The Pequod Review:
There is great beauty in Ross Douthat's The Deep Places, one of the most perceptive and heartfelt accounts I have ever read of what it is like to experience chronic illness. Douthat was a relatively healthy 36-year-old when in 2015 he began experiencing a variety of painful symptoms ("a heavy ache in the shoulder I’d been sleeping on, a pan-fry sizzle on my hips, a throbbing at the very front of my skull...") that he would eventually determine were caused by Lyme disease. Like most healthy people, Douthat had previously never fully appreciated what it was like to be seriously ill:
That was basically how I thought of myself at that point in my life. I was the guy who did things. My ancestral line was filled with failed businessmen and artistic types, garage-sale rummagers and self-conscious outsiders — the sort of educated people who used the Times stock market listings for kindling on family picnics to show their disdain for upper-class success. I always intended to be different, and I always had been, from the Harvard acceptance letter to the job at the Times, and now to this brilliant real estate coup that would root us securely in a family compound for decades to come. So the way it happened, the sale and the opportunity coming together, felt like confirmation that we were on the right path, that I had planned and worked and won the things I wanted and that I deserved them — that my ambitions and God's purposes could stroll along together nicely, that bad things might sometimes happen to good meritocrats, but surely not to me.
I had been an adult in the world for seventeen years, and with a few exceptions my body had done everything I asked of it without complaint — even if my belly had grown a little ample in the process. Having that same body betray me somehow — no that was unimaginable.
If I had crossed the border into illness, it had to be temporary. It was a mistake, an accident, a passport problem — and I simply had to find the quickest way back out.
Unfortunately, his illness turned out to not be temporary, and much of the rest of the book traces Douthat's navigation through an American medical system that is arguably not well-equipped to deal with chronic illness — e.g., visits to traditional doctors who attributed his symptoms to stress or poor mental health, desperate research into non-traditional healers, and interactions with various other chronically ill individuals. Not all of Douthat's criticisms of the medical system are convincing — the skepticism he encounters from physicians often seems quite reasonable and well-founded — but he is surely right that a form of selection bias can influence doctors' thinking:
It was easy enough, against this backdrop, to imagine your way into the mindset of the typical Lyme-skeptical doctor in the greater Connecticut area. You see a lot of Lyme patients, you prescribe the standard regimen for most of them, and a lot of them get better. If you get Lyme disease, you probably get better, too, giving you a personal experience to set against all the wilder accounts in your community.
Your patients who don't get better, meanwhile, are likely to drop out of your practice when your treatments don't seem to help them. Instead of seeing them and following them across months and years of struggle, you lose track of them until they resurface via anecdote or brief encounters. And when they do, chances are that they're trying something weirder even than a lengthy course of antibiotics... or they've picked up extremely paranoid-sounding ideas about the medical system... or they claim to have discovered that they have some other chronic condition in addition to their Lyme disease... or they've adopted some fad diet... on and on and on, through a varying list that consistently gives you a reason to extend them sympathy but not belief.
As a more compelling piece of evidence supporting his lack of faith in the medical establishment (or at least the media's presentation of the medical establishment), Douthat cites the shifting moods on hydroxychloroquine during COVID:
The hydroxychloroquine debate was a good example. The initial support for the drug came from anecdata, from doctors using it in Asia and then Europe and reporting good results for patients who took it early in the course of the disease. Then it was taken up by a shaggy-haired French doctor, Didier Raoult, who resembled many Lyme specialists I'd met: eccentric and self-confident and brilliant, easy to dismiss as a crank but also the sort of person who might champion a helpful treatment early. Then Trump starting touting the drug as some sort of miracle cure, and you could see the establishment narrative harden, cyst-like, in response -- this was an "unproven" and "dubious" treatment with dangerous side effects (even though two billion people had taken it at some point in their lives), and anyone who experimented with it as a COVID-19 treatment was simply reckless (never mind that the alternative for high-risk patients who got the virus at that point was to try ... nothing). And then came the big, definitive Lancet study showing that not only was the drug ineffective, but 30 percent more COVID patients died when they took it as compared with a placebo.
Case closed -- except then came the retraction of the big study, which turned out to be, in the words of The Lancet's editor, a "fabrication" and "a monumental fraud." A study from Detroit's Henry Ford Hospital followed, showing success using the drug for early cases. But it wasn't a randomized controlled trial; the media treated it critically, and even more so when Trump touted it. Another study came out, this time with a randomized design, showing poor effects for the drug. This one got more favorable press attention, but the study had concentrated the drug's use among the sickest patients, which wasn't the initial claim for how and when it worked. And so it went, a ping-pong of studies, a polarized response, and a palpable desire in the health bureaucracy to "move on" to less controversial treatments.
In just a few months, then, an obscure malaria drug had managed to generate the kind of divisions that Lyme disease had taken years and years to forge, with conflicts between widespread anecdote, on the one hand, and the demand for certainty and rigor, on the other -- between an experimental approach to medicine and a bureaucratic disapproval of unproven treatments, all of it heightened by the pandemic's stakes and Trump-era polarization.
Some of these are good arguments for sure, but mostly it is Douthat's personal experiences (rather than his political views) that make the book such an eloquent one. In an especially strong section, he describes how friends and family often have difficulty providing comfort to the chronically ill:
Human beings have a great capacity for kindness, empathy, and help, but we are more likely to rise to the occasion when it is clearly an occasion — a moment of crisis, a time-bound period of stress. In the aftermath of a hurricane, society doesn't usually fragment; it comes together in solidarity and support. Likewise with families and individuals facing suffering in the moment that it descends, or when a terrible arc finally bottoms out: Not always, but very often, people behave well, with great generosity, in the face of a mortal diagnosis, a mental collapse, an addict's nadir...
But when the crisis simply continues without resolution, when the illness grinds on and on and on — well, then a curtain tends to fall, because there isn't an obvious way to integrate that kind of struggle into the realm of everyday life.
The Deep Places is short and slight and not altogether persuasive — Douthat never fully convinces the reader than in fact he has chronic Lyme disease, even though he seems to have convinced himself. However, the book is quite strong in its handling of Douthat's feelings and emotions regarding what is surely not just an imagined illness.