UrbanUpdate

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 that 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.

Meghan O’Rourke: There’s a Susan Sontag quote where she says we all hold dual citizenship “in the kingdom of the well and in the kingdom of the sick.” And so I ended up thinking there’s this whole other kingdom of the sick who were not recognized as sick, which is the invisible kingdom. And what does that kingdom look like? What is it like to live there? It seemed to me that the reality of it was very poorly understood, not only by medical science, but also by our culture and society at large.

Meaning that these sorts of kingdom conditions, let’s call them, aren’t exactly problems that have simple or quickly-found answers?

Modern conventional medicine seems to take a mechanistic approach in which the body is a lot like a car. If the carburetor has a problem, you go to the carburetor specialist; if the tire has a problem, you go to a tire specialist. But what happens if you’re sick in a way that’s systemic and vague and no specialist can tell you exactly what’s wrong?

That’s what happened to you, as you write in the book. You started getting sicker and sicker, with more varied and worsening symptoms. And, for a good while, doctors just couldn’t figure out why you felt the way you did. Why was that?

The kinds of illnesses I’m writing about are hard to measure, and we live in a medical system that likes measurement. For good reason! Measurement and evidence brought us our longer lives, our safer medical practice. I’m a thousand percent in support of it. The problem is: What happens if you’re a person who lives at the edge of medical knowledge, and the search for evidence turns up nothing? Does that mean there’s no disease there, or do we lack the tools to find the evidence of disease? What I found was that medicine was, curiously, uninterested in that second question.

Absence of evidence isn’t evidence of absence.

Right. In the vast area of people who have illnesses we just don’t understand, they tend to be dismissed as if they’re not real. As opposed to, maybe we just don’t know how to see them.

One of the best chapters in the book is the one where you talk about your Lyme disease. I know the whole idea of chronic Lyme is, well, sketchy, to some doctors. But what was it like for you when a doctor finally diagnosed you with a tick-borne illness?

By that point, I had been given so many partial diagnoses by specialists who saw my problems through their particular lens that I was also hesitant to embrace anything. So I was wary. I was really worried to get hope again. So I think part of what happened in his office was that I felt both, “Oh my God, this is it,” and, also immediately, “Don’t let yourself think that, because what if it’s not?” And sometimes I'd let myself believe something was the answer and it really wasn't. And I just wanted to try to stay objective and removed. So it took a long time for me to accept and embrace that tick-borne illness was the primary driver of my sickness. It wasn't the sole driver, there were other factors too, but it was the primary driver of my worst symptoms.

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Many times you acknowledge the privileged position some patients occupy. The ones who have the time and the ability to really advocate for their own care. And that’s so important, and something not many people have.

I asked one of the researchers I spoke to, "Look, I had a lot of means and support, and was able to kind of keep pursuing answers. What happens to people who don't have that?" And he said to me, "They fall through the cracks and they suffer alone." And that's really why I wrote the book. I was just thinking about whoever they are, the people who are suffering alone. This is a problem that goes beyond my story.

For people suffering from an invisible illness, what should they do? What should they think? How do they keep moving forward in their own quest for answers?

I wish someone had said to me, when I was in my 20s, to have the courage of my own convictions. You deserve a doctor who believes you, and is an active partner in your care. That doesn't necessarily mean they're going to agree with everything you say or want to do. But there should be a fundamental level of respect and recognition. You have to persevere until you get some answers because there are answers out there. And you also shouldn't feel bad if you can't strive for answers all the time. It gets exhausting. Sometimes, you just need to take a break.

This interview has been edited and condensed.

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