The Invisible Kingdom: Reimagining Chronic Illness by Meghan O'Rourke
Published by Riverhead Books
Publication date: March 1, 2022
Genres: Book Clubs, Non-fiction, Health, Memoir
Bookshop, Amazon
I don’t often discuss personal issues in this blog, but for those of you who have been around long enough, you know I have multiple sclerosis. Recently, I read a book that resonated so deeply with me I knew it could have the same impact on other readers. The Invisible Kingdom: Reimagining Chronic Illness by Meghan O’Rourke is a memoir of sorts about the slippery, nasty nature of the kinds of diseases more and more Americans are experiencing. Auto-immune diseases such Type 1 diabetes, lupus, rheumatoid arthritis, IBD, among others; invisible diseases that cause intense pain and discomfort, but without the visible effects found in traditional illness.
The Invisible Kingdom is about the decades it takes O’Rourke to get a diagnosis for her illness and what she goes through. It’s hard to express how the opening chapters made me feel, but it’s like finally being seen and understood, even though O’Rourke doesn’t have MS. If you’re living with a chronic disease there’s tremendous comfort in that because even the most compassionate people can’t understand what they can’t see and the toll it takes. More importantly, doctors don’t like problems that can’t be labeled and solved. To be fair, neither do patients. We want an answer, a pill, whatever will make this stop. All of which is exacerbated by a healthcare system that only allows doctors 15 minutes with a patient and encourages speedy, traditional solutions.
O’Rourke is a writer so she’s able to convey a lot of research and jargon in an easy-to-read way. She explores chronic illness on a macro and micro level and her writing is beautiful. The book is split into 3 parts: Obstacles, Mysteries, and Healing and covers so many important elements of living with chronic illness. There’s her journey, the research into auto-immune diseases, the medical community and how women are treated (according to most fatigue is almost always a sign of depression or anxiety), what it’s like for caregivers and loved ones, and finally, what she’s learned for her own life.
Reading The Invisible Kingdom was a journey, one where I initially found myself falling into the traps of a sceptic. Why couldn’t O’Rourke feel better? Did she have buried emotional issues? She was in her late 20s and 30s, how could she be so debilitated without answers? Her blood work, gallons and gallons of it again and again, shows no major signs of anything that would cause such problems. What I learned is that for as much as the medical and scientific community knows, there are still undiscovered universes hidden in the human genome. The easiest example: two people, same race, age, social and economic status get COVID in 2020. One has a bad cold, the other ends up on a ventilator and dies. Why? Because we don’t understand the impact of viruses on the individual genetic structure.
All of which means there’s a lot of work to be done. As O’Rourke points out:
In chronic illness, the patient does not have a problem that can be solved quickly but a disease to be managed, physically and psychologically. Such illnesses can be intractable, messy, mysterious. And doctors don’t like to manage; they like to fix.
This leads me to the only caveat I have for anyone who wants to read The Invisible Kingdom: it’s not a book of answers. The key takeaway is there are NO answers. They don’t know what causes multiple sclerosis; my symptoms may or may not match up with another’s. Additionally, auto-immune diseases travel in packs and once one settles in, it’s very likely others will follow and their symptoms can mimic or compound other issues. They’re sneaky bastards. At best, O’Rourke posits that the old healthcare model needs to be thrown out and a new one created. One based on uncomfortable, unsettling concepts such as uncertainty. The entire medical and scientific community needs to accept that just because they don’t have all the answers doesn’t mean they can’t help. For anyone whose life is impacted by an auto-immune disease The Invisible Kingdom is reading I highly recommend.
This post contains affiliate links which means if you click on a link and make a purchase, I get a small commission (at no cost to you).
This has been on my TBR since it came out but I think I need to move it up. In my own quest to unravel intractable health issues, I have found this so true: “The entire medical and scientific community needs to accept that just because they don’t have all the answers doesn’t mean they can’t help.” Needing to have the answers or pretend to know everything actually gets in the way of helping! This is really a crisis of our time.
I wish you courage and strength for your own health challenges and patience with the unsolved mysteries. One thing that I know definitely does help is human community and solidarity. Thank you for your sharing here!
Thank you! In the book O’Rourke quotes a doctor who says they are explicitly told in med school to never use the words “I don’t know”.
You’re right about community. Please feel to email me if you just need to vent. I will understand.
Of course it’s understandable that doctors want to project confidence, because that might help the patients in some cases. But they seem to be in danger of losing their integrity in the process, by insisting on always being right when clearly they aren’t. I know there are some who swim against this current, but it’s still discouraged on the whole, sadly.
Thanks so much for the offer, I would say the same!
Agreed. There needs to be a sense of ‘authority’ in the beginning because we’re all looking for reassurance. With auto-immune diseases and the doctor mill most patients run through, it needs to segue to something more helpful.
I am newer to your blog so did not know you have MS. I am so sorry to hear that! I hope that your disease is well managed, although as this book addresses, that is a tricky thing to sustain. I haven’t read this but I will thanks to your review. I was dx’d with RA in 2013. I was in so much pain at that time, I worried I might have bone cancer or something. It hurt to get out of bed, walk up stairs, I couldn’t put my suitcase in an overhead bin, etc. Luckily I have an amazing physician but I had a terrible one before her who questioned if I even had RA. He had all of my medical records so there was no reason for him to question my diagnosis. That was the last straw with him and luckily I found my amazing doctor.
Autoimmune diseases are so frustrating though. Mine was pretty well managed outside of my pregnancies when it was AWFUL but then I had an awful flare in December and my blood work showed my disease is not well managed. So I had to add another drug. It’s not the biggest deal but as a black and white thinker, I want an explanation for why my disease isn’t managed on the drug regimen that worked for year. But these diseases aren’t logical/figure-outable.
I’m so sorry to hear this, Lisa. RA is another nasty bastard. I hope you’re able to get some relief.
The book will provide some solace, but the bottom line is there are no answers. No fixes. Which makes accepting the illness a daily process. Which is exhausting. And around it goes.
I also loved (hate-loved) THE LADY’S HANDBOOK FOR HER MYSTERIOUS ILLNESS. It made me so thankful I’m only going through the shit I’m going through.
I don’t know that one. Is it worth reading? Or is it a hate read?
Very much worth reading! Unless by hate reading you mean you can’t take any more of our f’d up health ‘care’ system.