Over the last two days I read Laurie Edward’s stunning book – In the Kingdom of The Sick: A Social History of Chronic Illness in America. Several weeks ago I read her first book – Life Disrupted: Getting Real About Chronic Illness In Your Twenties and Thirties. The quality of the first book led me to the second, and I was not disappointed. (Note: I write this review knowing I can’t do this book justice. The story Edwards tells is quite involved and incredibly well researched, so I recommend you read the book for yourself and write your own narrative in response.)
In The Kingdom is a rant – but the best kind of rant. Please know that I bring my own baggage and filters to my reading of the book, so that’s just my reaction. Truthfully, you might not even notice that it is a rant because Edwards so skillfully weaves in an amazing account of the history of chronic disease in America. I can’t imagine how much research went into putting the volume together. Edwards is the first person that I can remember quoting post-structuralist French philosopher and social theorist, Michel Foucault, since I was in graduate school! If this book were a website you’d say that it is “content rich.” In many ways, it is a (much needed) history of women and chronic illness – and it was fascinating. Whatever label you put on this text, it is powerful and engaging.
As I looked upon this book, preparing to read it, I wasn’t excited. Truthfully, diving into a two hundred-page book about chronic disease seemed like a chore; however, Edwards has penned a text that is enlightening, particularly for one who does not have a chronic disease or chronic illness or chronic condition (choose your language). And yes, the book and its themes are challenging. They force the reader to think about and challenge existing conventions. Throughout the book the reader is educated. Edwards teaches us. She covers a lot of expected ground like AIDS and the controversy over vaccines and autism, but she also journeys into other unexpected areas including the issue of pain and gender. She goes into detail discussing the bias in American medicine against treating women for pain due to the perception that their reaction to pain is more “hysterical” and not grounded in biology. You know the stereotype: men are more stoic and women are histrionic. (She then shares studies that point to the fact that the way women experience pain is actually different from the ways in which men experience pain.) Edwards’ account is memorable and important. To think of pain as a psychological weakness is to blame the individual for his or her experience with pain. That kind of thinking has been all too prevalent in the past.
In reading Edwards’ work, you can’t help but develop a better understanding of the dilemma facing people with chronic disease. As a society, when we don’t understand an illness, we tend to blame the individual/patient. Historically, this has been the case with many in the medical profession, as well. We are far better at dealing with illnesses where there is a cure at the end of the rainbow. But with chronic illnesses, there is no end to the journey – no immediate cure that comes with the diagnosis. And we have difficulty wrapping our minds around that. So often we blame the individual with the chronic condition, sometimes out of fear, and often out of misunderstanding. This has certainly been the case with AIDS, and has also been the case with illnesses like Fibromyalgia that are difficult to diagnose and where the diagnosis is often based on the presence of a variety of symptoms, rather than a definitive test or diagnostic procedure. Chronic Lyme disease and Fibromyalgia are both hotly debated diagnoses.
I could go on and on. The lessons in this book are too numerous to recount here. Let me just say this: If you work in healthcare, you should read this book. Check it out here.