Invisible Kingdom: Reimagining Chronic Illness by Meghan O'Rourke

Lisa gave me a lukewarm recommendation on this book and I can see why she was hesitant about it, but I still want to let her know I appreciate the rec. 

Invisible Kingdom: Reimagining Chronic Illness by Meghan O'Rourke is O'Rourke's examination of the rise of chronic illnesses, particularly autoimmune diseases. 

The Good: There have been an increasing number of people diagnosed with autoimmune disorders in the recent past. Most of those diagnoses have been for women and as we know from a million other books, women's health has been widely understudied and women's pain has been widely ignored. I thought this book did a decent job of exploring that dynamic. I thought the book did a pretty good job of talking about the complexity of discovering autoimmune diseases in the first place and how very challenging it is for someone to even get a diagnosis and not be brushed off. 

The Bad: O'Rourke's tone in this book is like one of those porch signs that says GO AWAY.  If her audience is just people who have an autoimmune disease, maybe this book is just fine. But presumably there are people reading the book who don't have an autoimmune disease (like me!) who just want to understand more because they know someone who does, they are a caretaker, or they just want to know what's going on. But she slides a lot of "if you don't have a chronic illness, you can never understand" instead of you know, doing her job, and writing to make sure we do understand it. 

It IS a hard thing to talk about because autoimmune diseases range the gamut from Type I diabetes to rheumatoid arthritis to IBD to celiac to Hashimoto's to dozens of others. Each of these will have different symptoms for each person suffering from it. But I feel like this book could have benefited from a chapter or two about the most common. As the book is now, if I didn't already have a firm grounding on a couple of these diseases, I might be a bit confused and lost. 

The Ugly: There are legitimate criticisms of western medicine, particularly of the sort in the United States. But when O'Rourke started giving credence to the power of positive thinking "scholars" (as in "you can will cancer away if you surround yourself by only positive thoughts/people and don't get treatment"), I wanted to throw this book against the wall.

I think the information in this book is important, but I think it could have been done better in the hands of someone with a little more distance from their own experience. 

Lines of note:

I spent at least half of each day shopping for food, cooking, and cleaning up. (page 29)

Add in thinking about what to make and you've pretty much got my life. 

Worrying that your symptoms are psychosomatic - or even imagined - is part of life for many people with poorly understood illnesses. (page 47)

My husband recently had an appointment with a new GI doctor and he worked himself up into knots about it. What if the new doctor doesn't believe me? Are my new symptoms all in my head? It was heartbreaking to see and heartbreaking to hear him beat himself up after the appointment with how it had gone. 

The recommendations that my husband seek a therapist are so pervasive. Is he part of the "worried well"? Or is there something really wrong and he's being ignored?  

...in my fatigue and pain I couldn't find the words to make myself legible to others. (And I still have not found them. This text is full of silences and vagueness and lacunae: when I write "brain fog," I imagine that your mind slides over the idea, unless you, too, have suffered from it.) (page 53)

This is an example of O'Rourke just throwing up her hands and saying you'll never understand. Isn't the purpose of writing the book to help us understand?

The central issue is that physicians tend not to see women's self-reports of illness symptoms as valid. When a female patient complains of pain or discomfort, her testimony is viewed as a gendered expression of a subjective emotional issue rather than a reflection of a "hard" objective physiological reality. Even when it comes to a disease as grave as cancer, a woman's testimony about what she is experiencing is seen as an exaggeration. (page 107)

Ugh. 

"genetics are the gun, a virus pulls the trigger" (page 123)

This is super interesting, I think. My husband and all four of his siblings have an autoimmune disorder (to be honest, this one of the major reasons we never considered having children - it seemed like a cruel thing to do to bring a child into the world with the genetic odds stacked against them). They tend to cluster in families. But they don't all have the same diagnoses, which is interesting. Their genetics may be similar, but their environments differed radically (even in childhood), so there must be some other "trigger" and the research does indicate it's usually a virus that unlocks the chronic illness.  

Things I looked up:

Semmelweis reflex (page 41) - the instinctive tendency to reject new ideas because it contradicts established beliefs; a form of confirmation bias