This post is part of a Patients For A Moment blog carnival that Duncan is hosting. More specifically, it’s part of Duncan’s “ILLiteracy Project” carnival.
(Note: Duncan chose the book and has asked that we focus on reflection and not on the book’s topics which he will outline.)
Before I can lay out my thoughts on In the Kingdom of the Sick: A Social History of Chronic Illness in America by Laurie Edwards, I must make a confession. I have a masters degree in public health. This means that I have studied this topic in a lot of detail. The interplay between the ill and society was a topic of strong personal interest to me long before I identified as one of the ill, and I have therefore done a lot of reading on the topic even outside of my classes. Obviously, this colors my view of a book like this, so please take what I say with the appropriate grain of salt.
I had mixed feelings about this book. This is a topic that I have a lot of interest in, and yet I found that it rambled on a lot. Contrarily, I would have liked more detail, because while she covered a lot of years and a lot of changes, the detail in each of those areas wasn’t sufficient to satisfy me. (I will freely admit that it probably would have been discouragingly long had she actually elaborated that much.) However, I think that this is a good introduction book. If you find the topic of the relationship between society and chronic illness – no matter whether that is a general interest, an interest due to your own experiences of living with an illness in our society, or the experiences of a loved one – of interest to you, then this might be an interesting book. This is true if you are looking for a comprehensive historical timeline or a general introduction, or are interested in the shifts over the years. If you are interested in a specific interplay or illness, then this probably isn’t what you’re looking for. Edwards hits on an extensive list of issues and topics, which a reader could go look into in more detail if needed. There is a comprehensive bibliography in the back.
Edwards fights chronic illness herself, so I was expecting this book to hit me on a more personal level. The cases shes uses to demonstrate and detail the topics were compelling, but it didn’t feel like her own experiences really came through. That being said, her description of what it’s like to be suffering but unable to get a diagnosis certainly struck a familiar chord with my own experiences. I appreciated the cases, because public health is often a lot of dry statistics, with the personal experiences lost to the sands of numbers. It’s validating to see that my own experiences with and views on how society views illness are supported by Edwards’ extensive research (both the technical and the personal testimonies.) More specifically, I liked the way she interwove the stories with the history she was trying to present. She gave the stories context in the historical social timeline, which was interesting to me from an academic point of view, but less so from a patient point of view. In some ways, it’s a validation. It says “See? This patient wasn’t crazy! Society really did believe/act in ___ manner!” On the flip side, I felt as if the feelings in the story were marginalized in the process. I’m sure she didn’t intend that, and most people will probably disagree with me, but it felt that way to me. I think it felt that way because the narrative line of the story got a little muddied. Of course, the topic is the social history of illness in the US, with the stories used as illustration, so I guess that’s excusable.
Edwards also did a great job with overarching themes and the changes provoked in them as society, science, and public policies changed. This provides the reader with a chance to put some thought into, “Okay well what we have now isn’t stellar , but how much worse was it in the [enter decade of choice here]?” or “Was it really better in that decade? Is it really better now?” and so on. I also thought that she had some thought-provoking moments in the discussion of how the realities of living with chronic illness could run contrary to the goals of major movements like Women’s Suffrage simply because a patient was unable to claim the rights they were fighting to receive due to the limitations of illness. Most interesting, for me, was the discussion of the Disability Rights movement and how that didn’t always line up with the needs of chronic illness sufferers. There is, to this day, a lot of debate over the definition of “disabled” and who should qualify for the definition and therefore the rights afforded to it. The discussion of chronic pain was also well done. She wasn’t withholding any punches, and I liked how she included the contradictions involved in the judgement felt by people who suffer from chronic pain. Pain is, first of all, by its very nature un-measurable, because everyone’s perception is different. This is compounded by the fact that if you stay in bed, then society likes to think you’re lazy and you’re in pain simply because you won’t push yourself through it. Meanwhile, if you drag yourself out of bed, you not only aggravate your pain but are also judged to be exaggerating, because if you could drag yourself out of bed, then you couldn’t possibly be in that much pain could you?
As a patient, I think there was certainly a lot of validation in reading this book. It’s thought-provoking and it does give readers a lot to think about. I think people who have no personal relationship with chronic illness (their own or a loved one’s) but an interest in the general topic could get a lot out of this book. There are a lot of places where I got pretty indignant about the realities of the society-chronically ill relationship over the years, and I think that speaks to the fact that it was well written enough to engage my emotions. I liked the emphasis on the fact that illness is a natural part of living. Granted, the idea of chronic illness, especially at a young age, is not part of our societal construct, but illness itself is part of human existence. We are born, we live, we are ill, we die. Environment and genetics certainly play roles in this, but they aren’t the only things that are involved. A person healthy enough to take part in long distance bike races today could be hit by a car tomorrow and have chronic pain for the rest of her life. The line between the kingdom of the well and the kingdom of the sick is paper thin. I’m choosing to skip a discussion on the psychology involved in the human denial of illness, simply because it would take multiple blog posts to cover with any semblance of adequacy.
The one thing that kept leaping out at me, though, was this fact that despite the over 150 million chronic disease sufferers in America (there are those pesky public health statistics again!), we don’t have a unified face. Our illnesses often keep us restricted to our homes or even our beds. However, with the advent of the internet, I believe that this is slowly changing. We have blogs. We have forums. We have Facebook. We have Twitter. We have YouTube. We don’t have to be isolated anymore. I think Edwards made a good point with that – we don’t have the voice we need to have within the world of health care and public policy, let alone society at large, because we were never able to truly rise up before. We can now though.