A version of this essay appeared in Quillette magazine a few months ago under the heading, “The Psychologisation Pandemic.”
They seem to have the idea that millions of people around the world want nothing more in life than to lie in bed and fulfill their ‘sick role’ and that they don’t want to get better. It’s kind of an extraordinary notion.
~ public health journalist David Tuller.
I‘ve grown weary of a certain style of cultural criticism that’s come into vogue in recent years, especially online over the course of the pandemic:
There is a tendency today for otherwise normal and healthy (and very often privileged) young people to dramatize their pain and problems and pathologies online for attention and sympathy and status; culturally rewarded by peers and parents and prestigious institutions and platforms for exaggerating their weakness and victimhood; often diagnosing themselves with various mental or physical disorders they may or may not actually have; increasingly defining themselves by their disabilities and diseases for a sense of purpose and specialness and belonging; ultimately putting more stock in their vulnerability to life’s forces than their resilience in the face of them — and the long running consequence is that we’re raising a generation that’s uniquely fragile and incapable of dealing with reality. The kids are not alright.
There are many themes at play in that description – political correctness, the culture war, modern liberalism, the whole intersection of our collective mental health and the ever-expanding digital space. But the real object of the kids are not alright critique, I think, is a popular kind of therapeutic language and culture found both online and off, driven mostly by social media and risk-averse parenting and characterized by an unrelenting emphasis on emotional and moral safety. Every painful feeling or experience is meant to be a sign of some larger social or medical issue and difficult realities are rearranged in one’s mind to soothe and affirm the self and alleviate personal agency and responsibility. The kids may not be alright, or at least are very strange and frightening to me personally.
But is it actually true that people are genuinely rewarded for their suffering and truly benefit from victimhood? Is it true that having a disability or illness comes with some sort of social advantage that outweighs the handicap? That weakness and incompetence are more prized in our culture than strength and capability, that we prefer bleak stories of failure and defeat to uplifting narratives of success and victory?
Actual sick and disabled guy here: I don’t agree. There still appears to be a lot of unrewarded suffering in the world and our culture can seem pretty cruel and callous toward the vulnerable, like, normatively. I’m kind of blown away by this notion that everyone is super sensitive to the suffering of strangers these days and that it’s become a real problem. Do you really think anyone is anxious to hear about my complex neurological disease? I would like to ask the people who think that weakness and suffering are everywhere rewarded: Do you reward it?
If anything, I think our screen-addled, instantly-gratifying, digitally-intoxicated culture actually makes people less sensitive and conscious of suffering in certain ways, contributing to a more casual cruelty. Far from rewarding weakness, people seem rather obsessed with power these days. And a very large portion of the sick and disabled seem inclined to hide their conditions and disorders from the world out of shame — or drop out of public life entirely — precisely because these things so obviously lack social appeal. And I think people vent about their conditions online precisely because they so clearly aren’t rewarded in the actual world. The kids are not alright seems more apt as a parental ethic than a description of our times.
Of course people’s natural goodwill can be taken advantage of by those who pathologically crave a certain kind of attention — we have names for this kind of thing — but the overwhelming reality faced by the average disabled person is that the world couldn’t care less. And many of the social and technological developments coming under the banner of “wokeness” — social media activism, online self-diagnosis, therapy culture or victimhood politics, “lived experience” discourse — have largely benefited the severely afflicted, from practical digital utilities to being able to connect online and advocate from home. After all, it’s not woke activists who want to cut social security and disability payments.
Most people don’t have some special diagnosis that medically explains their suffering, thank God. But not every problem in the world has to do with social media or our apparent “mental health crisis,” and not every kind of suffering-speak or “medicalization” has to do with some larger or deeper problem with the kids these days. I worry about losing our shared deference for deep suffering and our respect for the marginal experience if we can no longer distinguish between our general neurosis in the modern world and the actual people suffering from actual diseases and disabilities, often invisibly and without adequate medical care or social support. You would never know any such people even existed from the genre of media commentary I’m talking about here, and if you did hear something about online advocacy around chronic illness and invisible disability, well, it would likely be in a rather unflattering light.
Someone will read one of these pieces about how young people overstate their pain for attention and use their diagnoses to escape the burdens of adulthood, and will naturally come away more likely to dismiss complex illness and disability, and more likely to see any suffering they don’t understand as yet another example of how the kids are not alright.
The same arguments deployed for decades to dismiss my own illness at the institutional level — that it’s psychosomatic or psychogenic, a hysterical reaction, hypochondria squared, mass psychosis, social contagion — are now being used to dismiss another disease that is pathophysiologically similar to my own, Long COVID, an admittedly broad category that can include a grab bag of post-infection symptoms.
This essay in the British post-liberal magazine Unherd (originally published on Substack) about how ‘liberal society is making us ill’ exemplifies this denialist brand of cultural-medical commentary around emerging or complex disease. In the effort to say something about the importance of agency (pretty sure), the author launches their argument by asserting that Long COVID is “not a strictly physical phenomenon,” which is to say, not exactly a standard medical issue. “Given that Covid tends to affect men more than women, why would long Covid affect women more than men?” the piece asks, citing survey data. “And given that Covid complications are extremely rare in the young, why would teenage girls be disproportionately affected by long Covid? Finally, why would long Covid affect transgender people most? The answer lies in the fact that long Covid is not a strictly physical phenomenon.” [italics mine]
Almost none of that is true though, and false premises beget false conclusions. Long COVID turns out to be quite prevalent among young people and children, according to recent compelling data, with a large longitudinal study of thousands of kids and adolescents uncovering long-term complications in every organ system to help explain the ongoing school absentee crisis. Up to 5.8 million children in the U.S. have some form of Long COVID, a review in the American Academy of Pediatrics estimates. And this type of post-viral condition has been far more common in women for decades, because there are biological differences between the sexes that includes aspects of our immune response.
The author also misrepresents the fact that many people with symptoms of Long COVID didn’t initially have a positive COVID test, leaving aside that many of those cases date back to early in the pandemic before tests were widely used — and not having a positive test obviously doesn’t mean you never had COVID (especially considering how widespread it’s since become). “In fact, long Covid correlates about as much with mood disorders as with Covid itself,” the author ludicrously claims.
Summoning old-fashioned tropes about how diseases that more commonly affect women or some particular group or that are in any way associated with stress or mental illness somehow means the underlying disease is not primarily physical, the article weaponizes the same backwards psychosomatic logic that was once used to attribute cancer to emotional repression or Parkinson’s tremors to “the moralistic man’s suppressed desire to masturbate” or HIV/AIDS to gay-people-stress or birthing pains to women’s-completely-irrational-hysteria or asthma to mommy issues.
No disease is “strictly physical,” in the meaningless sense that all diseases can affect and be affected by our emotions. But the essay is really about how the pandemic led to an explosion of mass hysteria and fake illness and how everyone wants to be sick now online because it’s apparently super rewarding and satisfying, and has little to do with the nature of any particular affliction. “The tendency for people to misdiagnose their despair as a medical disorder can be observed far beyond reports of long Covid,” it reads. “Young people are reporting despair and distress at an unprecedented rate, and this mental health crisis is a symptom of a malfunctioning society — a society that is making people sick, by teaching them to feel sick.”
It really shouldn’t be this difficult to distinguish a cultural sickness or “mental health crisis” from the reality of a biological disease, yet the essay goes from there to discussing gender dysphoria and racial victimhood politics because, well, I guess it’s all the same to them. The idea, it seems, is always to cast doubt on any medical diagnosis or claim of suffering that has any margin of uncertainty or newness or weirdness or vagueness — or any suffering claim at all — guided by the conviction that the real problem is people making too much of their suffering rather than the suffering itself.
But valid claims of victimhood exist, and Long COVID is a strictly physical phenomenon, at least in the same sense as cancer: Unless you think mice can suffer from psychosomatic illness or therapy culture, you have to acknowledge this is a medical disorder and not an attitude problem or some generalized despair. COVID has now been linked to all sorts of long term health issues, from brain damage to autoimmune disorders and diabetes. There is in fact a lengthy historical precedent, going back at least to the Spanish Flu and the 1889-1890 pandemic, for a minority of the population to develop complex chronic symptoms following various infections, both in sporadic and epidemic form.
In my case it was mono (Epstein-Barr virus), but the same phenomenon can stem from COVID (in fact, these viruses have been linked). Pathogenic chronic illness exists and matters and has been overlooked for decades in medicine and society at an outrageous human and economic cost. Somewhere around 400 million people in the world report experiencing long term health complications from COVID, at the cost of around a trillion US dollars, and even if you cut that number in eighths, in sixteenths, it would still be an absurd amount of people whose suffering you can’t simply dismiss or psychologize.
Given the historical record of post-viral health issues, we can look at the apparent uptick in illness-related disability during the pandemic, and the more general visibility of diagnosis online, and say that either everyone is losing their minds on the internet — or maybe people are getting sick more from new and worse viruses that spread more easily in our globalized modern world.
Much of this has to do with the misconception that real suffering is always obvious. But there is actually no direct through-line between suffering and moral outrage, I’m afraid, and very often that interplay needs to be corrected by drawing specific attention to an otherwise neglected issue. On the other hand, it’s human to be skeptical of any suffering we don’t understand or that morally challenges us in any way, from racism to AIDS, and we will always be up against the tendency to blame the sufferer for their suffering to assuage ourselves of moral responsibility.
The emphasis on emotional vulnerability and therapeutic self-expression among the young can clearly go too far and overshadow the equally essential human value of resilience in the face of adversity. When last I was healthy, I studied mixed martial arts full time, trained very hard, all day, every day, worked as a stonemason for two years before that. I was very tough and strong. But none of that mattered when I got really sick. Life became more about working within limits and swallowing things I couldn’t change, how to forgo pride to ask for help, how to relate to others despite how different their problems may be, how not to hate those people, how to be okay with smallness and keep growing in smaller and humbler ways, how to routinely absorb almost unbelievably harsh experiences while resisting the urge to kill yourself or harm others or otherwise have some kind of breakdown, how to hold onto some piece of innocence and sanity through it all. Somewhere between limitation and possibility is reality and that’s the only place where anything can be resolved or changed.
Human beings, with our little gelatinous bodies, are more vulnerable than not, and whoever came up with the idea that what doesn’t kill you makes you stronger clearly never heard of Myalgic Encephalomyelitis. It’s a comforting belief we use to conceal the much more upsetting truth that ongoing suffering can almost literally make a person less human — obliterating any semblance of dignity. The golden rule that’s lost on self-help gurus and alt-media pundits is that it could always get worse, that it’s already worse than you could imagine.
The social critic Freddie deBoer offers an example of an otherwise careful writer whose fixation with online health and identity trends can end up conflating broad cultural pathologies that affect us all with specific pathologies of the body and brain. “People hate when I talk as though there are personal benefits to identifying with these disorders,” he writes, “but there plainly are, or diagnoses would not decorate so many Instagram bios, would not make it onto so many scholarship applications, appear in so many gauzy celebrity profiles.” Yet the idea that some people benefit from their seeming afflictions is almost always paired with skepticism toward the very existence of a whole spate of medically neglected diseases from which millions of people suffer. DeBoer ventures beyond cultural analysis into the realm of scientific truth claims.
He’s written that he doesn’t think Chronic Lyme disease literally exists, has called my own illness (ME/CFS) a ‘boutique diagnosis’ — falling into a long-held stereotype about how this horrifically crippling disease with almost no research funding and which most people have never heard of is somehow fashionable and desirable and cool, dubbed the “Yuppie Flu” in the 90s — and attributed Fibromyalgia, a condition of severe neuro-muscular pain, to everyday human tiredness. DeBoer has never seemed to mention Long COVID and only wrote about COVID fairly recently to say that people who are still concerned about getting sick are basically nutty weirdos. He has only ever brought up pathogenic chronic illness to argue that it’s probably bullshit and what we really need to talk about is the wave of mass hypochondria, Munchausen syndrome and psychosomatic illness in the digital age and how people can believe they’re sick when they’re not. There are precisely zero articles by deBoer on chronic illness or disability that don’t emphasize how people fake illnesses for clout or how modern disability activism is bad.
So I don’t think I’m being unfair to put deBoer in the skeptical camp here, and he seems all-around inclined to assume that anyone who claims to suffer from complex or ‘mysterious’ chronic illness is really just mentally unsound in some way. But not in a medical sense like deBoer’s Bipolar, which would actually involve diagnosis and treatment, just in the incredibly vague way that can be easily dismissed by randos. I simply cannot imagine anyone on the fence walking away from deBoer’s insanely skeptical review of New York Times columnist Ross Douthat’s memoir on Chronic Lyme with anything but greater skepticism toward the condition itself and all who claim to have it. Just like I can’t imagine anyone on the fence walking away from this outrageously one-sided piece in the Free Press (not by Freddie, but which favorably references him) about the young chronically ill or “spoonies” — derisively titled Hurts So Good — thinking anything other than people who claim to have invisible illnesses and disabilities are just attention-craving nut jobs who need to somehow both lighten and toughen up.
Naturally, deBoer will deny some or all of this or put it in different words. He will say that no individual should live under an unnecessary cloud of suspicion about their illness, and then will proceed to cast doubt on the existence of an entire illness and by proxy every single individual who has or claims to have it. And when I bring this up with him, he’ll say (and has said), ‘well, you just need to acknowledge people can believe they are sick when they aren’t.’
In deBoer’s words,
“I don’t know how we confront the spiraling number of people claiming to have illnesses for which there are no objective tests without being frank about the existence of hypochondria, Munchausen’s, and psychosomatic illness - particularly when people insist on deepening the social incentives by giving the sick more and more attention.”
I don’t know either (though if that number is truly “spiraling” go ahead and name five diagnoses that didn’t exist twenty years ago) but someone should probably tell Freddie that his own disease lacks objective and reliable testing, as well as many other undisputed conditions from appendicitis to every mental illness. There can be reasonable disagreements about the nature of a given affliction, but why is mine the only disease in the world that’s normal to regard as an attitude problem that I could simply snap out of?
Of course human beings can wrongly believe they’re sick. And of course that can include conditions like mine which, unfortunately for the people who actually have them, are harder to identify and treat. But the overarching reality here is that most people don’t want to be sick and disabled for the rest of their lives. Most people seem to want to do and be things and actually invest quite a lot into how much they do and are. Most people seem to have a very hard time sitting still and doing nothing!
It really comes down to a conflict of visions over human psychology and how we differently view the general public: are we all potential excuse-makers and malingerers, ever on the prowl for handouts and sympathy? Or are we mostly sound and normally neurotic people who generally want to be productive and participate in society and are trying to do what makes sense in our self-interest while maintaining some semblance of pride? I don’t know if you’ve noticed but the modern world seems to place a great deal of value on not being a total loser, and I’m sorry to report that disabled people are not somehow exempt from those insecurities and may well be more prone to them for obvious reasons!
There is a long-held and incredibly harmful tendency in modern medicine to psychologize anything it can’t yet fully explain or see, such as the decades-spanning belief that Multiple Sclerosis was a form of hysteria-induced paralysis or conversion disorder, and later, that it only occurred in men, because women were routinely disbelieved. That was until scientific advances in medical technology and brain imaging identified lesions and other abnormalities in MS patients to legitimize the diagnosis. We now know the disease is much more common in women. The problem is not psychology but its incursion into areas it doesn’t belong. It’s a fallacy to presume the entire global and historical phenomenon of post-infection chronic illness doesn’t physically exist simply because it’s difficult to assess. If anything, the lack of treatment and testing should place upon us a special responsibility to handle the issue with tremendous care.
Not every medical issue or disease has been uncovered or resolved, medicine isn’t free of the blindspots and incentives of the larger society, and medical personnel are as biased and egocentric as people in any other profession — perhaps more so because of the moral authority we invest in them. Medicine isn’t just a science; it’s an applied science, in which all sorts of preventable human blunders can potentially ensue. That’s why I’m in favor of bringing the patient experience to bear in medical settings — which is really the ground truth of medicine, the whole point really — to correct the interplay between suffering and medical support that in many cases has been interrupted by institutional inertia and backwards attitudes. If the customer is always right, the patient is right at least some of the time. And usually when people think they’re sick, it’s because they are.
I simply want people to know that diseases like mine exist and suck so that they’ll be better understood and treated in medicine and society, and I have a very hard time seeing the scientific or ethical value of the opposite position. Not to be too cheeky but the people who think all these illnesses are made up should really get themselves checked out.
The human tendency to turn away from any un-relatable suffering reflects a deeper blindspot in media and culture around any sort of marginal or unseen medical condition. These diseases are barely ever covered, and when they are, coverage is often skeptical. Why do journalists, especially, feel so comfortable dismissing entire kinds and clusters of disease when the biological evidence for their existence is absolutely overwhelming? Unherd has published numerous articles casting doubt on the reality, severity and scope of Long COVID — which exists, matters and has precedent – with titles like, “Has Long Covid Been Exaggerated,” “Do Two Million Brits Really Have Long Covid,” “Weaponising Long Covid Damaged Public Trust” and “Does Long Covid Really Exist?” (though they did publish a great piece on my own disease, kudos) And it’s seemingly because they were against the lockdowns and mandates of 2020 — something about government overreach and tyranny — and an entire media apparatus has subsequently formed around downplaying the effects of the virus.
But there haven’t been any major lockdowns or mandates in nearly half a decade, the consensus against protective measures holds across the political aisle, and now governments are literally banning masks in some places (What was that about government tyranny?) — highlighted by a recent incident where a cancer patient was heckled on the street and spit on for wearing a medical mask. The tide has clearly shifted, falling into a very common historical cycle of panic-and-neglect around infectious disease where people initially freak out and then will do anything not to think about it anymore, even if the threat remains. And those hurt most by this will naturally be the most vulnerable, the sick, old and disabled.
When the pandemic is over, and for many of us it simply isn’t, there is going to be a real accounting of the damage, not just of the millions dead but the many millions more who developed long term complications from repeated COVID infection, and I bet the story is not going to be that the pandemic turned everyone into a crazed hypochondriac or gave way to some generalized social anxiety disorder. It’s the virus, stupid. As a recent paper on the ongoing threat of Long COVID summarized, “The narrative that we’re back to normal… is not based in reality.” It’s the collective forgetting and moving on that’s truly insane.
The pandemic inflamed the culture war. There was the rise of therapeutic liberalism in the 2010s and now we’re seeing the ascendance of the opposite tendency, much of which has come in reaction to early Covid policies and online youth and mental health cultures. The fact that Donald Trump is President of the United States, again, should tell you something about where we’re at. Very normal seeming people seem to hold rather extreme views these days, and the unhinged insanity of the average citizen is being daily exposed on social media. It’s deeper than the kids these days. The normies are not alright.
Perhaps we are losing our shared sense of what’s normal in human life. Perhaps the tendency to normalize pathological things, or pathologize normal things, both stem from the fact that the norm itself has become pathological in certain ways. Is it really that young people today are suffering less and complaining more, or is it that they are just suffering in different ways? Is it that people are making too much of their suffering, or are we just seeing more of it now online?
Perhaps some of this has to do with how weird we are about suffering in the modern world, the games we play around it and the meaning we try to make or avoid making of it. Have you noticed that, whether left or right, the majority is kind of obsessed with defining the marginal experience — with using the suffering of various minorities to gain moral and political power? Perhaps there is something everyday people want or need from suffering, and perhaps we are not wrong to want the meaning of suffering. Perhaps we need an outlook that can use our collective and individual suffering for the good of all, that can say “your suffering matters” but “other people have it worse” and allow those truths to coexist.
For a culture that cannot sit with death and vulnerability and disability is not a healthy or good one, but a sick one. And a world that can stand to face the deepest forms of suffering is a much healthier and, in a way, more beautiful one. There may be nothing more human than to make meaning of suffering.
At present, few of us are anxious to hear a story of disability or illness that doesn’t have some kind of uplifting spin, that’s just bathed and baked in the pathos that I dare say most severely disabled people feel a good deal of the time. This toxic positivity is part of why people don’t know more about my disease: because it simply sucks and only sucks and people don’t generally like to hear about things that simply and only suck, even if more awareness could make it suck less. For every inspiring story of disability, there are thousands more who languished in obscurity or worse and would love nothing more than to be average and okay.
Disabled people offer an unwanted reminder of how vulnerable we all really are and how little control we have over our own lives and bodies. And those who get so upset when they find some weird “disability is cool” thing online seem to have no problem at all with the much more common and casual cruelty that sees handicapped people as burdens and deviants and where it’s okay to let the weak suffer and die.
There’s absolutely been a generational shift, where the kids just a few years younger than me had a completely different cultural experience, and I don’t entirely disagree with the people I’m criticizing here that social media is kind of ruining everything. I’m profoundly disturbed by TikTok culture and the cutting down of human attention, the migration to digital and the way it detaches us from real life and other people and our own bodies and souls, and the general numbness and nihilism and narcissism that’s everywhere present. People need connection and community and direction that they are clearly not getting online, and that void is felt across generations.
In this overcomplicated, disconnected and fast-moving world, where people destroy each other less through outright malice than cold and calculated indifference, what we need is a balanced message that asks us to look both within and without, to examine and come to terms with yourself and your life and your flaws and strengths while at the same time recognizing your responsibility to the world and other people; to understand that all those other selves out there, which can seem so strange and hostile and frightening, that those people are you; to recognize that what’s happening inside you is also happening out there, too, and to deal with that somehow. What I’m really talking about is a kind of love, grounded in our shared loneliness.
But having a permanent, disabling and largely invisible disease that medicine cannot yet treat and which most people know nothing about is not a normal part of growing up or being human. I sincerely hope the journalists who casually dismiss this entire spectrum of illness — as though it were tantamount to UFO sightings — never know what it feels like to be this vulnerable. It doesn’t hurt so good. It hurts really badly, constantly, and forever. It’s not a rite of passage; it’s a human tragedy and it’s my nightmare. And if I vent about the pain, I’m apparently complaining and victimizing myself. If I try to publicly cope with it in any way, I’m accused of glorifying and glamorizing it. And if I conceal it, my suffering will never be seen or helped and I will only suffer the more for it.
Sometimes, we need to hear that bellow from the deep to remind ourselves that we’re still part of this world. And you don’t have to understand or help people like me, but for love of God please stop using us as fodder to bitch about the kids these days.
Hi Sam,
thanks so much for letting us know how you are doing. I have only just skimmed this piece. I always like to create some good space to absorb your words. But I wanted to at least send you a little message of love and appreciation. And, one question: What impact do you think RFK, Jr and his approach to questioning what we think we know about health science will/could have on the lives of those who are suffering invisibly, such as yourself? xoxo