In The Kingdom Of The Sick

In The Kingdom Of The Sick by Laurie Edwards (2013) is a social history of chronic illness. Edwards explores both historical and modern attitudes towards illness and disease. She starts with the ancient Greeks and makes her way up to modern times. From the belief that illness was supernatural in origin, through the belief in the middle ages that diseases were moral punishments for living in sinful ways, and up to the modern era where many illnesses can be cured or prevented (primarily through our understanding of viruses and bacteria as well as vaccines).

This book gave me a lot to think about. She explains the historical settings very well and uses anecdotes from patients as examples. Two such examples involve patients living with HIV/AIDS and patients living with Chronic Fatigue Syndrome (CFS) in the 80’s and 90’s. Both groups were regarded by the public in very negative ways. In the case of HIV/AIDS patients the societal view was that people became infected by making poor choices. Essentially they got what they had coming. With CFS the attitude was that it was a yuppy flu. A psychosomatic illness that primarily affected middle to upper class women.

In the 80s and 90s there were major social movements to educate the public about the realities of HIV/AIDS and there were some major changes in perception. Now, with modern treatments, patients can live for decades after contracting HIV, and it is no longer primarily affecting an already maligned community. We understand now, as a culture, that anyone can get AIDS. Another community that successfully created cultural changes was breast cancer survivors. There are walks and merchandise galore for raising funds for breast cancer research. This is one of the major ways that we got the image of the disease survivor.

In a case like CFS though the patients don’t die from the condition, nor do they ever recover from it fully. This category of illnesses, wherein you do not die or get better, has not successfully mobilized for social change, primarily because we are all too tired to do walks and fundraisers most of the time. Many but not all of these conditions seem to affect women more often than men which has led to the nickname “the tired girls.” As a tired girl myself I have to admit, the moniker fits. The image of the survivor is particularly damaging to this population. What does survivorship look like for us? Most of society is just waiting for us to “get better” so we can be “survivors” but that’s just not how these conditions work.

I found this book extremely informative and thought provoking and I encourage you to read it. Edwards does a fantastic job telling history in such a way that the reader cares about it. She explores the questions that we, as a society, will need to answer in the coming years. Questions of the patient’s role in modern medicine, how technology will be a part of medicine, and what areas we will need to focus our research on. It’s estimated that by 2025 half of the population will suffer from a chronic illness of some sort. This conversation should not be put on the back burner any longer.