In the Kingdom of the Sick: A Social History of Chronic Illness in America
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Thirty years ago, Susan Sontag famously wrote, "Everyone who is born holds dual citizenship, in the kingdom of the well and the kingdom of the sick . . . Sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place." More than 133 million Americans now live with chronic illness, accounting for nearly three quarters of all health care dollars and untold pain, disability, and heartbreak. Patients with diseases as varied as HIV, cancer, or type 2 diabetes have been stigmatized, accused of causing their preventable illnesses through their lifestyle choices. People with irritable bowel syndrome and female patients with chronic fatigue syndrome have been told their symptoms were due to anxiety; and millions of people with chronic pain have faced skepticism from physicians and the public alike. What The Noonday Demon did for people suffering from depression, Laurie Edwards does for those who are chronically ill, championing their cause and giving voice to their lament.
funds raised, and miles walked—the concurrent advent of chronic fatigue syndrome tells a different story altogether. There are no pathology reports, surgical notes, or arsenal of chemical agents to treat it the way cancer is managed. There is no expectation of survivorship, partly since there is no cure, but partly since so many of us are quick to deny its existence in the first place. It was the late 1970s and early ’80s when a flu-like illness first began sending patients, many of them female,
anxious and not sleeping well will feel poorly, or have trouble concentrating. But what if the person is anxious because he or she has been sick for weeks or months and physicians can’t seem to help? What if the person is depressed because he or she is at home sick, isolated from social events and falling behind in work? Who is to judge which comes first? This is why a concrete label and, more notably, a specific medical cause for the symptoms is so important to patients. The controversy over
Institutes of Health] Revitalization Act, a law written with direct input from the Society for Women’s Health Research that mandated women and minorities be included in all federally funded clinical research and that Phase 3 clinical trials to bring drugs to the market be analyzed by sex.8 The same hormonal and physiological differences between men and women that were problematic for women’s health activists in the 1970s are especially important in terms of how medications and dosages work in
to work on the problem, we are met with at best being placated. At worst, they go after the doctors who help us, attack us in public, use the phrase ‘desperate parent’ regularly,” Taylor says. “Good faith absolutely [has been] destroyed; the only thing that can change is getting corrupt public officials fired.” I asked Taylor about the charge that evidence-based medicine does not support any link between the development of autism and vaccinations. She disagrees there is no link between vaccines
to be missing so often is collaboration. It is a new iteration of an all-too-familiar problem. When I consider the Tired Girls, those living in chronic pain, or those living with rare or hard-to-diagnose diseases, the absence—or at the very least, the perceived absence—of collaboration lays claim there, too. I mentioned a pendulum swing in terms of parental attitudes toward vaccination, but both examples in this chapter illustrate a broader shift, too. In mid-twentieth-century America, science