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.
important issues, particularly with the emerging field of organ transplantation, and those topics plus the advent of managed care plans in the 1960s each contributed to the beginning of a marked change in how medicine and society looked at disease. With autoimmune diseases, the specific part of the body that is attacked manifests itself in a wide variety of conditions, from the joints and muscles (rheumatoid arthritis and lupus) to the myelin sheath in the central nervous system (multiple
accounts for more than 20 percent of visits to physicians. According to the Chronic Pain Research Alliance, inadequate physician training and education in diagnosing and treating just six of these pain disorders—fibromyalgia, chronic fatigue syndrome, endometriosis, interstitial cystitis, temporomandibular joint disorder (TMJ), and vulvodynia, which affect 50 million women—adds as much as $80 billion in both direct and indirect costs annually.4 From multiple doctor visits to lost wages and
productivity due to flares, chronic pain is an expensive, exhausting endeavor. Chronic pain, especially severe chronic pain, is so encompassing and omnipresent it makes concentrating on anything else other than it nearly impossible. Chronic pain can make it excruciating to engage in physical activities, keep up with a regular work schedule, or even leave the house. Over time, chronic pain erodes so many aspects of the patient’s identity that sometimes it seems all that is left is the
various manifestations; they are recognized by patients as those who are willing to buck convention and provide long-term treatment for chronic Lyme. College student and chronic Lyme patient Britta Bloomquist frames the debate by virtue of two poles, the Infectious Diseases Society of America and the International Lyme and Associated Diseases Society (ILADS). The IDSA wrote the original guidelines Bloomquist and many others find problematic, while the ILADS is researching and hoping to change
talking about something new, people who hear it hear it in their current view of the world.” For many, this context used to be that physicians know everything, patients know nothing, and patients were lucky to even get time with their physician. Culture change is not easy, seamless, or immediate on either side, and simply barging into a physician’s life with e-mail or downloaded information is not an appropriate way to bring about culture change. A now famous 2007 Time magazine article, “When