What It’s Like When You Know You’re Sick but Doctors Can’t Tell You Why

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Nothing was quite so unnerving for Meghan O’Rourke than never being able to fully explain why she didn’t feel well. Throughout her 20s, she was afflicted by a variety of symptoms: stabbing sensations up and down her arms and legs, brain fog and memory problems, night sweats, gastrointestinal issues. Around 2012, when O’Rourke was in her early 30s, she grew even sicker—but her doctors, unable to find anything distinct, attributed her physical health to stress and anxiety.

“There was this strange period of trying to articulate that I’m not myself, but I can’t tell you why or what it is that is wrong,” she says. “After about 15 years of going to doctors I started to have the conviction that something, in fact, was wrong, even though no one could recognize it.”

O’Rourke recounts the history, mystery, and unraveling of her unusual health in The Invisible Kingdom: Reimagining Chronic Illness, out this week. After decades of seeking, the poet, author, and Guggenheim Fellow finally has a grasp on the cause of her own persistent sickness.

First up is the Hypermobile Ehlers-Danlos Syndrome, a genetic condition she’s had since birth that is part of the reason she also has Postural Orthostatic Tachycardia Syndrome, a disorder of the autonomic nervous system. There’s the Hashimoto’s thyroiditis, an autoimmune disease. Finally: Lyme disease, the primary driver of her worst symptoms, which went untreated for a period of 20 years. (Even suggesting something like that, O’Rourke says, is a hot-button issue.)

The illnesses with which O’Rourke lives every day are chronic conditions that make the body’s immune system or nervous system (or both) go haywire. Her book is a fascinating personal account of her years spent traveling to different medical specialists to discover what ails her. It is also a clarion call—because there is a “silent epidemic,” she writes, “of chronic illnesses that are often marginalized, contested, or even unrecognized.” Illnesses hat are, in so many words, invisible not only to our family and friends, but also, at times, to the doctors we turn to for answers and care.

“The kinds of illnesses I’m writing about in my book are called invisible illnesses because they are hard to measure, and we live in a medical system that likes measurement,” says O’Rourke.

Measurement in medicine exists for a reason, a point she readily admits and emphasizes. But far too often the same medical establishment that excels in healing a broken bone or attacking cancer falls short of treating people who experience chronic, confusing pain. In the U.S. alone, there are possibly as many as 50 million people living with some type of hard-to-diagnose autoimmune disease—to say nothing of the countless people who contracted the pandemic coronavirus and are now dealing with long-haul Covid. O’Rourke’s book is a reminder that there are plenty of people like her who know they’re sick—and are still searching for the reason why.

GQ: Can you explain where the idea of the “invisible kingdom” comes from? A lot of us might know someone who deals with pain, but the stuff you’re talking about isn’t some situation where you pop ibuprofen to get through the day.

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