-equipped to be i n the college world. Nevertheless, she continued, taking s o c i a l science courses with the hope of tr a n s f e r r i n g to a univer s i t y s o c i a l work program. When she did transfer to a university, she not only f e l t s o c i a l l y 152 i l l - a t - e a s e , she f e l t academically unprepared as well. She had problems with roommates and trouble getting the courses she wanted, so when she was offered a job back in her hometown she quit school and returned home. So began a new phase i n Robin's l i f e . For the next two years she had a " r e a l l y good job" tutoring F i r s t Nations children. She was the f i r s t non-native person to be given such a position and she f e l t very p r i v i l e g e d . She learned much about the native culture during t h i s time, and s a t i s f i e d herself that t h i s was learning relevant to her ultimate goal of becoming a s o c i a l worker. Meanwhile she had taken up residence with her f i r s t r e a l boyfriend. At f i r s t her l i f e with him was happy but, as time passed, troubles overtook t h e i r r e l a t i o n s h i p . He went through a prolonged period of unemployment, and he and Robin were constantly harassed and manipulated by his former wife. She was l a i d o f f from her job and couldn't look f o r work because she was awaiting more surgery. When he eventually found a job he had to commute to another town to perform work which was only menial. 153 Towards the end of t h e i r r e l a t i o n s h i p , they moved to the basement of Robin's parent's home, large l y because she " f e l t safer there." "I think I r e a l l y knew in the back of my mind," she says, "that things were not gonna go well with us, and I wanted to be sort of safe." Six years into t h e i r r e l a t i o n s h i p , and two weeks a f t e r Robin had completed a 6-month f u l l - t i m e computer course, he l e f t her a note and she never saw him again. For the f i r s t year or so a f t e r the break-up Robin was devastated: My worst fears were r e a l i z e d . . . There's always been a b i t of anxiety where I'm concerned where either I would be abandoned because I'm a r t h r i t i c or I would have to deal with something so devastating to me that I couldn't f i g h t any longer, that my s p i r i t would just abandon me... I thought i t was going to happen when he l e f t me because I had r e a l l y been abandoned by someone. For the f i r s t time i n my l i f e I had r e a l l y been abandoned by someone I thought I loved. Her a r t h r i t i s had progressed considerably over the years that they had been together, and looking back Robin came to believe that t h e i r bad r e l a t i o n s h i p might have "kick-started" her "dormant" a r t h r i t i s . Then came another period of surgeries and r e h a b i l i t a t i o n ; she had a second knee replacement and coerced her surgeon into fusing both ankles at once, a 154 practice that i s extremely uncommon because i t leaves one completely unable to weight bear for an extended period of time. She managed to get an interview with a housing co-op which she attended i n a wheelchair with casts on both legs; " l e t ' s say I didn't have to work hard to get the place," she says. Within a couple of months she began a series of temporary jobs, and when those finis h e d , she was offered two jobs i n one week, both good jobs with major corporations. She chose the more a t t r a c t i v e of the two and she s t i l l works i n t h i s job. In the past f i v e years or so since she started to get her l i f e together, Robin has "come back to s p i r i t u a l i t y . " She attends church regularly and i s a strong believer i n the idea of free w i l l . She does not think i n terms of predestination, and therefore she thinks of her a r t h r i t i s as the "the luck of the draw." Through the patient education she has received she has come to think of her a r t h r i t i s as the product of a f a u l t i n the immune system, possibly genetically-based. Though moments of desperation s t i l l overtake her sometimes, o v e r a l l Robin has gained some peace i n her l i f e . She has l e t her goal of becoming a s o c i a l worker 155 s l i p away because she i s faced with the more immediate concerns of a woman surviving alone. Instead she has to be content with smaller things, giving to a homeless person on the street, for example, or contributing to the e f f o r t s of her church. She t r i e s to focus on the pos i t i v e , and says that i f she didn't have a r t h r i t i s she "wouldn't have met some very i n t e r e s t i n g people." 156 Chapter V: The development of causal models of a r t h r i t i s : The general story Overview In what has been one of the most complete studies of the causal a t t r i b u t i o n s of a r t h r i t i s patients to date, Af f l e c k , et a l (1987) summarized the a t t r i b u t i o n s i n tables with percentages given for each of several categories of investigator-predicted and investigator- defined a t t r i b u t i o n s . Such an approach gives no consideration to the development of explanatory models over time, to the l i f e events that coincide with the incorporation of causal elements into the model, nor to the complexity of the models themselves. Though the reader of such a study would notice, i f he or she added up the percentages given for each a t t r i b u t i o n , that some people were c i t i n g more than one cause, there i s no discussion of the i n t e r a c t i o n of causal variables i n people's causal models. Further, by c o l l e c t i n g data through questionnaires on a one-time basis, they have r e s t r i c t e d the range of responses they might get and have precluded the p o s s i b i l i t y f o r the thoughtful r e f l e c t i o n of t h e i r p a r t i c i p a n t s . 157 The present study, because i t employed open-ended interviews separated by considerable periods of time, gave the co-investigators the opportunity to present t h e i r own a t t r i b u t i o n s , without having to in t e r p r e t and f i t themselves into categories presented to them. I t also gave them the time to remember causal ideas that were sometimes teetering on the edge of conscious awareness, a f f e c t i n g the way they l i v e d t h e i r l i v e s , yet never being expressed ver b a l l y . The r e s u l t s of t h i s study indicate that people with a r t h r i t i s have very complex causal models, that expand over the course of the i l l n e s s , incorporating more and more diverse elements. Further, the models tend to develop i n a f a i r l y t y p i c a l way, with a focus i n the beginning on physical causes, moving toward the incorporation of stress as a causal contributor, and f i n a l l y towards the e x i s t e n t i a l , the cosmic explanation that addresses the question "why me?". I t i s important to note that these are not stage models; the f i r s t causal element i s not abandoned as the second causal element i s embraced, for example. Rather, the second element sums to the f i r s t and i s equally important i n producing symptoms. 158 The idea that several factors must be present at once i n order to t r i g g e r the onset of a r t h r i t i s was e x p l i c i t l y expressed by several of the co- investigators. Jess's mother, for example, said to her daughter "maybe you always had t h i s but i t just never triggered u n t i l you were 2 0 . " Sophie says "everything just sort of came together" to produce a r t h r i t i s . Tamara has a s i m i l a r idea, though more elaborate, when she says: A,B,C, and D,E,F must come together before i t i s activated. So what conditions activate i t ? Is i t the f a c t that I was working up north i n t h i s extreme cold? Was i t the fac t that I had spent a large part of my l i f e on an is l a n d i n the A t l a n t i c Ocean, cold A t l a n t i c current, warm current, fog? Did I have extra stress? And the combination of maybe f i v e factors that just made i t . This b e l i e f that multiple factors must be present i n order to t r i g g e r the a r t h r i t i s i s not present i n the beginning,, and only develops over time. Though several causal factors make up a causal model, the prominence of d i f f e r e n t factors varies over the course of the i l l n e s s . For example, a person might hold the b e l i e f that a r t h r i t i s has a genetic basis and that an environmental t r i g g e r i s necessary to produce symptoms, but may be focused, at some p a r t i c u l a r time, on the e x i s t e n t i a l "cause," say, the punishment f o r 159 wrongdoing. Though the physical, the psychological, and the e x i s t e n t i a l might seem to be very d i f f e r e n t planes of explanation, people seem to move quite f r e e l y between them, pausing on the one that seems most s a l i e n t to them at any given time. In general, the development of my co- investigators ' causal models proceeded from the physical through the psychological to the metaphysical. The expansion of the causal models was necessitated by the inadequacy of simple explanations, and by the accumulation of information that grew out of l i v i n g with a r t h r i t i s and observing the kinds of things that influenced i t s course; i n a sense, the co-investigators became s e l f - s t y l e d medical detectives, observing various environmental and psychological factors and noting the influence these factors had on t h e i r a r t h r i t i s . The expansion of the models was also necessitated by the quest for meaning, fo r an understanding of the place of a r t h r i t i s i n the universal order; for a l l but one of my co-investigators t h i s was as important a search as the more medically- oriented search f o r physical and environmental causes. 160 Though there i s a pattern to the way people's causal theories develop, there i s much d i v e r s i t y within each of the broad themes. The general story that follows should give a f e e l for both the s i m i l a r i t i e s and differences across the s t o r i e s of my co- investigators . In the beginning: A focus on the physical A l l of the co-investigators i n t h i s study looked f i r s t to physical causes to explain t h e i r symptoms. There may be several reasons for t h i s . F i r s t , i t i s customary to look for physical causes when we are injured or i n pain; when we burn ourselves we blame i t on something hot that has touched us, when we scrape ourselves we blame i t on f r i c t i o n . When we break a bone we do not look to psychological or e x i s t e n t i a l explanations. Before people are diagnosed with a r t h r i t i s they naturally engage i n the kind of a t t r i b u t i o n a l thinking that they would for any other kind of hurt. Even a f t e r they are diagnosed, they may not know much about inflammatory a r t h r i t i s , i t s nature and i t s prognosis, and so they continue to hold a very simple view as to i t s cause. Complicating matters further i s the f a c t that when many people think of 161 a r t h r i t i s they think of o s t e o - a r t h r i t i s , the "old age" form of a r t h r i t i s that r e s u l t s from mechanical wear- and-tear; t h i s may be why several of the co- investigators attributed t h e i r a r t h r i t i s , i n the beginning, to overuse, injury, or to working too hard. A second reason that people may look f i r s t of a l l to physical causes i s that the medical profession encourages people to do so. During the diagnostic phase people may be asked questions such as "did you injure yourself?", or "do you have a r t h r i t i s i n your family?". Further, the diagnostic process i s i t s e l f intensely physical, focusing on physical examination and laboratory blood t e s t s . A t h i r d reason that people may look f i r s t to physical causes i s that physical causes often o f f e r the hope of easy physical solutions; i f one touches something that i s too hot one need simply remove oneself to a l l e v i a t e the problem; i f one scrapes oneself, one just keeps the wound clean and waits f o r i t to heal; i f a bone i s broken one need simply have i t set and wait for i t to mend. For many people the r e a l i t y of an incurable, progressively worsening disease i s too much to countenance i n the beginning. 162 This reason may hold for those co-investigators who had the b e l i e f that t h e i r symptoms were caused by injury or overuse. Within the theme of physical causes four d i s t i n c t sub-themes emerged from the interviews: External causes. A va r i e t y of external causes were c i t e d by the co-investigators, many having to do with infectious agents. Two co-investigators pointed s p e c i f i c a l l y to ce r t a i n types of viruses, and one to the bacterium that causes strep throat. Vaccinations for tuberculosis, h e p a t i t i s B, and diphtheria-polio- tetanus were blamed by three d i f f e r e n t co- investigators . Two co-investigators attributed t h e i r a r t h r i t i s to physical hardship, Caroline to painful medical t e s t i n g , and Gwen to physical abuse. Another woman believed reports from the popular press that a r t h r i t i s i s caused by the amalgam i n tooth f i l l i n g s . C o n stitutional. Four of the women interviewed pointed s p e c i f i c a l l y to heredity as a causal factor i n the development of a r t h r i t i s , Marlene and Madeleine because they knew of people i n t h e i r family who had a r t h r i t i s , and Caroline and Tamara because they had 163 heard or read that a r t h r i t i s has genetic o r i g i n s . Two other women speculate that genetics may play a r o l e , but are unsure because they know of no one i n t h e i r families with a r t h r i t i s . Another three of the co-investigators believe that a r t h r i t i s i s " i n your system", but cannot be more s p e c i f i c about what they mean by t h i s . The way you are. Two of the co-investigators blamed transient physical states f o r the onset of t h e i r a r t h r i t i s ; Marlene thought she had developed a r t h r i t i s because she was overweight, and Gwen because she was menopausal. What you are doing. Five of the women interviewed said that they had been "overdoing i t , " working too hard or engaging i n r e p e t i t i v e or injurious a c t i v i t i e s around the time that t h e i r a r t h r i t i s began. Tamara and Lorna said that they had been working i n damp or cold environments. For Lorna and Diana, a r t h r i t i s followed very c l o s e l y a f t e r c h i l d b i r t h , and they point to t h i s as the p r e c i p i t a t i n g event. Of these two, one also said i t was genetic, and the other also said i t was " i n your 164 system," so even at the physical l e v e l m u l t i f a c t o r i a l hypotheses can a r i s e . Though the physical explanations are a t t r a c t i v e because of t h e i r s i m p l i c i t y , and because of t h e i r promise of " f i x a b i l i t y , " they are lacking i n some respects. If a r t h r i t i s i s c o n s t i t u t i o n a l , why does i t wait many years before i t becomes manifest, and what triggers the symptoms? If a r t h r i t i s i s caused by "overdoing i t , " why do the symptoms not subside when people rest? If a r t h r i t i s i s caused by a common infectious agent, why does not everyone who becomes infected develop a r t h r i t i s ? These kinds of questions i l l u s t r a t e the incompleteness of purely physical explanations for a r t h r i t i s , and the reason why people f e e l compelled to expand t h e i r causal theories. In the middle: The incorporation of stress into the causal model There i s a common assumption i n our culture that there e x i s t s an association between stress and i l l n e s s ; when we catch a cold we might say i t i s because we are "run down," f o r example. This assumption i s quite strong i n the culture of people with a r t h r i t i s , and there may be several reasons f o r t h i s . 165 F i r s t , the incompleteness of a purely physical causal model leads people to look for other factors, p a r t i c u l a r l y factors that explain why a r t h r i t i s symptoms present themselves at a p a r t i c u l a r time. Retrospection, i n most cases, leads to the i d e n t i f i c a t i o n of excessive psychological stress around the time of onset. For nine of the co-investigators, the stress was chronic i n nature. Marital and family dysfunction was held responsible by four of the women, and Madeleine, Marlene, and Tamara pointed to d i f f i c u l t family situations involving, respectively, a sick c h i l d , single parenthood, and r e s p o n s i b i l i t y overload. Stacey and Jess i d e n t i f i e d work stress as causal contributors, and Lorna, a F i r s t Nations woman, looked to the s t r a i n experienced by native people who have l o s t t h e i r culture and t h e i r i d e n t i t y . Three of the co-investigators c i t e d s p e c i f i c s t r e s s f u l events that coincided with the onset of t h e i r a r t h r i t i s . Diana gave b i r t h to a c h i l d though she loathed the thought of motherhood, Stacey's father died a f t e r a long i l l n e s s , and Madeleine's c h i l d was diagnosed with a f a t a l disease. 166 A second reason that people look to stress i s the prevalent b e l i e f i n the a r t h r i t i s culture that stress i s a causal factor. When people hear suggestions from medical personnel that stress might have triggered t h e i r a r t h r i t i s , as several of the co-investigators have, they are prompted to examine the psychological climate i n which they were l i v i n g around the time of onset. Further, when they hear from other people with a r t h r i t i s that they had had a l o t of stress around the time of onset, the b e l i e f i n the power of stress to t r i g g e r a r t h r i t i s i s strengthened. F i n a l l y , as mentioned, people with a r t h r i t i s often become astute observers of those things that a f f e c t the state of t h e i r a r t h r i t i s , things that cause t h e i r a r t h r i t i s to quieten down, and things that cause i t to f l a r e up. At l e a s t s i x of the co-investigators i n t h i s study believe that emotional stress exacerbates the symptoms of t h e i r a r t h r i t i s . I t i s a rather small leap of l o g i c to think that i f stress can cause a r t h r i t i s to f l a r e up, then perhaps i t can t r i g g e r a r t h r i t i s i n the f i r s t place i n those who are vulnerable. The causal models outlined i n Appendix D show that often stress w i l l move from the column l a b e l l e d "influences 167 incorporated into the model" to the column l a b e l l e d "causes incorporated into the model" as time passes. Towards the end: A consideration of the metaphysical Though the incorporation of stress into the causal model does much for people i n terms of elucidating the mechanism by which they developed a r t h r i t i s , the question "why me?" s t i l l l i n g e r s . An understanding of the disease mechanism does nothing to give meaning to the experience of a r t h r i t i s , and does nothing to address the question of why such a devastating disease would be v i s i t e d so u n f a i r l y upon someone. So people move beyond the physical and the psychological to look for the universal or cosmic reasons for t h e i r disease. A l l of the co-investigators have at some time i n the course of t h e i r i l l n e s s concerned themselves with the question "why me?" Only two of them, Jess and Sophie, got annoyed at themselves for asking t h i s question. The rest searched or continue to search i n earnest for an answer to t h i s question. Four of the women attributed t h e i r a r t h r i t i s to chance, although they had s l i g h t l y d i f f e r e n t ways of saying i t . Sophie used the word "chance" when she annoyedly dismissed the notion that a powerful being 168 might be conspiring to damn her with punishment or bless her with a higher purpose. Marlene and Robin put t h e i r fates down to "bad luck" and "luck" respectively, because they could think of no other explanation. Robin, i n p a r t i c u l a r , denounced the idea of pre- destination as i t i s contrary to her f a i t h . Diana described her a r t h r i t i s as a "quirk of fate," but i s profoundly u n s a t i s f i e d with t h i s answer and says that she wants to ask some serious questions of her maker. So although these four co-investigators a l l c i t e d chance as the "cosmic" reason f o r t h e i r a r t h r i t i s , they did so with d i f f e r e n t attitudes. Three of the co-investigators thought that t h e i r a r t h r i t i s was a punishment fo r wrong-doing, and a fourth considered the p o s s i b i l i t y . Marilyn's thinking was simple and c h i l d - l i k e — s h e thought she was being punished for f i g h t i n g with her s i s t e r . On the other end of the spectrum, Tamara embraced a r e l i g i o n that teaches that the su f f e r i n g of t h i s l i f e i s the consequence of wrong-doing i n a past l i f e ; her explanations are detailed and e l a b o r a t e — t h i s i s no passing notion for her. In f a c t she has b u i l t her l i f e around the b e l i e f that she has to bear the su f f e r i n g i n 169 t h i s l i f e i n order to be freed from i t i n the next. Tamara's story i s undeniably the most dramatic example of the kind of s h i f t i n world view that can occur with a d i s a b l i n g i l l n e s s . Caroline also believes that her a r t h r i t i s i s punishment for the sins of a past l i f e , but she has not developed a p a r a l l e l system of l o g i c the way Tamara has; instead the simple explanation s u f f i c e s . Three of the co-investigators reframed the experience of a r t h r i t i s as something that was purposeful or would ultimately lead to good. Lorna believes that "everything has a purpose," even i f we do not know what that purpose i s ; the native elders have persuaded her that the purpose for her l i f e w i l l be revealed to her as she ages. Though she struggles with the f e e l i n g that a r t h r i t i s has "kept [her] down," disallowing the f u l f i l m e n t of her l i f e ' s goals, she t r i e s to hold to the f a i t h that her true purpose i n l i f e w i l l be f u l f i l l e d . Gwen, who has endured so much suffe r i n g even beyond her a r t h r i t i s , has always believed i n the back of her mind that "someone i s watching over [her]." This b e l i e f saw her through years of t e r r i b l e abuse, and continues to give her hope 170 now; i n some ways i t i s akin to the notion that God never gives us more than we can bear. Stacey's raison d'etre has always been her nursing, and though she struggles with depression and despair, she i s kept a f l o a t by the b e l i e f that she has "something to learn," that her experience with a r t h r i t i s w i l l make her a better nurse. One might argue that the fa c t that one can learn something from the experience of a r t h r i t i s , f o r example, or the notion that the achievement of a higher purpose w i l l be f a c i l i t a t e d or prompted by a r t h r i t i s , are not causes of a r t h r i t i s , but rather are consequences. But these women, struggling to make sense of t h e i r s u f f e r i n g , want i t to be otherwise; they want to think that the universe i s ordered i n such a way that t h e i r a r t h r i t i s w i l l lead to ultimate good. Two of the co-investigators have no answer to the question "why me?", although, again, they f e e l d i f f e r e n t l y about the absence of an answer. Madeleine i s dealing not only with the fresh r e a l i t y of her a r t h r i t i s , but with the g r i e f of losing her young daughter as well. She i s extremely angry at the hand that has been dealt her and i s stunned by the i n j u s t i c e of i t a l l . She has no answer and she wants one. Jess, 171 on the other hand, says she f e e l s quite comfortable without an answer; i n f a c t she claims that there simply i s no answer and that the search for one i s not only useless, i t diverts attention away from influences, such as stress and foods, that are under one's contr o l . Influences incorporated into the models As noted at the beginning of t h i s paper, people have a powerful need to control, or at l e a s t anticipate, the occurrence of negative events. A l l of the co-investigators i n t h i s study r e a l i z e that the current state of medical knowledge does not hold a cure for t h e i r a r t h r i t i s , and none of them are waiting f o r a miracle. Instead, they concern themselves with factors that are at l e a s t p a r t l y under t h e i r control, things that make t h e i r a r t h r i t i s better or worse. Appendix F contains a f u l l l i s t i n g of the influences c i t e d by the co-investigators. Diana, Marlene, and Sophie a l l had a "delusion of reprieve" (Frankl, 1984, p. 28) at some point i n t h e i r i l l n e s s e s . Diana and Marlene had held f a s t to the idea that the recency of t h e i r diagnosis would spare them the degree of d i s a b i l i t y experienced by people whose a r t h r i t i s began before e f f e c t i v e treatment was 172 available. Diana, i n p a r t i c u l a r , has been stripped of t h i s delusion, and now says that eventually "you r e a l i z e you don't have as much control as you think you do." Sophie believed that the fac t that she received treatment early i n the course of her i l l n e s s meant that severe d i s a b i l i t y would be f o r e s t a l l e d . Surprisingly few of the co-investigators c i t e d medical treatment as something that influenced the course of t h e i r i l l n e s s . This may be because of the way I posed my questions, or i t may be because these women have a r t h r i t i s severe enough to warrant lengthy, and often repeated, h o s p i t a l i z a t i o n s , and therefore are a sel e c t group who f a i l e d to respond adequately to medical treatment. It i s also s u r p r i s i n g that only two of the women believe that environmental conditions influence the state of t h e i r a r t h r i t i s , given the prevalence of t h i s b e l i e f i n the general population. Marlene was non- s p e c i f i c when she said that the weather influenced her, but Sophie was more s p e c i f i c , saying that heat and changes i n barometric pressure worsened her a r t h r i t i s . A few of the influences c i t e d , such as the food one eats or one's l e v e l of physical exertion, are 173 simple and c l e a r l y within one's control. Some, such as pregnancy are transient, and others are e a s i l y addressed, such as the lack of estrogen, and i n f e c t i o n i n a tooth. By pinpointing these influences and taking appropriate action, the women gain a sense of control over t h e i r disease a c t i v i t y . Psychological influences were named by almost a l l of the co-investigators. Six women said that an increase i n stress produces a corresponding increase i n disease a c t i v i t y . This may be a somewhat s a t i s f y i n g explanation because periods of excessive stress are often transient, and because people experiencing stress can often do something about t h e i r stress, by dealing with i t s source, by removing oneself from the source, or by changing the way one sees the s i t u a t i o n , f or example. The influence of stress i s often mediated, i n the minds of the co-investigators, by personality or di s p o s i t i o n a l variables. An idea often mentioned i s that one has to have "willpower," or a " f i g h t i n g s p i r i t , " or "positive thinking" i n order to deal e f f e c t i v e l y with a r t h r i t i s . Interestingly, when people speak i n these terms, they are not speaking of the 174 importance of these a t t r i b u t e s when coping emotionally with t h e i r a r t h r i t i s , they are saying that these attributes a c t u a l l y influence the physical course of one's disease. The nature of the general story The general story i s one of the expansion of the causal model; i t moves simultaneously toward completeness and toward the recovery of meaning. As i t moves from purely physical explanations to those that incorporate the psychological, i t moves toward a more complete explanation of the etiology of the disease i t s e l f . As i t moves from the psychological to the metaphysical, i t moves toward an understanding of the place of a r t h r i t i s i n the cosmic order. Many of the women, upon hearing my introductory request that they t e l l me the story of t h e i r a r t h r i t i s as i f i t had a beginning, a middle, and an end, re c o i l e d at the idea that they might be ready to t e l l the end of t h e i r s t o r i e s . For many, the quest f o r meaning i s ongoing, and therefore the noological a t t r i b u t i o n s offered to me were only tentative, sometimes unsatisfactory, explanations. For some, the di r e c t i o n i s toward reconstruing the event of a r t h r i t i s 175 to make i t a po s i t i v e one. For others the d i r e c t i o n i s toward reconstructing one's world view, to seeing the world as a place i n which punishment follows orderly from wrong-doing, f o r example, or to seeing the world as a place where one's " f i g h t i n g s p i r i t " a c t u a l l y has an influence over the course of nature. In some cases, one's sense of purpose derives d i r e c t l y from one's altered world view; Tamara, f o r example, l i v e s her l i f e according to the causal forces she f e e l s are responsible for bringing on her a r t h r i t i s . In other cases, one l i v e s one's l i f e with the f a i t h that one's a r t h r i t i s i s intimately t i e d to some higher purpose, even i f that purpose i s as yet unknown. For others, a r t h r i t i s has taken away the s t r i v i n g f o r some grand goal, and has encouraged people to focus on and enjoy the simple things of l i f e , as Gwen says, a book, a b i r d at the window, and "a good cup of coffee." 176 Chapter VI: Discussion The r e s u l t s of t h i s study go f a r beyond what I expected at the outset. When I f i r s t considered doing research i n the area of a t t r i b u t i o n s , I wanted to see whether there i s a re l a t i o n s h i p between the kinds of noological a t t r i b u t i o n s people make and the way that they cope with t h e i r a r t h r i t i s . Yet simply determining what the att r i b u t i o n s are i s i n s u f f i c i e n t i n terms of understanding the meaning that people attach to them. A single a t t r i b u t i o n , such as punishment for wrong- doing, can mean vas t l y d i f f e r e n t things to d i f f e r e n t people, as t h i s study has shown. By focusing s o l e l y on the answers people generate to the question "why me?", I would have missed important clues i n t h e i r models of how the world operates. I would have missed, for example, the b e l i e f of many people i n the power of t h e i r own willpower to influence the forces of nature; I would have missed the sorting out of what factors people f e e l they have control over and what factors they f e e l they have no control over. At f i r s t I tended to disregard t h i s kind of information, thinking that i t was extraneous, but af t e r a couple of interviews I started to have f a i t h 177 that what my co-investigators were t e l l i n g me about physical and psychological causes was important to the movement of the story, and that i t contained important clues about the way people think the world operates. This meant returning to the co-investigators whose information I had arrogantly discarded, and l i s t e n i n g again to t h e i r s t o r i e s , t h i s time with the b e l i e f that what they were t e l l i n g me was relevant was indeed important. Summary of the findings The following constitute the major findings of t h i s study: 1. The causal models of the co-investigators developed i n a f a i r l y t y p i c a l way, with a focus f i r s t on the physical, then an incorporation of psychological factors, then a consideration of the metaphysical; 2. The causal models of the co-investigators are not stage models; the incorporation of a second element into the model expands the model, and does not replace the f i r s t element. Once incorporated into the model an element i s seldom subsequently rejected; 3. Within the framework of the general story, the elements of the physical, psychological, and 178 metaphysical themes vary s u b s t a n t i a l l y across causal models; 4. At various points over the course of the i l l n e s s , d i f f e r e n t elements of a co-investigator's causal model become more or less s a l i e n t to her; 5. The co-investigators are keen observers of the factors that influence the course of t h e i r disease; 6. Factors that were at one time considered "influences" on the course of a r t h r i t i s can come to be considered as "causes" with the passage of time; 6. At times the noological a t t r i b u t i o n s of a co- investigator's model can have a d i r e c t bearing on her stated purpose i n l i f e ; at other times the r e l a t i o n s h i p i s more tenuous; 7. To know what a co-investigator's a t t r i b u t i o n s are i s i n s u f f i c i e n t . Often, the co-investigators had very d i f f e r e n t attitudes about the same a t t r i b u t i o n . The l i f e scheme framework and the study's findings The s t o r i e s presented i n t h i s study conform to the framework of the . " l i f e scheme" (Thompson & Janigian, 1988). In each of the s t o r i e s the story's t e l l e r , the protagonist, describes how she views her s e l f and her circumstances; each story reveals something of how the 179 universe i s thought to operate ( i . e . , the t e l l e r ' s world view). Each story provides evidence of the goals of the protagonist, though i n many cases the goals are very simple, and may involve such things as maintaining a sense of optimism, or discovering the lessons that a r t h r i t i s has to teach. F i n a l l y , each story d e t a i l s those things that f r u s t r a t e or f a c i l i t a t e the attainment of goals. According the Thompson and Janigian (1988), the l i f e scheme provides the context for making at t r i b u t i o n s . L i f e schemes are cognitive representations of one's l i f e "which organize one's perspective on the world and oneself, goals one wishes to a t t a i n , and events that are relevant to those goals" (p.260). Cognitive representations of how the world i s perceived to operate might be c a l l e d one's world view. Attributions are p a r t i c u l a r instances of one's world view; they demonstrate how the p r i n c i p l e s of the world's operation might be applied to a p a r t i c u l a r s i t u a t i o n or problem. In t h i s study I use the framework of the l i f e scheme to provide a context for the co-investigators' a t t r i b u t i o n s . Within the l i f e scheme framework I have 180 chosen to focus on each co-investigator's world view, and more p a r t i c u l a r l y on the at t r i b u t i o n s f o r a s p e c i f i c problem, the problem of why that i n d i v i d u a l has a r t h r i t i s . The negative event of a r t h r i t i s provides a challenge to every aspect of an individual's l i f e scheme, including views about the world and oneself, as well as the p o s s i b i l i t y of achieving one's goals. The l i f e schemes presented i n t h i s study focus primarily on the challenge presented to one's world view by the onset and progression of a r t h r i t i s . Many people have po s i t i v e , benign assumptions about the way the world operates (Thompson & Janigian, 1988), and these assumptions are tested, and often discarded, when one i s burdened with a serious health threat such as a r t h r i t i s . Certainly, many of the co-investigators i n t h i s study express bewilderment at the i n j u s t i c e that has been v i s i t e d upon them, and are a c t i v e l y t r y i n g to re- order the way they see the world i n order to accommodate t h e i r a r t h r i t i s . Their l i f e schemes d e t a i l t h e i r evolving causal models and, i n so doing, describe 181 the evolution of t h e i r world views a f t e r the onset of a r t h r i t i s . The l i f e scheme, as conceived by Thompson and Janigian (1988), i s an account of the search for meaning. Interestingly, t h i s search for meaning occurs on two l e v e l s i n the l i f e schemes presented i n t h i s study. On a broader l e v e l the co-investigators' s t o r i e s are accounts of changing perspectives on s e l f , one's goals, and the world; they address a l l of the elements of a generic l i f e scheme. On t h i s l e v e l , they describe e f f o r t s to restore a sense of order and a sense of purpose a f t e r a negative event. On a second l e v e l , i f one follows a single thread i n the f a b r i c of the story, that of causal a t t r i b u t i o n s , movement towards the establishment of a sense of meaningfulness can e a s i l y be detected. As we witness the expansion of causal models from purely physical explanations to ones that consider the metaphysical, we are witnessing the grasping f o r meaning, for an explanation of how a r t h r i t i s f i t s i n the cosmic order. Though the co-investigators' l i f e schemes are the s t o r i e s of a search for meaning, not a l l of the co- 182 investigators f e e l that they have meaning i n t h e i r l i v e s ; indeed several of them struggle every day to keep from being overcome by depression. This does not mean, however, that the s t o r i e s presented here are deviations from the l i f e scheme framework. Thompson and Janigian (1988) say: Having an a t t r i b u t i o n f or a negative event i s not equivalent to finding meaning i n the experience. The lack of an a t t r i b u t i o n f o r an important event i s associated with the loss of meaning, but the a b i l i t y to i d e n t i f y a cause does not mean that one has found order and purpose i n the experience (p. 273) . The search f o r a cause i s one aspect of the search f o r meaning. Implications f o r counselling This study suggests that most people have a natural i n c l i n a t i o n to look f o r causes to diseases such as a r t h r i t i s . In part, t h i s causal search i s motivated by a desire to know what causes and influences the disease process i t s e l f , as such knowledge can, at times, impart a sense of contro l . However such knowledge seems to be i n s u f f i c i e n t for most people, as i t f a i l s to address the e x i s t e n t i a l issues that accompany serious i l l n e s s and d i s a b i l i t y . 183 The counsellor who treats c l i e n t s attempting to come to terms with a r t h r i t i s has many le v e l s of functioning to consider. For example, behavioral methods might be directed at the problem of pain management, in d i v i d u a l psychotherapy at problems such as depression, and family systems approaches at the marital and family problems that can arise as a consequence of a r t h r i t i s . This study suggests that many c l i e n t s have a need to resolve e x i s t e n t i a l problems as well as p r a c t i c a l ones. Some of the co-investigators i n t h i s study, such as Tamara and Gwen, f e e l at peace with the noological conclusions they have reached. Many others, however, f e e l i l l at ease with t h e i r tentative conclusions, and yearn f o r more s a t i s f a c t o r y explanations. I t was quite evident during the interviews that the co-investigators were very unaccustomed to speaking on the noological l e v e l . I t was equally evident that many appreciated the opportunity to do so; some made comments such as "I r e a l l y needed to have t h i s t a l k and here you are." Counsellors should recognize the e x i s t e n t i a l c r i s e s often provoked by i l l n e s s and 184 d i s a b i l i t y and give permission to c l i e n t s to explore the noological realm. Limitations of the study The major l i m i t a t i o n of the study relates to the small number of co-investigators who part i c i p a t e d . I t i s probably safe to assume that not a l l of the kinds of attr i b u t i o n s that people with inflammatory a r t h r i t i s might make were c i t e d by participants i n t h i s study. Further, no claims can be made that the proportions of people making a t t r i b u t i o n s of a ce r t a i n kind, f o r example, saying that t h e i r a r t h r i t i s i s punishment for wrong-doing, i s representative of what one might f i n d i n a larger group. Though the themes and the sequence of the general story f i t quite well for nearly a l l of the co- investigators i n t h i s study, one might expect that i n a larger study there would be a ce r t a i n proportion of people for whom i t does not f i t . The women i n t h i s study were a l l h o s p i t a l i z e d f o r t h e i r a r t h r i t i s , and are at the upper end of the spectrum with respect to the severity of t h e i r a r t h r i t i s . Perhaps people whose a r t h r i t i s i s less severe might not be i n c l i n e d to engage i n as intense an 185 a t t r i b u t i o n a l search as these women have been, and might have fewer elements i n t h e i r causal models. Certainly t h i s group of co-investigators does not constitute a representative sample. The demographics of the co-investigators i n t h i s study are so varied that i t i s impossible to come to conclusions about the influence, for example, of age on the kinds of at t r i b u t i o n s people make. Likewise I cannot comment on the influence of culture, marital status, occupation, or disease duration on the kinds of att r i b u t i o n s that were made. Implications f o r further research The l i m i t a t i o n s outlined above point to dire c t i o n s for further research. A t e s t of the general story with a larger group of co-investigators i s an obvious f i r s t step. Beyond that, studies that r e s t r i c t the range of cert a i n demographic variables, such as age, would help us to understand the influence of those variables on the kinds of at t r i b u t i o n s people make, and on the meanings behind those a t t r i b u t i o n s . I t would also be in t e r e s t i n g to do comparisons of broad groups, say comparisons of men and women with a r t h r i t i s , or adults and children, or children with 186 a r t h r i t i s and t h e i r parents. Such studies would give us an understanding of how these d i f f e r e n t groups re l a t e to t h e i r a r t h r i t i s . I would also be interested to see whether the framework of the general story applied to other degenerative diseases of unknown etiology, such as multiple s c l e r o s i s . Another d i r e c t i o n might be explore more deeply people's metaphysical a t t r i b u t i o n s , and the influence these a t t r i b u t i o n s have on the way people l i v e t h e i r l i v e s . The r e s u l t s of t h i s study suggest that such an investigation would require a very thorough exploration of the meanings attached to the a t t r i b u t i o n s , as the same a t t r i b u t i o n can mean d i f f e r e n t things to d i f f e r e n t people. A footnote: What the medical profession says about the etiology of a r t h r i t i s How close are the co-investigators, i n t h e i r theorizing about what causes a r t h r i t i s , to the ways i n which medical professionals theorize about the same thing? Medsger and Masi (1985) state that "most chronic acquired [rheumatic] diseases are now believed to re s u l t from the int e r a c t i o n of multiple factors related 187 to the host, environment, and, at times, i n f e c t i n g agents" (p.9). Thus, l i k e the co-investigators, medical researchers are looking at m u l t i f a c t o r i a l models of etiology f o r a r t h r i t i s . With regard to genetic influences Medsger and Masi (1985) say, "analysis of twin and family studies confined to probands with erosive seropositive a r t h r i t i s showed a s i x - f o l d increase i n RA prevalence among s i b l i n g s or dizygotic twins versus controls" (p. 13). Z v a i f l e r (1985) says that "although the pathology of RA i s undoubtedly related to an inflammatory response involving the immune system, the i n i t i a t i n g event that t r i g g e r s t h i s response i s most l i k e l y a s p e c i f i c e t i o l o g i c a l agent" (p.557). Among the s p e c i f i c e t i o l o g i c a l agents being investigated are various types of bacteria, and various types of viruses. The r o l e of stress i n the onset of a r t h r i t i s has also been investigated. According to Banwell and Z i e b e l l (1985), " i t has been suggested that psychological and b i o l o g i c a l variables i n t e r a c t to influence the onset, pattern, and course of rheumatoid a r t h r i t i s . In a group of adult monozygotic twins, a l l of whom were discordant for rheumatoid a r t h r i t i s , 188 evidence was found for stress as the i n i t i a t i n g factor i n those who developed rheumatoid a r t h r i t i s " (p. 506). Another study concluded that although the ro l e of psychological factors i n the development of RA i s unclear, psychological factors do appear to play an important r o l e i n i t s course (Anderson et a l . , 1985). According to Medsger and Masi (1985) sex plays a ro l e as well: "sex-related host factors seem to play an important r o l e i n determining the onset and severity of RA. This concept i s consistent with recognized pregnancy-induced remission and post-partum exacerbation or new onset of RA." Some of the co-investigators i n t h i s study have made e x p l i c i t reference to medical professionals as sources of e t i o l o g i c a l information, and have had varying l e v e l s of understanding of what they have heard. Others have c o l l e c t e d ideas about etiology from other people with a r t h r i t i s , who, i n turn, may have received information d i r e c t l y from medical professionals. S t i l l others have reached conclusions based on observation, i n much the same way that medical professionals form hunches on the basis of c l i n i c a l observation. 189 References Affleck, G., P f e i f f e r , C , Tennen, H., & F i f i e l d , J . (1987). A t t r i b u t i o n a l processes i n rheumatoid a r t h r i t i s patients. A r t h r i t i s and Rheumatism, 30, 927-931. Anderson, K.O., Bradley, L.A., Young, L.D., McDaniel, L.K., & Wise, CM. (1985). Rheumatoid a r t h r i t i s : Review of psychological factors r e l a t e d to etiology, e f f e c t s , and treatment. Psychological B u l l e t i n . 98 f 358-387. Baider, L., & S a r e l l , M. (1983). Perceptions and causal a t t r i b u t i o n s of I s r a e l i women with breast cancer concerning t h e i r i l l n e s s : The ef f e c t s of e t h n i c i t y and r e l i g i o s i t y . Psychotherapy and Psychosomatics. 39 . 136-143. Banwell, B.F., & Z i e b e l l , B. (1985). Psychological and sexual health i n rheumatic diseases. In W.N. Kelley, E.D. Harris, S. Ruddy, & C.B. Sledge (Eds.), Textbook of Rheumatology (2nd ed., pp. 497-510). Philadelphia: W.B. Saunders. Berkow, R., (Ed.). (1987). The Merck manual of diagnosis and therapy. Rahway, NJ: Merck Sharp and Dohme Research Laboratories. Bulman, R.J., & Wortman, C. (1977). At t r i b u t i o n s of blame and coping i n the r e a l world: Severe accident victims react to t h e i r l o t . Journal of Personality and Social Psychology, 35, 351-363. Bury, M. (1982). Chronic i l l n e s s as biographical disruption. Sociology of Health and I l l n e s s , 4 f 169-184. Bury, M. (1991). The sociology of chronic i l l n e s s : A review of research and prospects. Sociology of Health and I l l n e s s . 13, 451-468. Carpenter, C. (1991). The experience of spinal cord injury as transformative learning. Unpublished master's t h e s i s . University of B r i t i s h Columbia, Vancouver. 190 Cochran, L. (1990). The sense of vocation. New York: State University of New York Press. Frank, R.G., Beck, N.C., Parker, J.C., Kashani, J.H., E l l i o t , T.R., Haut, A.E., Smith, E., Atwood, C., Brownlee-Duffeck, M., & Kay, D.R. (1988). Depression i n rheumatoid a r t h r i t i s . Journal of Rheumatology, 15, 920- 925. Frankl, V. (1984). Man's search for meaning. New York: Washington Square Press. Frankl, V. (1969). The w i l l to meaning. New York: Meridian. Genest, M. (1983). Coping with rheumatoid a r t h r i t i s . Canadian Journal of Behavioural Science, 15, 392-408. Gotay, C.C. (1985). Why me? Attributions and adjustment by cancer patients and t h e i r mates at two stages i n the disease process. Social Science and Medicine, 20, 825-831. Haight, B. (1991). Reminiscing: The state of the art as a basis f o r pract i c e . International Journal of Aging and Human Development, 33, 1-32. Hammersley, M., & Atkinson, P. (1983). Ethnography: P r i n c i p l e s i n pract i c e . New York: Tavistock. Jaber, R., Steinhardt, S,, & T r i l l i n g , J . (1991). Explanatory models of i l l n e s s : A p i l o t study. Family Systems Medicine, 9, 39-51. Jenkins, R.A., & Pargament, K.I. (1988). Cognitive appraisals i n cancer patients. Social Science and Medicine, 26, 625-633. Kleinman, A. (1988). The i l l n e s s narratives. New York: Basic Books. Lazarus, R.S., & Folkman, S. (1984). Stress, appraisal and coping. New York: Springer. 191 Lerner, M.J. (1980). The b e l i e f i n a just world: A fundamental delusion. New York: Plenum. Marshall, D. (1993). The experience of dental avoidance. Unpublished master's t h e s i s . University of B r i t i s h Columbia, Vancouver. Medsger, T.A., & Masi, A.T. (1985). Epidemiology of rheumatic diseases. In D.J. McCarty (Ed.), A r t h r i t i s and a l l i e d conditions: A textbook of rheumatology. (pp. 9-39). Philadelphia: Lea and Febiger. Mishler, E.G. (1986). Research interviewing: Context and narrative. Cambridge: Harvard University Press. Moos, R.H., & Solomon, G.F. (1964). Minnesota Multiphasic Personality Inventory response patterns i n patients with rheumatoid a r t h r i t i s . Journal of Psychosomatic Research, 8, 17-28. Moscowitz, R.W. (1971). Psychosocial aspects of rheumatoid a r t h r i t i s . Journal of the Albert E i n s t e i n Medical Center, 19, 36-39. Pargament, K.I., Ensing, D.S., Falgout, K., Olsen, H., R e i l l y , B., Van Haitsma, K., & Warren, R. (1990). God help me: (1): Religious coping e f f o r t s as predictors of the outcomes of negative l i f e events. American Journal of Community Psychology, 18, 793- 824. Poulton, J . , & Strassberg, D. (1986). The therapeutic use of reminiscence. International Journal of Group Psychotherapy. 36 r 381-398. Reisine, S. (1993, November). Access and gender: General issues and application to a r t h r i t i s care and research. Paper presented at the A r t h r i t i s Health Professions Conference, San Antonio, TX. 192 Robinson, I. (1990). Personal narratives, s o c i a l careers and medical courses: Analysing l i f e t r a j e c t o r i e s i n autobiographies of people with multiple s c l e r o s i s . Social Science and Medicine. 30. 1173-1186. Russell, R. (1991). Narrative i n views of humanity, science, and action: Lessons for cognitive therapy. Journal of Cognitive Psychotherapy, 5, 241- 256. Schussler, G. (1992). Coping strategies and ind i v i d u a l meanings of i l l n e s s . Social Science and Medicine, 34, 427-432. Sholomskas, D.E., & S t e i l , J.M. (1990). The spinal cord injured r e v i s i t e d : The re l a t i o n s h i p between s e l f - blame, other-blame and coping. Journal of Applied Social Psychology, 20, 548-574. Smith, C.A., & Wallston, K.A. (1992). Adaptation i n patients with chronic rheumatoid a r t h r i t i s : Application of a general model. Health Psychology. 11. 151-162. Stien, J . (Ed.). (1983). Random House dictionary of the English language. New York: Random House. Solso, R.L. (1988). Cognitive Psychology (2nd ed.). Toronto: A l l y n and Bacon. Swain, D. (1990). Withdrawing from professional sport. Unpublished doctoral d i s s e r t a t i o n . University of B r i t i s h Columbia, Vancouver. Thompson, S.C., & Janigian, A.S. (1988). L i f e schemes: A framework for understanding the search for meaning. Journal of Social and C l i n i c a l Psychology, 7. 260-280. Timko, C , & Janoff-Bulman, R. (1985). Att r i b u t i o n s , v u l n e r a b i l i t y , and adjustment: The case of breast cancer. Health Psychology, 4, 521-544. 193 Viney, L., & Bousfield, L. (1991). Narrative analysis: A method of psychosocial research for AIDS- affected people. Social Science and Medicine, 32, 757- 765. Williams, G. (1984). The genesis of chronic i l l n e s s : Narrative reconstruction. Sociology of Health and I l l n e s s , 6, 175-200. Wong, P., & Weiner, B. (1981). When people ask xwhy' questions, and the h e u r i s t i c s of a t t r i b u t i o n a l search. Journal of Personality and Social Psychology r 40. 650-653. Zautra, A.J., & Manne, S.L. (1992). Coping with rheumatoid a r t h r i t i s : A review of a decade of research. Annals of Behavioral Medicine, 14, 31-39. Z v a i f l e r , N.J. (1985). Etiology and pathogenesis of rheumatoid a r t h r i t i s . In D.J. McCarty (Ed.), A r t h r i t i s and a l l i e d conditions: A textbook of rheumatology. (pp. 557-570). Philadelphia: Lea and Febiger. 194 A p p e n d i c e s CO X II II >c cn co go cn X II II M to co «3 to cn X II II CO M Cn. Cn C-4 S o CO tr1 S S H3 D O CO CD 0) (1) o r t o OJ OJ OJ F - c O M hj hf cr 0J hi a hi 3 OJ CD W F- 0 F- O 3 CD M OJ 3 3 tr H 3 fO OJ CD l-i OJ F - >< F- •< CD CD 3 ne  F - 3 CD r O N j M K S C O M W W C O U J i f e C n O ~J U l O O I O O l O t O P * . 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I remember t h i s hike very v i v i d l y , because at one point we came upon a g r i s l y scene; someone had slaughtered about twenty rabbits, and t h e i r dismembered bodies lay strewn c a r e l e s s l y about, staining the snow blood-red. We were out i n the woods for several hours, much longer than reason might have allowed given the cold, and I remember saying to one of the leaders that I had l o s t the f e e l i n g i n my feet. One of the other g i r l s decided to t e s t whether or not t h i s were true, and stomped as hard as she could on my r i g h t foot. Within a few weeks of t h i s hike my r i g h t ankle started to swell and ache. I would wake up i n the middle of the night and go sobbing into my parents' room. My mother was quite dismissive at f i r s t , regarding these episodes as plays f o r attention, a reaction that b a f f l e s me to t h i s day, but my persistence as well as my hugely swollen ankle eventually persuaded her to take me to the doctor. 197 After taking x-rays the doctor t o l d us that my ankle was fractured and put my foot i n a cast. I t was a l l quite confusing; when the kids at school asked me how I had broken my ankle I had to say "I don't know". A few weeks l a t e r when I returned to have the cast removed, my ankle s t i l l as swollen and painful as ever, the doctor t o l d us that i n fac t my ankle was not fractured and that I needed to have some blood t e s t s . My doctor interrogated my mother and me i n a frustrated search for an explanation of my condition, but the only explanation we were able to o f f e r him was that I had frozen my feet on a Brownie hike, and that some g i r l had stomped on my r i g h t foot. It took several tests and several weeks, i f not months, to f i n a l l y a r r i v e at a diagnosis of rheumatoid a r t h r i t i s . I remember that on the way home from the doctor the day I was given my diagnosis, my mother stopped at the grocery store, and I stayed i n the car while she went i n . I had no idea about the implications of what I had just been t o l d , but I sat there stunned, my body buzzing. I was not altogether unfamiliar with rheumatoid a r t h r i t i s as my grandfather had a very severe case of 1 9 8 i t . I f i r s t started to know him when I was around eight years old as our family had l i v e d overseas before then. He was t a l l and t h i n , and moved with d i f f i c u l t y , but what r e a l l y struck me was the way his hands looked. The j o i n t s of his fingers were huge, and they jutted t h i s way and that way i n strangely unnatural angles. "Why don't the doctors f i x his hands?", I implored my parents. They explained that Grandpa's a r t h r i t i s was as bad as i t was because of the horrendous conditions he had had to endure as a s o l d i e r i n World War I I . They further explained that his condition was beyond repair because i t was so longstanding. When we returned from our f i r s t v i s i t to his home i n Kelowna I t o l d my friends about my grandfather's hands with the same intonation i n my voice that I might have used were I describing some grotesque creature from a Saturday matinee. For the f i r s t year a f t e r my diagnosis, my a r t h r i t i s was confined to my ankles and I looked completely normal, except f o r my crutches. When we v i s i t e d my grandparents at Easter that year, my parents asked me not to use my crutches, an odd request since I was forever meeting with resistance from them when I 199 suggested the same thing. When I asked why, they t o l d me that my grandfather would be upset i f he knew I had a r t h r i t i s . On one hand, I understood t h e i r concern; t h i s was a man so sensi t i v e that he would not allow cut flowers i n his house because he could not bear to watch them die. But the secrecy that was requested of me somehow changed the way I looked at my own a r t h r i t i s ; i t was at that time that I started to sense how serious i t might become. My grandmother was seriously i l l that year, and we knew that her condition was terminal. My father t o l d me that Grandpa had said to him out i n the garden that summer, " i f your Mom's not here to see these flowers i n the spring, I ' l l take them to her". I didn't understand what that meant, and when I asked my father to explain, he t o l d me that, l i k e animals, when people lose the w i l l to l i v e , they die. We moved to V i c t o r i a at the beginning of the next school year, and I was quite traumatized by the move. No longer were we l i v i n g on an a i r force base where everybody's dads worked together, and where children were accustomed to making new friends because they moved so often. The children i n my new class had 200 progressed through school together since kindergarten, and were not welcoming to newcomers. I had only one f r i e n d that year, the other new g i r l i n the c l a s s , and she drove me to the point of desperation with her compelling need to surprise me with broad brushstrokes of rubber cement to my arms. Shortly a f t e r school started that year, my a r t h r i t i s started to spread. I t h i t my knees, my shoulders, my elbows and my hands. Even my jaw was so affected that I could hardly move i t . I remember one morning before school I sat down on the f l o o r to put my shoes on, and when I t r i e d to get up I couldn't. My father was anxious to get going, and t o l d me to hurry up so we wouldn't be l a t e . I t r i e d r o l l i n g on to one knee, and then the other, and then back again. My hands were of no help to me. "I can't get up", I said. A look of what I thought was anger flashed across his face. "What do you mean you can't get up?", he said g r u f f l y , "get up r i g h t now!". As an eleven-year- old I did not r e a l i z e that fear sometimes sounds l i k e anger. That was a miserable year f o r me. At a time when my peers were becoming more and more independent, I 201 couldn't even put my own socks on. My a r t h r i t i s alienated me further from my classmates. Once, when the class was walking down the h a l l to the l i b r a r y , Floyd, the most popular boy i n the c l a s s , noticed me limping and sneered, "can't you walk yet?". Everyone laughed as they were supposed to, and I became Floyd's personal popularity meter. When I asked my mother why my a r t h r i t i s had become so bad, she t o l d me that stress could cause flare-ups, an explanation that had apparently been offered to her by health professionals. I t seemed a s a t i s f a c t o r y explanation at the time because my l i f e was c e r t a i n l y s t r e s s f u l . I managed to weather that school year, and by the time I started grade seven, I was doing quite well. I had a few residual problems; opening the heavy front door to the school was d i f f i c u l t , as were turning the taps i n the bathtub, and using the hand brakes on my bike. I set myself the goal of being able to s i t on my heels, a task which requires f u l l knee f l e x i o n and ankle extension, and spent many hours i n the bathroom with my knee up on the counter, pressing down hard 202 and forcing my jo i n t s to comply. After some time had past, I had not only reached t h i s goal, but was even taking jazz dance lessons. I spent over two years quite free from a r t h r i t i s . I t was during t h i s time that we decided that my grandfather ought to come to l i v e with our family. I f e l t as though he and I were kindred s p i r i t s , not because of our shared diagnosis, but because of things l i k e our shared love for a r t . I was very drawn to him. He stayed with us only a short time because he had serious c i r c u l a t o r y problems that forced his ho s p i t a l i z a t i o n . The doctors decided that they would have to amputate his legs i n order to save h i s l i f e . He said that he would rather die than lose his legs, and he did. Around Christmas time the year I was i n grade nine I started to notice c l i c k i n g i n my knees. Within a few weeks I was i n a full-blown flareup and my doctor t o l d me I would have to be admitted to hospital f o r about three weeks. When I was not c a l l e d i n by the hospital i n short order, he admitted me on an emergency basis. Although I was i n appalling condition at the time, I couldn't understand why t h i s was any d i f f e r e n t from 203 my previous flareup, and f u l l y expected that I would have to go through a tough year or so, followed by a lengthy rebuilding, but that eventually things would be back to normal. When I mentioned to one of my therapists that I was expecting to be i n hospital f o r three weeks, she said i t would probably be more l i k e f i v e or s i x . I was f i n a l l y released a f t e r more than three months, and much agi t a t i o n , i n worse shape than I had been i n at my admission. A g i r l from my school had b r i e f l y shared my room near the beginning of my admission, and when she came back to v i s i t towards the end, she said to me "you look a l o t more... cr i p p l e d than you did". I t was a great blow to hear t h i s , e s p e c i a l l y since I was holding f a s t to the idea that I had the kind of a r t h r i t i s that would come and go, not the kind that would progressively destroy me l i k e i t had every other a r t h r i t i s patient that I met i n h o s p i t a l . I was d i f f e r e n t . I wasn't l i k e Judy, a g i r l only a few years older than me, whose a r t h r i t i s had ravaged her body, leaving her f r a i l and s k e l e t a l , and i n need of constant nursing from her mother. I remember Judy's 204 mother having to l i f t her from her wheelchair into a standing position so that she could be helped into the pool. I t o l d my friends about Judy i n such a way that they would believe that I was not another Judy, that I was not to be written o f f as a c r i p p l e , that t h i s was a l l going to pass. "Poor Judy", I said, "she has the kind of a r t h r i t i s that doesn't go away". Although I had fought long and hard f o r my release from the h o s p i t a l , l i f e on the outside was not what I imagined i t would be. My friends were not as supportive or as available as I would have l i k e d , and my best f r i e n d , who came from a strongly fundamentalist family, asserted that my a r t h r i t i s must be punishment for the wrongdoing of my parents. My body was wracked with pain and I could hardly move. Once my mother came into my room to help me s i t up i n bed. She put her hand under my neck and I winced and said "no!"; she t r i e d putting her hand under my shoulders, then my back, then anywhere else she could think of, but I couldn't stand to be touched. F i n a l l y she said "where can I hold you?" 205 "Grab my nose", I said because I couldn't think of anything else that didn't hurt, and we both laughed and c r i e d . Being at home allowed f o r a release of emotions that was not possible while I was housed with four roommates i n the h o s p i t a l . I c r i e d continuously, and t o l d my mother I didn't want to end up l i k e Colleen, my twenty-five-year-old hospital roommate who was fi n d i n g i t impossible to continue working because of her a r t h r i t i s , and who wanted to be married but seemed destined to remain si n g l e . I was grappling with a l l of the evidence that seemed to define my previous remission as a lucky, last-time reprieve. At night, when I went to bed, I would cry as my mother turned out the l i g h t , b elieving that that was the l a s t time I would see her. Like my grandfather who believed that the loss of my grandmother would leave him so broken-hearted that his s p i r i t would be released to be with hers, the man who died rather than lose his legs, I believed that my w i l l to l i v e was depleted, and that I would die i n the night. This state of utter despair lasted f o r months u n t i l two very profound psychological changes occurred 206 to l i f t me out of my depression and restore my optimism and w i l l to l i v e . I was f i f t e e n years old at the time, and t y p i c a l l y self-centred and unappreciative of others. An almost inexplicable change came over me when suddenly I began to see the love which flowed between me and my family. This new r e a l i z a t i o n was e s p e c i a l l y acute because of i t s sharp contrast with what had gone before. So intense was my f e e l i n g that I began to regard i t as more than adequate compensation for what I had l o s t ; my love for my family was an extraordinary g i f t whose price had been my d i s a b i l i t y . A second, equally profound change i n my thinking bolstered my new optimism. I embraced what Frankl c a l l s "the l a s t of the human freedoms — to choose one's attitude i n any given set of circumstances" (1984, p. 86). Like most people I had believed that my emotions were contingent upon my s i t u a t i o n , and, of course, they were as long as I held t h i s b e l i e f ; i n a sense I had f e l t that my s i t u a t i o n " e n t i t l e d " me to my feel i n g s . But with great suddenness everything became clea r to me; my condition was a given, but I could be happy and i n t h i s condition or unhappy and i n t h i s 207 condition. In what f e l t l i k e a decision between l i f e and death, I chose happiness. This change occurred despite a steady worsening of my a r t h r i t i s . My doctor f e l t that I should be sent to a hospital i n Vancouver, but I f l a t l y refused to heed his advice, mostly because I did not want to be away from my family. But as the days went by, i t took longer and longer f o r me to lock my legs underneath me so that I could make the short t r i p from my bedroom to the bathroom. F i n a l l y , the day came when I was completely unable to do i t , and I was re-admitted to hospital i n V i c t o r i a . I spent s i x months i n that V i c t o r i a h o s p i t a l , and made no progress whatsoever. However, my s p i r i t s were good; I had met another patient, a Polish fellow who had been i n a car accident while v i s i t i n g h is Canadian r e l a t i v e s . He was i n hospital with me the enti r e length of my stay, and we had great fun together. He spoke v i r t u a l l y no English i n the beginning, and I gladly became his tutor. We drew funny pictures, and acted out s i l l y r o le plays, and were almost inseparable. He also taught me to speak some Pol i s h , 208 and we had plenty of private jokes i n a language no one around us spoke. My doctor t o l d me, some months into my admission, and a f t e r seeing my x-rays, that my hips were so damaged that they would need to be replaced, but that the surgery could not be done u n t i l I was nineteen. This meant, he said, that I would be confined to a wheelchair for the next four years or so. I t also meant that I would have to attend a d i f f e r e n t school, one that would accommodate wheelchairs. This was devastating news, and confirmed my worst fears about the permanence of my d i s a b i l i t y . Although I had already come to the understanding that one's happiness was not contingent upon one's circumstances, my physical pain was almost unbearable, and I found i t very d i f f i c u l t to incorporate the idea of a wheelchair into my i d e n t i t y . My doctor was very concerned about my psychological health as well. Unaware of my r e l a t i o n s h i p with my P o l i s h f r i e n d , and unable to conceive of anyone i n such rough shape as I was then being anything but miserable, he referred me to a psychologist. I was absolutely bewildered by t h i s , but 209 played along anyway. The psychologist did two things. F i r s t , he arranged for a young woman who had been seriously and permanently disabled i n an accident to come and v i s i t me; t h i s woman t r i e d to s e l l me on the idea that being disabled was wonderful, and that she would not have i t any other way. Second, he decided that I needed some sort of a pastime, and he put me i n contact with another patient who was a painter. This painter and I produced many watercolours i n the occupational therapy room, and, i n retrospect, I suppose that the psychologist must have f e l t some s a t i s f a c t i o n at his two model patients, whiling away the hours i n what might have appeared to be serene resignation. After s i x months, my doctor concluded that there was r e a l l y nothing he could do f o r me, and once again proposed that I go to G.F. Strong, the r e h a b i l i t a t i o n centre i n Vancouver. This would mean leaving my beloved two-year-old s i s t e r , whose gentle, funny s p i r i t made me forget a l l of my woes, my father, who brought me chocolate milkshakes when I was almost perishing from starvation (the consequence of my re f u s a l to eat hospital food) and who sneaked into the hospital the 210 puppy he had gotten to keep me company, and my mother, whose constancy, forgiveness and generosity gave me so much strength. Another thing bothered me as well; as long as I was i n the V i c t o r i a h o spital where the most common reason for admission was the removal of knee c a r t i l a g e , where most patients were discharged a f t e r a week or so to resume t h e i r old l i v e s , I could maintain the fantasy that t h i s was a l l a temporary inconvenience. To enter G.F. Strong, a place where people were learning to l i v e with serious and permanent d i s a b i l i t y was, I imagined, to enter another sphere altogether, a nightmare world where people moaned and drooled, t h e i r eyes at h a l f - mast. Many of the patients at G.F. Strong had indeed endured the unimaginable; sometimes several members of the same family who had been i n a single accident were dealing with devastating injury while at the same time grieving the loss of loved ones who had not survived. I saw criminals who had been injured i n the commission of t h e i r crimes and many young men struck down by is o l a t e d acts of foolishness. The woman i n the room 211 across the h a l l would shriek and cry every time she went to the bathroom, bel i e v i n g she was giving b i r t h . Yet despite the horror of a l l of t h i s , I found the experience very u p l i f t i n g . G.F. Strong was not a depressing place. Although there were some pathetic souls, they were not necessarily those with the greatest physical d i s a b i l i t y . Many of those with the greatest misfortune were those most r e s i l i e n t , best adjusted. My fellow patients confirmed for me that there i s no c o r r e l a t i o n between one's s i t u a t i o n and one's capacity f o r happiness, and t h i s was tremendously freeing. I was released from G.F.Strong a f t e r many months, and soon returned to high school a f t e r a two-year absence. I returned to school determined to repay my parents for a l l they had done for me i n those d i f f i c u l t two years, and resolved to use the g i f t I s t i l l had, a capacity for academics. I pursued my studies so doggedly that I act u a l l y did myself great physical harm that resulted i n several surgeries and many months h o s p i t a l i z a t i o n a f t e r my graduation. I had wanted very much to be a doctor, to take up arms against some of the diseases I had seen i n 212 h o s p i t a l . I started u n i v e r s i t y taking pre-med courses with the f u l l intention of f o o l i n g a l l of the naysayers who had deemed a medical career impossible. But eventually I came to r e a l i z e that I would f e e l pretty s i l l y saying to one of my patients, for example, "excuse me, but could you help me put t h i s stethoscope i n my ears?". In any case, my attentions were diverted by the man who was to become my husband. We married two weeks af t e r my univ e r s i t y graduation and I spent a year t r y i n g to be a t r a d i t i o n a l stay-at-home wife, a r o l e for which I am miserably i l l - s u i t e d . At the end of that year I enrolled i n teacher t r a i n i n g , determined to get out of the house and put my talents to use. I taught elementary school f o r three years a f t e r that and loved every minute of i t . It was during t h i s time that I started to see that my d i s a b i l i t y could be a teaching t o o l ; the f a c t that I was a person with a d i s a b i l i t y , working l i k e any other person, would teach the children something about d i s a b i l i t y , I hoped, and would help them f e e l comfortable around people with d i s a b i l i t i e s . Of course I answered the children's questions when they came up, 213 but my approach was one of "normalizing" d i s a b i l i t y by simply l i v i n g with i t . I guess t h i s was when I started to f e e l that my experience of a r t h r i t i s could be put to good use. Meanwhile my marriage was very d i f f i c u l t , not because I didn't love my husband or because he was a jerk, but because of a l l the things that go along with d i s a b i l i t y . My a r t h r i t i s constrained not only my own movements and my own p o s s i b i l i t i e s , i t hindered h i s as well. Relations between my husband and my family became strained because he f e l t that they were c r i t i c a l of him, that they believed he was not doing a good enough job of caring f o r me. He resented what he saw as the intrusion of home support workers into our home, yet he had f a r too much on h i s own plate to do everything himself. Though I f e e l that I can handle the e f f e c t s that a r t h r i t i s has on me, I f e e l great sorrow for the e f f e c t i t has had on him. The d i f f i c u l t i e s that he has experienced have become the source of my greatest regret about having a r t h r i t i s . So although I've stopped saying "why me?", I sometimes f i n d myself saying "why him?". 214 Two other health c r i s e s have compounded the d i f f i c u l t i e s presented by my a r t h r i t i s . About 5 years ago I was hospi t a l i z e d for pressure sores caused by s i t t i n g too long i n my wheelchair. This h o s p i t a l i z a t i o n lasted nearly a year and involved the most horrendous of conditions: I had 7 operations, and had to stay i n a f l u i d i z e d sand bed for over 6 months, not even having the head of my bed raised, l e t alone getting out of bed. I could not eat by myself, go to the bathroom, or have a shower. I could not hold a book to read and I could barely see over the ledge of the bed. Several big l i f e events passed me by as I lay there, including my father's heart attack and my beloved brother's wedding. When, af t e r many months, I was f i n a l l y allowed to s i t up, i t was only for one minute, 3 times a day. Gradually the length of time was extended, f i r s t to 5 minutes at a time, then 10. After 3 months or so I had progressed to the point where I could s i t up for 4 hours at a time. I f u l l y expected that my time-up would be extended u n t i l I could s i t as long as I wanted. Just before I was released from hospital my p l a s t i c surgeon t o l d me that was i t , that f o r the rest of my l i f e I would be 215 constrained by having to lay down every 4 hours. I was devastated; i t was l i k e another equally large d i s a b i l i t y . I wondered how I would ever hold a job, go to school, or go on a t r i p . Even going on a one-day workshop would be almost impossible. The other medical c r i s i s happened 3 years ago. Doctors had known for some time that my a o r t i c valve had been leaking very badly, but t h e i r attention lapsed and a c r i t i c a l echocardiogram was not read, and my heart f a i l e d completely. One night I found myself v i r t u a l l y unable to breathe, and f e e l i n g as though I were going to pass out. I went to the emergency department and my d i s t r e s s was so apparent that I was taken i n and hooked up to machines before they even knew my name. I arrested within minutes, and by some miracle was rescusitated. The doctor i n the ICU t o l d that my heart was so badly damaged that I would not survive surgery. Very c o l d l y she t o l d me "we a l l have to die and y o u ' l l just have to accept i t " . I didn't accept i t ; I found a surgeon who was w i l l i n g to operate and the surgery did wonders. I describe these two medical c r i s e s because I think that either one of them would have provoked a 216 "why me?" response i n most people. But I f e e l I have pretty much resolved t h i s question, not just with respect to my a r t h r i t i s , but with respect to other things that happen to me as well. (I must say, though that my resolution of t h i s question has to do with things that happen to me; I don't think that i t would apply i f something were to happen to someone I love.) I've come to the conclusion that the answer to the question "why me?" i s inaccessible to us, that i t i s r e a l l y f r u i t l e s s to ask i t . But at the same time I t r y to l i v e as i f there were a divine purpose to a l l of t h i s . By doing t h i s I am constantly focused on how I might turn my experience to good. This approach guides me always i n the choices that I make i n my l i f e . At the same time the importance of physical and psychological influences r i s e s and f a l l s with d i f f e r e n t observations and as d i f f e r e n t pieces of information come to l i g h t . At the moment I am intensely interested i n the possible genetic o r i g i n s of my a r t h r i t i s . In the past when people would ask me i f I had a r t h r i t i s i n my family I would say no. But i n the l a s t few years, two of my s i s t e r s have been diagnosed with lupus anticoagulant, a c l o t t i n g disorder 217 that i s often seen i n people with lupus, a disease c l o s e l y related to a r t h r i t i s . My grandmother had lupus, and some recent correspondence with a long-lost cousin has revealed that she has had miscarriages that might have been associated with lupus anticoagulant, that her s i s t e r has a r t h r i t i s , and that her father has lupus. I f i n d myself so intrigued with these discoveries that I act u a l l y search the internet f o r s c i e n t i s t s doing research i n the area, i n case they could make use of the information. The development of my causal model i s quite consistent with the pattern of development of my co- investigator's causal models. Yet before I undertook t h i s study I was not conscious of the way my own model had developed. I saw the pattern i n my own model only a f t e r I had seen i t i n the models of my co- investigators. So rather than using my own model as a template with which to construct the models of the co- investigators, the opposite occurred. Their s t o r i e s helped me understand my own. Appendix C - Interview Protocol F i r s t interview 218 [I began by introducing myself and reviewing the consent form with co-investigators. Then I i n i t i a t e d the s t o r y t e l l i n g by saying:] I am doing a study to understand the ways i n which people make sense out of the f a c t that they have a r t h r i t i s . I wonder i f you could t e l l me about the experience of your a r t h r i t i s . When I say the "experience of your a r t h r i t i s " I am not just t a l k i n g about your medical history, although that i s a part of i t . I'd l i k e you to t e l l about your a r t h r i t i s as though you were t e l l i n g a story with a beginning, a middle, and an end. While t e l l i n g your story, t r y to remember as many d e t a i l s as you can about what you were thinking, f e e l i n g , and doing at d i f f e r e n t points i n time. Any questions? Second interview [Second and subsequent interviews were used to f i l l i n d e t a i l s that were not forthcoming as respondents t o l d t h e i r s t o r i e s i n the f i r s t interviews, and to c l a r i f y vague or ambiguous statements. After reviewing the t r a n s c r i p t s or the tapes from the f i r s t interviews, I asked questions such as these:] Why do you think you have a r t h r i t i s (when so many other people don't)? Did you ever ask "why me?" What did you conclude? Did you ever f e e l l i k e you were being punished f o r something? Did anyone ever suggest t h i s to you as a p o s s i b i l i t y ? Is r e l i g i o n important to you? Do you think that, i n general, that l i f e i s f a i r , that people get what they deserve and deserve what they get? When you were growing up, how did your family deal with suffering? Has that c a r r i e d over into the way you deal with su f f e r i n g as an adult? What kind of goals, values, and p r i o r i t i e s did you have before you got a r t h r i t i s ? How have these changed? Do you think you have gained anything because of your a r t h r i t i s ? Has your sense of meaning i n l i f e changed? In what ways? H I tr » It O 3 W P> o a Ml ci a tn Ul CO 3'. rt t i > B) h H - iQ 0 tn fD 3 3 3" H- co p) 0 0 0 tn tn h-1 P) 1 H- o h-1 rt in P) H - PJ t ) o f c a l n d  tn tn m fD fD a fD H tn fD tn pj 3 fD tn tn tn a P> c ff f t fD H 3 H a fD 3" 3 3 fl) M H H- fD a rt 3" M fD 3 >Q d rt O CL O O tn pi rt fD fl) H n 3- 3 P) o CL rt 3* fD H rt O 3- H fD >< M- rt 3 3 fD CU a. fD T3 H (D tn tn H- O 3 Mi fD n o c a 3 o rt iQ fD rt t-t fD >C h-* P> O fD a h fD I a H- P> KQ 3 o tn H- tn tn ,Q O C 3' H- O rt O P> 3 a o 3 fD ff H- TS 6 T 3 o a s •o 3 t r ff a O H H fD H-PI fD 3 O 0 rt 3 3 . fD 3 •o ff iQ ri- 0 Pi h fD p- tn rt fD tn er pi fD H a *< 3 a B> o 3 B> fD (D rt fD tr1 0) H- C Q Hi C D fD C D W <J . fD 3 rr 03 CO o < fD M c tn fD rr r t H- cr 3 r t H- O 3 >a TJ tn tn CT rt •< •< n O tn fD 3* H- O ta n CQ p) o p. cu O 3 pj a T3 MiTS s P> o e s; tn M 3 ff rt H - I < tn tn I - H- cr 3 H- 3 3 fD Mi tn fD •<> fD 3 = O rt Mi fD 3 fD rt H- n tn Mi H- M H- 3 rt iQ ff tn fD 3 I CO H- I H- Hi H- fD fD h-1 fD O Hi (D r t H- fD 3 fD O P> H O H- 3 fD 2 2 0 Appendix E: Outlines of the causal models There i s an implied timeline down the left-hand side of each of these pages. These outlines show: 1. The elements of the causal models and the order i n which they were incorporated; 2 . That sometimes elements i n the "influences" columns w i l l appear i n the "causes" column l a t e r i n the chronology, showing that some of the co-investigators came to believe that things that could influence the severity of t h e i r a r t h r i t i s might have been responsible for i n i t i a t i n g i t i n the f i r s t place; 3 . That causes, once incorporated, are seldom rejected; 4. That causes rejected can become cause incorporated; and 5. That the incorporation of many of the elements can be t i e d to l i f e events. Diana A g e : 53 D i a g n o s i s : R A , 1974 221 C u l t u r e : E n g l i s h Y e a r D L i f e E v e n t s C a u s e s I n f l u e n c e s C a u s e s X i n c o r p o r a t e d i n c o r p o r a t e d r e j e c t e d i n t o m o d e l i n t o m o d e l 1961 P r p a i n o n e k n e e l i n g d i a c h e s t p a i n , g p o s s i b l y ..n a s s o c i a t e d w i t h o s m a l l j o i n t s 111! j o i n i n g r i b s t o X III! s t e r n u m 1972 "b. b i r t h o f o n l y s t r e s s - d i d 111! b i o l o g i c a l n o t w a n t t o §§|| c h i l d - f l a r e u p b e a m o t h e r , i i i o f symptoms f i n a n c i a l lit! s t r u g g l e s 197 4 moved f r o m a c c e p t e d t h a t p o s i t i v e no E n g l a n d t o R . A . i s a t h i n k i n g f a m i l y 111! C a n a d a - new d i s e a s e o f h i s t o r y | | | d o c t o r , c o r r e c t u n k n o w n e d i a g n o s i s e t i o l o g y u m c o m b i n a t i o n '"a"" o f h a v i n g t R . A . i n h e r o " s y s t e m " I ( p h y s i c a l ) , d p l u s s t r e s s o f n e w b o r n a c h i l d r t p o s i t i v e h s e v e r e "why me?" t h i n k i n g r d i s a b i l i t y r e j e c t i o n o f i G od t " g u i r k o f X f a t e " s Marlene A g e : 47 222 D i a g n o s i s : RA, 1978 C u l t u r e : E n g l i s h C a n a d i a n Y e a r D L i f e E v e n t s C a u s e s I n f l u e n c e s C a u s e s X i n c o r p o r a t e d i n c o r p o r a t e d r e j e c t e d i n t o m o d e l i n t o m o d e l 1978 " t r a u m a t i c " 3 0 t h b i r t h d a y r s ymptoms a p p e a r h e r e d i t y h e RA f a c t o r h e r e d i t y u a p p e a r s - ( p h y s i c a l ) m a s t r e s s o f t b e i n g o n l y o m i l i t a r y i s i n g l e m o t h e r w e a t h e r 111 w i l l p o w e r 111 111 w o r k p l a c e s t r e s s o f i l l s t r e s s - t r y i n g t o 111 d e m o t i o n t o c o n c e a l r m e n i a l , p a r t - p h y s i c a l i t i m e p o s i t i o n p r o b l e m s t i III p a i n s e v e r e "why me?": L u c k Sophie A g e : 7 9 D i a g n o s i s : RA, 1968 C u l t u r e : E n g l i s h C a n a d i a n Y e a r D L i f e E v e n t s C a u s e s I n f l u e n c e s C a u s e s X i n c o r p o r a t e d i n c o r p o r a t e d R e j e c t e d i n t o m o d e l i n t o m o d e l 1968 R j o i n t f l a r e u p s c o r t i s o n e h i n j e c t i o n s e u v i g o u r o u s m p h y s i o t h e r a p y a t b e d r e s t o i move t o c o o l e r d W e st C o a s t f r o m h e a t Q u e b e c A liii e x c e s s i v e III p h y s i c a l h p h y s i c a l : a c t i v i t y 111 o v e r d o i n g i t L i n t e n n i s t c h a n g e i n III s t r e s s : b a r o m e t r i c III m a r i t a l p r e s s u r e p r o b l e m s 1980 s e p a r a t e d f r o m h u s b a n d "why me?": e a r l y c h a n c e t r e a t m e n t Tamara A g e : 51 D i a g n o s i s : RA, 1980 C u l t u r e : E n g l i s h C a n a d i a n Y e a r D L i f e E v e n t s C a u s e s I n f l u e n c e s C a u s e s X i n c o r p o r a t e d i n c o r p o r a t e d r e j e c t e d i n t o m o d e l i n t o m o d e l 1980 woke up p h y s i c a l - " c o m p l e t e l y h e r e d i t y , c o l d p a r a l y z e d " - w e a t h e r , l a c k o f d i a g n o s e d w i t h a t h l e t i c e s t r o g e n p o l y a r t h r i t i s i n j u r i e s l e a r n e d a b o u t II! E d g a r C a y c e p s y c h o l o g i c a l h and p h y s i c a l lit s t r e s s r e l a t e d u t o c h i l c a r e , s t r e s s m s c h o o l , a n d a w o r k t f i b r o m y a l g i a o d i a g n o s e d RA i s a i " w o r r y - III d i s e a s e " : : : C3;: : Hi ill became d e v o t e e "why me?" h o f E c k a n k a r r e t r i b u t i o n III! f o r s i n s o f i p a s t l i f e |1| 111 r e v e l a t i o n l e a r n e d s p e c i f i c s i n f o r w h i c h s h e i s p a y i n g n e a r - d e a t h e x p e r i e n c e Gwen A g e : 63 D i a g n o s i s : RA, 1980 C u l t u r e : W e l s h Y e a r D L i f e E v e n t s C a u s e s I n f l u e n c e s C a u s e s X i n c o r p o r a t e d i n c o r p o r a t e d r e j e c t e d i n t o m o d e l i n t o m o d e l P a l c o h o l i c , r p r o m i s c u o u s e h u s b a n d 1975 d i n i t i a t e d t h e n l d r o p p e d d i v o r c e a p r o c e e d i n g s g n h u s b a n d l e f t o f o r a n o t h e r s woman : ^ i S Hi f o r e c l o s u r e o n f a m i l y home symptoms a p p e a r 1980 p h y s i c a l e x e r t i o n IS::: d i a g n o s i s p h y s i c a l : 111 m e n o p a u s e 111 11! Ill m h u s b a n d i n a n d ill o u t o f l i f e p h y s i c a l : a b u s e f r o m " f o r some i h u s b a n d k i n d s o f d a r t h r i t i s n o t h i n g A w o r k s " r t s t r e s s : 1985 h h u s b a n d l e f t f a m i l y r o n c e a n d f o r p r o b l e m s i a l l t "why me?": I "someone w a t c h i n g o v e r me" M a d e l e i n e A g e : 4 4 D i a g n o s i s : RA, 1985 C u l t u r e : F r e n c h - C a n a d i a n Y e a r D L i f e E v e n t s C a u s e s I n f l u e n c e s C a u s e s X i n c o r p o r a t e d i n c o r p o r a t e d r e j e c t e d i n t o m o d e l i n t o m o d e l P d i s a b l e d r d a u g h t e r e 1985 c a m p i n g t r i p m o s g u i t o b i t e , i n j u r y d i a g n o s i s p h y s i c a l : + h e r e d i t y d a u g h t e r ' s R d i a g n o s i s w i t h h C o c k a y n e ' s e D i s e a s e ifti fill a o n l y o n e 111 m e d i c a t i o n lit! d a u g h t e r ' s i c o n d i t i o n 111 d e g e n e r a t i n g , m o t h e r i n t e n s e l y 111 i n v o l v e d i n h e r • r c a r e t h r w o r r y i n g i I s 1991 d a u g h t e r d i e s M a d e l e i n e s t r e s s was b e c o m e s more t h e t r i g g e r i n v o l v e d i n c a r e o f h e r own "why me?" - i l l n e s s no a n s w e r S t a c e y A g e : 4 4 D i a g n o s i s : PA, 1986 227 C u l t u r e : E n g l i s h C a n a d i a n Y e a r D L i f e E v e n t s C a u s e s I n f l u e n c e s C a u s e s X i n c o r p o r a t e d i n c o r p o r a t e d r e j e c t e d i n t o m o d e l i n t o m o d e l 1986 P symptoms a p p e a r p h y s i c a l : r v e r y p h y s i c a l e f a t h e r v e r y i l l j o b v i r a l i n f e c t i o n ? h e p a t i t i s B v a c c i n e ? 1987 d i a g n o s i s E> "why me?": s f a t h e r d i e s p u n i s h m e n t lit f o r s i n s o f !!§ p a s t l i f e ? i o n l y a b l e t o a w o r k o f f a n d o n t b e c a u s e v e r y i s i c k lit 1989 h a d t o q u i t A w o r k a l t o g e t h e r s t r e s s r i i i n v o l v e m e n t i n h c u l t r s t r e s s : i p o v e r t y w o r k a n d t f a t h e r ' s i i l l n e s s a n d s d e a t h a d m i s s i o n t o 1993 G.F. S t r o n g "why me?": s o m e t h i n g t o l e a r n 1995 h e p a t i t i s B v a c c i n e C a r o l i n e A g e : 32 D i a g n o s i s : J RA, 1977 C u l t u r e : F i r s t N a t i o n s Y e a r D L i f e E v e n t s C a u s e s I n f l u e n c e s C a u s e s X i n c o r p o r a t e d i n c o r p o r a t e d r e j e c t e d i n t o m o d e l i n t o m o d e l 1977 J s p i n a l t a p s p h y s i c a l u h a r d s h i p V symptoms m e n t a l s t r e s s e a p p e a r ; n d i a g n o s i s - "why me?": 1980 1 m a r r i e d p u n i s h m e n t e f o r s i n s i n p r e g n a n c y d a u g h t e r b o r n p a s t l i f e R h e u m 1984 i n G.F. S t r o n g p h y s i c a l i i a d m i s s i o n g e n e t i c s o v e r u s e i | | a c i d y f o o d s A d e p r e s s i o n p h y s i c a l 111:: f i l l i n g s i n 111 t e e t h ? 11 r a. ill i s i n f e c t i o n 1 9 9 1 G.F. S t r o n g , a f t e r r o o t s u r g e r i e s c a n a l L o r n a Age: 4 4 D i a g n o s i s : RA, 1970 C u l t u r e : F i r s t N a t i o n s Year D L i f e Events Causes I n f l u e n c e s Causes X i n c o r p o r a t e d i n c o r p o r a t e d . r e j e c t e d i n t o model i n t o model 1970 R b i r t h o f t h i r d p h y s i c a l : h c h i l d , symptoms working i n e appear i n c l e m e n t u c o n d i t i o n s m a s t r e s s : t f a m i l y s t r e s s o Rufus Gibbs 1975 l " f i g h t i n g d s p i r i t " b i r t h o f 1977 A youngest c h i l d - r c o u l d n ' t c a r e "why me?": t f o r her h i g h e r 111 purpose? Iii observes r i s i n g g e n e t i c s ? ill i n c i d e n c e o f RA X amongst n a t i v e p h y s i c a l : III p e o p l e change i n f o o d w i t n e s s e d s t r e s s o f s h o o t i n g - PTSD l i v i n g on r e s e r v a t i o n 1991 and l o s s o f n a t i v e i d e n t i t y "why me?": e v e r y t h i n g has a purpose M a r i l y n A g e : 31 D i a g n o s i s : RA, 1 9 9 1 C u l t u r e : E n g l i s h C a n a d i a n Y e a r D L i f e E v e n t s C a u s e s I n f l u e n c e s C a u s e s X i n c o r p o r a t e d i n c o r p o r a t e d r e j e c t e d i n t o m o d e l i n t o m o d e l 1 9 9 1 R w o r k i n g i n p h y s i c a l : h s h i p p i n g a n d o v e r u s e e r e c e i v i n g , u f i n g e r s s w e l l e d m a d i a g n o s i s t o i ri t r i e d t o r e t u r n A t o w o r k b u t e x e r c i s e 111 c o u l d n ' t 11 r e s t |§| 11 m e d i c a t i o n s L c r y i n g a n d Iff l o n e l i n e s s "why me?": e m o t i o n a l 1 p u n i s h m e n t s t r e s s Iii J e s s A g e : 25 D i a g n o s i s : RA, 1990 C u l t u r e : S i k h - C a n a d i a n 231 Y e a r L i f e E v e n t s . C a u s e s i n c o r p o r a t e d i n t o m o d e l I n f l u e n c e s i n c o r p o r a t e d i n t o m o d e l C a u s e s r e j e c t e d 1990 symptoms a p p e a r ; r e t u r n t o C a n a d a ; h o s p i t a l i z a - t i o n ; d i a g n o s i s r e t u r n t o L o n d o n ; no j o b o r a p a r t m e n t moved b a c k t o C a n a d a n o t e n o u g h e x e r c i s e ? s t r e s s p h y s i c a l : f o o d s p h y s i c a l : " i n y o u r s y s t e m " a n d i s t r i g g e r e d "why me?": s u r f a c e s p e r i o d i c a l l y a n d i s p u s h e d away; no a n s w e r s t r e s s Robin A g e : 34 D i a g n o s i s : JRA, 1962 C u l t u r e : E n g l i s h C a n a d i a n Y e a r D L i f e E v e n t s C a u s e s I n f l u e n c e s C a u s e s X i n c o r p o r a t e d i n c o r p o r a t e d r e j e c t e d i n t o m o d e l i n t o m o d e l 1962 P f e v e r , s w o l l e n ( p a r e n t s ) r j o i n t s c h i c k e n p o x ? e s t r e p t h r o a t ? DPT v a c c i n e ? 1963 J d i a g n o s i s u V e n i s t a r t e d ill s c h o o l , l o o k e d w o r k i n g h a r d / d i s a b l e d b e i n g g o o d R ill e "why me?": s t r e s s Iii no a n s w e r . m. G.F. S t r o n g , 1975 a s u r g e r y p h y s i c a l 111 f a u l t i n t h e o s t a r t e d immune I c o l l e g e s y s t e m , may 111 be g e n e t i c ill s t a r t e d l o n g - r t e r m t r e l a t i o n s h i p h s t r e s s o f b a d r r e l a t i o n s h i p X t r e l a t i o n s h i p 1988 i e n d s s "why me?": l u c k Appendix F Summary of causes and influences c i t e d by co-investigators 233 Physical causes From the outside 1. TB vaccination - Tamara 2. Hepatitis B vaccine - Stacey 3. DPT vaccine - Robin fs parents 4. v i r u s , chicken pox - Robin's parents v i r u s , t r o p i c a l (unknown) - Stacey 5. bacterium, strep throat - Robin's parents 6. physical hardship, medical t e s t i n g - Caroline physical hardship, abuse - Gwen 7. f i l l i n g s i n teeth - Caroline Constitutional 1. genetic - Marlene, Madeleine, Caroline, Tamara, (Robin), (Lorna) 2. " i n your system" - Diana, Robin, Jess The way you are 1. menopause - Gwen 2. overweight - Marlene What you are doing 1. childbearing - Lorna, Diana 2. working too hard / r e p e t i t i v e motion / injury - Marilyn, Stacey, Gwen, Tamara, Sophie 3. working i n inclement conditions - Lorna, Tamara Stress Long-term / chronic 234 1. family / marital dysfunction - Lorna, Diana, Sophie, Gwen 2. d i f f i c u l t family s i t u a t i o n - Madeleine, Marlene, Tamara 3. work stress - Stacey, Jess 4. loss of culture / i d e n t i t y - Lorna Events 1. unwanted c h i l d - Diana 2. c h i l d ' s diagnosis - Madeleine 3. father's i l l n e s s and death - Stacey "Why me?" Chance 1. luck - Marlene, Robin 2. quirk of fate - Diana 3. chance - Sophie Punishment 1. for wrongdoing - Marilyn 2. for sins of past l i f e - Tamara, Caroline, (Stacey) Eventual / ultimate good 1. everything has a purpose - Lorna 2. something to learn - Stacey 3. someone watching over me - Gwen No answer 1. no answer and angry - Madeleine 2. no answer and OK - Jess Influences - things that make a r t h r i t i s better or worse Disposition / personality 235 1. anger - Tamara 2. willpower - Lorna, Marlene, Robin, Tamara 3. p o s i t i v e thinking - Marilyn, Diana 4. being good / t r y i n g hard - Robin Stress Robin, Tamara, Stacey, Marilyn, Marlene, Jess Timing 1. recency of diagnosis - Diana, Marlene 2. early treatment - Sophie Hormonal 1. pregnancy - Caroline 2. lack of estrogen - Tamara Treatment 1. exercise - Marilyn, Sophie 2. rest - Marilyn, Sophie 3. medications - Marilyn, Sophie Environmental 1. weather - Marlene 2. heat - Sophie 3. changes i n barometric pressure - Sophie Other 1. overuse - Caroline, Sophie 2. foods - Caroline, Jess 3. i n f e c t i o n - Caroline

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