I sat down to read this book at 4am, and at 5:49 I have just finished it. I was afraid it was going to be either an overly saccharine chipper self help book rife with the "buck up little campers, we can overcome our various plights" attitude, or another "woe is me, the medical industry has failed me as badly as genetics have" (the only book I've ever read from a patient's perspective who suffered from Mastocytosis was very bitter in some ways. I have no doubt it was cathartic for the author, and in turn cathartic for many of the readers, but something about it sat wrong with me. I think I was looking for answers in it that weren't there. Another concern I had about this book (especially since the author is around my age and went to my college is that I'd think, "hell I could've written this if I'd felt so self indulgent", since so many memoirs lately read like they were written by 6th graders)
But instead I found a well written, well researched book with a myriad of strong (predominantly female, which for me was comforting, however I would've liked to see a bit more gender diversity both for male readers as well as to dispell the whole frail woman thing) voices covering the basics of life with a chronic and incurable illness.
However, what made this book different, tolerable, hell actually enjoyable was the strength in it. No blithe optimism that we're all gonna get cured next year or anything like that. Just a lot of strength, honesty, candor, situations I could relate to, and resources for myself and my husband.
The author and her comrades discuss their various illnesses with a calm acceptance and honesty I found really refreshing. These people seemed to accept and understand what chronic illness meant in terms of shaping their young lives in both the long and short term, and while they were not ok with it, they also didn't appear bitter. They seemed intent on living. It just aligned very strongly with things I've felt and the outlook I have.
I truly think that anyone with a chronic illness should read this book, and in turn I think their spouses should too (or at least the last few chapters that deal predominantly with relationship-centric stuff)
Here it is on Amazon