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CHAPTER 7 Struggling to Make the Treatment Work In mid-June S. left her home base in southern California to spend five months on the East Coast. Her plans called for passing the rest of June in her second home in New York'sHudson River Valley, followed byJuly and August in a lakeside cottage in the Maine woods. In September she would return to her New York home and remain there through the fall, returning to California around Christmastime. Her main project for the summer and the fall sabbatical was to write a book on the birth-control program in China. Shehad worked hard for a good many years to create protected time to write this book. She had even taken a pay cut to get an early sabbatical. To be sure, during her months on the East Coast S.spent every hour she could working on that project. But her body was not well. Throughout the summer and fall her bodily ills kept intruding on her life, forcing themselves to the top of her mental and emotional agenda. When the body is not well, when sleep refuses to come, when the head throbs and the back and neck complain of pain, the mind loses its acuity. And so it was that her precious sabbatical came to be used up by her struggles to get well. This chapter tells the story of S.'s battles to gain control over the physical symptoms of her new disease. In a mid-June appointment, Dr. D. had declared victory over the arthritis and fibromyalgic tender points. But we have seen how the notion that her illnesseshad been vanquished rested on a peculiar discourse in which some symptoms simply did not "count" in the doctor's evaluation of how shewas doing. Symptoms that troubled the patient but did not figure in the doctor's assessment included the sleep problems, which had been only partly resolved, and the new symptoms of "fibromyalgia," especiallythe headaches and back and neck pain. These complaints did not count, because the doctor had no "objective " measures of them and because, in the case of the headaches and back pain, they were not the problems he had set out to fix, but annoying new symptoms that had cropped up after the initial diagnosis had been made. Another reason that these symptoms did not count was that 193 194 / A Losing Battle to Get Better there was nothing else the doctor could do about them; by definition, then, they were the patient's problems, not the doctor's. Commuting the rhetoric of biomedical infallibility into a concrete blueprint for further treatment, scientific medicine had assigned the patient full responsibility for the symptoms that medicine itself could not measure or fix. Because these physicalproblems had to be eased before S.could write, to say nothing of enjoy her life, S. found herself devoting most of the summer and fall to finding ways to reduce their severity. According to her doctor's microenvironmental theory of fibromyalgia, she could reduce the pain and become "more functional" by closely monitoring her activities and by cutting back or eliminating those that produced pain. The chapters in this fourth part of the book show how the logic of this treatment discourse worked itself out on the patient's body and life. During the summer S.put this theory into practice, making it the cornerstone of her disease-management program. This chapter records the ups and downs of her struggle to make the theory work. The chapter moves chronologically through the summer months. It begins by describing the arrangements that S.worked out with her doctor to obtain care from afar. It then turns to the successes and failures of her summer of struggle. For the first month the disciplines of self-surveillance and self-restriction felt veryempowering, as S.discovered activities that made her pain worse, eliminated them, and enjoyed temporary respite from the pain. But this high came crashing down in late July, when she suffered a seven-day headache that had no discernible cause. Early August brought a second high of self-discovery and apparent pain reduction. The summer ended on another low when S.used her charts to compute some long-term statistics on her success in putting her doctor's treatment discourse into practice. The numbers brought dismaying news: despite her mighty efforts, the symptoms were anything but under control. Why the results of treatment fluctuated so wildly we discover only in a later...


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