This book is a MESS.
I picked it up because I have a lot of friends who are in the depths of a mysterious illness -- friends who are in pain, who are fatigued, who are multiply allergic, who have chronic digestive problems, who are struggling to get through each and every day. I assumed it would be a handbook FOR THE AUTHOR'S mysterious illness, and that it might provide some insight into ways I could support my friends.
For the first 40% or so of the book, that's pretty much what it is. Sarah Ramey defines her terms and talks about medical research she did and people she talked to, but mostly she describes her own illness, her own descent from "normal college student" to "unable to get out of bed and in constant agony ME/CFS person." And while her narrative voice is, let's say, extremely distinctive, it was a compelling story and I read it quickly.
But then the book takes a left turn into Senior Thesis Land. Seriously. There's a huge chunk in the middle of the book -- about 20% of it overall -- in which Ramey talks about how she found meaning in her illness through, uh. Mythology. And I do get that that is important to do! Meaning is what keeps us going, and if being sick is your 24/7 state of being, you want to find meaning in that. And honestly, I don't care how you find meaning for your life or the adverse events of it, as long as you're not hurting others. But Ramey decides that her meaning is really for all of us. (All women, anyway.) I did not enjoy that. And I just generally did not enjoy having a gigantic, mediocre senior thesis on mythology and the Hero's Journey plopped down in the middle of a memoir. I deeply wanted to edit it, a lot. Like, that material could all have been covered in about two pages.
Once that was over, I hoped the book might get back to the narrative, the story, the memoir. And it does, briefly, for a few more jaw-clenchingly awful stories of medical malpractice. And then Ramey describes herself as hitting rock bottom and changing the way she did things -- and she skips all of the recovery. She just says, hey, I'm not cured, but my life is much better! Now let's talk about what YOU should do. In other words, she wrote what she herself would describe as a descent into hell memoir, chronicling each agonizing step down -- and then skipped the part where she climbs out in favor of issuing a prescription for all of her readers and for society itself. This is not a particularly balanced or compelling way to present a story.
But I was willing to give it a chance. Society does need to change! A lot of people are either sick or know someone who is! Maybe that prescription is good?
Before I answer that question, I need to talk about who Sarah Ramey is, because it's really, really important once she stops talking about herself and starts talking about every sick woman alive.
Ramey is a person of tremendous privilege. She is rich, straight, white, thin, attractive. Three of her four parents are doctors. She was educated at excellent, expensive private schools. She got sick right before her adult life started, and as a result has managed, as far as I can tell from her story, to work three jobs: communications person in Barack Obama's first presidential campaign (if you're wondering how someone with no experience got that job -- well, see above about privilege), indie musician, and author of this book. Otherwise, she spent close to two decades with being sick as her full-time job, including several years unable to move, with her doctor mother as her full-time, round-the-clock caregiver. (And I am not judging. Being that sick and surviving it IS a full-time job.) In that time, Ramey was able to move across country multiple times, visit any doctor or clinic she chose, pursue every whisper of a cure no matter how dubious or expensive, and have a nearly endless number of tests and treatments. I am not saying that needing those things was a privilege. But being able to *have* them, that very much was. She also, during this entire time, including the time when she was bedbound, was always: sheltered, well-fed, safe, and kept as comfortable as possible, with appropriate, dedicated, kind caregivers as needed.
What I am saying here is that Ramey is a unicorn who doesn't know she's a unicorn. A unicorn with golden shoes, at that.
So back to her prescription, which she emphasizes is absolutely mandatory for every sick woman who wants to improve. It is: Change your diet. (She doesn't get into specific details, but the changes she says are necessary require not just money, but the ability to shop and cook extensively; there can be no takeout, no packaged foods, none of that.) Eliminate stressors, both physical and mental, in your life -- fix your house, clean your house, change or quit your job, meditate, exercise, etc. (Obviously, these things all take time and money.) Build a caring circle of friends, a community, a Team You. (Actually possible. For some people.) Get a team of doctors and therapists who will believe you and work on your case, no matter how long it takes or how much you have to keep trying. (These doctors will not be covered by anyone's insurance, assuming people even have insurance.) Take medications and supplements that help you. (These also will not be covered by insurance.) Become an ecologist, of your body, your home, and your world. Oh, and while you're at it, fix the world.
I wasn't kidding when I said I had a lot of friends with mystery illnesses. I thought about them while I was reading this section. Not one of them has the ability to do these things. Some of them are pretty well off and privileged, some are not, but in every case, there are insurmountable obstacles to doing at least some of what Ramey has outlined as necessary. (Also, since they are all pretty well expert in their own cases, they're already doing the parts of this that they can, as these are pretty obvious solutions to anyone who has spent some time mysteriously sick.)
Ramey has written a prescription for everyone that only she can follow. What her book is actually going to communicate to most people is: you are not privileged enough to get better.
And to a certain extent, she acknowledges that. Like, she does say that if you are on SNAP, there's no way to eat a diet that will help you heal. And -- there you go, that's just how it is. Sorry, poor person! Maybe eventually all those women who are working on fixing the world alongside their soul-sucking, exhausting, life-draining mysterious illnesses will fix that problem, and in the meantime, welp! You stay sick. But she also seems to think that's an edge case, even though poverty is, well, pretty closely linked to these kinds of chronic illnesses.
She also says that, basically, you'll find the resources when you need them. Her reason for believing this: if you had diabetes and you needed to clean your vents (for your air conditioning and heating, which some people of course do not have) to address that, you'd find the money. Apparently Ramey has missed the fact that in the US, people regularly die of diabetes because they cannot find the money to buy the thing that definitely does treat their illness, insulin. And that's the problem. In Ramey's world, money is a thing that happens when you need it to. That is not true for very, very many people.
She does acknowledge that she was in the best possible position a woman with a mysterious illness can be in, even if she doesn't quite understand the depths of that truth. But she leaves it at that. What is she doing personally to fix the lives of every other sick woman? Writing this book. That's it. She made the roadmap! Now it's on YOU if you are too brown, too queer, too fat, too busy, too otherwise disabled, too poor, too (ha) sick. She is going to get on with leading her much-improved life -- which, good for her, I'm happy for her -- and feel good about helping, even though 99.9% of the people she's writing for can't be helped by this.
And that's what I genuinely hold against her. She makes other errors, too, and they're terrible -- saying that there are no mysteriously ill women in poorer countries, for example. (We also will not speak about the ableism that pervades every word of this book, except to say that it is there. I see you, Sarah Ramey.) But the part that kills me is that she wrote a whole third of a book intended to help seriously ill women who are being mistreated and ignored by the medical world, and then she did to her readers exactly what doctors have done to them: she abandoned them. She said, "There's treatment, there's hope, but it's not for you." (Also, she forced them to read a senior thesis first, which is definitely insult to injury.)
There are people who should read this book. Doctors, if they want to know more about the lives of some of their most challenging patients, and especially the kinds of experiences these people are likely to have had. Women who are rich, white, straight, thin, attractive, well-educated, and mysteriously ill, because this genuinely might help them.
But I won't and cannot recommend this to a single one of my sick friends. They've been through enough.
(Addendum: I admit my eyes glazed over a lot during the senior thesis mythology portion. I just discovered I missed the part where Ramey says being a person of color or being trans is the same thing as being female. Noticed that when I went back to check something for a friend. So, uh. Further warning!)