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.
http://progressreport.cancer.gov/doc.asp?pid=1&did=2007&mid=vcol&chid=71. Accessed September 1, 2011. National Capital Poison Center. “Vaccines Do Not Cause Autism.” www.poison.org/current/autism%20and%20vaccines.htm. Accessed December 28, 2011. National Center for Complementary and Alternative Medicine. “About NCCAM.” http://nccam.nih.gov/about/. Accessed August 12, 2011. National Hospice and Palliative Care Organization. “NHPCO Facts and Figures: Hospice Care in America.” 2011. National
the rest of my life. I will never know what it is to be “healthy,” but I have learned that it is not worth the time and energy to lament or miss something you never had. I blog about chronic illness, I e-mail my doctors and log medical data on my iPhone, and it is only through technology that I have spoken to or met anyone else with my rare disease, PCD. As one of my interviewees, e-Patient Dave deBronkart, described it, today’s health care system is like a mobile with billions of pieces
fully retracted an article that linked XMRV to chronic fatigue syndrome, due to contamination of blood samples and misrepresentation of data.23 A diverse and expanding body of research conducted in the 1990s found sex-based differences in risk of disease, progression of disease, responses to treatments for diseases, and overall outcomes of disease.24 The focus intensified in 2001, when a groundbreaking report was published by the Institute of Medicine at the behest of the Society for Women’s
professionals give me their time and insights. This book is unquestionably richer and more complex thanks to these conversations, and I would like to especially acknowledge Cynthia Toussaint, Dr. Sarah Whitman, Melissa McLaughlin, Barbara Kivowitz, Alicia Cornwell, Janet Geddis, Emerson Miller, Dr. Joe Wright, Amy Brightfield, Jennifer Shaw, Dr. Kevin Pho, Dr. Val Jones, Dr. Gwenn O’Keefe, Susan Tannehill, Phyllis Greenberger, Ginger Taylor, Gina Terrasi Gallagher, Duncan Cross, Dr. Barry Popkin,
Brief History of Disease, 33. 22. Herek, “Thinking About AIDS and Stigma,” 595. 23. Kennedy, A Brief History of Disease, 76. 24. Porter, Greatest Benefit to Mankind, 122–123. 25. Ibid., 123. 26. Ibid., 125. 27. Ibid., 130. 28. Ibid., 257. 29. Kelly, Medicine Becomes a Science, 1. 30. Ibid. 31. Ibid., 8. 32. Porter, Blood and Guts, 44. 33. Kelly, Medicine Becomes a Science, 12. 34. Sontag, Illness as Metaphor, 14–15. 35. Maugham, “Sanatorium,” 545. 36. Kelly, Medicine Becomes a