Category Archives: book review

Book Review: In the Kingdom of the Sick

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.)
3.5 stars
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.
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Book Review: How to Be a Friend to a Friend Who’s Sick

This post is part of a Patients For A Moment blog carnival that Duncan is hosting. This month’s PFAM blog carnival topic is “What is your favorite book about illness?

(Note: Those of you who interact with me via twitter, etc know that I read voraciously. This means that my favorite book about illness today may not be my favorite book about illness tomorrow. I’m going to try to post book reviews from time to time of books that I have loved or not loved and why. However, for the sake of this blog carnival topic, I decided to pick up a book that was recommended to me, but I hadn’t read yet. As such, it isn’t my favorite, but I thought it was worth writing up a post about. I’m excited to see what other bloggers chose as their favorite books. I think my to-read list is going to be growing considerably in a few days…)

3.5 stars

The book How to Be a Friend to a Friend Who’s Sick by Letty Cottin Pogrebin was recommend to me by my therapist when we were discussing how hard it is sometimes for me to be a good friend and equally to deal with unsupportive friends/family. Pogrebin started thinking about this topic when she was fighting breast cancer and noticed the varied reactions of her friends and family. The book is actually a collection of short stories from people with varied experiences intermixed with Pogrebin’s own story. What I liked about the book was that she included the reactions to friends’ behavior as well. There are Dos and Don’ts lists and varied suggestions for how to rephrase common questions that are inadvertently offensive or difficult to answer. I chuckled over her commentary and lists of commonly heard comments and questions, many of which I’ve heard myself. A lot of this advice feels obvious, but it’s easy to forget in the stress of seeing a loved one fighting what they’re fighting. Moreover, I think different people will get different things from this book based on what their experiences have been so far and what sort of guidance they are looking for. It did seem a bit long, but I think that’s partially because it’s clearly geared to be helpful even to people who have never had an ill family/friend before.

I think the trick to reading this book (for both patients as well as friends/family) is to try to keep an open mind, remember that everyone’s needs are different, and not to get too offended when you disagree with something that Pogrebin or one of interviewees opined. The book is theoretically aimed at the friends/family of patients, but I think patients can get a lot of out of this book as well. One of the things that made this book feel more appealing for me was the inclusion of incidents in which Pogrebin felt she had failed her friends/family in terms of offering support. And, in truth, even a person fighting a chronic illness can be inadvertently unsupportive of someone else fighting the same illness, because the two people have completely different needs from their friends. There is no one size fits all answer to the “How do I be supportive?” question, and this book drives that home.

As a patient, it’s nice to hear stories that show me that I’m not the only one that has struggled with incidents where friends/family that I rely on were unsupportive. However, reading through these stories was also a great reminder that people generally don’t intend to be unsupportive. They want to help, but they don’t know how to help ME. I emphasize that because one thing that struck me as I read this book was that with so many people fighting so many varied illnesses, especially when combined with how much each person’s needs vary from the next, it’s entirely possible that friends/family are doing what they were told was helpful and supportive for someone else. If you’re told that it was helpful once, it stands to reason that you would offer the same help/advice again. From a patient’s point of view, one of the best things that I got out of this book was a reminder that I need to be clear about what I need from people. It isn’t fair to always assume that they’ll be able to guess, especially if what I’m going through is totally beyond the context of their own experiences or that of their other close friends/family. Reading what worked for other people gave me some new ideas of how to direct my friends/family towards what is actually helpful, hopefully without making them feel hurt or offended, because I know deep down that they’re only trying to help.

For friends/family looking for ideas on how to be supportive, this is a really good place to start. Reading different people’s experiences might provide a more detailed and diverse view of what a patient is feeling in these circumstances. This book may also provide some guidance of what is commonly found to be offensive. Of course, what one patient in the book found helpful might be totally offensive to your own loved one. However, the book can only provide a limited amount of guidance here. This is what I would suggest: I think that the lists of Dos and Don’ts are a good place to start. Pogrebin also included helpful re-phrasings of common questions/comments. For example, “What are you feeling right now?” instead of “How are you feeling?” or “I can only try to imagine what you’re going through.” instead of “I know just how you feel.” These are a good start, but at the end of the day I think that most people would be open to your sitting down and saying “Hey, I can’t begin to understand what you’re going through, but I really want to be supportive. Here are the things I’ve read, but I don’t know whether they apply. What would be helpful for you?” Remember, though, that if you ask and then don’t follow through, that person is going to be even more confused. The fact is, if you’re reading blogs and books to find out what you can do to be helpful, then you’ve already realized that you don’t have the information that you need. Blogs and books like this one can get you part of the way there, but you need to be able to customize that information to your loved on. There’s only one person who can tell you what you truly need to know, and just sitting down and having an open conversation shows how much you care and makes it possible for both of you to be happy in your friendship.

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