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1_Fibromyalgia - Barker

1_Fibromyalgia - Barker -...

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Unformatted text preview: --J.‘iJZr.‘=‘-"?.l‘-Hell3061fll'JSITUULIUUUH U1 ‘UISCHEC anu 11111655 " "“31 ,socioliigy- ”.1Spciology of. Health and Illness ‘.%725':'4‘1#57;ws = - "' ' . R th :JuliUS, andPeter Conrad. (1987). The Experi- _'-gnc"e‘ and Management of Chronic IllnessiBesearch in'fhe'fs'éciqlogy of Health Care, Volume 6). Green- " ich CTi AI Press. Sél‘ffieider, Joiep'h W, and Peter Conrad. (1983). Hav- -i-"ing' Epilepsyi The Experience and Control of Ill- ness. Philadelphia: Temple University Press. 'L. Segall, Alexander. (1976). “The sick role concept: U“. derstanding illness behavior.” Jon and Social Behavior. 17 (June): 163—70. 1975). Chrop' Strauss, Anselm, and Barney Glaser. { Illness and the Quality of Life. S Mosby. ' Suchman, Edward. (1965). “Stages of illness 3?, medical care.” Journal of Health and Social Beha ior. 6: 114—28. rnal of He t. Louis: C alin ' ' I) Kristin Barker imately six million Americans are diag- fwith the pain disorder fibromyalgia and " y‘all of those diagnosed are women (Ore- ,3 Fibromyalgia Foundation 2000; Wallace d Wallace 1999).1 Fibromyalgia is not a dis~ 'isg .but a syndrome represented by a collection {lgymptoms including widespread pain and a of associated complaints, such as fatigue, £1- Ches, sleepdisorders, digestive disorders, , sion, and anxiety. Yet, like chronic fatigue ome (CFS), which is identified by most pa- physicians, and medical researchers as ei- e same or a sister disorder, there are ques- s‘about .the'diagnostic legitimacy of FMS . 'sky' and Borus 1999; Goldenberg et al. ' 90;. Mann 1998; Wessely, Nimnuan, and ' 13651999).2 biomedical lexicon, FMS is a functional so- cgsyndrome or an illness for which there is ‘6 rganic explanation or demonstrable physio- al abnormality (Mann 1998). For those di— gnosed with FMS, there is typically a deeply romedical science to demonstrate their objec- we existence. This results in self-doubt and lienation among sufferers and gives impetus to , formation of the FMS self-help and support ommunity, including the emergence of local apport groups, national newsletters, Internet remand chat groups, and self—help literature. ividuals draw upon this community to affirm 6 ~“realness?’ of their collective (and hence, in- dual) FMS experience, despite the disorder’s omedical invisibility. hei FMS self-help literature is one resource individuals draw on in their efforts to over- me self—doubt and alienation. In this paper, I ate how the FMS self-help literature ective. understanding of the symptoms of FMS at gives them meaning and legitimacy. By link- "SELF-HELP LITERATURE AND THE MAKING OF AN ILLNESS-r 4. IDENTITY: THE CASE OF FIBROMYALGIA SYNDROME (FMS) - ing an analysis of the five bestselling FMS self- help books and interviews with 25 women diag- nosed with FMS, I explain how the self-help lit— erature organizes vast and dissimilar symptoms and symptom trajectories into a diagnostically bound FMS-illness identity. Further, I demon- strate how the permissive boundaries of this identity function to reduce self-doubt and alien- ation in a context where biomedical science is unable to make FMS visible. Although there are specific reasons for the emergence of the FMS self-help community, self-help has become an increasingly important component of the illness experience generally (Davison, Pennebaker, and Dickerson 2000). Managed care, the erosion of community, and the populist critique of professional authority all contribute to the increase in health-related, self—help activities and resources (Borkman 1999; Burrows et al. 2000; Wituk et al. 2000). The emergence of Internet self-help communi- ties and information devoted to illness is partic— ularly dramatic (Davison, Pennebaker, and Dickerson 2000; Eng 2001;, Oravec 2001). I contend that the processes of collective illness identity formation described here are not lim- ited to FMS or even to other contested illnesses. Similar processes of illness identity formation occur within other health-related, self-help communities. As I discuss in the conclusion, the lay public is increasingly involved as patients (or potential patients) in collectively defining their “illnesses,” raising new questions about the nature and consequences of the medicaliza- tion of social and personal problems, discon— tent, and distress. THE FMS CONTROVERSY Although medical accounts of systemic and chronic joint and muscular pain have existed for 122' ...
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