From Goodreads: Sarah Ramey recounts the decade-long saga of how a seemingly minor illness in her senior year of college turned into a prolonged and elusive condition that destroyed her health but that doctors couldn’t diagnose or treat. Worse, as they failed to cure her, they hinted that her devastating symptoms were psychological.
The Lady’s Handbook for Her Mysterious Illness is a memoir with a mission, to help the millions of (mostly) women who suffer from unnamed or misunderstood conditions.
Ramey’s pursuit of a diagnosis and cure for her own mysterious illness is a medical mystery that she says reveals a new understanding of today’s chronic illnesses as ecological in nature, driven by modern changes to the basic foundations of health, from the quality of our sleep, diet, and social connection to the state of our microbiomes.
This book was recommended to me by one of my GGS coaches, who hadn’t read it, but had heard from another client that it was spot-on. And it was. Ramey really hits home in so many ways. I was warned in advance that the book could get a bit wordy – it probably didn’t need to be 400+ pages, tbh – but I personally didn’t mind that. It felt a lot like a conversation, and I enjoyed Ramey’s speaking style. And other than one section – a very long drawn out discussion** of the literary hero and heroine journeys, followed by an in-depth conversation of gender construction in our country – the rest of the book was 100% relevant to me and my own Mysterious Illness (not to mention past Mysterious Illnesses).
There’s a discussion of vague symptoms that all add up to a greater whole, and the doctors who tend to look at individual symptoms only. There’s a collation of data on the rise of autoimmune disorders over the last 30-40 years, especially among women. The usual doctors-treating-women-as-hysterical-and/or-hypochondriacs is also addressed. I often felt like I was reading my own words and experiences, all the crap that I’ve gone through with doctors since my first Mysterious symptoms in 1998. And while I am not as sick as Ramey has been, not as low on the continuum of Illness, I still sit squarely in the middle of the “wtf is going on with this body” situation that is encompassed in this book. As I read, I felt like I was having a discussion, finally, with someone who understands.
Once upon a time, a friend of mine began to call me “the body detective” because I’m constantly investigating and analyzing my situation to find the root of the problems I have. While I’m flattered by the title, it’s frustrating at the same time, because I shouldn’t have to be my own body detective. I shouldn’t have had to diagnose my own teeth infections on the 11-year-long illness that claimed the first decade of my adulthood. I shouldn’t currently be struggling to figure out why and how the 25+ symptoms I currently have fit together. Because yes, I believe in root causes. I believe that there is something at the bottom of these complex networks of symptoms. There may be more than one cause, and the symptoms might be compounded by Many Other Things (all of which are discussed at length in this book), but I believe we CAN find answers, if not total healing – because let’s be real. When you live with a Mysterious Illness for decades, the damage is done regardless of whether or not you remove/fix the original source. And that can be a really tough thing to accept.
Other than the one section** that I already mentioned, I loved this book. I took screenshots of many, many quotes from it. I felt validated and heard in so many ways. (Reaction at one point: “Wait, did she literally just mention dental bacteria as a potential cause of chronic infection??? NOBODY BELIEVES ME ON THIS ONE!”) I loved that Ramey emphasized human connections and the need to feel a purpose in one’s life as part of health and wellness. I loved that she acknowledged that no one solution fits everyone, and that these issues are complex and multifaceted, and that sometimes we can only do as much as we can do. (Heh. At one point, the book says, “Doesn’t matter if she takes melatonin, or uses a weighted blanket, or powers down her electronics by 9:00…what matters is that she…does not give up on finding a way to make [sleep] work.” Check. Check. Check. Yet I still don’t sleep. Yup.)
Because of this book, I’ve done some additional research into my personal nutritional situation, my frustrating doctor situation (link to one of MANY posts on the situation), and my medical-status-over-time situation (again just one of many posts on the subject). I’ll continue to be a Body Detective until I can find a medical professional (traditional, functional, whatever) who can help me, or until I find/fix the root causes of my Mysterious Illness. And books like this help – for the resources, for the data, for the knowledge, for the acknowledgement, for the validation, for the understanding, for the being-heard. It’s not a Fix or an Answer, but sometimes what we need isn’t a Solution, but an Exploration. That’s what this book does, and encourages each of us do in turn.
**This section very well may be interesting or relevant to other readers. I have personally never been one for archetypes or trope-journeys, whether hero or heroine, and I don’t find meaning or purpose in these sorts of things. But this is a very individual stance. I know many folks do find meaning and validation in relating to a larger story like this. So I’m not knocking this part of the book. Just saying that for me, it was unimportant and I basically skim-read it as not relevant to my personal journey.