Thirty years ago, Susan Sontag 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."
Now more than 133 million Americans live with chronic illness, accounting for nearly three-quarters of all health care dollars, and untold pain and disability. There has been an alarming rise in illnesses that defy diagnosis through clinical tests or have no known cure. Millions of people, especially women, with illnesses such as irritable bowel syndrome, chronic pain, and chronic fatigue syndrome face skepticism from physicians and the public alike. And people with diseases as varied as cardiovascular disease, HIV, certain cancers, and type 2 diabetes have been accused of causing their preventable illnesses through their lifestyle choices. We must balance our faith in medical technology with awareness of the limits of science, and confront our throwback beliefs that people who are sick have weaker character than those who are well. Through research and patient narratives, health writer Laurie Edwards explores patient rights, the role of social media in medical advocacy, the origins of our attitudes about chronic illness, and much more. What The Noonday Demon did for people suffering from depression, In the Kingdom of the Sick does for those who are chronically ill.
©2013 Laurie Edwards (P)2014 Audible Inc.
The narrator had an odd habit of taking on attributions, so every "he said" or "she said" sounded odd and disjointed.
Overall this is a solid book, outlining the history of chronic illness in the United States, both from a medical perspective and, largely, from a patient perspective. There is some excellent insight to glean and a lot to think about, especially as our longer lives mean more of us will deal with some form of chronic illness. Of course, such illnesses run the gamut from the most miserable conditions that cause constant pain or extreme fatigue or other ailments that severely limit many life activities, to milder conditions that either can be reliably controlled with medication and lifestyle changes (e.g., some forms of diabetes) or issues that can be tolerated as a "new normal" (some forms of allergies and asthma). In the end, the book got repetitive and I think the author's desire to be accommodating to everyone's opinion ran astray. Though the author appears to understand that there is absolutely no scientific evidence linking vaccines to autism, she did not make the point strenuously enough. I also thought the author (who deals with a number of diseases and has been chronically ill for her entire life) showed a little short-sightedness in her conclusion when she recounted how some friends and family questioned her decision to have children given that her condition is likely genetic. It isn't that I think a genetic condition means no procreation, but I likewise know that many parents screen for conditions (especially debilitating ones) or screen themselves and their partner to ensure that no deadly conditions will inadvertently be passed on. It seems irresponsible to sweep aside such questions out of hand, only stressing her emotional reaction to people asking if she had considered whether or not it was a good idea to have children, rather than enlarging the discussion as she did for other topics in the book.
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