Disease, Disability and deBoer (Part One)

Against universalizing the particulars.

This is the first in a two-part polemic on disability, chronic illness, and the writer Freddie deBoer. This part takes a critical look at his general views on suffering and disease in modern life, while the next deals specifically with his take on conditions like mine and what I think he’s missing.

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“​​I’m not one who struggles to just keep going, as so many people do,” writes the author and popular Substacker Freddie deBoer, “but I come closest when I think of this: that there are gentle people to whom the world is not gentle… 

It makes me want to sprinkle magic powder into the water and walk foot by foot on a gelatinous sea, gingerly moving across its undulating face in search of a place where no open heart is ever met with the sandpaper touch of human unkindness.

A notable critic of a certain strain of modern liberal culture and politics over the years, deBoer has been admirably open in his writing about his own struggles with mental illness (having lived with Bipolar 1 for much of his life). I find his capacity for vulnerability and self-honesty to be deeply affecting in a culture that tends to either ignore or punish vulnerability or leverage it for some kind of gain.

Which is why it genuinely pains me when he has written about an issue that hits home. My real beef with deBoer has to do with the illness I happen to suffer from, a complex and degenerative neuro-immune disease/disability known as ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) that has shaped my life for more than a decade: He just doesn’t appear to think such diseases even exist (or at the very least, has been openly doubtful). What it really comes down to is a skeptical review deBoer wrote back in 2021 of New York Times columnist Ross Douthat’s memoir on chronic Lyme disease, broadly considered in the same boat as my illness (which sprung from the Epstein-Barr virus), as well as some other things he’s written and said about disability and disease.

While I nod along with much of deBoer’s take on the excesses and contradictions of modern life and culture, I can’t help but feel that he is being unfair about this particular issue in ways that point to certain tensions in his thinking: Insisting that mental illness is under-medicalized and under-treated, for instance, while also waging against the over-medicalization and over-diagnosis of what is simply everyday human suffering, or his skewering of our medical system along certain issues next to his defense of it when it comes to diseases like mine (these are tensions, not necessarily contradictions). While deBoer has taken a lot of unfair criticism for his work, I hope the following isn’t that.

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To put my cards on the table, I’ve had this illness (ME/CFS) for almost a dozen years after a viral infection as a teenager, I’ve done everything to recover over the years while watching my health deteriorate to new depths, and my experience seeking help in medicine and society has been, well, simply unbelievable. I can’t explain what it’s like to reach out for help again and again and only ever get the backhand from the world, the kind of faithlessness that breeds. This disease has objectively destroyed my life and I’m only at the moderate end of the spectrum. There is honestly so much suffering in this patient group it’s actually mind-boggling – ME/CFS Twitter is just full of people considering or actually doing euthanasia, suicide being extremely common with this illness – and the disease is already so unheard of that I was a bit amazed anyone would spend time and energy arguing against its very existence. The highest purpose my life could have at this point is bringing more attention and resources to this evil and poorly understood disease.

ME/CFS is a condition of deep and abiding exhaustion and malaise that gets worse with exertion and doesn’t improve over time, most often spurred by some kind of infection, with a tangle of other intense neurological and immune related symptoms that affect multiple systems in ways that are hard to recognize from the outside, with no cure, approved treatment or reliable testing as of yet (though a potential blood test was recently discovered). Experience has informed my position that infection-related chronic diseases like ME/CFS, chronic Lyme and Long Covid, for example, are primarily bodily conditions and not psychological in cause or cure: Some untold portion of people who acquire certain infections develop severe long term complications from them of a very distinct symptom profile and many never recover or just keep getting worse. There are a number of studies showing biomedical irregularities among people with this illness, and the symptoms are actually pretty well mapped out, while many continue to argue that such diseases are completely fabricated or otherwise psychologically induced.

While there is still some disagreement in this patient community over the nature of these diseases, everyone who has a disease like this believes it is a condition of the body and not of the mind, which should probably tell you something. For another source, consider the science journalist Ed Yong’s pieces on Long Covid and ME/CFS in The Atlantic and the New York Times, which offer a good primer for the uninitiated. These are severe and debilitating conditions that don’t get the attention and concern they require in medicine and society for reasons we’ll get into, and I don’t think skeptics acknowledge the moral cost of being wrong about this.

Suffering, Disability and Disease.

Despite where I’m coming from, I can relate to much of what deBoer writes and says about the wrong ways we make sense of illness, disability and suffering today, especially online, as we’ve sort of transposed the identity framework around race and gender onto other sorts of issues that are not basically or entirely social. His argument is simply that illness and disorder and disease and disability, whatever their cause or strain, are absolutely not cool or sexy and should primarily be handled medically, and the tendency among young people to romanticize and reinforce their conditions online and seek out communities of disability and disorder in avoidance of actual treatment is deeply harmful and symptomatic of a sick culture that has lost touch with reality in the digital age.

In other words, a lot of people actually want to be sick today, mentally ill, disabled, want to suffer in some way, at least in the abstract, because of the potential social rewards that come with it and the sense of purpose it gives off — out of a need for meaning in a secular world and a desire for specialness in a vast sea of other people. This is bad for everyone, deBoer contends, for the younger crowd who embrace these trends and are deterred from wellbeing, for the more severely sick and disabled who get sidelined by all the clatter, and for society itself that will come to doubt genuine claims of illness and disability or otherwise descend into a kind of omni-victimhood hellscape where these things cease to have any particular meaning.

While deBoer acknowledges that, very often, people who are suffering in unpreventable ways will come to identify with their pain as a way of coping — to psychologically turn bad things into good things — his problem is the imposition of the attitude that disability and mental illness are good things onto everyone else, invariably pushing the more extreme cases to the fringes. Undergirding deBoer’s argument is a tragic vision of human life which accepts that some things are just bad — that life is unfair and that should be our motivation to change things — instead of seeking meaning and identity and status in disability and disease and those things which ostensibly hurt us.

The Gentrification of Disability.

In response to a New York Times Magazine piece by Daniel Bergner on Schizophrenia and the Hearing Voices Movement back in 2022 – a piece which basically argued that people experiencing psychosis don’t necessarily need medication or hospitalization and should even consider listening to the voices – deBoer published an emotional video venting his frustration over how dangerous and damaging this kind of thing is. Through tears, he relates some of his own experiences with his disorder, how he once got it in his head during a psychotic episode that an ex-girlfriend of his was trying to sabotage him and the horrible realization that he could’ve murdered her if she had been anywhere nearby. He talks about the terrible physical symptoms that come with the psychiatric medications he has to take to keep his condition under control, and ultimately he’s sick of being told to love and accept his illness, which has caused him so much unnecessary pain and which he would do anything to be without. 

deBoer’s position clearly stems from genuine concern and empathy for people suffering from severe mental illness, including people who have committed or may commit horrible acts under the spell of their condition. His general take on mental illness is that it does not excuse but explains certain behavior, and therefore does not exonerate but mitigates responsibility. He is someone whose life was saved by involuntary commitment to a psychiatric facility and medication, so the idea that people undergoing serious mental health crises should never be hospitalized or medicated obviously bothers him. But more broadly, it gives the false impression that mental illness is over-treated and over-medicated in American healthcare, when the reality is quite the opposite: 60% of American counties are without a prescribing psychiatrist, as deBoer elsewhere relates.

The moral weight of his argument is that, somewhere in America, some activist-psychologist is going to tell a severely psychotic person that all they need to do is be their authentic selves instead of addressing their condition, and then they’re going to go out and murder someone and multiple lives will be destroyed because our culture can’t come to terms with the fact that bad things are bad.

“What I hate, I hate, I hate about modern liberal culture is, everything is not good! Some things in life are just bad! And they’re not chosen and you can’t change them and they suck so we deal with them. But they’re just bad and they don’t need to be ‘bright-sided’ all the time. My Bipolar Disorder is the worst thing about me. I would give anything I have to not be this way. And I’m sick of fucking reading these pieces.” 

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Elaborating on these themes, deBoer published an essay in his newsletter called “The Gentrification of Disability,” about how disability activism gets co-opted by the least disabled in a way that neglects or outright harms the most afflicted. The piece refers to an academic panel at Harvard on Autism that was canceled because it was considered “ableist” to think of autism as an illness to be treated and cured rather than a unique and interesting state of being to honor.

“This is, I think, nonsensical,” deBoer writes. “It asserts that autism is a disability, a dis-ability, but also that it’s not an illness, a disease, or inherently negative. But the very concept of disability depends on the notion that disabilities are inherently negative. If they are not in some sense disabling, the term has no meaning. What’s more, the entire moral and legal logic that underpins the concept of reasonable accommodation - the affordances we make for people with disabilities, mandated by the Americans with Disabilities Act - depends on the idea that these things are both unchosen and harmful. If they’re not, then there’s no communal obligation to accommodate them. What would they even need accommodation for?”

At the very least, we need to hear both sides of the issue. As deBoer writes of the Daniel Bergner Times essay, “the trouble with normalizing illness is that it inevitably cedes control of our narrative about illness to normal people. Do schizophrenics sleep under bridges in Bergner’s world? I don’t know; none are interviewed in his New York Times Magazine piece, chiefly because schizophrenics who sleep under bridges don’t have the wherewithal to speak to the New York Times.” He maintains a sense of compassion for people suffering from various conditions while warning against the tendency to make these things central to who we are, which inevitably orients us away from treatment and toward vague notions of justice and redemption.

The Medicalization of Human Suffering.

In another piece, “Prologue to an Anti-Therapeutic, Anti-Affirmation Movement,” deBoer goes deeper into his criticism of contemporary mental health culture and how certain trends around therapy and affirmation ultimately make people less well. The piece contrasts the therapeutic mentality – that things should be better than they are and there’s some compelling emotional or moral reason why they aren’t – to an anti-fragile mindset grounded in the acceptance that life is unfair, which he says is the answer undergirding all others. He writes about the value of coolness and toughness. “Once upon a time, there was strong social value in being ‘cool,’ with the concept of cool referring to a studied indifference to the vagaries of fate; turning away from the pursuit of cool to defining ourselves according to our weaknesses and neuroses was a profound mistake, cool was a humane and correct social value, and we should return to it.”

I would never respond to someone telling me that they’re in pain by saying that I don’t care… But if you care for people you try to walk them towards self-reliance, dignity, and toughness. Not from a lack of compassion, but precisely out of compassion. What compassion calls for is not pop therapy or affirmation but the extension of adult respect, helping people to endure a tragic earth. What’s required in the days ahead is for all of us to be a little harder on ourselves...”

From my vantage, modern people seem plenty hard on themselves, neurotically so, though I could certainly be projecting or overgeneralizing. While I appreciate the value of toughness and coolness, these things have honestly not helped me much in my struggle with chronic illness and disability and at times have actively hurt me, and I think people put too much weight into them anyways. Whatever abstract desire to suffer exists online, and whatever unhealthy trends exist among young people or the intelligentsia, it still seems that most people would prefer not to suffer and most people want to be cool and tough and are deeply afraid of being openly vulnerable with each other. I actually think a lot of the politicized vulnerability and weaponized victimhood stems from an avoidance of genuine vulnerability and an inability to face real suffering, not a lack of toughness or coolness.

It’s perfectly kosher to embrace principles of anti-fragility and live your life that way, but, like deBoer says of its opposite, the problem is when it’s projected onto everyone else. Tough love is cold comfort to the person who is truly suffering, and in my admittedly limited experience these arguments tend to arise more from a reactive place of judgement and annoyance than deep compassion. At least one of the reasons we have seen a surge in therapeutic trauma-talk over the last few decades is because, frankly, it’s better and often truer than the silent toughness and coolness that came before it, though you can certainly argue it’s an over-correction. The reality is that things happen to us – traumas, let’s say – and they affect us for much our lives, and at the same time there are things that hurt us that don’t have to do with some external injustice: we should be able to hold both of these in our mind, always.

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A large part of deBoer’s argument is pushing back against the medicalization of human suffering, the idea that you need some special diagnosis in order to receive care and support, along with the sort of hierarchy of suffering that emerges around issues of identity. As he relates in his conversation with the journalist Bari Weiss on her podcast, “What I would really love to achieve is a society where people didn’t feel like they had to medicalize their pain in order for it to be taken seriously as pain… You don’t have to tell me you have Fibromyalgia. You can just say you’re tired and I’ll have sympathy with you as a tired person.”

Well, unless you actually do have Fibromyalgia, which is defined as radiating bodily pain and not mere tiredness, in which case I don’t think deBoer’s sympathy for you as a tired person is going to land particularly well. While everyone suffers in life at different times and in various ways, there are clearly situations we can identify as being unusually bad, both unusual and bad, that would be technically and morally wrong to treat like your everyday thing. It’s not about de-medicalizing suffering so much as understanding what kinds of suffering are indeed medical issues requiring intervention and which are more universal human struggles we all go through.

Many things get pathologized in our culture that are not inherently pathological, like feeling sad or afraid, and many things get normalized that are not or should not be normal, like various mental illnesses, and it’s a moral and medical mistake to equate the larger human and cultural condition with specific instances of illness and disability. There has to be a way to balance out human universals and individual particulars without universalizing away the particulars or particularizing down the universals. 

It’s not obvious that we can avoid creating a hierarchy of suffering, either, and interestingly, it's something that seems built into deBoer’s argument about the gentrification of disability — with much of its power coming from the affect of contrasting those who are more severely sick and disabled against those who are less so. The fact is, some people suffer more than others for no morally justifiable reason, people put a great deal of weight into how much they suffer and how strong they are in comparison to others, and the question of suffering and the inequality of human suffering is at the core of pretty much all political and moral questions. What people call “wokeness,” I think, is really an unstated attempt, however noble or ignoble, to morally make sense of the world’s suffering, though I don’t think it’s universal enough to succeed and gets caught in the weeds on the particulars.

What’s needed and what’s missing, I think, is a balanced vision of human suffering that can use the specialness and differentness of a given situation to speak to our underlying and overarching human sameness, to achieve something universal through the particulars. There is a lot about my struggle with chronic illness and disability that I think pertains to all human beings, and I think understanding the nature of these conditions will be better for all human beings (for what it’s worth, I think deBoer does this quite well with his writing on his mental illness).

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In synthesis of his views on disability and mental illness, deBoer wrote out a list of principles in his “Seventeen Theses on Disability,” many of which were quite fair and reasonable – disability is not an identity, it’s negative by definition, the goal should be to treat them, etc. – while others were less intuitive or just kind of upsetting. deBoer is a critic of the idea that lived experience grants you deeper knowledge of an issue, though as I’m sure he’d be willing to admit, he is not severely disabled — in fact, he’s probably the most productive writer on the internet — which shouldn’t stop him from talking about these things but it does show through in certain ways.

This thesis, for example, I found genuinely confusing: “The urge to seek identity in disability does not stem from the actual disabling elements of any given disability but from broader dissatisfaction with one’s life and with the modern condition. People do not seek to be identified as disabled because they are hurt by their disorders but because they are otherwise lacking in fulfillment and confidence.” So anyone who seeks out the label of “disabled” has some broader dissatisfaction or deeper personality flaw? Why wouldn’t the inherent challenges and difficulties of the disability or illness itself, which deBoer is keen to elsewhere observe, have something to do with the urge to identify with and make sense of the experience?

Anyone struck by a disability or long term illness is inevitably going to struggle to some extent with identity and meaning, in my view, since we put a lot of ourselves into the things we do and disability means less doing of things. Of course disability is a very broad category encompassing everything from dyslexia to quadriplegia, and people cope with adversity differently for all sorts of reasons having to do with their own biology and psychology and personal history and circumstances. But I don’t think it’s much of a stretch to say that disability is something to cope with and cannot easily be untethered from our sense of self and purpose.

It was thesis number eleven that genuinely bothered me: “The endless proliferation of disabilities through boutique diagnoses such as ‘ME-CFS’ and ‘chronic Lyme’ stem fundamentally from market need - there is a market desire for additional disabilities to create identity and meaning, and so the medical community is creating additional disabilities.”

For one, “endless proliferation” should probably entail more than just two conditions which are not even new. That same medical community that is allegedly inventing new disabilities and diseases to meet the demand for meaning and identity has for decades been resistant to acknowledging these sorts of conditions and it was only fairly recently, largely thanks to patient-advocacy and the internet, that they are beginning to be taken more seriously. There’s no obvious reason why overworked doctors or for-profit insurance companies would want to come up with more diseases to treat and cover, especially ones that eclipse standard medical practice and require individualized approaches. The only market desire this is responding to, by my lights, is from people who have long suffered from these diseases and rightly demand recognition and treatment, not some amorphous vacuum of meaning and identity that everyone in modern life to some extent feels.

Thesis number fourteen reads: “Stigma is not among the top one hundred problems of the average severely disabled person.” Well, speak for yourself. As a comment under the piece from a reader/disability lawyer sums up, the current disability system in America is inherently adversarial and there’s very little cultural and political incentive to grapple with disability itself, making deBoer’s position seem out of touch and a bit of a hobby-horse.

There's no empathy for why someone with a disability might struggle with the bureaucracy or getting medical care. There's no benefit of the doubt if someone can't prove that their mental illness predated their substance use. There's no common sense applied to those ridiculous standards about lifting 50 pounds. There's no ATTEMPT to understand disabilities at all. And this is the result of stigma and the belief that disabled people should be out of sight, out of mind, and put through rigorous and demeaning verification processes for having the audacity to ask for benefits at all.

Of ME/CFS, the commenter says her clients with these conditions live in such pitiful ways that there’s no question whether they are doing it to be cool. This accords with my own experience making a disability claim through the Social Security Administration (fourth try will be the charm, hopefully), the process of which really does encourage you to sell yourself as a victim and makes you feel guilty for even existing. While it’s important to me that my society acknowledge that I am, in fact, disabled and not just idling, no amount of monetary compensation or moral support is ever going to make my illness a good thing. I can’t imagine anyone with a condition like this saying otherwise.

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The next and last portion of this essay will be published in the coming weeks. As always, thanks for reading and I hope you took something from this.