I’ve been waiting to read this book for a long time. This is an important book – SO important. If you do not have a mysterious illness or know someone who does, then you are in the minority. What I mean by mysterious illnesses are things like fibromyalgia, lupus, Lyme disease – but also the lesser known ones like Ehlers-Danlos, dysautonomia, POTS, gastroparesis and so on. Most of them are autoimmune but not all. Also, these diseases have a huge percentage of female sufferers. The hallmark of this experience is that these diseases are women’s diseases, and when women try to figure out what is wrong with them, they are not believed by the medical establishment and it takes YEARS to get a diagnosis, almost always. And then when they do get a diagnosis, there is often not very good treatment at all.
I work with chronic illness so this book was not a huge surprise to me. This is Ramey’s memoir of her own journey with unexplained chronic illness, but the story is a familiar one to me. The level of disrespect from doctors, the insistence that it is a psychological condition, the fight to get treatment, and even the medical malpractice. I wish I could say I’ve never heard these stories, but I hear them all the time. If you are a therapist, you ARE going to have these clients, and you must read this book, because we therapists can do a LOT of damage if we go the “think positive” or “your thoughts are creating your reality” route. You need to understand that these are real experiences, and that being believed and validated is the best medicine there is.
Not only does Ramey give us the blow by blow of her own health journey, but she also gives a lot of science, philosophy and treatment ideas for these issues. There are things that most Western doctors do not believe in that really might help for these issues, and there is a lot of solid science behind it, despite their disbelief. Things like adrenal fatigue and cortisol issues, the HPA axis (hypothalamic-pituitary-adrenal axis) and so on. Not that we would give medical advice as therapists, but if our clients are talking about these things, it would be good if we don’t have to suppress and eye roll because we think they are “googling” their illness (something they get accused of a LOT).
Ramey also talks about some philosophical issues, like how our society really values the masculine and undervalues feminine qualities (like rest, self-care and so on). Also, many of these chronic illness sufferers are HSPs (highly sensitive people), or are too nice and do not know how to say no or fight for themselves – or they’re afraid to, as then they are labeled “hysterical” or too emotional and — you guessed it, told once again that it’s all psychological.
Ultimately, Ramey gives advice that won’t seem super over the top or unusual, but bears repeating in this context. Eat real food, get gentle movement going, reduce stress in any way you can, learn to speak up for yourself, believe women and build community. But she also gives some other more specific advice, like telling us how useful low-dose naltrexone can be, for one. (I take low-dose naltrexone for my mild case of Ehlers-Danlos, and I also really believe that it works).
Ultimately, I do think that every therapist and mental health professional should read this book. I wish that everyone would read this book, because I think our society would be better off. As I said at the beginning, if you do not know a woman with one of these mysterious illnesses, you would be in a small minority. They may not talk to you about it, because they may not view you as supportive. But you would be if you read this book, which is why you should!
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