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The first unbiased assessment of fibromyalgia

The Fibromyalgia Story

Medical Authority and Women's Worlds of Pain

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Kristin K. Barker

"Kristin Barker presents us with one of those rare sociological studies of the experience of illness by examining how women manage a common but contested pain syndrome called fibromyalgia. Based on in-depth interviews with sufferers and an analysis of medical and non-medical literature, Barker increases our understanding of the gendered construction of the disorder and how sufferers manage their symptoms, seek legitimacy, and develop an illness identity in the context of a doubting medical world. This book should interest medical sociologists and practitioners as well as people with fibromyalgia and their families."
Peter Conrad, Harry Coplan Professor of Social Sciences, Brandeis University

More than six million Americans—most of them women—have been diagnosed with fibromyalgia syndrome (FMS), a disorder that produces musculo-skeletal pain and fatigue. In the absence of visible evidence, a well-understood cause, or effective treatment, many have questioned whether FMS is a "real" illness. Amidst the controversy, millions of women live with their very real symptoms.

Rather than taking sides in the heated debate, Kristin Barker explains how FMS represents an awkward union between the practices of modern medicine and the complexity of women's pain. Using interviews with sufferers, Barker focuses on how the idea of FMS gives meaning and order to women beset by troubling symptoms, self-doubt, and public skepticism.

This book offers a fresh look at a controversial diagnosis; Barker avoids overly simplistic explanations and empathizes with sufferers without losing sight of the social construction of disease and its relation to modern medical practice.

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Excerpt

Read an excerpt from Chapter 1 (pdf).

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Reviews

"Barker tells a story of the interface between the biomedical community and the fibromyalgia syndrome (FMS) community. In giving voice to women who are suffering from FMS, she shows how the facts of how women live their lives are often obscured by physicians and researchers in a drive to adapt FMS to a biomedical model where it clearly does not fit well. This failing has led to the development and perpetuation of an institutionalized FMS community of sufferers, with both positive and negative consequences. Ultimately, Barker provides insight into the failings of biomedicine thus far to improve FMS-related quality of life that should guide researchers towards integrating social and cultural factors into the study of FMS physiology."
Leslie J. Crofford, M.D., Gloria W. Singletary Professor, Department of Internal Medicine, Chief, Division of Rheumatology, Director, Center for the Advancement of Women's Health, University of Kentucky

"The Fibromyalgia Story authoritatively explores the roles doctors and patients played in 'discovering' fibromyalgia; explains why, overwhelmingly, fibromyalgia affects white working-class women; and analyzes why doctors have ignored this basic demographic fact. Written with an amazingly evenhanded approach, it is an important contribution to scholarship on medicalization; illness experience; identity construction; and the intersections of race, class, and gender."
Rose Weitz, Ph.D., Professor of Sociology and Women's Studies, Arizona State University, and author of Life With AIDS and Rapunzel's Daughters: What Women's Hair Tells Us About Women's Lives

"...important... [it] offers much for scholars of many disciplines who seek to understand the experience of pain, and to cast mind-body duality in a modern light... [a] well-written exposition on the preconceptions of highly disparate academic traditions."
The New England Journal of Medicine

"This clearly written book...[is] exhaustively researched."
The American Journal of Sociology

"Barker engages many key concepts in contemporary sociology of health and illness, describing them with admirable clarity for those new to the field. The book is accessibly written and very well-organizedů.This is a brave and provocative book."
Contemporary Sociology

"The sociologist, Kristin K. Barker, scrutinizes the medical making of a disease...This is a really good book about why biomedicine is not good enough when judged according to its most noble mandate: to alleviate human suffering."
The Permanente Journal

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Contents

Acknowledgments
Introduction
1. The Diagnostic Making of Fibromyalgia Syndrome
2. The Woman Problem and the Feminization of Fibromyalgia Syndrome
3. Similar-but-Different: The Fibromyalgia Syndrome Illness Experience
4. The Symptomatic Self and the Life World
5. In Search of Meaning
6. Diagnostic Transformations
7. Self-Help and the Making of a Fibromyalgia Syndrome Illness Identity
8. Ties That Bind and the Problem That Had No Name
Conclusion
Appendix A. The Fibromyalgia Syndrome Biomedical Literature
Appendix B. The Interviews
Notes
Bibliography/Works Cited
Index

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About the Author(s)

Kristin K. Barker is Associate Professor of Sociology at Oregon State University.

Subject Categories

Health and Health Policy
Sociology
Women's Studies

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