The important lesson of Ross Douthat's medical memoir

In his new book, The Deep Places: A Memoir of Illness and Discovery, Ross Douthat of The New York Times tells a gripping story of his multi-year struggle with chronic Lyme disease, an ailment many doctors don't think is real. Published Tuesday, the book is beautifully written and bracingly honest, which means Douthat faces questions about the reality of chronic Lyme head on. The result is a memoir that raises important, far-reaching questions about much more than the author's own substantial and prolonged experience of suffering. Douthat ends up placing nothing less than the character of medical knowledge itself on the examination table.

When you're sick, how do you know it? Sometimes we go in for a routine appointment and the physical exam or a test reveals a previously unknown illness. But more often, we seek out a doctor when we have symptoms. We feel sick or notice a problem somewhere in our body. Our description of those symptoms, often combined with laboratory tests, reveal an illness, which points in turn to an established treatment regimen.

Douthat's story doesn't work that way. It starts with symptoms — but then goes off the rails. His tests for Lyme disease were inconclusive, so the standard treatment was initially delayed, then halted early after the drugs accentuated his symptoms in an alarming way. What followed was a long, agonizing struggle with years of persistent, wide-ranging symptoms treated by numerous unorthodox doctors and caregivers and even Douthat himself, with lots of trial and error.

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The medical establishment approves of none of this. Most doctors deny chronic Lyme is a real illness because the lion's share of those afflicted with Lyme recover much more quickly and easily. Hardly any doctors at all would sign off on the kind of antibiotic megadosing with which Douthat eventually experiments, let alone the many forms of alternative medicine he tries out of desperation.

So is Douthat suffering from a kind of psychosomatic malady and foolishly falling for medical quackery? At least one early reviewer appears to think so, and I expect there will be others. But it's also possible Lyme disease is an illness that, like syphilis and perhaps long COVID, presents very differently in extended cases for reasons we don't fully understand, varying from person to person. Or perhaps, like leprosy, it is sometimes highly resistant to treatment.

Such diseases are a problem for modern medicine because of its tendency to take a scientistic form, seeking uniform diagnoses and treatments across patient populations. The presumption that illnesses will present consistently helps contribute to medical advances. But what if sometimes a more purely empirical approach — one that takes the subjective experience of lingering symptoms more seriously — is called for?

Is that the case with chronic Lyme disease? I can't say for sure. All I can say is that Douthat makes a compelling case in The Deep Places that medical reality is sometimes more complex than modern medicine will allow.