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CHAPTER 12 Out from under the Medical Gaze Dr. D. had undertaken eight months of "aggressive treatment" to fix his patient's ills. It took the patient six more months to heal the physical wounds he had inadvertently inflicted on her. The psychological damage would take much more time to undo. There were no doctors who specialized in curing iatrogenic disease, biomedicine's technical term for physician-induced illness; nor were there practitioners who treated the psyche and soul of the ill-treated patient. So S.had to improvise her own path to healing, calling on friends, family, and many kinds of specialists to help. This chapter describes some of the paths she followed and what she learned along the way. Routes to self-healingincluded conventional strategies as well as less conventional means—religious rituals, psychotherapy , and more. It was a project not only of healing the body but also of building a new subjective self. Now free of Dr. D.'s control, S. realized how deeply the diagnostic gaze of medicine had penetrated, disconnected, and redefined her inner being. The attendant treatments had then expunged so many core parts of her identity that there was barely a shred of her former self left. S. now faced the urgent task of creating a new self, one strong enough to resist the incursions of biomedicine in the future . In her quest for self-renewal S. discovered how wrong many of her taken-for-granted assumptions about scientific medicine had been. She had already lost her faith in the mystiques of truth, objectivity, and beneficence surrounding D.'s practice. Now she was forced to see that medical science at large was not at all what she had imagined. Her experience made her realize that guidelines created by the scientific community may be ignored by community members at no peril; that medical science as an institution takes no responsibility for the errors of individual practitioners; and that scientific medicine routinely damages the patient's self yet leavesreconstruction of the fractured person to other social institutions. These insights suggested broader problems in the practice , accountability, and ethics of American medicine. I return to these 275 276 / Rebellion and Self-Renewal in the conclusion. The winter and spring brought week after week of such disturbing discoveries, until one day S. woke up knowing that the long journey from night to day was over. Unraveling the Diagnostic Difficulties Knowing now that the root cause of all her problems was Dr. D.'s diagnosis , S.hastened back to the science library to find out the official diagnostic criteria for her erstwhile disease. It was curiosity that sent her back to the library; she wanted to see how her doctor's practices compared with the internationally accepted guidelines established by the American College of Rheumatology (ACR). The thought that Dr. D. might not have followed those criteria never crossed her mind. He was a specialist in the disease; how could he not know, or not adhere to, the guidelines of his professional association? But that is precisely what she discovered had happened. The official diagnostic criteria for fibromyalgia are listed in table 3. What they indicate is that, for a diagnosis of fibromyalgia to be correct, two conditions must exist: the patient must have complaints of pain lasting for at least three months in all four quadrants of her body and the physician must detect by palpation methods eleven of eighteen clearly specified tender points. Dr. D. had not followed these criteria in deciding that S. had fibromyalgia. He had slighted the "subjective" pain criterion and based his diagnosis on his tender-point count as well as on the presence of a common symptom of the disease, the "sleep disorder" and associated fatigue. That these were the criteria he used is clear not only from S.'s notes on the appointment, described in chapter i, but also from the report he wrote for her patient file after the initial consultation: "She has associated fibromyalgia with accompanying nonrestorative sleep pattern and 18 out of 18 tender fibrositic points" (Dr.D. Report, March 8, 1996). Reading further in the biomedical literature, S.discovered that the diagnosis of fibromyalgia, which Dr. D. had presented to her as a straightforward matter, was a hugelycontentious subject among his colleagues. A number of them complained about problems of tautology in the interpretation of the tender points. (Ireturn to this issue in the book's conclusion .) Still others worried about methodological problems. A major difficulty...


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