Medical Examiner

Why Ross Douthat’s Chronic Lyme Memoir Matters

It joins a shelf of books by people who have had trouble being believed.

A silhouette of a man and a large tick on top of it.
Photo illustration by Slate. Images via msan10/iStock/Getty Images Plus, Ladislav Kubeš/iStock/Getty Images Plus and tampatra/iStock/Getty Images Plus.

Ross Douthat’s memoir starts with a confession: “I have always wanted to move back to New England.” The New York Times opinion columnist was living in a row house in D.C. with his wife and two kids when they decided to buy a million-dollar house in Connecticut—a beautiful old place with stone walls, lawns, and a guesthouse, one well-suited to be the stage for this particular privileged fantasy of retreat. The tale that follows is a little bit about how Douthat transformed his life—but not, as he expected, by escaping the rush of the city to get in touch with the land and tend to his flock of offspring (by the end of the book, he does have four of them). No, before the ink was fully dry on the property paperwork, Douthat was bitten by a tick. Then, he got very, very ill.

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Douthat’s book, The Deep Places: A Memoir of Illness and Discovery, published Tuesday, is about his yearslong attempt to heal a bad case of chronic Lyme disease. The debilitating condition that afflicts self-identified sufferers with pain, fatigue, brain fog, and a range of other symptoms, and one that the medical establishment often denies, and certainly does not know how to effectively treat. It joins several other books about chronic Lyme and other chronic illnesses recently published by respected journalists: Pamela Weintraub, 2008; Julie Rehmeyer, 2017; Porochista Khakpour, 2018; Meghan O’Rourke, forthcoming.

This list forms a little shelf of misery and uncertainty and rage, wrapped in beautiful prose. In a way, these volumes are the hardcover, researched-and-edited faces of thousands (millions?) of patients’ words about chronic Lyme and chronic fatigue syndrome, which exist in the form of posts to forums, messages to email groups, updates to Facebook groups of fellow sufferers. Though the addition of “long COVID” advocates to this group has pushed chronic, mysterious illnesses into the spotlight, getting recognition is still difficult. Mainstream doctors have been slow to accept that chronic Lyme exists at all, pushing patients who believe they have it into the margins, looking for treatments in unorthodox places.

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Douthat’s contribution to the modern corpus of chronic Lyme stories is notable for the professional political leanings, as well as the gender, of its author. Previous similar memoirs by women have been met with disbelief (reality star Yolanda Hadid’s entry into the genre is titled with a plea: Believe Me), and he knows it. Douthat is an unusually genial and interesting right-ish pundit, and has joked that he’s “the radical left’s favorite conservative.” In characteristically self-aware fashion, he dwells upon the distinction between his story and that of the stereotypical chronic Lyme patient, while also using it to prop himself up as a rational one. “I became determined to be the exception to this pattern—the Lyme patient who didn’t get tugged too far into the paranoid realm, the Lyme patient who experimented only with treatments that had some kind of clear basis in the material and quantifiable,” he writes of his attitude during the early depths of his illness—“the (male, conservative, New York Times columnist) Lyme patient whose account, once I was better, would be more convincing to skeptics influenced by sexism and wary of reality-television stars.”

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The ambition to be the “good Lyme patient” quickly shatters. It is impossible to follow mainstream doctors’ advice, he finds, when they have nothing to offer him. As his illness unfolds, Douthat ends up experimenting with many unproven treatments. Installed in the upstairs study in his centuries-old Connecticut home, he lines up pill bottles, antibiotics, and herbal supplements. He begins dosing himself, alternating antibiotics prescribed by some of the many “Lyme-literate” doctors he sees with herbs like cat’s claw, artemisia, and Japanese knotweed, in ways that provoke the intense, twitchy Jarisch Herxheimer reactions that many chronic Lyme patients undergoing antibiotic treatment experience, and that he finds are followed by exhaustion, and then finally some relief from his Lyme symptoms. He tries intensive vitamin C and therapeutic magnets. He acquires a thousand-dollar Rife machine, an emitter of particular frequencies that’s not scientifically proven to work, but that he finds helpful in weaning off the many antibiotics he’s relied upon. He prays—to Mary,  different saints, and dead relatives—and swears that this also produces the Herxheimer reactions … though he knows how that sounds. By the end of the book, he can largely rejoin his family’s life after three or four years of pain, tension, and preoccupation. But the symptoms and flare-ups never completely leave—he is forced to abandon the goal of getting completely, 100 percent “better.”

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Douthat allows himself to learn from this. His decision to buy the house stemmed from a sense of optimism, he explains in the book, that governed his life in a way that he didn’t really recognize until he got sick. “I only really believed in upside,” he writes of making the choice to relocate. While the Connecticut house is very unlike a more extreme right-wing libertarian retreat (Idaho bunker, guns and ammo, freeze-dried food in buckets), there was still a lot of small-C conservative isolationism that went into the idea of buying this family home. “I had a vision of myself going out in the world, flying around to various Babylons for important meetings and interviews, and then coming home on a summer evening, down a winding road, up a drive lined with oak trees, to find my two—no, make it three; no, make it four—kids waiting for me, playing on swings in the July dusk in front of a big white colonial, my wife behind them, the whole scene an Arcadia,” he writes. But this isn’t what happened. “Our experience of returning to New England was like coming into one of those places in literature or film where the surface of beauty and neighborliness conceals a dark secret,” Douthat writes. “Except, instead of the human sacrifice in Midsommar or the small-town stoning in ‘The Lottery,’ it was the widely shared understanding that the price of all those lovely lanes and stone walls was the possibility that you could lose years, or more, to Lyme.”

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As Douthat and his wife talk to neighbor after neighbor and discover how many have had their lives blighted by the disease, he begins to feel that Lyme has created “parallel worlds” that overlap, the worlds he describes as “Lyme is no big deal” (the point of view of the doctors he encounters who walk the mainstream line when it comes to Lyme treatment) and “Lyme is devastating” (the reality inside a number of those large, monied homes). Abigail Dumes, an anthropologist who wrote a book about chronic Lyme and the medical establishment, made special room for an analysis of the striking contrast between the disease’s dark mystery and the visually utopic places where it was born: lush Connecticut, the fancy suburbs of New York, and Long Island, where New York City’s masters of the universe retreat to give their families the gift of peace and quiet. “It’s the environmental privilege of being able to live in or close to ‘nature’ that makes possible the environmental risk of Lyme disease,” Dumes writes. If Douthat has read Dumes’ book, he doesn’t mention it, but his experience serves as an apt illustration of her point: Lyme is a creeping problem that intrudes on the Northeastern idyll of wealth and tradition, bringing uncertainty, pessimism, and pain.

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I spent a lot of the pages marveling at Douthat’s relative privilege, which shone through his misfortune of chronic illness and which (to be fair!) he acknowledges multiple times. One lesson of the book ends up being that you can, to an extent, buy your way out of pain with pricey experimental treatments. And then there is his gender: I suspect some people who have (rightfully) noted the unfairness of the historically gendered reaction to chronic Lyme patients, who tend to be female, may bristle a bit at this book, in which the author tries, in one stretch, to set himself up as not the “kind of person” who would have a disease that has been regarded as psychosomatic. (“I was entirely healthy, entirely normal, with no tofu or carob in my diet, no need for herbal remedies or a laying on of hands,” he writes, contrasting himself with his mother, who had a nebulous chronic illness when he was young.) Douthat insists through this that his journey is scientific, in its own way; he describes the careful exploration of treatments and his subsequent reactions as “the most empirical work I have ever attempted in my life.” This is at once correct and a little frustrating: Who, after all, gets to decide they are being empirical, even while working with a study subject of one person who is also themselves? I don’t think anyone would believe Yolanda Hadid if she described herself this way.

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But the staunch Lyme fearers and longtime tofu eaters, like me, are maybe not who this memoir is for. (Though I have to say, I mostly liked it.) I hope people who hold the view that treatments and illnesses that fall outside the current grasp of medical science are woo-woo will pick up and finish the book. The final few chapters—the one where Douthat covers the extreme treatments, and then, the obligatory chapter on COVID-19—are where the writer’s most profound takeaways on medicine, illness, and the body can be found. Whether or not you think that chronic Lyme “exists,” the specter he presents, of thousands of people with chronic illness who can’t seem to get help from doctors, is something anybody interested in understanding why people mistrust medicine should read.

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As a volume, I think it will be convincing. In addition to offering his brand of level-headed conservative maleness as an on-ramp, Douthat’s book lands at a time when more people than ever viscerally get that an invisible foe can upend life. “COVID offered a terrible crash-course education in the reality of chronic illness, the gap between what a disease was supposed to do in its ‘normal’ presentation (symptoms in the throat and lungs for the coronavirus, a bull’s-eye rash and fever and joint pain for Lyme) and how often the actual presentation is something else entirely,” Douthat writes. We are all coming to understand “how many weird cascades a single invader can set off, how easily a previously healthy person can fall into a pit.”

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