I found much of this book powerful and compelling reading. But I also felt quite strongly that it should have been two books. For me, the first book would have ended when the author finally got an accurate diagnosis of her condition. It would also have been divided into much shorter chapters, instead of lengthy chapters with un-headed sections. There's so much in here, and really I'd like to have read it all more slowly, with bigger pauses to take in what was going on. Definitely two books' worth of writing.
The main narrative, for this reader at least, is at first driven by the impetus to know what is actually wrong: why is the author having so many joint and bone injuries? What is the reason for the suffering? She writes beautifully about the experience of living inside her tricky body. Her perception is utterly convincing. I related to everything she said, even though I've never had similar issues.
But then I began to realise I did, between 16 and 32, have a condition that baffled doctors and that I felt was my fault, and possibly even imaginary. And eventually, it was correctly diagnosed and treated, although only because I had read every relevant book I could lay my hands on. In my case, I did get better, though not completely better, because (like the author here), you have to learn to accommodate certain aspects of the way your body works. And it's rarely exactly like you think it ought to work, and certainly not like in films.
The issue of not getting better is what takes over in the second half. It's more philosophical and less incident-based. In fact, some of it is deeply philosophical, and there are parts that draw in Dorothy Wordsworth and other literary characters. Some of this felt less relevant and interesting to me, though it was clearly central to the author's preoccupations. The issue that was of considerable interest was the ongoing issue of how to live well with a condition that really limits what you can do. Not only limits it, but can make existence literally and psychologically painful. It's a really important theme. I just wasn't always wholly convinced she was addressing it clearly and concisely.
I was totally with her in the first half, or the parts leading up to the diagnosis. Probably less so in the second half where she also spends quite a bit of time reflecting on her genes and thinking about ancestors who might have shared certain aspects of her condition (including Rob Roy). But still, even if there had been two volumes instead of just one one, I would without doubt have read the second one. The very end is lovely. You feel the author is someone you would like to meet, someone whose work you'd like to read more of.
You don't have to have an illness to be its target reader. I used to teach in a further education college, and I remember noticing how many of the young adults in my classes were afflicted with physical issues of one kind or another. Few of them seemed to be bursting with health, though none of them thought of themselves as ill. In fact, the ones who were really fit and energetic were noteworthy exceptions. Many of them had IBS type pain. A couple in every group would be concealing hearing issues, or be unable to see the whiteboard because they weren't wearing glasses. Often I was made aware of a diabetes sufferer, as well as epilepsy, and autism.
Often, the problems would be invisible. I remember interviewing for a class of older (but not old) students, 'adult returners' we called them. One woman was so stunning looking that I timidly suggested to her that perhaps she might dress down a little in class (I was worried that the others wouldn't like her because she looked like a fashion model). As the term went on, and various class members talked about their life experiences, it became clear that this particular woman had a long history of eating disorders. She was far from well, but she made good relationships, and others in the class helped her. But they all leaned on each other.
I don't mean to suggest that everybody lives with something, and that therefore the author of this book isn't exceptional. She is exceptional in many senses, not least in her ability to communicate life experience dynamically. I wouldn't have missed reading this for the world, even if I would, for choice, have changed its structure.