We Can't Constructively Address Online Mental Health Culture Without Acknowledging That Some People Think They Have Disorders They Don't
they're hurting, just in different ways
I was not, at first glance, inspired with confidence by this Washington Post piece on online mental illness culture. The piece has a header image of a “mental illness influencer” lounging in bed, taking a selfie. I’m someone who’s committed to de-glamorizing mental illness, and I’ve been begging people to stop romanticizing pathology for a long time. I suppose there's an implied critique in that photograph, but it's not ideal.
On substance, Tatum Hunter’s piece fails the way so many others have failed in this milieu: it studiously avoids the possibility that some people who talk about their mental illnesses online don’t really have them. I’m not specifically talking about simple fraud and lies, which I suspect are rare, but rather the weird combination of hypochondria, Munchausen’s syndrome, and social contagion that we see all around us in these spaces. Spend any time at all in these communities on Tumblr or Tik Tok and you will find many people, most of them young, who are using mental illness as a means to self-define, to differentiate themselves from the hordes of other people they see online who are just like them. I’ve written again and again about why it’s a bad idea to want to be your mental illness, and it’s even worse to want to be mentally ill, period - not just bad for other people, but bad for you. But there are people who have become influencers and garnered hundreds of thousands of followers on their apps of choice by performing mental illness. People use their disorders to chase clout. That’s just reality.
Hunter considers the problems of misdiagnosis, of self-diagnosis, of people undertaking mental health care on the advice of internet randoms rather than under the care of a doctor, but nowhere does she seriously consider the possibility that the basic problem for many people is that they believe they have mental disorders they don’t in fact have. I think doing so is seen, at this point, as a kind of identity crime, and thus unlikely to be found in the Washington Post.
But hypochondria exists. Munchausen’s syndrome exists. Psychosomatic illness exists. I can get people to admit to those realities in the abstract, now, but they stay entirely in the abstract - to suggest that any group of people is suffering under those conditions, rather than under authentic mental illness, is treated as a sin. This was my biggest disappointment with Ross Douthat’s book on his chronic illness, which I quite liked overall; Douthat never stops his narrative to ask whether any of the people who believe themselves to be sick from chronic illness actually aren’t. (Surely he himself suffered, but because of the woo and mysticism found in that space, an accounting was necessary.) And 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.
Even for the authentically ill, online culture is fraught. The meta-problem with pieces like that in WaPo, obviously, is that by giving certain members of this community the glamour shot treatment (literally in this case), they’re creating direct incentive for people to make illness their identity -and to not get better. Young people understand the allure of being seen; they don’t yet understand the horror of being frozen in other people’s gazes. They don’t understand the costs of being defined. There have been many opportunities for me to make myself the mental illness guy, certainly including financial opportunities. Perhaps I've already fallen into that trap, despite my efforts to remain a generalist. But I’ve fought to avoid that because I know just how painful and limiting self-definition can become. I’m sorry to pull wizened old guy here, but young people don’t understand. They don’t understand that pinning yourself down that way can produce a kind of horror.
I'm sure many people are learning they have legitimate disorders by investigating on the internet in these communities and then finding a doctor who can provide an appropriately rigorous diagnostic process. I'm sure many are searching for something to call their pain and, thanks to the confusion and blind alleys of self-diagnosis, called their mental disorder by a wrong name. And I'm sure many do not suffer from mental illness but rather from the mundane pain and indignity of being alive, but feel that they might master their pain by making it, and in so doing get some attention in communities that reward diagnosis.
Here’s why this is an anguished issue, for me as well as in general: just because there are social contagion effects when it comes to behavioral health does not mean that any individual person has been misdiagnosed. Of course not. The fact that we acknowledge that some people are deluding themselves about their mental health does not mean that any individual should live under a cloud of suspicion. I don’t want anyone to face undue scrutiny or inappropriate skepticism about their mental health. I do want everyone to face appropriate skepticism, a rigorous diagnostic process that can result in being told no, in fact, you don’t have dissociative identity disorder, no, you aren’t borderline, no, you don’t have Tourette’s. And this is what makes diagnosis-by-internet and crowdsourced treatment such a bad idea: the internet will only ever tell you what you want to hear. TikTok is not going to tell you that you have Munchausen’s syndrome or that not every aspect of your personality is evidence of pathology. A totally permissive mental health culture, one without an at-times adversarial process, is a dangerous culture that will cause real harm to real people. How we navigate the explosion of people who claim to have mental illness or chronic illness in a way that demands compassion while recognizing the plain reality of psychosomatic illness is not clear.
What I can tell you for a fact is that society cannot possibly give special accommodation to everyone. This, more than anything else, is the project of social justice in 2022: the demand that more and more people be treated with special dispensations that in some way exempt them from the more unpleasant aspects of modern life. If you’re Black, you deserve special dispensation; if you’re a woman, you deserve special dispensation; if you’re gay, you deserve special dispensation; if you’re trans, you deserve special dispensation; if you’re neurodivergent, you deserve special dispensation; if you’re suffering from chronic illness, you deserve special dispensation. And in general I agree with all of that. But the actual expression of what special dispensation means is everything. The Americans with Disabilities Act standard is one of the most elegant and useful in law - that we should extend every reasonable accommodation, but not every conceivable accommodation, to those with disabilities. This is why we have elevator and ramp rules in public buildings but no legal demand that blind people be able to become pilots, because the former is reasonable and the latter is not. But what happens when the demand for accommodations expands beyond just those with disabilities and comes to encompass those with all manner of other identity categories? And what happens when demands overlap and compete?
I think it leads to the rock-paper-scissors reality of contemporary identity norms. Inevitably, competing claims to special dispensation overlap in our discursive spaces, and people engage in a complicated algebra about whose needs trump whose. There is some shared sense of who deserves deference most, but as the number of identity categories multiplies and their various demands of special dispensation become more and more complex, the inevitable outcome will be anger and recrimination. But surely engaging in that brutal combat is preferable to not being a participant at all, for many, which I’m convinced is part of why so many people are now discovering disabilities and claiming them as identity.
When you make being sick a way to be special, you ensure that some people are going to want to be sick, to talk themselves into being sick, even to fake it when they know they aren’t. That has obvious socially-undesirable outcomes, and they fall most heavily on the medical system and those who rely on it. But more, we just don’t know how society functions when the number of people who claim some form of special accommodation approaches 100%. What do we do with all of these demands for special accommodation, which must surely, eventually come into conflict with each other? And how can special accommodation continue to mean anything when special becomes the default? I don’t know the answer to those questions, and I don’t think anyone else does either.
You can't have appropriate skepticism without gatekeeping, and you can't have gatekeeping without gatekeepers. In the case of health, it is natural to think the gatekeepers would be health experts. It would then follow that the health experts are likely to be doctors, people with a medical background, and people with a background in public health. In other words, the medical establishment.
Personally speaking, I have *negative* trust in the medical establishment of this country to gatekeep effectively; that is, I trust them less than I would a random, reasonable observer off the street. That is, I regard the medical establishment as actively detrimental to solving the issue of appropriate skepticism. There are lots of motives for this, and people on my side (the Right) often alight on the profit motive. That's part of it. But I think by far the greatest motive is simply that of not wanting to offer undue skepticism, of not wanting to question people, of trusting lived experience, of simply not rocking the boat. Basically, of being nice and compassionate. (Laudable things! In their place.)
Admittedly this manifests itself more in simple non-diagnosis and non-confrontation than it does fraudulent diagnosis. But in my view this is still a massive problem. Gatekeeping only works if it's proactive. We discourage drunk-driving before the crash, not after. But our medical establishment doesn't do this. It should be shouting from the rooftops that the glamourized self-diagnoses people give themselves are probably wrong and really damaging and you don't want them anyway. But they don't. The biggest indicator of this, for me, was so-called "long COVID", which they continue to treat with kid gloves long past the point that it should have been written off as a useful concept.
A common sense approach, rather than the expert-led approach that we live under, would surmise that people who have a hashtag "illness" with no ill effects but plenty of rewards within their subculture are probably just malingering attention-seekers, but the oversocialized can't and won't think that or say it, and are guided by their compassion to indulge it instead. So, here we are.
We can see exactly how society functions in this milieu by looking at long COVID and other examples that we needn't go into.
I really like that you are addressing this issue. What I think is not 100% complete in your analysis is that "the glamour shot treatment" where we e.g encourage those who've suffered to share their story and pat them on the back is not fully negative - it's a tradeoff. I think you've done a good job describing the downsides, especially given most are not willing or able to do so. But I still think there is an upside. Let's say someone suffers from autism and really has a tough time all through high school, but still manages to graduate. Is it bad if that person were to speak at commencement about their experience and the audience applauds? I think there are pros and cons. Stories of perseverance can be inspiring, and I don't believe the reaction of most people would be to say, "hey, I wish I could get that applause too, maybe I'll lean into talking more about my bouts of mild depression" - but some might. I think the reaction of most would be to be happy for the individual who persevered, and count their blessings.