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queenluaA relative of mine had a brain tumor when he was very young. Large, in a difficult-to-reach spot, and certainly lethal if untreated.
His father immediately called around, asking for, not the best oncologist in the country, but the best brain surgeon. His father opinion's was, there is tumor that is hurting my son, I want it out, and I want it out now.
This was not the recommended course. It was not the course with the statistically-most-likely-to-be-positive outcome. The safer course would've been some chemo and some other techniques to at least try and shrink the tumor before performing an operation; the odds of brain damage or fatal complications when doing an operation with a tumor that large are outrageously high.
But. The father found a surgeon that was willing to try. Mayo Clinic. The operation was scheduled for the following week.
This story, surprisingly (and thankfully!), has a fine ending. The tumor came out; the cancer didn't come back. The relative did have permanent injury from the operation—a dodgy leg and a few other quirks—but that's a small price, relative to the life the relative's lived since then: happy, healthy, doing work he loves, beloved by his church community, and generally living a good life.
So obviously I don't think this father made a bad choice. It's not like he was choosing between chemo and weird-herbal-supplements; both of the options he considered were perfectly valid medical treatments. He chose the one that was riskier, but honestly neither course of treatment had great odds; when you're choosing between two bad options, "I like surgery better than chemo" seems as good a choice as any.
But I do think that choice—the big, physical, dramatic action, versus the patient, strange, quiet waiting—points at some larger peculiarities in how we think about medicine.
* * *
The Deep Places is a memoir of Ross Douthat's struggles with a chronic illness. I picked it up because I'd skimmed a few reviews, and they seemed all over the place in their assessment of it, and while I find Douthat's political writing typically shallow and unimaginative, the prose is always perfectly fine, so why not give his apolitical memoir a try?
(Also, I'd just finished Perhaps the Stars, and needed something kinda quick and easy and brainless to read while I recovered from that, and NYT columns are written at like a fourth-grade reading level or whatever lmao)
As a portrait of the unique kind of suffering and alienation and loneliness that comes from having a disabling illness that no one quite knows how to treat, it's perfectly fine. Spooky, eerie, sometimes poignant. An old friend hears that Douthat's ill and comes to visit him, and while Douthat's glad, he also resents the dude on some level—because even the well-intentioned, much-appreciated visit means Douthat's got to keep up his facade, has to pretend to be normal and fine while eating pizza, even while he's in pain. His and his wife's increasing social isolation during the illness is wrenching and appropriately claustrophobic.
Those kinds of details and anecdotes are good, vivid, sympathetic. Some reviews make it sound like this is The Point TM of the book, and it'd be fine if that's what it actually were..
But it's obvious Douthat doesn't just want to tell us about his struggles. He doesn't want to speak about the limits of science, or the medical system, or whatever.
See, Douthat is absolutely convinced that chronic Lyme disease, specifically, is a thing, and that it's exactly what he has, and the medical establishment has been ignoring and/or disregarding all the "evidence" for its existence for decades.
Um.* * *
Here's the facts, as conventional science best understands them:
Lyme disease is a tick-borne illness, caused by a bacteria carried by deer ticks. Most people get better after a short course of antibiotics—a few weeks. However, a small minority feel unwell for weeks or months or even years after the course is finished. This is generally deemed "post-treatment Lyme disease," which is basically medical-ese for "some weird shit your body's still dealing with even though we did the antibiotic thing, idk, probably some autoimmune fuckery, you'll be better in a few months or a few years we hope."
Except, according to Douthat, post-treatment Lyme disease is an illusion. Why would you assume it's some chronic aftereffect, instead of the more parsimonious explanation of, the bacteria are still there? No, Douthat's convinced these people have chronic Lyme disease, a form of Lyme where the bacteria persists in the body—even though it can't be detected by any lab test. (This is where alarm bells started going off for me.) The bacteria involved in Lyme go into a "cyst"-like formation, and burrow themselves into the tissues of your body where they're undetectable, but still causing damage—moving from place to place at random, causing joint pain, GI paint, you name it. So the correct solution is to consume mega-doses of antibiotics for years until you get better.
I spent some time reading the literature on the subject. And yeah, I don't think chronic Lyme is a thing. "Weird pain that's undetectable in a lab test and moves around the body at random from day to day" doesn't sound like bacteria. "Mega-doses of antibiotics" are a bad idea for a lot of reasons, and also, studies say they don't work, so.
To be absolutely clear: I'm not saying Douthat's sickness is fake. I definitely believe the guy's desperately sick with something, I believe it totally sucks, and I wish him the absolute best in his journey to wellness. If this book were just about how being sick with some weird illness sucks, I wouldn't nitpick at all.
But. Douthat is earnestly trying to make the case for this specific nonexistent diagnosis, in a mass-published book, and thus I think it's fair to hold it to some truthful/factual standard. And ultimately Douthat just isn't very convincing.
Like, running through some of Douthat's strident arguments for the reality of chronic Lyme:
* While he never, at any point, tests positive for Lyme, he mentions getting a copy of his lab results, and observing that three out of the required five bands for a diagnosis appeared in the result. To Douthat, this is proof that he had Lyme, just a sneakier version, a three-bands-out-of-five version. Now, I don't know enough about the particular medical test to know for sure, but there are plenty of lab tests where the presence or absence of a particular band or thing isn't just a matter of degree; it means a totally different thing. You don't look at a pregnancy test with only one line and say the person's pregnant; it only counts if it's the two lines, dude! Maybe Douthat has done that research? but he doesn't elaborate on this at all, whereas he elaborates on a great number of other scientific things in the book, so like... maybe the dude's just a little naive, yaknow?
* He insists that Chronic Lyme sufferers are unique, compared to other folks with alternative diagnoses, because they don't disagree about the "basic facts" of medicine. They agree that antibiotics work and germs are real and all that. They simply want more treatment, more antibiotics than the medical orthodoxy recommends. This is also known as... disagreement.
* Douthat bristles at length that the medical establishment is so anti-experimentation, unwilling to let people try mega-doses of IV antibiotics for months on end. At no point does the man seem to consider the potential consequences and externalities. IVs, like surgeries, are not risk-free; there are very real risks of infection from getting needled that much, as anyone who's had too many can tell you. Given that the studies we've got don't show any benefit from the antibiotic IVs, it's a little hard to justify it. And there's further real risks of societal trust—if doctors become known for encouraging sketchy, high-risk treatments, then society as a whole's at risk of losing faith in doctors, and that's an even bigger deal.
That may in fact be paternalistic; we may be erring too far on the side of caution; certainly that's what a lot of the anti-FDA folks seem to be arguing these days. But if that's the case you're making, I think it's important to state that clearly, rather than pretending doctors are being unreasonable here.
* One reason Douthat insists that his illness couldn't possibly be even somewhat psychological in nature is because of where he was, mentally, when he first fell ill. He and his wife had just sold a house in DC for a stupendous sum of money; they'd found their wonderful new "forever home" in a picturesque rural corner of Connecticut; he had a great job at a national newspaper. Why would he have a mental problem?
He presents this as if it's a one-hit KO of an argument. To me, it was obviously the exact opposite. Anecdotally, a bunch of people I personally know had their most profound mental health crises at their absolute highest—the friend who got that longed-for promotion and then was seized by sudden existential dread for months afterward; the friend who had the much-longed-for, very-wanted child, and then found she couldn't stop crying. I've had my own experience with this: years ago, after I'd just earned a fellowship for a fantastic new opportunity that I'd dreamed of, and was moving to a wonderful new city, I felt like an absolute king. I also had anxiety so bad I couldn't sleep for two months. It doesn't surprise me whatsoever that a great boon can fuck you up physically; it happens all the time.
* I don't really remember seeing many instances of the word "autoimmune," which was surprising to me. My understanding is that one of the best theories we've got for the suite of "weirdo chronic conditions" (chronic fatigue syndrome, fibromyalgia, etc) is that they may be autoimmune in nature—you had a cold virus, now the cold's gone, but now your immune system's all fucked up and doing weird bullshit throughout your body. It's a bummer if true, since we still aren't very good at treating autoimmune disorders, but you'd think Douthat would at least consider that root cause—unless, of course, the idea of something that does not have a clear treatment plan is fundamentally unacceptable to him..
* When Douthat finally gets to the chapter where he's describing some of the goofier treatments he underwent—admittedly in a tentative and self-effacing way—he describes a "magnetic" healer based out of some office in a strip mall, and seems impressed that the magnet dude can determine, with ~80% accuracy, where Douthat is experiencing pain on a given day, without Douthat telling him first.
The credulousness here slew me. Cold reading is very effective; Forer Effect-type phenomena are very effective. I use it every time I read tarot cards. I bet people would claim I have an 80% accuracy rate too, and I promise you I am doing nothing supernatural whatsoever; I'm just good at reading people. And I'm not a professional! Of course the magnet dude in the strip mall has an 80% "hit" rate!
* * *
So, okay, the dude's developed a cranky theory for what's wrong. That's cringey, sure, and I'm sort of side-eying his publisher for not pushing back a bit more on at least some of his claims.
But it gets kind of ugly whenever he discusses psychological illness, or other apparently-lesser forms of chronic illness.
Basically: I find it bewildering how often Douthat conflates "psychosomatic" with "they're telling me my pain is fake/all in my head."
To be clear—I don't want to act like the medical system is infallible, that doctors always know best, that Douthat is fundamentally wrong to try and push for better answers, or anything like that. Of course there are doctors who say "it's just stress" when they deem the young woman in their office hysterical and unreliable; of course the system is frequently condescending and paternalistic; of course there are doctors who are impatient and rude and callous and incompetent. Many, many nonfiction books have been written about such regrettable failures.
But, by his own accounting, that's not what's happening here. The doctors run some tests, can't figure out what's happening, and refer him to some specialists. The specialists run more tests, they try some things, nothing works. At some point, someone suggests maybe his symptoms are anxiety-related, and we get a tetchy aside from Douthat about how irritating this suggestion is.
This doesn't read like the dismissive brush-offs that are all-too-common in the medical system. This reads like doctors trying pretty damn hard, finding nothing particularly conclusive, and making some tentative diagnoses of exclusion, because, fuck, dude, may as well try it, it's not impossible that that's the cause.
And the mere fact that pain may be psychosomatic in nature doesn't mean it's bullshit or unworthy of attention. That pain is still very real. My own experience with anxiety was very manifestly physical. Vertigo, racing heartbeat, nausea, gagging, vomiting, uncontrollable crying. I thought I had a heart condition. I thought I was dying. It fucking sucked. It also—thankfully, in my case!—was trivially manageable after I took some damn anti-anxiety meds.
There's also a weird two-step he wants to do when he starts discussing chronic illness in general. On the one hand, he extends great sympathy to fellow chronic lyme sufferers, to the people trying odd or unconventional things to try and be well. On the other hand, he spits the name "fibromyalgia" like a curse, pointing out that it's often a diagnosis of exclusion—as though that somehow makes it entirely unworthy or unuseful? He also speaks some about his mother's struggles with a mysterious chronic illness when he was growing up, yet he's always faintly condescending when he talks about her—talking about her weird diet and mysterious flares—and I kept wondering when he was going to ask her what ended up working for her and what didn't, you know? There's a reason family medical histories are kinda useful?
And he's so obsessed with insisting he is rational that it starts to become a little offputting, like—friends I know who've gone in for alternative medicine when everything else failed are generally unselfconscious about the choice; they'll freely admit they're not sure why or how it works (or, if they do have a rationale, they'll mention it, but not at any tedious length); they'll shrug and say, hey, it worked for me, totally worth it. And it is! Even if something's a placebo, it's a placebo that works—why's Douthat so weirdly defensive about this? why does he seem to only extend his sympathies to sufferers who accept his particular "rational" predilections?
* * *
I do think there's an adjacent thing lurking just beneath the surface here. In general, I don't think people realize just how limited modern medicine is, just how much a particularly bad reaction to an innocuous virus or infection can fuck you up, and just how often the only solution we've really got is—frustratingly—time.
I first noticed this when media coverage on "long COVID" started—which, to be clear, long COVID is real, and it sucks, and I wish everyone a very don't-get-long-COVID. But my reaction, when I first glanced at the data on it, was—wait, this is about the same rate of "long term badness" as any number of other diseases, right? Why's COVID special in this regard?
Which I'm sure sounds dismissive, so to clarify: this wasn't me saying "COVID's the same as any other disease." It's me saying "wait, do other people not realize that pretty much any virus that goes a little wrong can throw you straight into long-term disability?"
The answer, chatting around, seemed to be—yeah. When I mentioned the childhood friend who got the flu and was ill for years afterwards, people straight-up didn't believe me. "Just the flu?" they'd ask, and I'd say—yeah! "Just the flu" can be bad; "just the flu" will totally kill you. Not as much as COVID will, but it will.
I've had unusual proximity to a lot of such cases, with varying outcomes. The most common case is, person gets sick, then very sick, and they try a bunch of stuff but nothing really seems to work but time—on the order of months, or a year or two. There's a joke among doctors: "It's very important to treat patients as quickly as possible, before they get better on their own." And there's a lot of that, in these stories—they'll try treatment A, treatment B, and treatment C, and think maybe they're helping, but really the only treatment that ultimately works is "waiting a long time for your body to sort its shit out."
(I suspect this is what happened with Douthat, by the way. He insists that his periodic high-dose antibiotic regiments are the only reason he started feeling better two years later; having watched people gradually bounce back from illness after similarly long time periods, I think the antibiotics had nothing to do with it.)
And sometimes, yes, you never really get better. You learn a few things that help sometimes. You learn to live anyway. But it's a lonely place, and a hard adjustment.
So, I dunno, it's a little weird to me that Douthat entered this strange country, the shadow-world of people who became very sick from very mundane causes, where sometimes the answer is in fact patience, or peace, or whatnot, and the main thing he managed to come out of it was, "let's blast the fuckers with antibiotics and raise a huge thing about it." Like, what?
* * *
Which brings me back to my relative, the one who had the brain tumor.
That guy's dad, he's a good dad, to be clear. But his choice—the surgery over the chemo—is reflective of his larger disposition to the world. The only diseases he likes are ones with obvious causes, obvious treatments, the more brutish the better. He doesn't like the flu vaccine because he got sick for a day once, after taking it, and is convinced that that immediate, obvious correlation is a graver problem than some hypothetical flu infection he's never had. His vision's been getting worse for years, but rather than dare admit he's getting older, he squints at the menu in the restaurant in frustration for a few minutes before asking his girlfriend to make a choice for him. If the concept of depression or anxiety ever came up in his life, I imagine his reaction would be confusion and a stubborn refusal to understand: what do you have to be sad about? huh? go out and do something!
It's a sort of easily-tweaked, vaguely macho disposition, an insistence on action and direct causality and an abhorrence toward weakness. As I read Douthat's book, I couldn't help but think of this guy, and wonder that, for all their cultural and educational differences, they're very similar in their dispositions.
It's interesting to me purely because that viewpoint is so foreign to me—not foreign in the sense of, I've never encountered it, because of course I've encountered it, but it's just absolutely alien to how I view and process the world. I've never reacted well to the kind of thin-skinned outrage at slights that's so common in pundit-types and macho guys; I stare back, dead-eyed, waiting for their tantrum to recede, say whatever'll settle their nerves the fastest, and silently tick down my respect for them. I care relatively little about looking right or correct or proper; I spent most my childhood as the "weirdo" and found I was perfectly happy that way. I am absolutely certain of very little, and tend to avoid overstating what I know. These aren't necessarily good traits, to be clear; I'm not trying to puff myself up; they can lend themselves toward unhelpful cynicism and quietism. But they are the inclinations I have, which means that, to me, Douthat's mind is ultimately alien, and a bit offputting, but also interesting in its own niche way.
His father immediately called around, asking for, not the best oncologist in the country, but the best brain surgeon. His father opinion's was, there is tumor that is hurting my son, I want it out, and I want it out now.
This was not the recommended course. It was not the course with the statistically-most-likely-to-be-positive outcome. The safer course would've been some chemo and some other techniques to at least try and shrink the tumor before performing an operation; the odds of brain damage or fatal complications when doing an operation with a tumor that large are outrageously high.
But. The father found a surgeon that was willing to try. Mayo Clinic. The operation was scheduled for the following week.
This story, surprisingly (and thankfully!), has a fine ending. The tumor came out; the cancer didn't come back. The relative did have permanent injury from the operation—a dodgy leg and a few other quirks—but that's a small price, relative to the life the relative's lived since then: happy, healthy, doing work he loves, beloved by his church community, and generally living a good life.
So obviously I don't think this father made a bad choice. It's not like he was choosing between chemo and weird-herbal-supplements; both of the options he considered were perfectly valid medical treatments. He chose the one that was riskier, but honestly neither course of treatment had great odds; when you're choosing between two bad options, "I like surgery better than chemo" seems as good a choice as any.
But I do think that choice—the big, physical, dramatic action, versus the patient, strange, quiet waiting—points at some larger peculiarities in how we think about medicine.
The Deep Places is a memoir of Ross Douthat's struggles with a chronic illness. I picked it up because I'd skimmed a few reviews, and they seemed all over the place in their assessment of it, and while I find Douthat's political writing typically shallow and unimaginative, the prose is always perfectly fine, so why not give his apolitical memoir a try?
As a portrait of the unique kind of suffering and alienation and loneliness that comes from having a disabling illness that no one quite knows how to treat, it's perfectly fine. Spooky, eerie, sometimes poignant. An old friend hears that Douthat's ill and comes to visit him, and while Douthat's glad, he also resents the dude on some level—because even the well-intentioned, much-appreciated visit means Douthat's got to keep up his facade, has to pretend to be normal and fine while eating pizza, even while he's in pain. His and his wife's increasing social isolation during the illness is wrenching and appropriately claustrophobic.
Those kinds of details and anecdotes are good, vivid, sympathetic. Some reviews make it sound like this is The Point TM of the book, and it'd be fine if that's what it actually were..
But it's obvious Douthat doesn't just want to tell us about his struggles. He doesn't want to speak about the limits of science, or the medical system, or whatever.
See, Douthat is absolutely convinced that chronic Lyme disease, specifically, is a thing, and that it's exactly what he has, and the medical establishment has been ignoring and/or disregarding all the "evidence" for its existence for decades.
Um.
Here's the facts, as conventional science best understands them:
Lyme disease is a tick-borne illness, caused by a bacteria carried by deer ticks. Most people get better after a short course of antibiotics—a few weeks. However, a small minority feel unwell for weeks or months or even years after the course is finished. This is generally deemed "post-treatment Lyme disease," which is basically medical-ese for "some weird shit your body's still dealing with even though we did the antibiotic thing, idk, probably some autoimmune fuckery, you'll be better in a few months or a few years we hope."
Except, according to Douthat, post-treatment Lyme disease is an illusion. Why would you assume it's some chronic aftereffect, instead of the more parsimonious explanation of, the bacteria are still there? No, Douthat's convinced these people have chronic Lyme disease, a form of Lyme where the bacteria persists in the body—even though it can't be detected by any lab test. (This is where alarm bells started going off for me.) The bacteria involved in Lyme go into a "cyst"-like formation, and burrow themselves into the tissues of your body where they're undetectable, but still causing damage—moving from place to place at random, causing joint pain, GI paint, you name it. So the correct solution is to consume mega-doses of antibiotics for years until you get better.
I spent some time reading the literature on the subject. And yeah, I don't think chronic Lyme is a thing. "Weird pain that's undetectable in a lab test and moves around the body at random from day to day" doesn't sound like bacteria. "Mega-doses of antibiotics" are a bad idea for a lot of reasons, and also, studies say they don't work, so.
To be absolutely clear: I'm not saying Douthat's sickness is fake. I definitely believe the guy's desperately sick with something, I believe it totally sucks, and I wish him the absolute best in his journey to wellness. If this book were just about how being sick with some weird illness sucks, I wouldn't nitpick at all.
But. Douthat is earnestly trying to make the case for this specific nonexistent diagnosis, in a mass-published book, and thus I think it's fair to hold it to some truthful/factual standard. And ultimately Douthat just isn't very convincing.
Like, running through some of Douthat's strident arguments for the reality of chronic Lyme:
* While he never, at any point, tests positive for Lyme, he mentions getting a copy of his lab results, and observing that three out of the required five bands for a diagnosis appeared in the result. To Douthat, this is proof that he had Lyme, just a sneakier version, a three-bands-out-of-five version. Now, I don't know enough about the particular medical test to know for sure, but there are plenty of lab tests where the presence or absence of a particular band or thing isn't just a matter of degree; it means a totally different thing. You don't look at a pregnancy test with only one line and say the person's pregnant; it only counts if it's the two lines, dude! Maybe Douthat has done that research? but he doesn't elaborate on this at all, whereas he elaborates on a great number of other scientific things in the book, so like... maybe the dude's just a little naive, yaknow?
* He insists that Chronic Lyme sufferers are unique, compared to other folks with alternative diagnoses, because they don't disagree about the "basic facts" of medicine. They agree that antibiotics work and germs are real and all that. They simply want more treatment, more antibiotics than the medical orthodoxy recommends. This is also known as... disagreement.
* Douthat bristles at length that the medical establishment is so anti-experimentation, unwilling to let people try mega-doses of IV antibiotics for months on end. At no point does the man seem to consider the potential consequences and externalities. IVs, like surgeries, are not risk-free; there are very real risks of infection from getting needled that much, as anyone who's had too many can tell you. Given that the studies we've got don't show any benefit from the antibiotic IVs, it's a little hard to justify it. And there's further real risks of societal trust—if doctors become known for encouraging sketchy, high-risk treatments, then society as a whole's at risk of losing faith in doctors, and that's an even bigger deal.
That may in fact be paternalistic; we may be erring too far on the side of caution; certainly that's what a lot of the anti-FDA folks seem to be arguing these days. But if that's the case you're making, I think it's important to state that clearly, rather than pretending doctors are being unreasonable here.
* One reason Douthat insists that his illness couldn't possibly be even somewhat psychological in nature is because of where he was, mentally, when he first fell ill. He and his wife had just sold a house in DC for a stupendous sum of money; they'd found their wonderful new "forever home" in a picturesque rural corner of Connecticut; he had a great job at a national newspaper. Why would he have a mental problem?
He presents this as if it's a one-hit KO of an argument. To me, it was obviously the exact opposite. Anecdotally, a bunch of people I personally know had their most profound mental health crises at their absolute highest—the friend who got that longed-for promotion and then was seized by sudden existential dread for months afterward; the friend who had the much-longed-for, very-wanted child, and then found she couldn't stop crying. I've had my own experience with this: years ago, after I'd just earned a fellowship for a fantastic new opportunity that I'd dreamed of, and was moving to a wonderful new city, I felt like an absolute king. I also had anxiety so bad I couldn't sleep for two months. It doesn't surprise me whatsoever that a great boon can fuck you up physically; it happens all the time.
* I don't really remember seeing many instances of the word "autoimmune," which was surprising to me. My understanding is that one of the best theories we've got for the suite of "weirdo chronic conditions" (chronic fatigue syndrome, fibromyalgia, etc) is that they may be autoimmune in nature—you had a cold virus, now the cold's gone, but now your immune system's all fucked up and doing weird bullshit throughout your body. It's a bummer if true, since we still aren't very good at treating autoimmune disorders, but you'd think Douthat would at least consider that root cause—unless, of course, the idea of something that does not have a clear treatment plan is fundamentally unacceptable to him..
* When Douthat finally gets to the chapter where he's describing some of the goofier treatments he underwent—admittedly in a tentative and self-effacing way—he describes a "magnetic" healer based out of some office in a strip mall, and seems impressed that the magnet dude can determine, with ~80% accuracy, where Douthat is experiencing pain on a given day, without Douthat telling him first.
The credulousness here slew me. Cold reading is very effective; Forer Effect-type phenomena are very effective. I use it every time I read tarot cards. I bet people would claim I have an 80% accuracy rate too, and I promise you I am doing nothing supernatural whatsoever; I'm just good at reading people. And I'm not a professional! Of course the magnet dude in the strip mall has an 80% "hit" rate!
So, okay, the dude's developed a cranky theory for what's wrong. That's cringey, sure, and I'm sort of side-eying his publisher for not pushing back a bit more on at least some of his claims.
But it gets kind of ugly whenever he discusses psychological illness, or other apparently-lesser forms of chronic illness.
Basically: I find it bewildering how often Douthat conflates "psychosomatic" with "they're telling me my pain is fake/all in my head."
To be clear—I don't want to act like the medical system is infallible, that doctors always know best, that Douthat is fundamentally wrong to try and push for better answers, or anything like that. Of course there are doctors who say "it's just stress" when they deem the young woman in their office hysterical and unreliable; of course the system is frequently condescending and paternalistic; of course there are doctors who are impatient and rude and callous and incompetent. Many, many nonfiction books have been written about such regrettable failures.
But, by his own accounting, that's not what's happening here. The doctors run some tests, can't figure out what's happening, and refer him to some specialists. The specialists run more tests, they try some things, nothing works. At some point, someone suggests maybe his symptoms are anxiety-related, and we get a tetchy aside from Douthat about how irritating this suggestion is.
This doesn't read like the dismissive brush-offs that are all-too-common in the medical system. This reads like doctors trying pretty damn hard, finding nothing particularly conclusive, and making some tentative diagnoses of exclusion, because, fuck, dude, may as well try it, it's not impossible that that's the cause.
And the mere fact that pain may be psychosomatic in nature doesn't mean it's bullshit or unworthy of attention. That pain is still very real. My own experience with anxiety was very manifestly physical. Vertigo, racing heartbeat, nausea, gagging, vomiting, uncontrollable crying. I thought I had a heart condition. I thought I was dying. It fucking sucked. It also—thankfully, in my case!—was trivially manageable after I took some damn anti-anxiety meds.
There's also a weird two-step he wants to do when he starts discussing chronic illness in general. On the one hand, he extends great sympathy to fellow chronic lyme sufferers, to the people trying odd or unconventional things to try and be well. On the other hand, he spits the name "fibromyalgia" like a curse, pointing out that it's often a diagnosis of exclusion—as though that somehow makes it entirely unworthy or unuseful? He also speaks some about his mother's struggles with a mysterious chronic illness when he was growing up, yet he's always faintly condescending when he talks about her—talking about her weird diet and mysterious flares—and I kept wondering when he was going to ask her what ended up working for her and what didn't, you know? There's a reason family medical histories are kinda useful?
And he's so obsessed with insisting he is rational that it starts to become a little offputting, like—friends I know who've gone in for alternative medicine when everything else failed are generally unselfconscious about the choice; they'll freely admit they're not sure why or how it works (or, if they do have a rationale, they'll mention it, but not at any tedious length); they'll shrug and say, hey, it worked for me, totally worth it. And it is! Even if something's a placebo, it's a placebo that works—why's Douthat so weirdly defensive about this? why does he seem to only extend his sympathies to sufferers who accept his particular "rational" predilections?
I do think there's an adjacent thing lurking just beneath the surface here. In general, I don't think people realize just how limited modern medicine is, just how much a particularly bad reaction to an innocuous virus or infection can fuck you up, and just how often the only solution we've really got is—frustratingly—time.
I first noticed this when media coverage on "long COVID" started—which, to be clear, long COVID is real, and it sucks, and I wish everyone a very don't-get-long-COVID. But my reaction, when I first glanced at the data on it, was—wait, this is about the same rate of "long term badness" as any number of other diseases, right? Why's COVID special in this regard?
Which I'm sure sounds dismissive, so to clarify: this wasn't me saying "COVID's the same as any other disease." It's me saying "wait, do other people not realize that pretty much any virus that goes a little wrong can throw you straight into long-term disability?"
The answer, chatting around, seemed to be—yeah. When I mentioned the childhood friend who got the flu and was ill for years afterwards, people straight-up didn't believe me. "Just the flu?" they'd ask, and I'd say—yeah! "Just the flu" can be bad; "just the flu" will totally kill you. Not as much as COVID will, but it will.
I've had unusual proximity to a lot of such cases, with varying outcomes. The most common case is, person gets sick, then very sick, and they try a bunch of stuff but nothing really seems to work but time—on the order of months, or a year or two. There's a joke among doctors: "It's very important to treat patients as quickly as possible, before they get better on their own." And there's a lot of that, in these stories—they'll try treatment A, treatment B, and treatment C, and think maybe they're helping, but really the only treatment that ultimately works is "waiting a long time for your body to sort its shit out."
(I suspect this is what happened with Douthat, by the way. He insists that his periodic high-dose antibiotic regiments are the only reason he started feeling better two years later; having watched people gradually bounce back from illness after similarly long time periods, I think the antibiotics had nothing to do with it.)
And sometimes, yes, you never really get better. You learn a few things that help sometimes. You learn to live anyway. But it's a lonely place, and a hard adjustment.
So, I dunno, it's a little weird to me that Douthat entered this strange country, the shadow-world of people who became very sick from very mundane causes, where sometimes the answer is in fact patience, or peace, or whatnot, and the main thing he managed to come out of it was, "let's blast the fuckers with antibiotics and raise a huge thing about it." Like, what?
Which brings me back to my relative, the one who had the brain tumor.
That guy's dad, he's a good dad, to be clear. But his choice—the surgery over the chemo—is reflective of his larger disposition to the world. The only diseases he likes are ones with obvious causes, obvious treatments, the more brutish the better. He doesn't like the flu vaccine because he got sick for a day once, after taking it, and is convinced that that immediate, obvious correlation is a graver problem than some hypothetical flu infection he's never had. His vision's been getting worse for years, but rather than dare admit he's getting older, he squints at the menu in the restaurant in frustration for a few minutes before asking his girlfriend to make a choice for him. If the concept of depression or anxiety ever came up in his life, I imagine his reaction would be confusion and a stubborn refusal to understand: what do you have to be sad about? huh? go out and do something!
It's a sort of easily-tweaked, vaguely macho disposition, an insistence on action and direct causality and an abhorrence toward weakness. As I read Douthat's book, I couldn't help but think of this guy, and wonder that, for all their cultural and educational differences, they're very similar in their dispositions.
It's interesting to me purely because that viewpoint is so foreign to me—not foreign in the sense of, I've never encountered it, because of course I've encountered it, but it's just absolutely alien to how I view and process the world. I've never reacted well to the kind of thin-skinned outrage at slights that's so common in pundit-types and macho guys; I stare back, dead-eyed, waiting for their tantrum to recede, say whatever'll settle their nerves the fastest, and silently tick down my respect for them. I care relatively little about looking right or correct or proper; I spent most my childhood as the "weirdo" and found I was perfectly happy that way. I am absolutely certain of very little, and tend to avoid overstating what I know. These aren't necessarily good traits, to be clear; I'm not trying to puff myself up; they can lend themselves toward unhelpful cynicism and quietism. But they are the inclinations I have, which means that, to me, Douthat's mind is ultimately alien, and a bit offputting, but also interesting in its own niche way.
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Date: 2021-11-23 07:40 pm (UTC)no subject
Date: 2021-11-24 05:58 am (UTC)