In the Kingdom of the Sick: A Social History of Chronic Illness in America
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.
is a society that values youth, physical fitness, and overachievement. By the middle of the twentieth century, this elevation of the importance of the perceptions of others played out in rigid social conformity, as well as in anxiety about that conformity. Scholars and writers of the time worried that people were living in “slavish compliance to the opinions of others—neighbors, bosses, the corporation, the peer group, the anonymous public.”8 Given the external events of the time—McCarthyism, the
emerged during this time period. While some of the most powerful disclosures (such as the Beecher article) came from physicians themselves, many also feared the intrusion into the private relationship between doctor and patient and the resulting changes in power they made possible. When physicians at the Peter Bent Brigham Hospital (now Brigham and Women’s Hospital) in Boston successfully transplanted a kidney from one identical twin to another in 1954, it was a milestone in surgical history as
but he or she could have needs very similar to those of the person with a more obvious physical problem. With visible disability, noticeable symptoms are both cause for comment and discrimination as well as the “evidence” through which individuals can access resources and accommodations. With invisible illness, the very same lack of obvious symptoms that allows us discretion over when to disclose illness can lead to further isolation or alienation. As a college writing instructor, I’ve seen
is a great avenue to explore for health care innovation and product marketing. Since next-generation health and health care is largely about driving behavior change through getting trusted information, where better than Facebook and other similar sites to get the word out virally about new solutions and products and to utilize ‘positive peer pressure’ for better living? Patients will be able to benefit from higher-value-added products and services and experience real life change,” says Tony Chen
Disease, www.fightchronicdis ease.org/issues/about.cfm. 2. “SWHR Timeline,” Society for Women’s Health Research, www.womenshealthresearch.org/site/PageServer?pagename=about_timeline. 3. Porter, The Greatest Benefit to Mankind, 15. 4. Sontag, Illness as Metaphor and AIDS and Its Metaphors, 3. 5. Porter, Greatest Benefit to Mankind, 29. CHAPTER 1: FROM PLATO TO POLIO 1. Wall, Encounters with the Invisible, 8. 2. Kamen, All in My Head, 90. 3. Sontag, Illness as Metaphor, 6. 4.