Disease, Disability, and deBoer (Part Two)
On chronic Lyme, Ross Douthat and psychosomatic bullshit.
This is the second in a two-part essay on disability, chronic illness and the writer Freddie deBoer. The first applied a critical lens to deBoer’s views on disease and suffering in modern life and this portion contends with his review of Ross Douthat’s memoir on chronic Lyme and the broader argument over the nature of such diseases.
What originally moved me to write this piece was Freddie deBoer’s skeptical review of New York Times columnist Ross Douthat’s memoir on chronic Lyme disease, The Deep Places, from a few years back. It caught me off guard to find the same skepticism and disbelief I’ve encountered countless times in my life toward diseases like mine from an otherwise careful and sensitive writer, and it stuck with me. I should probably say at the outset that I haven’t been diagnosed with chronic Lyme, nor am I necessarily defending Douthat or his book, rather my vantage is that of ME/CFS and post-infection chronic illnesses more broadly and their implications for medicine and society.
Ostensibly his essay is a critical assessment of Douthat’s memoir and chronic Lyme, but more deeply it has to do with the broader trends over which deBoer is concerned — of people forming communities of disability and disorder online and how this complicates our sense of public health. Early on, deBoer summarizes Douthat’s plight and the basis of his memoir, how he began to to suffer mysterious and debilitating symptoms after getting infected with Lyme and how the doctors he saw were frequently dismissive of his concerns, sending him down an alternative medicine rabbit hole in search of answers.
Douthat’s investigations lead him to a controversial diagnosis: chronic Lyme disease, a contested version of the disorder which lingers in the body long after the bacteria that causes Lyme has been eradicated and wreaks havoc… If you’ll forgive me for showing my hand, its existence is questioned for good reason.
There’s a very distinct tension in the review between deBoer’s appreciation of Douthat as a writer and his skepticism of what Douthat believes to be the nature of his suffering, together forming the ambivalent tone of the piece. “What we have in The Deep Places, I think, is the most compelling and moving version of a bad argument,” writes deBoer. “Douthat’s book is a humane, searching, surprisingly feisty bit of memoir and reportage.” What it is not, he says, “is a convincing argument that Douthat has located the real source of his suffering, nor that he has been able to see himself from the outside sufficiently to wonder if maybe the truth lies somewhere else than where he’s searched for it.”
To be clear, deBoer is not suggesting that Douthat has some other illness he’s not aware of, nor does he think he has a mental illness, which he states flat out, and if the symptoms are neither physical nor mental, the clear implication is that Douthat is experiencing some kind of physiological deception — the mind convincing the body there’s something wrong when there isn’t. “If there’s a punchline to this review,” deBoer writes, “it has to be this: I came away from The Deep Places more convinced than I was before that chronic Lyme does not exist.” [emphasis mine]
His skepticism, as he outlines, comes down to the insistence by chronic Lyme advocates that both positive and negative reactions to antibiotics is suggestive of the disease (I’m not entirely sure why this matters, to be honest), a couple small studies showing that antibiotics are not effective against chronic Lyme, and his general sense that people who claim to have chronic Lyme or embrace alternative medicine are, in his words, “crunchy.” deBoer admits to being surprised that someone with Douthat’s background, a conservative pundit at the New York Times, a skeptic, wildly curious and intellectually playful, not your average hippie boomer liberal, wrote a memoir on chronic Lyme.
Like Douthat, I’m from Connecticut, the home of Lyme disease and of a vocal part of the chronic Lyme community. So I’ve known many people who have gotten Lyme, just about all of whom have taken the prescribed antibiotics and recovered uneventfully. I have also known a fair number of people who claimed to suffer from chronic Lyme, and they have all been… crunchy. The diagnosis and its inherent antagonism to the medical establishment fit very well into a kind of bougie hippie boomer counterculture.
While I can attest to a certain earthy-crunchiness in the alternative medicine world, the fact is that a number of alternative treatments, supplements, herbs, peptides, vitamins, are backed by data that the medical community has been resistant to integrating, which is why they generally aren’t covered by insurance. There is at present an unhelpful chasm between standard medicine and more alternative and individualized approaches to more complex chronic conditions, and the best providers I’ve seen are those who integrate both methods into, yes, a more “holistic” multi-system approach to healing and the human body that is willing to spend more time with patients and try things out. What arrogance it would take to imagine there’s nothing left to understand or discover in medicine. It seems to me the far greater issue is not the medical back alleys that can certainly lead people astray but the deeper reason they exist and the demand they are meeting. Medicine is a very scary and vulnerable area of human life and far too many people have nightmare medical experiences to speak of and only turn to alternative treatments after the current system has failed them.
Douthat is the right guide through this weird alternative territory, deBoer posits, precisely because he doesn’t fit a certain caricature. “The trouble is that I think that all of this craft is spent in the pursuit of proving something that he can’t prove, that no one has proven despite massive effort by thousands of people. And, deeper trouble still, he seems unable to conclude that it cannot be proven because it is not true. He contemplates it constantly, but I am never convinced that he has truly considered it.”
Insert any number of unresolved issues in the world where there’s been massive effort by thousands of people and it will be clear just how weird that is to say. It’s also completely off base here, because research for these illnesses is notably underfunded, with a minuscule amount of money every year from the NIH in contrast to other diseases. It’s simply not true that the jury is in on whether antibiotics are effective against chronic Lyme, nor is it true that there’s no sign of bacterial infection in post-treatment Lyme disease, and it’s deeply incurious to say the data is absolutely clear one way or the other. I’m entirely open to the possibility that antibiotics are useless against chronic Lyme and have no investment in the contrary, which is exactly why I think we should study these conditions more, not less. What scientific or moral reason could there be not to?
Even while admitting Douthat shatters his stereotype of a chronic Lyme sufferer, it notably doesn’t soften deBoer’s skepticism at all. Does it not say something about your own priors if you need Ross Douthat of the New York mother loving Times to make this case before you even consider the possibility that it’s actually a thing, and then still being far from convinced?
If you have read The Deep Places, please tell me if any part of this summary is inaccurate. (Or, worse, unkind.) Douthat’s problems began during a period of profound transition in his personal life and as he entered middle age. His symptoms were frequently vague and changed over time. He rejected the findings of objective scientific measurements like bloods tests. He doctor-shopped relentlessly. He self-diagnosed via the internet. He saw psychiatric origins as somehow uniquely dishonorable and insulting. He pursued naturopathic/homeopathic/alternative remedies. He generalized his plight to others and reflexively connected the particular details of his own case to critiques of the medical establishment that often seemed entirely separate from that case. Tell me: is that not the exact picture of someone who has convinced themselves into thinking that they have a mysterious medical disorder in a pathological way?
It weirdly sounds to me exactly like someone who’s dealing with the reality of a medically unresolved illness and doing anything and everything under the sun to get better, no matter how strange it looks from the outside. There’s something deeply unfair and almost Kafkaesque about seeing the downstream psychological effects of a long-term illness as the cause and source of the actual illness. Not only does this get the chain of causation backwards in a way that invariably detracts from biomedical research in favor of psychogenic explanations, but frankly, it hurts to be told that your suffering has nothing to do with reality. Yes, that is what people are saying about these illnesses. Not that they are psychological or physiological or whatever else, but that they simply don’t exist.
As the piece goes on, we get closer to why deBoer feels so strongly about this, which has less to do with some abstract principle than his own experience of mental illness and how important it’s been for him to recognize that his perceptions under the influence of his condition are untethered from reality. “To be clear, I don’t think Douthat’s suffering from a mental illness. (I would gently ask him to consider what his anger at the suggestion that he might be says to someone like me.) … But I am saying, with love, that I am intimately familiar with the ways the mind can fool you under extreme conditions.”
But what are those conditions, exactly? This gets at the crucial difference between mental and chronic illnesses that reflect the effectiveness of different approaches: While mental illness detaches you from reality and the body (which is why people with severe mental illness can put their body through horrible things), chronic illness tethers you to the body and floods you with a certain kind of reality. Mental healthcare is at times going to be necessarily adversarial, because you’re dealing with patients who, by the nature of their condition, cannot trust their own instincts and intuitions. Good therapists, for example, should challenge their patients on their assumptions and beliefs when appropriate, since much of what we assume and believe about ourselves and others under the spell of mental illness is not entirely true. I’m not sure that body medicine should be adversarial in the same way, and medical doctors, in my experience, are often too quick to attribute their patient’s symptoms to psychological issues out of sheer convenience.
While I’m glad that doctors have talked deBoer closer to sanity and reality, many medical providers have talked me away from reality and sanity. Treating a physical illness as a mental illness is medically mistaken, but it gets morally shadier when you’re essentially telling someone that their condition is not in any sense real, which, for the record, is not what we tell people with mental illness.
Clearly deBoer doesn’t buy the idea that these sorts of diseases are neglected in medicine and society. “Occam’s razor can be a cold thing, and it is far from an infallible guide. But I must invoke it here,” he writes, “can it possibly be the most direct, most parsimonious explanation that a disease runs rampant among some of the most affluent and well-connected people in the country, and yet for reasons that remain inscrutable to me, the medical establishment has conspired to belittle and ignore them? Medical researchers live to discover new diseases and doctors flourish professionally when they treat them. So why the conspiracy? For what purpose? Who profits? Both because of the incentives of malpractice law and the fact that more treatment means more money, our doctors tend to over treat, over diagnose. But the chronic Lyme narrative requires us to believe that doctors refuse to take it seriously, despite such suffering… for what?”
This seems like such a rosy, perfect-world view of the American medical system I don’t even really know where to begin. For one, it’s not entirely true that doctors flourish professionally by how many diseases they treat, but rather by how many patients they see, which is why many providers complain about the constraints placed on them by insurance companies. I take serious exception to the idea that this is just a rich person’s disease, which doesn’t seem to be true while ignoring the economic impact of these illnesses — erasing those who are ill-and-poor and don’t have any voice. What’s really remarkable to me is that deBoer is someone who gets understandably upset when it’s implied that mental illness is over-treated and over-medicated and can be found in other contexts going on at length about the problems of our privatized healthcare system and the terrible incentives it creates and how you can be made to feel a nuisance by medical staff and begin to doubt the reality of your own experience. And now in this context, it’s the complete opposite? That doctors over-diagnose and over-treat and provide too much care to their patients and now it’s unimaginable how our current healthcare system could ever dismiss or downplay a poorly understood disease?
There are powerful incentives in the world not to acknowledge complex chronic illnesses and I can think of all manner of reasons why people would ignore, deny or psychologize them, from medical providers on down. It’s simply easier to assume the invisibly ill person is mentally weak, which alleviates any responsibility to help them while flattering the ego to imagine nothing like this could ever happen to us. The idea that you could be permanently disabled from a minor infection is not something anyone is really anxious to believe, going against all of our ethics around work and toughness and contradicting the modern compulsion to stay busy. As a medical provider, it is simply easier to blame the patient for a disease you can’t treat than indict the entire medical system of which you are a part. As a patient with an unexplained illness, you become the bearer of bad news and the human tendency is to shoot the messenger.
When you tell someone you have a condition like this, something is being asked of them, either personally or professionally, and human beings have rarely missed an opportunity to do the thing that’s easy over the thing that’s hard. The same historical pattern of unhelpful psychologizing has unfolded with many illnesses: Multiple Sclerosis was once thought to be a conversion disorder or the product of psychological distress, before advancements in medical imaging identified lesions. Not only does this kind of thing happen but it historically resembles the norm, as many diseases, from rheumatoid arthritis and asthma to hyperthyroidism and even AIDS, were once chalked up to psychological issues.
Usually when there’s smoke, there’s fire. Consider the after effects of the Spanish Flu Pandemic or the 1889-1890 Pandemic, for instance, where people stayed sick long afterwards with unexplained symptoms. Is it more likely that everyone experiencing a very similar set of symptoms all around the world and across time and almost always after getting an infection are undergoing some kind of collective hysteria or shared delusion, or that they just happen to have a disease that we don’t yet fully understand? It would have to be a conspiracy theory for this not to exist. Even in our weird twisted culture, people would still generally prefer health over permanent sickness, robustness over sheer exhaustion, life over living death.
“Skepticism towards a particular story about the origins of pain is not the same as skepticism towards the pain itself,” deBoer writes, and there’s truth to that. What’s strange is that, elsewhere, he argues persuasively that it’s absolutely necessary to acknowledge various disabilities and illnesses as both negative and outside of our control or else we are going to completely lose our sense of what these things even mean. Generally the nature of someone’s suffering matters a great deal in terms of how that person is regarded in society and medicine: suffering has to be medicalized to some extent in order to be treated. This line of reasoning just seems like a moral way out of the implication of the rest of his argument: if chronic Lyme isn’t real, obviously we shouldn’t take people who claim to have it all that seriously and the effort would be to disabuse them of their delusions.
The fact is, more people are identifying as sick and disabled than was once the case. Surely, some of them are just looking for an excuse or explanation for their commonplace unhappiness or lack of meaning or whatever, and on the other hand, many people clearly do have real conditions that have simply been overlooked or undiagnosed. It seems deBoer is far more concerned with one side of the ledger than the other, rendering an incomplete picture. His biggest complaint against Douthat’s The Deep Places is the absence of the terms like hypochondria and Munchausen syndrome (and mentions psychosomatic illness elsewhere in a similar vein) and their consequences for our “overtaxed” healthcare system. “I am surprised the book survived the editing process without the demand for perhaps three to five pages of frank consideration of Munchausen’s and similar ailments, which might acknowledge that, yes, sometimes good and stable people believe they suffer from medical conditions when they don’t.”
I mean, do they? If you think you have an illness when you’re perfectly healthy, wouldn’t that seem to indicate some underlying instability or un-wellness — which is why we have names for these conditions? Munchausen, hypochondria, psychosomatic illness — these things exist and I don’t really know what else to say about them, other than doctors seem acutely aware of their existence. What is noteworthy about the psychosomatic argument when applied to chronic illness is that it only ever seems to arise defensively and reactively, to disregard and downplay these conditions that people say they have, and those who make these sorts of arguments commit themselves to the same kind of magical thinking and pop psychology that deBoer would otherwise scalp.
Countless books have been written on the mind-body connection and how psychology affects your physical wellbeing, while far less seem to have been written on how physical illness impacts and shapes your psychology. (Is this not exactly the kind of modern denial of human tragedy that deBoer would be keen to elsewhere observe?) If the connection were so clear between psychological distress and chronic illness, why wouldn’t everyone who’s bugged out, which seems to be quite a few people these days, develop these sorts of conditions and symptoms? Even the psychosomatic narrative on chronic illness implies there has to be something else going on as to why certain people get sick and not others. It can’t just all be in their head, and if you think saying “it’s all in your head” is uncharitable to the argument, bear in mind there are books about exactly this that are literally called, “it’s all in your head.”
Again and again in the essay, I feel like deBoer shows his cards: chronic Lyme doesn’t exist, but we should have sympathy for those people regardless; it’s not a mental illness, but they shouldn’t be offended if it were; people with these conditions tend to be a certain type, but if someone who isn’t that type has it, well, it’s still conspiratorial; you can’t mention chronic Lyme without talking about hypochondria and how it weighs down the medical system, and so on. At a certain point it seems like he’s going round and round, doing anything to avoid taking these illnesses seriously as illnesses.
Just because post-infection diseases are not basically psychosomatic doesn’t mean people with them shouldn’t be willing to try anything that might help, including things like therapy or minor graded exercise. But it’s worth asking what other medical disease exists for which people are encouraged to do therapy and exercise? Generally exercise is not good for sick people and therapy is fine for anyone. If a study came out tomorrow showing that cancer patients who do therapy or have better mental health are more likely to recover – and, in fact, there are such studies – that obviously wouldn’t mean that cancer is psychosomatic, and the fact that these arguments are routinely applied to ME/CFS and related conditions shows a clear double standard and a conflict of interest between patient and clinician groups.
Disability, illness and suffering in modern life cuts deep and spirals out into our whole moral sense of reality, and I’m glad someone is writing about these issues in a serious way. But deBoer’s criticisms of modern life and mental health culture, of people overly attaching a sense of self and purpose to their perceived disorders and disabilities against standard medical practice, is the exact opposite of what you get from patient groups with ME/CFS and other post-infection ailments, who are practically begging the medical world to treat their condition as one of the worst things that could possibly happen to someone. You’re not going to read an essay in the New York Times about how ME/CFS is a superpower or that we should refuse medication to stay authentic, because no one in the depths of this illness would ever feel that way or say anything like that and few people even know what the fuck “ME/CFS” even is. We don’t need cheerleading or tough love, but new and better medicine, which can only come through more research and awareness. The point of illness is to get better. I’m a little blown away deBoer can recognize this truth so clearly when it comes to mental illness and yet makes some weird exception for these types of chronic illnesses.
No one in their right mind should want to be sick or disabled — suffering is bad — and we can’t allow the overwhelming desire for specialness and purpose in modern life to ever distort that. And yet just because some people may exaggerate their conditions online and lean on them for identity and meaning doesn’t mean such conditions don’t exist or that the exaggeration is more of a problem than the conditions themselves. Sometimes I feel like deBoer and others are so invested in their critique of certain contemporary liberal trends, the emphasis on validity and trauma and lived experience and self-esteem, that they seem to miss the obvious and overwhelming importance of these things.
Elsewhere, deBoer insists people would be better off if they “accessed the dignity that comes from living with pain without ceremony,” instead of looking for meaning in their suffering. This may be the core of our disagreement: he just seems to think suffering is kind of boring, and he’s right to a point. Suffering is just suffering and doesn’t come with any inherent moral or spiritual benefits, and a healthier culture would be more willing to face that discomfiting reality. Yet how we make sense of and come to terms with our limitations and vulnerabilities, with wanting and not getting — the basis of suffering — is not only interesting and compelling to me but might be the most interesting and compelling thing — the stuff of which great art and literature is made — and people are not necessarily wrong to intuit meaning to their suffering. I think much of what deBoer is arguing against actually emerges from an absence of ceremony and rites and rituals and meaning around suffering, leaving people to invent their own and not always so well.
Ultimately I’m happy deBoer wrote what he wrote and grateful for the reflection. It’s also worth pointing out that he hasn’t written much or anything more about chronic illness since these pieces, which makes me think he took some of the pushback to heart. I don’t get the sense that he’d ever tell me to my face that I’m not really sick or that my suffering isn’t real or anything like that. This piece began with his quote about the sandpaper touch of human unkindness, and it’s something we can all be a part of at times. I worry that deBoer can play into a common attitude of incredulousness toward certain forms of suffering in a world that, as he well knows, is already quite callous enough.