When Laurie Edwards asked me if I was interested in receiving an early copy of In the Kingdom of the Sick: A Social History of Chronic Illness in America, I thought it was a great match — I have endometriosis and hypothyroidism, both chronic illnesses. Since my diagnosis years ago I have been an avid student of how our culture responds to chronic illness- especially in women- in all facets.
Edwards herself is has a serious and very rare pulmonary disease- PCD- that acts similarly to cystic fibrosis in the lungs and requires daily physical therapy and medications. After a childhood spent with a then unnamed, overwhelming illness, Edwards ended up with a diagnosis and a career path: she is a professor teaching health and science writing, an author of books and a freelance writer– an ‘ inevitable generalist ‘ as she calls it. In The Kingdom of the Sick is, in Edwards own words, “a combination of research, literature, and stories from patients across the chronic disease spectrum.” This includes those with a more simple disease, like my hypothyroidism, all the way to AIDS or even certain cancers that act like and are treated as a chronic disease.
The personal stories of chronic illness scattered throughout the book are familiar and yet, still scary, still heartbreaking. Lives that were full and vibrant reduced inexplicably to a roar of pain, doctors, misunderstood symptoms and blame. Edwards addresses the question of blame throughout In The Kingdom of the Sick: the deep roots illness and blaming the patient has in our culture, the way that misinformation or lack of knowledge translates to blame, the way that blaming the patient transforms an already life changing disease into a socially isolating burden and the way that blame might change the treatment a patient does or does not receive- especially women.
Laurie Edwards looks at the way women in pain are thought of and treated in America, looking at both research and personal accounts of how women’s pain is too often under treated and/or considered a psychological disorder. She points out that, “[p]utting individual experience into broader context is what enabled change to happen,” in regards to AIDS treatments, and it is clear that she is attempting to do the same for chronic disease. The lack of true advocacy for chronic illness is a recurring theme throughout this book, something that I myself have troubled over. In my own experience, I’ve found that engaging people to advocate or work for most any cause (outside of notable exceptions of animals and breast cancer) is difficult, and while Edwards does not come up with an explanation for our country’s lack of social protest, she does reiterate the cost: no change, or impossibly slow change.
As the book moves forward in a chronological order, social media looms as a major player in the experience of chronic illness for patients. With access to information both scientific and personal, patients can be empowered to advocate for the best treatments, and to insist that something is wrong with them when told that classic condensation– It’s in your head.
In the years before my endometriosis (Stage Four, lesions and adhesions all over my abdomen and a 6 cm. endometrioma on my left ovary) my ongoing struggle with fatigue, IBS and all over body pain was as much a psychological trauma as a physical one. In my head, I let the guilty thought cross my mind more than once: I almost wish I had cancer or something they could find, because then I’d get treatment and understanding. Of course I did not really want cancer; what I wanted was to be allowed to have the intense symptoms of my disease understood in the work place and at home, instead of the constant worrying that I was thought of as lazy, unstable, mentally ill or maybe a secret drug addict. The skeptical, dispassionate looks and comments I heard from doctors over and over again only added to the feeling that I was a failure as a patient: I wasn’t the good kind of patient, the kind that could be labelled and treated.
In The Kingdom of the Sick is an important and interesting read for anyone living with or living with someone who has a chronic disease. With chronic disease patients making up a larger and larger portion of our population, In The Kingdom of the Sick is almost a majority.
Cross-posted with permission by Maggie May Ethridge from her blog, Flux Capacitor.