Fake Diseases: How We Got Here, How its Going.

This essay appeared as part of the April Fakes Day 2026 event at the Between Deception and Dissent project website.

by Caitjan Gainty

Most who watch Penny Lane’s 2018 documentary The Pain of Others remember it for the bizarre nature of the disease it describes and the outrageous lengths to which its three protagonists go to gain relief from it. One woman shaves her head. Another drinks her own urine. Both are driven to these acts by the unrelenting symptoms of Morgellons: skin lesions that emit long colorful fibers; stinging, burning, and even crawling sensations just under the skin; chronic fatigue and more.

‍By and large, medicine has a different definition for Morgellons. On its website, the prestigious Mayo Clinic relocates the disease from the skin to the mind of its sufferers: it is a variant of something called “delusional parasitosis,” it says, which is described as the “belief” that creepy crawly things  - parasites, of course, but also other unpleasant invaders - are on, in or under your skin, even though they are not. It advises “compassionate treatment” but firmly suggests that this ought to be of the psychiatric kind.

‍As a London psychiatrist explained to me, for this reason one past treatment plan for Morgellons sufferers was “treatment by subterfuge.” It is as it sounds. Dermatologists, to whom Morgellons patients were frequently referred, would treat these patients not with drugs from their own skin-focused armamentarium but with drugs borrowed from their colleagues in psychiatry. The patient would be left to presume that their symptoms had been taken seriously and that their skin was being treated by drugs necessary to allay these symptoms. They would not know that they had instead been prescribed drugs to treat their delusional belief that these symptoms were real. To practitioners, this was a harmless, even a good lie, was the rationale. And when these treatments were accompanied by a reduction in or cessation of symptoms, it was also a lie that confirmed what clinicians already presumed: Morgellons wasn’t a “real” disease. 

‍Of course, this was hardly the “compassionate treatment” that the Mayo now recommends as the right approach to Morgellons. It is also not a treatment that works effectively in the age of the internet: a little googling on the part of the patient ruins the ruse. The result is not at all the desired effect from the medical side, and not only in the sense that the “delusional parasitosis” remains untreated. Quite obviously too such a tactic communicates to the patient what they had most feared: that they have not been taken seriously in their concerns; that they have been treated as though they were “crazy,” both by being treated with antipsychotics and by being lied to about that treatment; that their doctor and quite possibly the entire medical profession cannot be trusted, and so on. And in the meantime, their symptoms persist.

‍Doctors don’t want that. But the medical establishment has been largely immovable (with certain exceptions) in the view that this is a mental illness and not a physiologic one. And this makes the conundrum on the medical side one that focuses mostly on how to treat a disease that masquerades as a real entity but is not without resorting to deception, coercion or, god forbid, force.

On the patient side, the stakes are entirely different. For to be pawned off on to a psychiatrist is typically taken as a refutation: an indication that these symptoms do not reference a “real” disease. Yet, they are experiencing real symptoms that take place on the body and they demand their answers there: a biomarker, a pathological finding, a test, perhaps, that will prove the reality of their experience.

This is undoubtedly why the third protagonist in Penny Lane’s moving film looks for the solution to her symptoms in the purchase of an expensive microscope. This irrefutably scientific instrument, she thinks, will allow her to finally officially produce the evidence needed to prove to sceptical doctors once and for all that her Morgellons is real.

‍In this, she is unsuccessful, and it is easy to see why. For in the painful segment that chronicles her experiments with the microscope, one of the essential and governing problems that plagues those who suffer from so-called “fake” diseases is revealed: the language of symptoms, the experience of illness and suffering, the feelings of hopelessness, betrayal and defeat that accompany and define such conditions defy translation into the language of science. For what this experimenter-sufferer sees through her microscope are threads that form themselves into letters that seem to her to indicate not just the life force of a real pathogen but even perhaps an attempt at communication.

‍By great contrast, what scientists conventionally have seen when they have examined these strands is far more banal. Though occasionally one reads a paper that suggests that these strands are biofilaments, made up of the keratin and collagen that also make up our skin, still more frequently asserted is the view that these are strands of polyester, cotton, wool or some of the other bits that make up the lint and fluff of our lives.

‍For patients of diseases that still await some fixed biomarker or pathological sign to mark them out physiologically, Lane’s portrait of Morgellons (which she fittingly describes as an “act of radical empathy”) paints an all too familiar figure. Like a whole host of other rare, poorly understood or simply dismissed diseases or symptom complexes, sufferers find themselves caught in one of the quintessential binds of modern medicine. It is not enough to just feel ill. One’s body also has to provide evidence of that illness of a sort that is medically legible and meaningful. And ideally, that evidence needs to tell a story that writes it onto another story of disease that is already well-known. This gives a definitive diagnosis and hopefully a clear path to therapy as well. But flounder at any one of these points and you too could find yourself in the position of the microscope-toting Morgellons sufferer, searching for anything that will convince doctors to take you seriously.

This is a relatively new phenomenon. For centuries, symptoms formed the material core of medical therapy. It wasn’t that there was no knowledge or conception of disease per se. It was instead that the symptoms of the individual experiencing a disease mattered a lot, perhaps more, than the disease itself. My bout of plague might be broadly similar to your bout of plague in certain ways. But in other ways, because my body is not your body, it would also be different. Those differences were critical, and they would show up in our symptoms. And they mattered, not least to the kinds of treatments we each might be offered.

Scientific medicine shifted this view, especially over the late 19th and early 20th centuries. Preferring to think across bodies and their symptoms, rather than focusing on them each separately, this new iteration of medicine singled out pathogens as responsible for disease (and thus the focus of treatment). Symptoms still mattered, but more as signals: what they could say about disease became more important than what they said about the bodies on which illness occurred or the treatments that were therefore appropriate. My bout of plague was now also your bout of plague, as far as medicine was concerned. ‍

What happened on and to the individual body in particular, then, lost pride of place to what could be deciphered about a set of common symptoms - and the disease they might suggest - across different bodies. Symptoms were the vehicles that gave voice to a diagnosis, either already known or in need of figuring out. 

‍This was a far more efficient way to go about doing medicine. Rather than spending time and resources on each individual, medicine could produce a therapy that would address the enemy - the pathogen - common to all people with the same symptoms. And it was successful. Indeed, the rightness of this logic is often exemplified in terms of the miraculous effects of therapies like antibiotics. For when a bacterial enemy was properly identified and treated with the right antibiotic agent, a near-instant cessation of symptoms was the result. It didn’t matter one bit whose body it was or what their symptoms were. It only mattered that those symptoms came and went in accordance with the presence and absence of the bacteria. ‍

Quite obviously, this left little space for symptoms on their own. In our current medical way of thinking, symptoms are a bit like pronouns without their referents. If they don’t point to disease, what, if anything, do they point to? And what do you do with them? Dismiss them out of hand until they reveal a real disease? Accuse those who have them of making them up? Relegate such patients to psychiatrists, as though these are the medical professionals to tend the scrap heap of presumed-fake-until-maybe-later-when-we-know-more diseases? In addition to the damage this does to those who are relegated there, it casts a weird pall on how we regard the reality of psychiatric illnesses more largely.

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It’s easy to blame doctors or health care practitioners or healthcare systems for medicine’s logical failures. But these logics are also fully embedded in the fabric of our own understandings about health and its care. For decades, medical films and television programs have doubled down on the expectation that as soon as one sets foot onto medicine’s stage, diagnosis and treatment (with a soupçon of soapy melodrama and lashings of miraculous saves) are obviously on the menu, if not the only things available. Oh sure, there are the patients for whom nothing can be done, and those who are difficult to diagnose, but the former typically accept their fate, and the latter are by and large saved by a handsome doctor’s light bulb moment as he hears or sees something entirely unrelated and then makes theconnection. This diet of weekly narrative closure precludes the possibility of real life’s open-endedness, never mind the lingering persistence of unexplained, inscrutable and ever-evolving symptoms.

‍One would not want to be a patient on these shows. Whether patients live or die, suffer or thrive, is their business, best undertaken off-screen. Our business as viewers remains focused around the mystery of disease and the satisfying narrative crack when it gives way, yielding the clarity and specificity of certainty.

‍So much depends on achieving that certainty. For even with the best and most holistic of clinicians and the most understanding of family and friends, the fact remains that the system requires this diagnosis, even if we do not. The processing of symptoms into the legibility of diagnostic certainty matters bureaucratically - access to medical services, eligibility for sick leave, support for disability all depend on this designation. This helps to explain why so much activism around diseases that modern medicine has set aside as fake turns not on the conceptual limitations of our current system, but on the more urgent issue of getting these fake diseases registered as real. Though it means doubling down on the very system that has excluded them, it is also the singular pathway to our mainstream healthcare systems. As the renowned historian of medicine Charles Rosenberg put it nearly 25 years ago, diagnosis is so central to the modern care of health as to be positively tyrannical – it is the gatekeeper to our healthcare system, and it controls our passage through it. And it is also a critical source of how we parse illness at all, how we respond to the “pain of others.”

‍He’s still right, of course. Yet, awareness of illnesses that lack a solid disease identity is rising. Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome), Long Lyme Disease and perhaps especially Long Covid among others have begun to force change in the way we approach such entities, occasioning what an eminent American psychiatrist described to me as a kind of “therapeutic surrender” that restores to symptoms and narratives of illness experience at least a seat at the therapeutic table. And with this, healthcare practitioners have become more attuned to medicine’s bigger picture: self-aware about what medicine can but also cannot do and what its structuring makes but also unmakes as possibilities in the clinic.