The Invisible Kingdom

In the way of women who have internalized disordered ideas about food and control, I associated my strange bouts of fatigue and discomfort with eating poorly (even though I ate a reasonably healthy diet). It was easy, in those years, to feel that a lack of dietary discipline played a role in my exhaustion, because I could tell, vaguely, that certain foods made me feel worse, leading me to assume responsibility for my own unwellness. I toggled between the conviction that something had to be wrong-I didn't feel OK-and the conviction that I was to blame, and if I just stopped eating sugar, or pizza, say, I'd be fine.

 

One night, I woke up suddenly from a nightmare that a man in a dirty gray sweatshirt was stabbing me. My period had started, but in addition to the cramps I had a sharp pain in my lower right abdomen. The pain grew in magnitude until, heat flushing my body, I suddenly vomited. I thought perhaps I had appendicitis, but the pain went away an hour later, just as I was preparing to go to the ER. "Everyone feels cramps," my gynecologist told me when I asked about it.

 

At the advice of a friend, I went to see her gynecologist. This doctor listened and nodded when I mentioned the stabbing pain; I felt relief at the recognition. She did an exam and ultrasound. "I think you might have endometriosis, an immune-modulated disease where tissue from the uterus gets out and coats the abdomen and other organs, causing pain," she said. "But it doesn't really matter unless you want to get pregnant: it can cause infertility. Later we might want to address it with surgery. For now, I'd just take ibuprofen during your period." She gave me some tissues and I wiped myself, dressed, and left, puzzled by the way my pain had been relegated to a sign that my fertility might be compromised, not a problem in its own right.

 

When I was twenty-four, I started waking up with a feeling that a foggy miasma filled my brain. I would go for long runs before work to clear my head, lacing up my shoes, sweating off the sleep hangover. I thought everyone felt this way, that I was just fighting off a cold. But why was I so often on the verge of a cold-more than anyone else I knew? Periodically, I would start digging a little. In 2005, around the time of my twenty-ninth birthday, I was strangely enervated. I remember googling my symptoms and being struck by how much they matched those of several autoimmune diseases. I showed the results page to Jim; as the screen c

Library Journal, STARRED review

A call to arms in the fight for compassionate healthcare The Invisible Kingdom is a medical detective story with the drama and style of The Immortal Life of Henrietta Lacks. O Rourke s book has ignited a necessary conversation, proving the pen to be as mighty as the stethoscope. Oprah Daily

Meghan O Rourke s book is a searing and thoroughly researched exploration of the pain and confusion that many [chronic illness sufferers] go through in their quest to have their health issues taken seriously by the medical establishment and, often, the world at large. Vogue

An affecting portrayal of how we view disease, experience illness, and search for healing. -Booklist, STARRED REVIEW

With a poet s sensibility, journalist s rigor, and patient s personal investment, O Rourke sheds light on the physical and mental toll of having a mysterious chronic illness Readers will be left in awe. -Publishers Weekly, STARRED REVIEW

The Invisible Kingdom is a vivid account of the lived experience of chronic illness. Meghan O Rourke exposes a system of thought in which people with poorly understood illnesses are dismissed and disbelieved, blamed for their own suffering, and left to take desperate risks in pursuit of treatment. Crucially, her perspective offers insight into how we can do better. Eula Biss, author of Having and Being Had

O Rourke s honest and insightful account of chronic pain is at once a page-turner and an education in cutting-edge science and the history of ideas. I couldn t put it down. Gretchen Rubin, #1 New York Times bestselling author of The Happiness Project

In this urgent and beautifully written book, Meghan O'Rourke lays siege to one of the last taboos in medicine: the chronic illnesses that govern the daily lives of millions of people, but are rarely acknowledged. As we confront the long-term impacts of COVID-19, O Rourke s lyrical analysis couldn't come at a better time. Michael Specter, New Yorker staff writer and author of Denialism: How Irrational Thinking Harms the Planet and Threatens Our Lives

With impressive clarity and depth, O Rourke explores the failure of current biological science to identify the causes of numerous maladies or offer effective treatment, leaving a sufferer adrift. Bracing in its intelligence and remarkable in its sweep of both literary and medical scope, this book is essential reading for patients and medical professionals alike. Jerome Groopman MD, author of How Doctors Think

Emotionally compelling and intellectually rich."  Kirkus

O Rourke is a poet above all else, and it s with incredible, lyrical empathy that she not only shares her own story of and eventual diagnosis with late-stage Lyme disease, but puts it in perspective of an entire generation of patients who ve been dismissed . . . A must read. Lithub