The Fibromyalgia Story

The Fibromyalgia Story: Medical Authority And Women'S Worlds Of Pain

Kristin K. Barker
Copyright Date: 2005
Published by: Temple University Press
Pages: 272
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  • Book Info
    The Fibromyalgia Story
    Book Description:

    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.

    eISBN: 978-1-4399-0459-6
    Subjects: Health Sciences

Table of Contents

  1. Front Matter
    (pp. i-iv)
  2. Table of Contents
    (pp. v-vi)
  3. Acknowledgments
    (pp. vii-x)
  4. Introduction
    (pp. 1-14)

    Alice is a single, white woman in her late forties. Approximately ten years ago she was in an accident in which her car was totaled. Doctors reported that she was lucky to have escaped with only bumps and bruises, but Alice felt as though every bone in her entire body was broken. Moreover, the intense pain would not go away. Concurrent with her peculiar pain and delayed recovery, Alice had become the primary caregiver of her mother, who had been diagnosed with a terminal illness. For several agonizing months Alice watched over her dying mother. The day after her mother’s...

  5. 1 The Diagnostic Making of Fibromyalgia Syndrome
    (pp. 15-43)

    According to Robert Bennett, one of the national figures in fibromyalgia syndrome (fms) research and treatment, fibromyalgia is a descriptive “construct developed by rheumatologists to account for a common group of patients that they see in their routine practice” (Bennett 1999a: 1). Although fms originated as an intellectual construct developed by rheumatologists to help in the study and treatment of a common group of patients, the idea of fms has since become reified at the level of both knowledge and experience. Much of this book is devoted to describing the phenomenon of fms at the experiential level. But before those...

  6. 2 The Woman Problem and the Feminization of Fibromyalgia Syndrome
    (pp. 44-63)

    The previous chapter summarized how rheumatologists developed the construct or idea of fibromyalgia syndrome (fms) and the subsequent knowledge claims and counter-claims about that idea. Yet, the astute reader should be curious about a fact that is all but absent from this summary—absent because it is, in fact, conceptually absent from the knowledge and debate about fms. The fact is that most of the millions of patients with fms are women. Indeed, perhaps the single most interesting observation about the body of fms knowledge is the virtual absence of any reference to sex, despite the disorder’s overwhelming feminization.


  7. 3 Similar-but-Different: The Fibromyalgia Syndrome Illness Experience
    (pp. 64-72)

    Thus far, we have discussed the idea of fibromyalgia syndrome (fms) as biomedical knowledge, but now we turn our attention the experience of those living with fms. This is the first of several chapters devoted to describing the subjective experience of fms, based on interviews with thirty women diagnosed with the disorder.¹ All thirty women are white, one is Hispanic; they range in age from twenty-eight to sixty-five years with a mean age of forty-eight years; and they have an average educational level of approximately thirteen years. In each of these regards, this sample compares closely with that found in...

  8. 4 The Symptomatic Self and the Life World
    (pp. 73-89)

    Wendy: Fibromyalgia is very debilitating. I can't work anymore. It’s hard to explain because there isn’t anyone thing you can put your finger on, but it’s everything in combination. It’s like a domino factor. It starts out with achy muscles and it just goes from there. If you’re talking about fibromyalgia being debilitating in terms of working, you tell me who’s going to hire me when I tell them that they could not depend on me. I can’t handle any stress, I have no memory, I can’t concentrate, I can’t spell anymore. Would you want to hire me? You don't...

  9. 5 In Search of Meaning
    (pp. 90-108)

    For those who suffer from fibromyalgia syndrome (fms), the world is divided into those who accept fms as “real” and those who do not; the former are friends, the latter are foes.¹ The division of the world into these two opposing factions grows out of a set of encounters that characterizes the fms experience. Every woman’s fms story includes a struggle to have her symptoms recognized as real in the face of disbelief. In particular, a central· thread running through women’s fms narratives is the weaving together of illness onset and a fruitless search for its medical meaning. Their symptoms...

  10. 6 Diagnostic Transformations
    (pp. 109-137)

    In the same way that each account of fibromyalgia syndrome (fms) includes the struggle to be understood, each account also includes a moment of transformation when the sufferer learns of the diagnosis and her suffering is finally acknowledged medically. It is hard to overstate the significance this event represents for most women. It is a ceremonial or ritual moment representing the passage from desperation and isolation to salvation. Laura and Emily provide typical descriptions of how it felt to have their condition diagnosed.

    Laura: Having someone finally listening who had an explanation. The doctor asked me questions that left my...

  11. 7 Self-Help and the Making of a Fibromyalgia Syndrome Illness Identity
    (pp. 138-165)

    Having received a diagnosis marks the formal initiation of the moral career of the woman who suffers from fibromyalgia syndrome (fms), but it is just the first step in a series of experiences that enables her to understand her illness and who she is in relationship to that illness.¹ Doctors dispense diagnoses, but sufferers quickly and eagerly seek out additional information about fms.

    Phyllis: What really got me was when I started going to fibromyalgia meetings…. The doctors never explained everything, but at the meetings you learn about all this other stuff.

    Wendy: The doctors don’t tell you anything about...

  12. 8 Ties That Bind and the Problem That Had No Name
    (pp. 166-188)

    Social and behavioral scientists, including many feminists, have criticized biomedicine for its inattention to social variables and their role in health and illness. The dearth of social information with respect to fibromyalgia syndrome (fms) is typical in this respect. Published clinical research commonly gives consideration to the sex, race, and age of those with fms, but makes little use of this information beyond describing sample parameters and matching patients and controls along these dimensions to check for “spurious” influences. Moreover, as in biomedical research in general, these variables are conceptualized as solely biological, without consideration of their cultural dimension. Community...

  13. Conclusion
    (pp. 189-200)

    The fibromyalgia syndrome (fms) story is, at once, both fascinating and unremarkable. It is a fascinating story from a sociological standpoint because of the multiple forces that came together to facilitate the creation of the diagnostic category and the subsequent social phenomena. Pieces of the fms story range from large-scale cultural and economic trends down to the subjective experience of suffering and efforts to give meaning to that experience. It is impossible to condense the fms story into a unified decree and various efforts to do so—“psychogenic rheumatism,” “neurochemical disorder,” “dysregulation spectrum symptom,” “iatrogenic illness”—are all limited in...

  14. Appendix A. The Fibromyalgia Syndrome Biomedical Literature
    (pp. 201-204)
  15. Appendix B. The Interviews
    (pp. 205-210)
  16. Notes
    (pp. 211-224)
  17. Bibliography/Works Cited
    (pp. 225-242)
  18. Index
    (pp. 243-252)
  19. Back Matter
    (pp. 253-254)