Moon Face Reviews: Books on illness
I have a solution for any problem, it’s called research. If in doubt read a book, you’ll know what to do then. Last year when I started suffering from a debilitating autoimmune condition I started reading, and this is why Moon Face exists, because I couldn’t find the book I needed. I needed something that offered practical advice on how to exist with chronic illness but also the lived experience of someone going through something similar to me that didn’t fit into the heroic (I cured myself, you can too) or tragic (I am suffering and no-one understands me) themes. This is what I needed, but what I actually wanted to read at that time were exactly those types of victory/tragedy narratives, because they are the most compelling and when you’re sick you need hope or you need comfort. But promises of cures are dangerous and stories of repeated medical incompetence can make you despair. For this first Moon Face Reviews I’ve reviewed six of the books I read at that time.
5. Cured by Jeff Rediger
This book by doctor Jeff Rediger tells the stories of people who have found spontaneous remission from illnesses ranging from Lupus to Cancer. Rediger’s writing is nuanced and well-researched, the book feels fuelled by his curiosity but at some points, he strays into a realm where scientific curiosity and wishful thinking get tangled. This is one of the first books I read when I became ill and I feel it initiated an unhelpful belief in me that I just needed to find the right solution, that the right diet, breathing exercise, therapist or meditation practice would cure me, you can read more about this in my Moon Face essay Imagine Sisyphus Happy. What I know now is that I was still at the beginning of my journey and if you suffer from fatigue the last thing you need is to devote precious energy to shopping for bizarre ingredients or waking up early before work to do your meditation, breath work and yoga exercises. You need rest. Wait until you know your illness before you try to fix it. What I do think is interesting is the breadth of cures Rediger documents people as having credited for their remission, from vegan to keto diets, yoga to just accepting yourself, he highlights that for these people a radical change was the key thing that cured them though the change itself varied for every individual. Something that I feel needs to be noted is that the common thread for many of these cured people is the privilege they had to be able to focus completely on curing themselves, something that just isn’t a possibility for most people suffering from a chronic illness.
Who should read this: Anybody who’s lost hope.
Who shouldn’t read this: The newly ill, it will only make you feel worse when you, like the 99.9 percent of people who don’t have spontaneous remissions, stay ill.
Key takeaway: When people say x helped them with their disease, that does not mean it will help you, if a vegan and a keto diet both induce remission then the key is believing in the change, essentially the key is the power of belief, the power of placebo. When I found things that helped me, acupuncture and cutting out gluten, I was careful to always say to people I recommended this to that it was probably a placebo and only worked for me, you need to find your own placebo.
4. The Invisible Kingdom by Meghan O’Rourke
This book represents a lot of what I take issue with in the “spoonie” movement. I think I find this book so difficult because it reminds me a lot of how I was when I first suffered from autoimmune illness at university: obsessed with myself, outraged that doctors couldn’t find a diagnosis, unable to see that people around me were also suffering. This book charts the author’s two decades with chronic illness; from Ehlers-Danlos Syndrome, Endometriosis, Chronic Lyme Disease and POTS, the book is really the story of a sensitive person with the privilege of making her health the focus of her complete attention, who despite being given diagnosis after diagnosis is still convinced that there is something more wrong with her. That is my rather unfair take. The reality is that almost half the population in the UK, and more than half of the population in the US, have some form of chronic illness, and with limited resources, doctors are not always able to give the same attention to conditions that affect your quality of life, chronic pain, discomfort, brain fog, fatigue, with conditions that may risk your life, and at the heart of O’Rourke’s book and with the Spoonie movement is the difficulty in understanding this. In my essay, On A Mania For Diagnosis, I suggested that having some form of illness can make you anxious and that anxiety can start a cycle where you become more and more focused on your own health and consequently feel more and more unwell. O’Rourke’s book is very engaging and beautifully written in parts and her discontent with the US medical system is fair, what is more, I applaud in particular her spectacular journalism in documenting bias in the treatment of women and transgender people within medicine. It was just the part where she compared her fatigue from POTS/Chronic Lyme to that of her mother on chemo (and found her own more concerning) that I found a little difficult to stomach.
Who I would recommend this to: Anyone who loves someone with a chronic illness, it would give them an insight into how being ill can make you a little mad.
Who I wouldn’t recommend this to: Anyone struggling to find a diagnosis, it will just fuel the worst parts of yourself.
Key takeaway: We should live in a world where there are enough resources for people with chronic health conditions that affect quality of life and health conditions that risk life to be both treated seriously.
3. This is Not a Pity Memoir by Abi Morgan
I am so grateful to the friend who recommended this book to me. It’s different from the others in this list as it’s focused on the author's partner’s near-fatal reaction to a trial Multiple Sclerosis drug and the aftermath of this reaction. What I liked about this book is that it made me think deeply about what it’s like to be the partner of someone experiencing health issues, how it can dominate a relationship, and how relationships change and can grow around illness. This book was hard to put down and the arc of her story is almost hard to believe. The parts I found hardest are where Morgan is herself suffering from cancer but the matter of her days is still focused on caring for her ill partner. This book is about love, but it’s also about how illnesses need emotional intelligence and labour to be overcome or endured, and how, whoever the ill one is, it is often women who feel the burden of this care.
Who I would recommend this to: Nearly everyone.
Who wouldn’t I recommend this book to: Anybody feeling a little fragile, even though the author is remarkable in how she endures tragedy after tragedy, for those who need rose-tinted glasses to get through the day this book is not for you.
Key takeaways: Managing chronic illness doesn’t always have a happy ending, life is extremely unfair, and good people don’t always have good things happen to them.
2. Unwell Women by Elinor Cleghorn
Written by feminist historian Elinor Cleghorn this book is a thorough investigation of how women’s health problems have been dismissed and misunderstood from Ancient Greece to the present day. Though I think it’s absolutely necessary that this book exists it’s hard going in some parts and wasn’t a book I feel I needed to read when I first became ill. I resonated with Cleghorn’s story of becoming unwell in her early twenties and then seriously unwell in her thirties, and how her symptoms were repeatedly dismissed until they became life-threatening. Cleghorn, like O’Rourke, expresses how emotion and anxiety have been used to explain away women’s health issues since the founding of western medicine, but unlike O’Rourke’s book, it feels like Cleghorn is truly advocating for women not only in a way that gives credence to her own story, she uses her skill as a historian to plot how her illness and delayed diagnosis are just one more example of how the lived experiences of women in pain are often disputed and overwritten by medical professionals.
Who would I recommend this book to: This book should be standard reading for all medical professionals.
Who wouldn’t I recommend this book to: To be honest it’s pretty depressing, do not read it if your health is unstable or in decline and you don’t want to lose all faith in the medical system.
Key takeaway: Even though it can feel exhausting, women have to advocate for themselves, as Cleghorn writes, she only received the care she did because of all the women that have gone before her who refused not to be listened to.
1. When the Body Says No and The Myth of Normal by Dr Gabor Maté
I first encountered Dr Maté's work when I read his book In The Realm Of Hungry Ghosts. As someone who has a heroin-addicted father, this book helped me understand my father and his addiction in a way that I hadn’t been able to before. What separates Maté’s work from others in the medical field is that he takes a holistic view of health and tracks the path of illness from genetic predisposition, childhood trauma and living in a modern capitalist society and describes how these can act like the seed, soil and fertiliser to allow illness to flourish. While When The Body Says No focuses specifically on physical illness, his most recent book The Myth of Normal looks at the various disorders affecting modern society, from addiction to ADHD, eating disorders to autoimmune conditions, and ties together many of the ideas put forward in his previous works. Maté makes the argument that a lack of care in our childhoods, whether it be a lack of attunement with our parents or tangible abuse, can shape the way we react to the world, and that these reactions are often dysfunctional and are aggravated by the modern environment and the character of western society. Maté’s books allowed me to understand my condition within the narrative of my own biography. However, just as books that look at cures can be dangerous so can those that deal with causes. Maté in his work puts an increasing emphasis on childhood trauma as the key factor in illness and I have two main issues with this, one, it doesn’t offer anything for anyone suffering from illnesses that are undoubtedly caused by something other than this (genetic illness or physical trauma), second, what I feel I have learnt from living with a chronic illness is that it is often caused by a perfect storm of multiple factors, and it's perhaps too neat to point to this one thing as the prime mover in all illness. Health is a complex web and though I feel like Maté has defined one key thread in this it is only a part, not the whole, and treating this part may help but that does not mean all chronic illnesses can be cured by confronting our pasts
Who would I recommend this book to: People who think kale cures all ills.
Who wouldn’t I recommend this book to: The newly ill or diagnosed, like Cured it’s all too easy to think if you can just heal your trauma you can cure yourself.
Key takeaway: Childhood trauma and stress irrefutably affect how our bodies function.