First off, the premise of this book is great. Two people, with two very different conditions, experience a lot of the same symptoms, and yet society treats them very differently. I LOVE this concept. I think it is something that should be examined in detail, which is why I was excited to read this book. I also fit within the proclaimed target market of the book "for anyone who's been sick or loved someone who was" - I am both of these.
Unfortunately, this book did not live up to my expectations, and I would argue that their target market is not what it says on the cover. There is very little depth, so many pat statements, very little critical though, some victim blaming, some uncomfortable sections around weight gain/eating disorders, and it basically reads like an extended Mamamia article, which maybe I should've expected, because at one point both authors wrote for Mamamia.
In terms of target audience, I would argue that this book is for absolute beginners in the chronic illness space, e.g. people who don't know about spoon theory or people who have yet to get sick of people asking them "have you tried yoga?" For seasoned chronic illness vets, you probably aren't going to walk away having learnt anything new, and you may feel a little condescended to/alienated.
Some pet peeves that were in this book:
- incorrect definition of endometriosis (c'mon it's 2025!)
- misuse of the 5 stages of grief (it was never meant to describe other people experiencing loss, only people coming to terms with their own deaths when diagnosed with a terminal illness)
- saying exercise has no negative side effects - hello, as a person with POTS/MCAS/HSD type symptoms, I can tell you that exercise can leave me with very negative effects for days if I am not careful. This sucks because I love exercise. Such a statement 100% should not be in a book directed at people with chronic illness.
- the extreme amount of privilege (although, the authors were very open in acknowledging their privilege, I would like someone with less privilege to be given more of a voice)
Some positives:
- I enjoyed learning about craniopharyngioma and how some of the symptoms can be so similar to mental illness. I wish there had been more memoir from Jamila, although I understand if that might be difficult due to her memory loss that arose from the craniopharyngioma
- I enjoyed Rosie's sections as they were more memoir and less pop health/science, and I enjoyed learning about her life
- It was quite validating to hear how sometimes others' experiences of doctors has been quite similar to mine.