Here is my review of a book about living with a connective tissue disorder called A Guide to Living With Hypermobility: Bending Without Breaking, by Isobel knight.
This book is covers connective tissue disorders from the perspective of patients – how they feel about it, and how it affects their lives. At the beginning of the book it goes over the signs and symptoms of two connective tissue disorders: Joint Hypermobility Syndrome and Ehlers-Danlos Syndrome. The book then discusses the most common symptoms for each stage of life so you can see how the disease tends to progress. It also discusses the various therapies that people have tried for connective tissue disorders and what symptoms they helped with. Much of the book that contains personal anecdotes from people about how having a connective tissue disorder has negatively affected their lives and how miserable it is to live with it. There is an intriguing discussion of how people with connective tissue disorders tend to be attracted to ballet lessons as children because it helps them with proprioception and coordination. And then there is a huge discussion of the author’s struggles to try to continue her education to become a professional ballerina in spite of the fact that it caused her body to crash from muscle and joint overuse every month.
Overall, I found the section of the book at the beginning that discuss the symptoms and the signs of connective tissue disorders to be the most useful part of the book. It had lots of good pictures and as I was going through it I felt like a lot of it was stuff I could relate to. There was a very complete discussion of the symptoms you can have throughout your life in this book, which convinced me to start looking into whether or not I might have a connective tissue disorder myself.
One of the things that really disappointed me about this book was that so much time was spent on anecdotes of how miserable the illness is and there really wasn’t much practical advice given for getting through your day-to-day life. At the time I read this book (3 years ago), I hadn’t really had my the worst struggles with the illness yet, so reading all those anecdotes about how miserable everyone was frightened me more than it helped. The first thing I wanted after realizing that I probably had a connective tissue disorder was practical advice on how to live with it.
Another thing that really bothered me about this book was the fact that it spent so much time discussing the author’s personal choice to keep pushing her body to the limit, even though it made her sick. I couldn’t help feeling throughout most of the book that she might have felt better and been happier if she had simply stopped pushing her body so hard. However, I realize this is a personal choice and it seems to me that she was in more pain to begin with than I was, so perhaps being easier on her body wouldn’t have helped her as much as it has helped me. I do think that it would have been better if she could’ve included the perspective from someone who did give up doing the activities that strained in their body and discussed what it was like making that decision and how they felt about it afterward. Some people’s bodies, like mine, never really give them the option to keep pushing. It would have been reassuring to hear from someone who had already been through the struggle of giving up their favorite physical activities.
Ultimately, if you are newly diagnosed or trying to get diagnosed, this is a great book to start with if you are looking for emotional support, especially if you’ve struggled a lot with severe pain and getting other people to take your illness seriously. If you are looking for more practical advice, I suspect the Joint Hypermobility Handbook by Dr. Brad Tinkle would be a better place to start. I’m planning to do a review of that book once I finish reading it.