Jun 5
Cadenza for Fractured Consciousness: A Personal History of the World’s Most Misunderstood Illness
Part I
Poltergeist
“I am 27 years old, and I might be dying.”
Late in 2013, I inexplicably lost my ability to walk. It happened over the course of just a few weeks; fast enough to be terrifying, slow enough to feel everything in crystalline detail. It wasn’t the first sign that something was wrong. About a year before, I had awoken one morning with a shooting pain in my wrist, as if I’d stuck my finger in an electrical socket. Then both my arms went weak. Back then, I assumed it was some kind of repetitive strain injury. It seemed like the predictable result of working too hard. I blamed it on my job and went to see a physical therapist down the road. I didn’t even call my doctor.
But a year later, my recovery had stalled. I was still doggedly doing the physio exercises, expecting somehow to be healed, when I noticed that the funny, latex-under-the-skin feeling that preceded my arm “injury” now appeared again — this time in my feet. Then it spread up my legs. “Oh hell no,” I thought. “Ignore it. It’s nothing. It’ll go away.” It didn’t. Instead it came on coldly and inexorably, advancing upward like the world’s slowest anesthetic. It only dawned on me then the kind of danger I might be in.
Before my legs collapsed, I still thought of myself as an athletic guy in my mid-twenties. But the truth is, a number of strange pains and ailments had been sneaking up on me. Now, as I rapidly lost a lifetime’s worth of mobility, a reckoning seemed to be at hand. First, I could no longer manage my usual walk across town. Then I couldn’t reach the end of the parking lot. Then the other end of the house.
The speed of my decline stunned everyone. My family doctor jumped into action, ordering a battery of tests. He suspected polymyositis, a disorder in which immune cells turn rogue and attack the body’s muscle tissue. But the results came back normal. My loved ones and friends circled protectively. More tests, more negative results, more grave gazes. I didn’t know anything about medicine at the time, but wondered: don’t disorders like MS take much longer to ravage the body? What affliction moves at this speed? What if it attacks my breathing muscles?
Every specialist was mystified. They ran more tests, charged thousands of dollars, tripped over themselves pushing me out the door to progressively less likely departments. I relied upon a cane and then a wheelchair. I called friends in other cities and we cried on the phone. I waited for the axe to fall.
And then nothing — it stopped getting worse. I even regained a little mobility, thanks to repeated and painful hip exercises. But there were other problems: massive, lightning-like headaches. Constant pain and fatigue. My throat became hypersensitive and clenched uncontrollably, leaving me choking and voiceless inside my own skin.
Unable to continue life as normal, I embarked on a multi-year search for a diagnosis. Then, in 2017, having spent nearly a decade as a medical anomaly; having seen dozens of doctors; having had my blood analyzed for everything from HIV to ultra-rare autoimmune disorders; having cataloged my symptoms and taught myself anatomy and basic neurology; having tattooed on my body that I was prepared to die; I finally found myself sitting before a panel of elite scientists at the top rare disease research hospital in the world. They told me the only thing I was unprepared to hear.
It was Functional Neurological Disorder (FND), they said: a condition once known as Conversion Disorder, and before that, as Hysteria. There was no doubt. They were sure.
The floor seemed to open beneath me. What? Conversion Disorder?
I thanked them for their time. Then I went back to the hotel and had a panic attack.
I thought: It can’t be true, right? I don’t feel like there’s anything psychologically wrong with me. But if I’m “converting” my emotions into disability, isn’t that exactly what I would think? Did I do all this to myself?
I had to take the possibility seriously. So I opened my laptop to search for “Functional Neurological Disorder.” There, immediately, was a study in which Harvard researchers had found something in the brains of FND patients. And I felt the first stirrings of recognition in mine.
This is the story of FND, née Conversion Disorder, née Hysteria: the story of an epidemic that vanished without ever going away. With a name lifted from antiquity, it accompanied the likes of Charcot and Freud to mega-stardom in the 19th century, only to be banished to the dim margins of memory in the 20th.
Now, as tectonic shifts in brain science converge with the social struggle for a more just and equitable healthcare, Hysteria has returned once again. It has come to reclaim its home at the very place where the ground now gives way: at the collapsing scientific border between brain and mind. As Hysteria, the disorder once transformed society’s understanding of mental and physical illness. As FND, it may yet do so again. At stake is recovery and justice for millions of abandoned patients, and one of the oldest questions to haunt humanity: where, exactly, does mind end and body begin?
“As Though Anatomy Doesn’t Exist”
You’d think FND would be hard to miss. A person suffering from it may get violent seizures, their body contracting and convulsing against their will. They may find a limb suddenly weak or paralyzed. Some lose the ability to speak or walk. They may become chronically dizzy, collapse in sudden “drop attacks,” or endure storms of phantom “electric shocks.” For some people, the body curls into a fixed posture and freezes that way.
“I woke up one day and felt weak on my left side,” said Mary¹. “I just felt maybe I was getting sick or something. When I couldn’t hold onto my fork to be able to cut up my chicken, I knew something was wrong.”
If these symptoms are dramatic in their expression, however, they can also be strangely elusive in their meaning. They often closely resemble other neurological disorders, but aren’t really like other disorders at all. Mary’s experience is typical of someone who has had a stroke. But when she underwent neurological testing, there was no sign of stroke in her brain.
FND symptoms don’t just defy doctors’ attempts at medical explanation. At first glance, some appear to be physically impossible. People with “functional blindness,” for example, can experience patterns of visual loss that defy the laws of optics. Yet they are not faking, and aren’t simply imagining that they have a problem. Their blindness is real.
One might expect such a bizarre phenomenon would provoke a barrage of news coverage and medical investigations. For all its fireworks, however, FND is a disorder that society seems curiously unable to see. This is especially odd given that it’s one of the more common brain disorders worldwide — potentially the second most common reason people see an outpatient neurologist, and at least as frequent as Parkinson’s or MS. Doctors meet people with it every day. Yet for many people it can take a decade to get a diagnosis, if they ever do at all.
Most people who have heard of “Hysteria”, the condition now known as FND², believe it to be a relic of the 1800s — if it ever existed at all. Studies show just how mistaken that notion is, however. FND “exists, it is very common, and it is involuntary,” says Dr. Kim Bullock, a neuropsychiatrist at Stanford University. In 2006, Dr. Mark Hallett, the head of the NIH’s Human Motor Control Unit, described the failure to reckon with FND as a “crisis for neurology.” One recent study found that Functional Neurological Disorder generates an estimated $1.2 billion in US healthcare costs per year — factoring in only emergency department and acute inpatient care.
In other words, the disorder formerly known as Hysteria has always been with us, but we are only lately re-learning to see its face. As an international panel of experts recently put it, FND has been hiding in plain sight.
In an ironic parallel, doctors who encounter people with FND often have trouble processing what they’re seeing. The disorder doesn’t show up on typical brain scans, and the symptoms don’t seem to make sense. Is it a “real, biological” disorder? Or is it just “all in your head?” Caught between the poles of this false dichotomy, many physicians fail to understand or even recognize a condition that flagrantly refuses to stay categorized.
Today, this controversy is playing out online as well. How can a single disorder be triggered by both COVID-19 and its vaccine? “The debates raging on Twitter and in Youtube comments are, ‘It’s either real — physical — or it’s faked’; and it’s not either of those things,” says Dr. Tim Nicholson, psychiatrist at King’s College London. “It’s functional. It’s a different thing altogether. There’s a third option.”¹³
Therein lies the problem: for the last hundred or so years, medicine has tried (often semi-covertly) to make sense of FND as either only a psychological problem or only a physical disease. But FND, the biological phenomenon, far predates modern medicine. And the institutions that grew up around it — neurology, psychiatry, psychology — have never captured it completely.
Instead, FND has beaten generation after generation of humanity’s best scientists. The question is whether this time will be different — and whether as a society we’re willing to learn from the errors, failures, and sexism that brought us to the crisis point today.
Vanishing Act
“Rest assured, hysteria is coming along, and one day it will occupy gloriously the important place it deserves in the sun.” — Jean-Martin Charcot to Sigmund Freud, 1888 ³
The Middle Ages were a bad time to be a Hysteric, or even to stand near one. At the time, symptoms of FND were often considered the work of witchcraft. So when English teenager Mary Glover was seized with violent fits in the early 1600s, her neighbor, an old woman named Elizabeth Jackson, was accused of cursing her. It must have seemed a natural conclusion: the two were known to hate each other, and the fact that Jackson went about town loudly wishing ill upon her adolescent foe probably didn’t help.
At the trial, physician Edward Jorden appeared for the defense. He argued a different theory: that Glover suffered from a natural bodily disease rather than a supernatural affliction. His appeal to reason failed. The judge essentially declared that he knew a witch when he saw one, and Jackson, he said, seemed very much a witch indeed. Jackson was hauled off to jail.
But Jorden wasn’t done yet. In the aftermath of the trial he wrote A Briefe Discourse of a Disease Called the Suffocation of the Mother, a book which helped popularize the concept of Hysteria in Europe. He argued that the apparent symptoms of demonic possession (“suffocation in the throate, croaking of Frogges, hissing of Snakes … frenzies, convulsions, hickcockes”) should not be “imputed to the Divell,” but were rather a sign of explicable disease.
Jorden hadn’t pulled this theory out of thin air. He drew on earlier “scientific” texts by ancient Greek and Roman writers. While the ancient Greeks, contrary to popular belief, never recognized a disease called “Hysteria,” they did write about a series of womb disorders — “hysterike pnix,” “hystera,” and so on — that subsequent scholars combined over time in a centuries-long game of telephone.
European doctors following Jorden came to see these ancient maladies as one single, newly-conceived thing: Hysteria. The amalgamated diagnosis of Hysteria was thought to be an exclusively female disorder, one in which a woman’s womb rampaged throughout her body like an animal, leaving medical chaos in its path (and allegedly giving rise to outbursts of emotionality). If the scientific foundations of the theory were unsteady, its value for physicians like Jorden must have been clear. It offered a (more) scientific explanation; a way to explain what happened to someone like Mary Glover in witch-free terms.
As Hysteria returned from the realm of the supernatural, it caught the attention of scientists in the still-young field of neurology. Rather than attributing patients’ symptoms to a wandering uterus, they thought the cause more likely to be “situated in the brain.” Their pursuit of the wraith-like Hysteria intensified over the next 150 years, finally reaching an apotheosis in the late 1800s among the storied wards of Belle Époque Paris. It was a time of hypnotists, seances, and the telegraph; invisible forces seemed to be everywhere. It was also a “Golden Age” in the scientific quest to understand Hysteria, due in part to a stout, bulldog-faced man working in Paris’ Salpêtrière hospital.
Jean-Martin Charcot, now known as “the father of modern neurology,” was already well-regarded in his day. He either named or was the first to describe several famous diseases, including Multiple Sclerosis, Parkinson’s, and ALS. He also took a passionate interest in Hysteria. Under Charcot’s watchful eye, the diagnosis of Hysteria assumed a more definite form, coalescing into a cluster of symptoms that are still recognizable today.
Charcot was especially famous for his method. He observed patients carefully and kept exhaustive notes. He tested them for tricks and fakery. Then, he studied the brains of the deceased, correlating sites of visible damage (or “lesions”, as they are formally known) with the symptoms suffered in life. In this way, he understood the landscape of the brain much in the way neurologists do today. If your left leg was paralyzed, he knew where the damage was likely to be.
He also investigated the mechanisms of Hysteria with his usual rigor. Unfortunately, it refused to play by the rules. Patients’ symptoms morphed, moved around the body, or vanished entirely. When someone lost the use of an arm, Charcot would afterwards find no brain lesion in the expected place.
In dramatic masterclasses (which now feel like gaudy spectacle), he demonstrated to crowds of Parisian celebrities that things got weirder yet: “hysterics” could be made to spasm or collapse through hypnotic suggestion alone. Whatever this was, it wasn’t a typical brain disease.
So rather than blaming symptoms on damage to the brain’s structure, as in a typical neurological disease, Charcot proposed a “functional” or “dynamic lesion.” This neural poltergeist moved about the brain, temporarily impairing brain areas and producing symptoms that were the same as if the patient had been injured in that spot. In other words, Charcot said, there was no large-scale cell death to be found in the brains of Hysteria patients. There was instead a kind of glitch in the machine, causing the person’s nervous system to short-circuit while leaving the basic wiring intact.
These revelations captured the Parisian imagination much the way that CRISPR and artificial intelligence fascinate us today. They also made a deep impression on one of Charcot’s students: a young neurologist named Sigmund Freud.
Freud looms large over any discussion of Hysteria, because he so transformed the study of it, and because we are in many ways still living in his world. Freud was a keen investigator, and wrote with genuine sympathy for his patients’ plight. But he also left behind a deeply problematic legacy that still produces medical harm for people with FND today. Freudian constructs have also exacerbated inequality in many aspects of women’s lives, from social roles and sexuality to public understanding of women’s health.
But all that was still to come. In 1895, Freud and co-author Josef Breuer had just published Studies on Hysteria, an explosive new narrative that proved so vivid, it still lingers in the public mind.
Like researchers before them, Freud and Breuer noticed that Hysteria patients often suffered traumatic events in childhood⁴. They then took this observation one step further. According to Freud, hysterics had unwittingly created their own symptoms by suppressing traumatic memories from consciousness. In so doing, they “converted” the traumatic idea’s psychic energy into real physical symptoms. The thought vanished, the symptom appeared.
“The splitting of the consciousness … [is] a deliberate and intentional one,” he wrote, but “the actual outcome is something different from what the subject intended. What he wanted was to do away with an idea, as though it had never appeared, but all he succeeds in doing is to isolate it psychically.”
Freud had not reached this new vision through any methodical, Charcotian cartography. Instead, he pursued more ephemeral quarry — emotions, ideas, memories. “Traveling backwards into the patient’s past, step by step, and always guided by the organic train of symptoms and of thoughts and memories aroused,” he wrote, “I finally reached the starting point of the pathological process.” The experience was transformative for the young doctor: Freud not only believed in the reality of Hysteria, he believed himself to be a hysteric as well.⁵
This radical theory implied that the way to treat Hysteria was not to futilely pursue its neurological correlates, as Charcot had done. What hysterics needed was a kind of psychological exorcism; to excavate the trauma and dislodge it from the subconscious. So, in free-wheeling sessions of “free association,” Freud invited patients to dig. Many turned up traumatic memories, pulling their inner conflicts to light in moments of dramatic catharsis. The symptoms vanished like mist.
Except when they didn’t. Some people never turned up such memories, or if they did, they failed to recover. In response, Freud formulated increasingly complex theories that laid the blame on “symbolic” traumas or repressed sexual fantasies. If this sounds questionable: it was. No matter, though. Studies had already made Freud a household name, and eventually he dropped Hysteria and moved on to other things.
In the aftermath of Studies, brain science fractured into multiple disciplines. The once more closely-aligned psychiatry and neurology were riven apart; the new field of psychoanalysis was born; the resulting divide between those who heal the mind and those who treat the brain still persists today. And Freud’s ideas, which dominated early 20th-century American psychiatry, had a similarly transformative effect on the disorder that made him famous. Hysteria was removed from neurology, where it no longer seemed to fit, and deposited on the fabled couches of psychoanalysis. Thus Hysteria itself underwent a kind of conversion-in-reverse, transforming in the public mind from a physical disorder into a psychological one.
But cracks started to appear in the Freudian edifice almost as soon as it was built. To start, many of Freud’s assertions simply couldn’t be proven. Did conversion patients really “convert” anything at all? If a psychoanalyst said you were repressing trauma, could you prove you weren’t? How could anyone tell? “The blind faith that was shown in Freud, the cult of Freud almost, was that everyone would blindly accept what he said,” says Nicholson. “There didn’t need to be any studies to show that this was correct.”
Others wondered if the very real symptoms of Hysteria might be misinterpreted by over-eager analysts. Why did there have to be anything “symbolic” about them at all? Amidst this growing concern, the British psychiatrist Eliot Slater launched an assault on the foundations of the Hysteria concept. In the 1950s, he searched for the genetic basis of Hysteria and came up with exactly nothing. Growing suspicious, he re-examined a number of Hysteria cases and arrived at a troubling conclusion: it seemed all the patients really had other disorders, like Epilepsy and MS. Why was Hysteria so hard to understand? Because, Slater said, it didn’t exist. In his telling, there was no such thing as Hysteria — just a cluster of diagnostic screw-ups with nothing at its core.⁶
“The only thing that hysterical [sic] patients can be shown to have in common is that they are all patients,” he declared. “The diagnosis of ‘Hysteria’ is a disguise for ignorance and a fertile source of clinical error. It is in fact not only a delusion but a snare.”
By the early 1990s, the disorder which once so captured the imagination had vanished from public consciousness like a bad dream. Freudian theory lost its hold on the psychological sciences, and Slater had largely convinced disciples of the physical brain that Hysteria was a myth. By now, most people knew Hysteria as a medical oddity from medicine’s dark ages.⁷ “And what is left of Hysteria today?” asked the French psychiatrist Etienne Trillat. “Hysteria is of course dead, and it has taken its mysteries with it to the grave.”
Abandoned in Nowhereland
It was in this context that I entered what I’ve come to call “Nowhereland,” the medical exile to which people with FND are often consigned. “It’s a weird paradigm,” says Nick, a man with functional blindness. “It’s like being lost.”
It took me a while to realize that, like Hysteria, I too had become a wandering ghost. Between 2010 and 2017, I traveled to many large hospitals and small clinics, seeing any specialist who might be able to help. Everywhere, doors closed in my face. Neurologists and immunologists and rheumatologists came and went. All of them saw the weakness, the spasms, the pain, but none could pinpoint anything identifiably wrong with me. Time after time, I was discharged and sent elsewhere. Eventually I ran out of places to go.
Not long ago, some observers assumed that with time and improved diagnostics, the disorder once called “Hysteria” would turn out to be a group of new, rare, or unrecognized diseases. That hasn’t happened. Despite the advent of MRIs, EEG, nerve conduction studies, and genetic testing, the percentages of people in neurology clinics with what were once called “hysterical” symptoms remain stubbornly where they were when Charcot roamed the Salpêtrière.
Where, then, did all the hysterics go? Nowhere at all: while these patients may have appeared to vanish, they were in reality only re-categorized. They became part of the undifferentiated throngs of people who seek help for unexplained symptoms every year; the staggering 30% of patients whose symptoms neurologists call “‘not at all’ or only ‘somewhat’ explained by organic disease.” This was in some respects a willful act of un-seeing: rather than vanquishing Hysteria by curing it, or finding other diagnoses that were truly a better fit, Medicine simply determined that people with these symptoms, which doctors called “non-organic,” didn’t count.
In Nowhereland, brutal and demoralizing experiences are common. “When doctors are faced with medical uncertainty or are unfamiliar with current FND research, they are often dismissive,” says Bridget Mildon, head of the patient advocacy group FND Hope International. This commonly results in “feelings of shame” as people are “made to believe they were the cause of the illness.”
“Every time I tried to get help, I was laughed at by doctors,” says Nick. “The neurologist said, ‘You don’t have anything. You’re wasting my time even being here. Why don’t you tell me why you walk the way you do? And tell me why your arms don’t work?’”
Jane, who experiences spasms and stroke-like episodes, told me about her visit to the ER. “Once they realized it wasn’t a stroke, they asked a neurologist to see me,” she says. “He sat on my bed, pulled a face and said, ‘We can all pull faces.’”
These testaments of harm, nearly ubiquitous among people with FND, are now surfacing in the research literature as well. In an editorial in the Journal of the American Medical Association (JAMA), Yale University neurologist Dr. Benjamin Tolchin surveyed FND patients and found consistent reports that doctors “routinely accused them of faking their symptoms, disparaged them, and even inflicted minor injuries on them in efforts to ‘prove’ their symptoms were fake.”⁸
“I think there’s an element of anger and frustration on the part of some clinicians,” says Tolchin. They may believe people are “faking their symptoms in order to get something out of the healthcare system (perhaps attention, drugs, or disability payments).”
Like many other illnesses, “medical professionals don’t know why some people develop functional symptoms and others don’t,” says Mildon, which is why “research is greatly needed.”
This climate of ignorance can make it dangerous for people with FND to seek medical care. Doctors fail to distinguish “functional” symptoms from those of traditional disease, assume that functional symptoms are a form of delusion or mere “stress”, and often provide next to no substantive medical care. “After my horrific experiences with doctors, I feel like I have to ‘prove’ I’m sick and that it’s out of my control,” Olivia says.
When something breaks down in the brain, the problems that arise don’t fit neatly into one specialty or another because humans made those distinctions up. They don’t reflect how the brain actually works. As a group of Harvard researchers recently put it, “Brain circuits do not distinguish between neurologic and psychiatric disorders.”
And the damage of this misunderstanding isn’t limited to people with FND. It often spills over onto other marginalized people — particularly women with other health conditions. While doctors no longer diagnose patients with Hysteria, the stereotype of dramatic, attention-seeking women still pervades the field of medicine.⁹ Studies show that this inherited bias leads many doctors to perceive women’s symptoms as more likely to be “psychological”, and therefore, not a genuine physical illness. In some cases, that misattribution can be fatal. One study found that doctors were more likely to attribute chest pain in women to anxiety, rather than what it was — a heart attack.
The three-fold conflation of femininity, mental illness, and unexplained physical symptoms creates a kind of ouroboros of dismissal: “Women are hysterical,” the reasoning goes, “so they complain about nothing, and that’s why this patient’s tests are negative — because she’s a hysterical woman.” This implicit bias drives disparities in how women are treated in medical settings: men are more likely to be given “physical” or “organic” diagnoses, women are more likely to be given “psychological” or “non-organic” ones, and to go longer without a diagnosis of any kind.
These failures stem from long-standing sexist biases in Western medicine. But they are also failures of dualism, the philosophical foundation upon which these sexist medical sorting practices rest. Dualism, a school of thought that categorically separates mind and body, was most famously championed by the philosopher Renee Descartes, who proposed that humans have a material brain — a physical thing you can lift out of a skull — and an immaterial mind, which exists separately (perhaps even beyond the material world). This idea is now known as “Cartesian dualism.” Dualistic assumptions underpin much of 20th century medical practice.
But while practitioners of medicine may divide up the study of the brain into distinct categories of “physical” and “psychological” (and mistreat people whose illnesses don’t conform), no such divisions exist in the brain itself. In reality, psychological disorders are brain disorders, and neurological diseases like dementia affect how people think and process emotions. When something breaks down in the brain, the problems that arise don’t fit neatly into one specialty or another because humans made those distinctions up. They don’t reflect how the brain actually works. As a group of Harvard researchers recently put it, “Brain circuits do not distinguish between neurologic and psychiatric disorders.”
In fact, there is ample evidence that nature has not split us along Cartesian lines. Stress can trigger migraines and speed the progression of cancer. People born blind (a physical condition) seem to be protected from schizophrenia (a mental one). Parkinson’s Disease spawns a host of neurologically-driven psychological problems, including depression, apathy, and psychosis. Perhaps most dramatic are the changes that occur in people with Dissociative Identity Disorder: when people with DID slip into one of their alternate personalities (or “alters”), they may switch handedness, lose the use of a limb,¹⁰ or display measurable changes in eyesight.
There was no one to explain this to me — that brain function can go awry, with radical physical consequences many doctors are ill-equipped to understand — when I most needed it. Instead, I discovered the perils of life as a medical enigma. At a world-leading neuromuscular clinic, I endured hours of probing by electro-needle. I ended the appointment screaming in pain, my arm paralyzed. Out of desperation, I later visited a homeopath, only to discover she was selling quack “bioresonance” cures to people dying of incurable disease. When my GP prescribed a neurological medication for my pain, I became violently ill, lost several months of my memory, and spiraled into a hallucinatory fugue state.
Finally, I reached for the only option I had left: a long-shot application to the NIH’s Undiagnosed Disease Network, the top undiagnosed disease research program in the world. At that time, the program had only accepted and diagnosed about 300 patients. I was about to become one of them.
Just before Halloween 2017, my partner and I stood gawking in the lobby of the NIH’s Clinical Center in Bethesda, MD. The building known as “America’s research hospital” is massive — 2.5 million square feet, nine miles of corridor. After passing through security, we wandered the cavernous atrium, where throngs of pint-sized witches and ghosts trick-or-treated through the hallways, toddling beside a parent or pushed along on stretchers. Secretaries gave them candy out of plastic Jack o’ Lanterns.
Then we took a deep breath and rode the elevator up to the Human Motor Control Clinic, where my world inverted. After an initial exam by a young doctor, I was brought before an assembly of several dozen scientists. Some had flown in from other countries to be there. They asked me: did I think this might be a brain disorder? Yes, I said, but every previous doctor seemed to disagree. All the MRIs had come back clean. “A clean MRI isn’t the end of the story,” someone said. At the front of the room, Dr. Mark Hallett, the head of the Human Motor Control Unit, sat next to me. He demonstrated in Charcotian fashion that I had “give-way” weakness: my leg would collapse if you pushed on it. He seemed to have an intuitive sense for what I had. It seemed to be going well.
Then I was brought back to the exam room, where the first doctor, in private, told me that I had Functional Neurological Disorder. A bell went off dimly in my mind. I thought I had heard of this. Did he mean conversion disorder?, I asked. Yes, he said. Kind of.
At the prospect of “conversion”, I broke down. I thought they meant that I didn’t have anything, or that I had acted out some kind of delusion instead of dealing with my emotions. The reality of my own life seemed to flex beneath me, as if I stood on floorboards suspended over a vast void I only now realized was there.
I didn’t know it at the time, but my own personal crisis replicated the science of Medicine’s in miniature. If I was desperate to know what box FND should go in — biology or psychology? — it was because I needed to know whether I was, in fact, crazy. But the old paradigms held no answers; FND can walk through walls.
And what felt inevitable and permanent — the codifying of brain disorders into physical and psychological, the banishment of seemingly paradoxical conditions like mine from the purview of medicine, the death of antiquated concepts like Hysteria — was only a moment. And like all moments, it was fated to pass; thanks to long-in-coming advances in brain science — and thanks as well to FND, the great disruptor, the monster that feeds on medical hubris, the chameleonic phantom that breaks the strongest among us and acts, as Freud once remarked, “as if anatomy doesn’t exist.”
Part II
“A Bit Like a Set of Magic Tricks”
Back in 1995, Jon Stone was a new neurologist, settling into his first training position at a major UK medical center. As is typical at this stage, he spent his days absorbing torrents of information from mentors and colleagues. He enjoyed honing the skills of diagnosing and treating complex brain conditions. But he was also dismayed by how doctors at the hospital treated people with certain disabilities.
“The attitude to patients with FND at that time was generally pretty shocking,” he says. “There was a culture of thinking that anybody that didn’t have a structural disease or identifiable disease was in some way bogus. And actually the word ‘bogus’ was used.”
“I just couldn’t understand it because I thought, having met patients with it, ‘They clearly do have these problems, they’re not making it up. You only have to spend a bit of time talking to people to know that. And it’s actually a very fascinating neurological problem. Why isn’t someone interested?’”
At weekly meetings, Stone saw doctors examine patients who came in for diagnosis. When the person left the room, the doctors laughed about their “bogus,” “psychogenic” tremors and tics. These symptoms didn’t just signify what a person had. They told you what a person was.
My personal experience and subsequent research suggest that many American doctors don’t know a functional disorder when they see one. By contrast, Stone says that in the UK hospitals, doctors “were able to examine a patient and say, ‘Yeah, that’s a functional disorder.’” They were just being secretive about it. “This stuff wasn’t really being taught,” he says. “You couldn’t find it in a book, or certainly not a modern book. It was in all the old books, being handed down, word-of-mouth, a bit like a set of magic tricks.”
Stone chafed at these furtive, discriminatory practices. Having experienced a developmental stutter as a child — which recurred in his teenage years as a functional speech disorder — he wanted to give functional disorders another look. When he eventually found supportive mentors in Edinburgh, he and a small circle of collaborators got to work on re-investigating the basic questions: can it be shown that people with so-called “Conversion Disorder” are experiencing real disability? Are there reliable ways to tell if someone has it? And most importantly, is there any way to help them recover?
We now have the advantage of hindsight: two decades of studies have answered each of these questions in the affirmative. Stone’s research, much undertaken in collaboration with neuropsychiatrist Alan Carson, helped to develop and popularize methods of testing whether a person’s symptoms stem from a functional disorder or a more-familiar structural one. To do so, they combined modern neurology with guidance from those old books, among them the writings of Charcot.
When they re-evaluated these “medically unexplained” patients with the tools of modern neurology, the tragedy of FND became clear. Carson and Stone found that people with FND “are not merely the ‘worried well’,” but rather “demonstrably ill by the usually applied criteria of disability and distress.” They were as severely disabled as people with Epilepsy or Parkinson’s. Doctors called them frustrating and difficult to treat. And their symptoms often never improved. “Many patients … remain symptomatic, distressed, and disabled as long as 12 years after the original diagnosis,” Stone wrote in a 12-year follow-up study.
Today, a number of American experts affirm this conclusion. “FND causes very real disability and suffering,” says Tolchin. “Patients with FND are not ‘faking’ their symptoms.”
Stone also publicized the unique features of the disorder, explaining how the once-secret diagnostic tricks worked — despite the opposition of some mentors and colleagues. These techniques now form the basis of how experts diagnose people with FND today: they look for specific idiosyncrasies that set functional disorders apart, rather than assuming, as many doctors once did, that anyone with “medically unexplained” symptoms has a functional disorder.¹¹
“You’re looking for a pattern of weakness that only occurs in FND,” Stone says. “In the case of limb weakness, all the movements are equally weak. So if someone is trying to lift up their hip, or press down their hip into the bed or chair, it’s equally weak. And that’s not a situation you see really in any other neurological condition. If someone has a stroke, they can usually push down their leg no problem, they just can’t lift it up.”
Stone’s retro-futuristic approach also shows how apparently dissimilar symptoms can share connections beneath the surface. “You’re looking for evidence of internal inconsistency,” he says, “the way in which someone can’t make a movement, particularly when they’re trying to. That’s a hallmark. Their voluntary movements are impaired, but their automatic movements are intact.”
Not all movements are created identically in the brain. Some brain systems handle simple actions, like the curling of a fist. Others coordinate complex ones, like the multi-limbed cascades of a drum solo. Some guide intentional movements, and others seem to work without any conscious input. These neural fault lines come to the surface in people with FND.
“Understanding what breaks down in FND may ultimately tell us something about the functions of awareness,” says Dr. Hakwan Lau, neuroscientist at the Riken Institute Center for Brain Science in Japan. “Why do we need to be aware of our intentions in the first place? Can’t things just go, so to speak, on autopilot? If FND does turn out to be due to impaired awareness of intentions, it does sound like such awareness may be quite important.”
Perversely, for people with FND, the focused intention to move seems to foul up the fluid movements the brain is normally capable of. Many of Stone’s diagnostic tests therefore involve getting a person to redirect their attention elsewhere. When they do, normal movements emerge. “The sign itself is telling you about the condition,” Stone says, “and also showing the reversibility, potentially, of the condition.”
That’s why when someone with left-hand tremors taps their right hand in time with Stone, the tremors lessen or stop entirely. That’s why, when he manipulates a limb in just the right way, weak patients find they briefly regain strength. Parts of the brain that control attention, and which seem to worsen the symptoms, have been forced to do something else. For a fleeting moment, the patient is no longer driving their body with the parking brake on.
If FND classically surfaces as a kind of shape-shifting poltergeist, forever bedeviling the physician, these techniques reverse the relationship. Here, using principles of misdirection familiar to any magician, the doctor tricks the ghost.
For patients who ache for answers, this can be revelatory. It shows that there is a concrete neurological basis for the disability. It’s not that the person thinks they can’t move. It’s not that they won’t move. There is a genuine impediment to doing so. And the fact of a clean MRI makes little difference.
“I really hope we look back with embarrassment at the way that we’ve been practicing medicine,” says Stone, “which is based on the idea that ‘we’ll do something to help you if we can see it. But if we can’t, with the tools we have now, then we’re inclined not to believe you, and we’ll just leave you alone’. That is a form of medical apartheid that’s going on, I think. Which I hope we’ll look back at with shame.”
FND can, however, be seen with the advanced neuroimaging methods brain researchers use in the lab. And over the last two decades, techniques like fMRI have revealed the ghostly traces of FND in the brain. As early as 1997, scientists recorded abnormal brain activity in a woman with “hysterical paralysis.” In 2010, NIH researchers found that people with functional tremors had altered activity in a brain area called the temporoparietal junction (TPJ), which is involved with feelings of body ownership and control. Damage to the TPJ results in out-of-body experiences — so if activity in the TPJ is disrupted, that might explain why functional tremors, which occur via voluntary pathways, feel as though they can’t be controlled. Other studies showed hyper-activation of the amygdala, a brain area thought to be involved with evaluating threats.
Today, the Functional Neurological Disorder Research Group at Massachusetts General Hospital uses cutting-edge neuroimaging tools to investigate the biology of FND. Dr. David Perez, a dual-trained neurologist and psychiatrist who leads the group, describes FND as a “multi-network problem”, in which “several core brain networks interact in abnormal ways to potentially produce the constellation of symptoms.” To figure out how that happens, Perez’s team used an analysis technique called stepwise functional connectivity to track how signals flow through the brains of people with FND. They found that the amygdala, the brain’s center of subconscious threat processing, may be an important driver of FND symptoms.
Psychological disorders, like depression and anorexia, are also visible on fMRI but cause no large-scale damage to the brain. So how “psychological” is FND? Is it basically converted trauma, as Freud said? Or is it only a neurological disorder, and not really a “mind” problem at all?
In 2018, a team of researchers analyzed the available studies on trauma and FND. In a systematic review, they revealed what many psychologists suspected — people with FND, as a group, have experienced stunningly high rates of “adverse life events,” including both physical and sexual abuse. That suggests that psychological trauma may often contribute to FND.
But starkly, up to a third of people with FND reported no such experiences. Carson says, “I do find that a lot of patients I see have been traumatized by people continuously searching and asserting that such abuse must have happened.” And “where it’s present,” he says, “it tends not to be Freudian in nature.” Other studies show that physical events like injuries, accidents, and surgeries are also common triggers. COVID-19 vaccinations have triggered FND in a number of people. And up to a third of people with Parkinson’s may develop FND secondarily. In short, FND may often develop out of emotional trauma — but it can’t just be that.
“We just don’t have the language to talk about a problem where the pendulum should be resting in the middle,” Stone says, “where we shouldn’t even have these categories, which are meaningless, of neurological and psychological.”
More nuanced models may be needed. “With some people it doesn’t matter how much sugar they have, they’ll just get diabetes,” Nicholson says. “Whereas for other people it’s their diet and environment that’ll trigger diabetes. For many, probably most, it’s a combination.” Likewise, “some people will almost spontaneously get symptoms with essentially normal lives, with no stress or trauma. So they’re just very biologically predisposed. Then there’s other people for whom they need an environmental hit or two, which could be an early childhood trauma which affects the biology of their brain.”
This rejection of dualism and embrace of embodiment — the idea that the brain isn’t separate from the body, but a part of it, and that “mental” and “physical” are tightly interwoven within its pathways — now resonates among many brain scientists beyond the FND niche. “I think these boundaries are artificial,” says Lau, reflecting on the mind-vs-brain question in FND. “They may exist for good institutional and logistical reasons, but we can’t hold on to them like they are absolute rules.”
Spirits in the Material World
Indeed, since the turn of the century, many of the traditional “rules” of neurology have dissolved in the face of contrary evidence. In their place emerges a radically new vision of human selfhood, one in which the mind is not a non-physical substance, but a process that emerges from properties of the brain — and one in which biology and mental life are inextricably, even gloriously, intertwined.
It is to this transformed landscape that FND has returned, this time to a decidedly different reception. Once derisively likened to “malingering”, researchers now say the condition may provide insights into core mysteries of selfhood — that feeling of owning a living body, of being a coherent self, tied to a remembered past and imagined future. It also lends weight to a startling theory: that what we experience as “consciousness” is a kind of simulation created by the brain.
That last part is surprisingly easy to test. For example: one odd feature of the human eye is the physiological blind spot, a dead zone on the retina where there are no photoreceptor cells to capture light. If what you’re seeing right now strictly matches the light patterns that are striking your eye, then you should have two blind spots, one for each eye, right near the center of your vision. Not seeing them? That’s because the brain covers them up. See for yourself.
This blind spot test throws a wrench in the brain’s magic show. Like FND, it demonstrates that the brain is never fully telling us the truth. Instead, evolution has bequeathed us something stranger: not a window to the world, but a kind of helpful hallucination machine. And the brain, researchers believe, generates this simulation using an amazing kind of guesswork called “prediction.”
Prediction solves one of the brain’s great quandaries: that it never gets to directly meet the world. “The brain,” said neuroscientist Anil Seth said in a viral 2017 TED Talk, is “locked inside a bony skull, trying to figure what’s out there.” In its skull-prison, the brain never sees the gleam of the sun, or feels a rushing sea breeze, or smells the salty air. All it has access to are the streams of nerve impulses beaming in from every part of the body. Without direct knowledge of the world, it has to play a game of interpretation. That’s what prediction is: the brain’s attempts to explain what these body-signals mean.
This is why Seth, somewhat controversially, describes all perception as a kind of “controlled hallucination.” We’re never just passively perceiving the world around us, he says. Rather, the brain is actively constructing the experience. Prediction turns ambiguous lines and shadows into cohesive images, airborne pressure vibrations into music, and nerve signals from the body’s interior into hunger, comfort, restlessness, and pain.
But it’s not just about what we feel. Prediction also guides our movements, providing anticipatory control over the body. This is how a professional golfer can hit a ball in one direction, sensing intuitively that it will end up somewhere else entirely. Their brain has learned, through a lifetime of sensory experience, the physics of the ball and the landscape and what it feels like to make a perfect swing. The brain simulates what will happen before it does. Then it affirms its own prophecy by fulfilling it.
The dysfunction of FND might “be thought of as cybernetic: as an imbalance in the complex inner economy of evidence, inference, and control.”
Karl Friston, the most highly-cited researcher in brain science, characterizes prediction as the unifying logic of the brain. In this view, all aspects of the brain — our thoughts, emotions, movements, speech, and even the feeling of having a coherent self are enabled by, and products of, predictive processes.
If that’s true, what we call a “self” — the complex mind-body construct that creates a feeling of “you” — may not be so much a thing that is, so much as a thing that happens. In conditions like hemispatial neglect, brain damage can make a person fail to recognize that they possess one side of their body. Such disorders of embodiment suggest that (at least in healthy people) brain networks use prediction to maintain a dialogue between each other and the body, conjuring a unified self in the way that a jazz performance arises from the overlapping contributions of multiple players. Selfhood is harmony, selfhood is consensus.
Like hemispatial neglect, FND may be a tragic example of what happens when the music goes wrong. When someone has an injury, or experiences an acute mental crisis, their patterns of brain activity change. Defense-related areas, like the amygdala, erupt in alarm. They bombard the brain’s motor systems with signal, producing movements that can’t be controlled; if you’ve ever felt your hand shake after narrowly avoiding a car accident, you have experienced this in passing. The amygdala also amplifies bodily feelings, like pain. This draws attention to the body and gives a person a chance to tend to injury.
Unfortunately, attention also acts as a signal amplifier in the brain — and in FND, that’s gasoline to a fire.
It could be “any sensory stimulus,” says Stone. “Sleep paralysis, migraine aura, just tripping up on the street. Something draws your attention and makes you think, ‘Something’s gone wrong. I wasn’t expecting that.’ That is enough to put the wheels in motion and mangle the software of your brain.”
As the crisis escalates, the brain’s predictions start to shift. The involuntary movements increase, and the person becomes aware that they’re losing control of their body. Anxiety or panic may set in. Then comes the tipping point: the brain’s usual predictions — its old, steady ways of managing the body — no longer hold up against the assault of contradictory feelings (or “prediction error”). The brain abandons its old predictive schema and creates a new one, patterned after the crisis at hand: a man lies in a hospital bed, his arm healed of injury, but still unable to move. The brain learns the injury, absorbs it, and then it re-enacts it, forever.
This is, strictly speaking, a “psychological” process. But does that word really capture the profound physicality of what people experience in these moments, when a body that was once familiar becomes alien? Professor Andy Clark, neuroscientist at the University of Sussex, writes that the dysfunction of FND might “be thought of as cybernetic: as an imbalance in the complex inner economy of evidence, inference, and control.” Carson similarly describes the condition as “the price of how our brain works.” The brain is always constructing a self, always creating and inferring its connections to the body. FND, he says, “exposes the joints” of the process.
The experience of a coherent bodily self comes from “a neural system that mediates a relationship between our bodies, the world, and our conscious experience,” says Dr. Mark Edwards, a neurologist at St. George’s University Hospital who specializes in FND. And “if systems exist, they have to be able to go wrong,” he says. “In a way it would be extraordinary if functional symptoms didn’t exist.” Rather, when the systems that link mental intent and physical response break, “you would expect exactly the kind of problems that people with Functional Neurological Disorder report.”
I’ve learned how tenuous those links can be. Sometimes it feels like my limbs are only loosely attached to my torso, or that I’m “clipping” through the boundaries of my skin. Sometimes the quality of my vision degrades, as if there’s radio interference in my eyeballs. This splintering of self is the defining experience of FND: “I tell people I can see the glitch in the Matrix,” says Claudia, who experiences visual disruptions due to the condition.
There are now some early hints at the role emotions may play in this process. The brain areas most implicated in FND — the amygdala, insula, and anterior cingulate cortex, among a handful of others — are also linked to conditions like depression, anxiety, and bipolar disorder. And listening to people with FND leaves little doubt that emotion can play a powerful role in driving symptoms. But the disorder nevertheless continues to defy simple emotional explanations: there are plenty of people with FND whose symptoms don’t respond to overt emotions, but who are easily triggered by sensory overstimulation, somewhat similar to what people with autism report. And the reason for this emotional-sensory overlap may be embedded in the architecture of the brain itself.
The brain areas associated with FND are part of the limbic system, which are traditionally considered the “emotional” parts of the brain. But according to neuroscientists Ian Kleckner and Lisa Feldman Barrett, there are no dedicated emotion circuits in the brain (Klecker currently leads a lab dedicated to brain-body interactions in cancer control at the University of Maryland. Barrett, a professor at Northeastern University, is a leading scientist in the study of emotion, listed among the “top one percent most cited scientists in the world”).
That’s not to say these systems play no role in emotions (they do), but the networks that produce emotion also support a staggering variety of other functions besides. They regulate the body’s physiology, keeping us from freezing to death or overheating in summer. In a brain scanner, limbic areas light up for psychological experiences ranging from pain and addiction to feelings of empathy. They are necessary for basic psychological functions, like snapping out of a daydream to pay attention to what someone’s saying. Some parts, like the anterior insula, are essentially “on” all the time.
Given that, Kleckner and Barrett write that these limbic areas are better understood as members of a larger “core system” in the brain, which they dub the “interoceptive” network. Interoception is a bodily sense, like sight or hearing, that most people don’t know they have. Dr. Sarah Garfinkel, a neuroscientist at University College London who specializes in interoception research, describes it as how we “experience and sense the inside world.” Interoception is an embodying process; it’s how you feel the pounding of your heartbeat, the ache of muscle fatigue, and the pangs of hunger. It’s also critical to managing your body’s energy budget and coping with physiological stress. It may provide the biological basis for emotion, as well: one current theory is that emotions are essentially the brain’s interpretation of interoceptive signals, that “emotional feeling states arise from physiological changes from within the body.”
These core systems are where emotion, thought, perception, and physiological regulation come together — the literal heart of the matter. And for Kleckner and Barrett, there is one common purpose underlying this system’s myriad abilities: survival. Positioned “at the anatomical and functional core of the nervous system,” they write, “whatever else this system might be doing — remembering, directing attention, and so on — it is also predictively regulating the body’s physiological systems.” By linking emotions to physical states, they write, this network “[dissolves] the artificial boundary between mind and body,” and “[unifies] mental and physical illness.”
These high-level brain networks,¹² where emotion and bodily signals intertwine (sometimes indistinguishably), may explain why people acquire FND from both physical and emotional traumas: because they affect the same systems. “I think it makes perfect sense, fitting in with what this circuitry does,” says Kleckner. “These brain networks strongly respond to the physical requirements of the body, as well as to psychological and social events which are only one step away from a bodily biological requirement.” Through FND, we are now learning more about what happens when these networks of embodiment come apart.
In a recent study, Garfinkel and colleagues found that people with functional seizures showed substantial mismatches between different aspects of their interoceptive body-sensing skills. In the study, people with FND felt they were good at gauging their internal sensations, but when tested, performed poorly. “Evidence is emerging at the moment that there may be impaired interoceptive accuracy in FND,” says Garfinkel. “Maybe they’re not able to sense and use these signals in the same way.”
And being in tune with your body may be quite important. “If that’s impaired, then that can correlate with higher levels of dissociation,” she says. In the study, those discrepancies predicted both how often people had seizures as well as their overall tendency to dissociate. “When you start to get increases and decreases and gaps,” she says, “this can have consequences, potentially, for symptoms.”
There are early indications that mind-body interfacing may have significant implications for treatment. Dr. Aaron Fobian, a psychiatrist at the University of Alabama, recently took a body-focused approach in a pilot study of children with functional seizures. Rather than trying to heal each child’s (potential) emotional trauma in the hopes that FND would improve, she decided to target the symptoms directly. Treatment focused on training children to reinterpret their body signals, and practice movements that counteract the onset of seizures (a technique inspired by similar treatments for Tourette’s Syndrome). The results were so successful that the university’s statistician ended the trial early: 100% of patients were seizure-free after a week, and 82% remained seizure-free two months later.
I don’t want to overstate the evidence: these studies are small, and will need replication. But elsewhere, other researchers using mind-body approaches are also finding avenues of success. Physiotherapy is emerging as an effective treatment for functional movement disorders, giving previously paralyzed people the ability to walk again. CBT can also be helpful, both to decrease symptoms in some people as well as ease the emotional burdens of living with them. And the next generation of treatments may be around the corner: at Stanford University, neuropsychiatrist Dr. Kim Bullock is trialing a virtual reality form of mirror therapy, which she says may serve “both as a tool to desensitize FND patients to their triggers, as well as a possible [means of] sensorimotor reprogramming.” In essence, the program uses a computational simulation of reality to re-program the brain’s biological one.
The Hidden Door
I am part of the first generation of patients to benefit from this new research. Six months after getting diagnosed by the NIH team in Bethesda, I began my treatment at Massachusetts General Hospital, where neuropsychiatrist Dr. David Perez oversees the largest American FND treatment clinic. There are traditional doctors’ offices here, but also rooms that look more like a Planet Fitness, full of yoga balls, workout machines, and cushioned floor mats. Here, Perez helped me begin to make sense of the disorder, and introduced me to a team of physical and occupational therapists. He talked me through the options: movement retraining, cognitive behavioral therapy, “sensory diets” to manage overwhelming stimuli. On his advice, I tried all three.
I’m glad no one suggested it would be easy. Even as I worked through the therapies, I developed new symptoms, including a persistent tinnitus that still rings in my ears today. Fortunately, the effort still paid off. One day, while experimenting with body scan techniques, I stumbled upon a method that helped me start to regain control. I had been in bed for most of the day, in the throes of searing back pain, when I noticed that my shoulder muscles were subtly flexing, the way one might brace oneself to bang open a door that has frozen shut. They were tiny movements, almost invisible to the naked eye, but I wondered if they might be linked to the pain in some way.
Then the image of my shoulder banging a frozen door appeared. I thought: this is a protective response. My body is trying to brace me for something. Experimenting a little, I found that while I couldn’t control the muscles directly, I could shift my mind out of its defensive clench and into something more open and fluid — the way one might accept and even welcome an impact when one has planned for it, like exuberantly whacking a punching bag. When I did this, the muscles released, and the pain disappeared. It felt like the scene in The Princess Bride in which Inigo Montoya discovers the passageway to a hidden laboratory by leaning on a tree.
Door after door opened. It took time and many false starts, but my symptoms began to stabilize, and then to recede. I found I could walk for longer, work more consistently, and felt less pain. When a limb started to twitch, I’d pull my attention off it, occupy myself with other movements, or moderate my pain with deep breaths. I came back to balance with my body: in 2018, I had over 150 days of headache and was hospitalized multiple times. In 2019, I had three, and recovered at home on the couch. With the storm clouds of pain and physical trauma receding, I began to enjoy even banal experiences more. The first time I did a full sink of dishes without spasming, I became so giddy I felt like I was high.
To Be Given a Body
Meanwhile, the embryonic community of FND activists has undergone an even more unlikely transformation. The so-called “hysteric” of yesteryear held almost no power; they were treated, medically and socially, however society saw fit. They had no platform from which to speak, and indeed were often told they were the cause of their disability.
But that too has begun to shift. People with FND have harnessed internet platforms to tell our stories and advocate for disability justice. Meg, who experiences functional seizures and memory loss, shares candid footage of life with FND to 850,000 followers on TikTok. Others discuss experiences of stigma, their own techniques for recovery, or their evolving understanding of how FND manifests in the body. Inevitably, to follow these voices is to see the “hysterical” stereotypes fall away, replaced by the familiar faces — local news anchor, college art student, devoted parent — that people with functional disorders have always been.
Whether this will translate into lasting social acceptance remains to be seen. Is our society prepared to embrace a more mature understanding of brain-body illness? Are we ready to honor the experiences of people with FND, in all their poignancy and complexity?
Stone sees reason for hope. “It’s interesting how things can change quite quickly, if society changes its predictive model,” he says. “Is society ready to think about functional disorders? It might be, I think. Attitudes to mental health are changing quite rapidly, and we’ve seen how attitudes to other conditions like autism have changed. So I’m going to remain optimistic.”
When I began writing this, I still agonized about carrying the shame of FND. In an early taste of prevailing attitudes, someone close to me suggested I was a “fucking hypochrondriac.” There are countless similar stories of people with FND being treated as if they are at fault for being ill.
Maybe at some level I knew that this is what a “conversion disorder” diagnosis would mean. Perhaps that’s why, when I was first diagnosed, I felt flooded with deep shame. I dreaded that my friends would think I was faking or being dramatic. Maybe, I thought, they’ll think I just can’t handle stress. Maybe they’ll think there was no disability, only elaborate self-deception. I worried that they’d no longer see me as genuinely disabled, just as messed up.
But talking with other people with FND helped me understand: these are common feelings, and I need not carry them alone. They inspired me to track the story of FND from the beginning and to open up to the people in my life. And I did: I told my friends and loved ones what I found digging through musty libraries, interviewing researchers, and speaking with the people quoted here. I told them how it felt that I could no longer access my limbs, and the pain of not being able to tell anyone why. And despite my dread, those who saw me lose ownership of my body did what I needed most: they believed me. Some shared their own struggles with anxiety and chronic pain. No one told me I wasn’t really disabled. No one told me I wasn’t really hurting.
Time in the FND world helped me cast a new eye on my own history, too. When I participated in a research study on those infamous “adverse life events,” I realized what I’d considered typical experiences might not be. My childhood, while bolstered by a tight-knit family and privileged in many ways, was also marred by intense bullying. I was often in fights, and in my teenage years struggled with depression and anxiety. As an adult, I saw a stranger commit suicide, and a few times narrowly avoided being shot. These things are stark fact — and yet they were also separated by long years in which I was happy, sometimes unhappy, and often in between. The truth is, in my adult life before FND, I mostly felt fine. But I have also come to see how distant events — some removed by years or decades — could set the stage for the devastation that followed. With every experience, the neurons fire, the chemicals release, the dendrites branch: everything leaves an imprint on the brain.
My recovery is not yet complete. Every day I brush against some boundary my body can’t yet pass. There are still things I long to do, like go for a long hike in the woods, that I can’t. The symptoms return when I get sick, transforming a cold into something much worse. I am not “cured”, and may never be. But I have improved nevertheless. I am stronger and feel more grounded in myself. And I’ve realized I don’t have to have a perfect body to have a good one.
And then there’s this new feeling. I have seen a little of the magic at work, the subtle connections that bind body to mind — indeed, that generate me — and I am astonished. What a gift, to be and be created by this strange prediction machine! This is what FND, with all its glitchy gesticulations, ultimately revealed to me: when it “exposed the joints” of my world, it also highlighted its stunning design.
Were it not for my admittedly faulty brain, I would never feel the soft lips of my lover; or the pleasant jolt in my bones of the train as it lurches; or the breeze through the leaves in the morning. And sometimes there are moments of amazing normality, when I’m not in pain or glitching out, and I feel a sudden rush of ecstasy like gold in my blood.
Was all this real, or a simulation? Shall we say both? My brain predicted it, and somehow it came into being. It brought me agony and despair, long nights in the hospital, the feeling of being wrenched from my body like a passenger through a windshield. But then, too: the warm dusks that linger for hours in the summer, the otherworldly frog chorus in the distance, the burst of strawberries like fireworks on my tongue. Maybe I’ve lost control of my hallucination somewhat. Let me ask you: should I be ungrateful? Every moment I’m living, every flavor and texture and heartbeat and hum, every kiss and homecoming, every night in the arms of the one I love — all of it I receive through this.
If that’s not magic, you tell me what is.
End Notes
- Names of some people with FND have been changed to protect their medical privacy.
- Today, most people with the condition prefer the term “FND.” Many consider “Hysteria” a slur that delegitimizes real suffering. I use the term here only in order to highlight how medical observers have attempted to conceptualize this particular cluster of symptoms over time, and the social consequences that followed.
- Quoted in Micale, “On the ‘Disappearance’ of Hysteria: A Study in the Clinical Deconstruction of a Diagnosis”, 1993
- See Briquet, P. (1859). “Traité Clinique et Thérapeutique de L’hystérie”
- See Micale, M. (2008) “Hysterical Men” p. 259
- Some scientists later convincingly challenged Slater’s conclusions, but at the time, Slater’s view won out. Given the advent of functional neuroimaging, more sophisticated statistical techniques, and advances in clinical examination, the consensus today among neurological experts in the US, UK, and Canada is that FND is quite real.
- In one spectacular academic fraud (only recently uncovered), the historian Rachel Maines falsely characterized Hysteria as a form of sexual repression that doctors treated with vibrators. Such a claim might have triggered outrage had it been directed at, say, people with cerebral palsy, but fortunately for Maines there appeared to be no hysterics left to offend.
- That’s consistent with how some doctors talk about us when they think no one is looking. In a satirical medical blog, the pseudonymous “Dr. Slicy” depicts a fictional FND patient faking illness and intentionally urinating herself for attention. “Doctor Weeeeeeeeise, I’m having a seizurrre for real right nowwww, come seeee!”
- This despite the effort of figures like Charcot to stress that Hysteria was not inherently female. Invoking the masculine stereotypes of his own day, he wrote, “That a strong and vital workman, for instance, a railway engineer, fully integrated into the society and never prone to emotional instability before, should become hysteric — just as a woman might — this seems to be beyond imagination. And yet, it is a fact — one that we must get used to.”
- Which is to say, they have acquired a functional disorder which is isolated to one of their multiple personalities.
- Stone and Carson also advocated for a shift away from the “Conversion Disorder” label, as FND was known in the late 20th century, in favor of Functional Neurological Disorder — intended to be a more neutral term that acknowledges brain dysfunction without necessarily endorsing an emotional “conversion” process, a la Freud. That change was adopted in part in the 2013 DSM-V classification guide, but a complete divorce from the terminology of “conversion” in the DSM remains incomplete.
- The “Interoceptive Network” (IN), as described by Klecker and Barrett, incorporates two more widely-recognized brain networks: the Default Mode Network (DMN) and the Salience Network (SN). While not all scientists agree that grouping these together, as Kleckner and Barrett suggest, is the most effective way to understand their function, the evidence base for what the DMN and SN do individually, and their relationship to each other, is massive. Kleckner and Barrett drew from this research corpus to argue that “allostasis”, or the body’s predictive response to challenge, is the necessary, central constant that underlies the IN’s multiple other functions. It’s always keeping the body alive, and anyway it’s hard to have experiences of emotion or memory if you’re dead.
- A clarification on this paragraph in light of post-publication feedback: First, “How can a single disorder be triggered by both COVID-19 and its vaccine?” refers to FND, not to Long COVID or vaccine injuries like Guillain-Barré syndrome.
It is not intended to convey that Long COVID is synonymous with FND, but rather (as later paragraphs elaborate) that FND can be triggered by many types of disruptive bodily events, among them injuries, surgery, trauma, and viral illness — and that high-level, multi-function brain networks may provide a convergence point at which phenomena that medicine has traditionally described as either “physical” or “psychological” may jointly alter brain function to the detriment of health.
This article does not specifically address Long COVID, except to cite a single study which states that “functional symptoms may coexist with the long COVID symptoms and may improve with targeted interventions.”
This article likewise doesn’t address vaccine injuries — meaning immune-mediated neurological damage — but rather links to a study in which two people developed FND (a disorder with a pathophysiology distinct from disorders like GBS) after being vaccinated.
Tim Nicholson’s quote runs thusly: “The debates raging on Twitter and in Youtube comments are, ‘It’s either real — physical — or it’s faked’; and it’s not either of those things,” says Dr. Tim Nicholson, psychiatrist at King’s College London. “It’s functional. It’s a different thing altogether. There’s a third option.”
Two points of clarification here. First, Nicholson was referring exclusively to FND in this quote. My interview with him was conducted on June 13, 2019, several months before the first cases of COVID-19 were reported. For that reason, he could not have been referring to COVID-19 at that time, as neither of us knew it existed.
Second, I understood Nicholson’s characterization of “real, physical” vs “faked” to be a reference to commonly-held folk views that all physical illness — all illness which disables the body — must be attributable to traditional disease processes, like Parkinson’s and MS. What else could there be?, the interlocutor asks. On the opposing side, others (including some physicians who should know better) see unusual symptoms in YouTube videos of people with FND and declare them to be “fake.” Nicholson’s point, as I understood it at the time and have confirmed with him since, is that FND is a “third option” — a disorder with both neurological and psychological dimensions, which is an outgrowth of intrinsic properties of the brain, which produces genuine and often severe disability but which is nevertheless categorically distinct from conditions like Parkinson’s.
Nicholson agreed to be interviewed for this story, but ultimately any insufficiencies of framing are solely my own. I hope that readers will engage with the entirety of the piece, which is intended to convey that I think FND is quite real, that it has a biology which matters, both for treating FND as well as for understanding the brain generally, and that it has affected my life and many people’s lives in profound ways.
For a complete list of the historical, scientific, and social works that formed the research basis of this article, see Cadenza for Fractured Consciousness: The Bibliography.
