Earlier this year (2020) I had the pleasure of preparing a video for FND Hope, as part of their virtual conference marking World FND Month. It had the aim of explaining some of the brain science of FND to patients who might not be familiar with it.
Getting an FND diagnosis can be a confusing, unnerving, and isolating experience. So I tried to explain it in a way I think could have helped the me of a few years ago. I hope you find it helpful too.
In reflecting (ha!) back on this some months later, it occurs to me that at the moment of diagnosis, both patient and doctor are at a disadvantage. The doctor has to explain a disorder without accidentally giving the impression that FND is “all in your head” (which I imagine must be hard to do), and the patient usually doesn’t have enough time with the doctor – 15 minutes is not enough – to really understand what FND is, how it affects the body, and what it means for you as a person.
If nothing else, I hope that as FND becomes more well-known, the idea that people are just “imagining symptoms” or are “just stressed” can be laid to rest. While there is evidence that mental processes like emotion and attention can intersect with FND in important ways, you can’t simply think yourself out of FND, and most people don’t just “get more FND when they get more stressed.” The disorder just doesn’t work the way that it’s so often imagined.
Instead, FND is something both more subtle and more severe, which challenges our traditional categories of what “neurological” and “psychological” mean. It’s just as accurate to call FND a sensorimotor disorder as a “psychological” one, and while it doesn’t act like many other traditionally “mental” conditions (like depression or schizophrenia), there’s also good evidence to show that how we use our brains – our thoughts, emotions, behaviors, and expectations – can change the course of FND. The fact that FND refuses to be easily sliced into either neurological or psychological categories is, I think, the central point I wanted to get across with this video. The existence of FND itself implies to me that the brain works differently, in disease and health, than most people – including many doctors – would imagine.* And indeed, research from several areas of brain science (including interoception, embodied cognition, and predictive processing) imply that FND likely does have much to teach us about the brain.
*(The fact that people with other “structural” neurological disorders, like MS and Parkinson’s, often develop FND with no prior history of mental illness, might be an example of the mind / brain distinction falling apart under closer scrutiny. And what are emotions, after all, other than an enacted function of the brain, just like everything else the brain does?)
If we can stop trying to explain away the things it’s trying to tell us.
featuring appearances by androids! sex toys! and Sigmund Freud!
a surprisingly safe for work post
Functional Neurological Disorder is a brain condition that has been around for a long time, and scientists have been struggling to make sense of it all the while. It has gone by older names too, including Conversion Disorder, and before that, Hysteria.
(People who have FND generally detest this older labels and much prefer the term FND, by the way)
but the question remains: why have so many attempts to make sense of “Hysteria” gone awry? What’s so difficult about it? Does it even exist?
This post, originally published in 2019, is my summary of Hysteria history and why I think we are now poised to understand functional disorders more properly for the first time. It is the result of about a year spent combing through sources ranging from the Handbook on Clinical Neurology to scholarly work on ancient Greek gynecology (seriously) and early 20th century “war neuroses.” I would like to take a moment to thank the librarians and archivists who assisted with finding sources, or alternately, didn’t notice that I wasn’t really supposed to be there. Enjoy!
Why have attempts to understand Functional Neurological Disorder (FND) historically gone awry? Here’s my stab at an answer. I’m your host, an FND patient trying to make sense of things.
I’d like to break out some of the specifics of this argument in a more polished way soon. But for now here’s a whirlwind tour. Let’s start with the TL;DR:
I think honest failures to understand FND have been failures of prediction + construction.
That is, FND can appear to be variable and indefinite, which makes it difficult for our brain’s concept-building apparatus to get a hold on what it is.
A look at the historical record suggests (to me, at least) that when faced with this ambiguous data, most observers typically either 1) fell back on their prior beliefs, like gender stereotypes or prevailing theories of the brain, or 2) failed to construct a conceptual category that adequately fit the data.
Which either resulted in a skewed image of FND, or an inability to perceive it at all.
This suggests that the study of FND has something to tell us not just about the dynamics of a specific brain disorder, but also about how our brains attempt to make meaning out of a phenomenon that won’t play by the rules.
First let’s quickly dispense with the nomenclature:
I think FND is the best label for the disorder we’re talking about. But right now we’re also interested in how people throughout history perceived this thing, which has been variously called hysteria / conversion disorder / FND. So in the discussion of any historical period we’ll use whatever word they used at the time.
OK, off we go! We begin around the year 400 BCE.
In many texts, the first inaccuracy you’ll read about hysteria is the first sentence.
Authors often say that the Ancient Greek doctor Hippocrates coined the term hysteria. My Ancient Greek is a little rusty. Let’s refer to Helen King’s work on the subject!
1) Did the ancient Greeks have a thing called hysteria? … no
2) But did they have the hysteria symptom-set we know today under another name? … also no
So how did a disorder we now know is neurological get mixed up with this whole Ancient Greek uterus thing? The process was extremely complicated and is distressingly difficult to describe. My best analogy: it was a bit like a turducken.
Here’s how: A few hundred years AFTER Hippocrates, Greek authors wrote of a condition called “hysterike pnix” (suffocation of the mother). This Pnix idea was assembled out of a number of symptoms described earlier, in Hippocrates-era texts.
So pnix at this stage was a bit like a chicken shoved inside a duck.
Then later Roman writers appear to have ALSO incorporated aspects of the hysterika, which sounds like “hysteria” but isn’t (they were purely physical womb disorders). And they STILL called the entirety of this new thing hysterike pnix.
I’d suggest that the ancient Greeks probably didn’t have the ability to perceive hysteria as its own thing, because they didn’t have the methods of classifying health problems that we do now.
The Greeks were smart, but the investigational + conceptual tools needed to understand hysteria just weren’t in place yet. See?
Anyway, the new lumpy multi-bird version of hysterike pnix proliferated partly due to the famed Roman physician Galen. But eventually Rome got a little winded from running the world, and Fell. Pnix texts within the Roman Empire were lost, but copies survived elsewhere, especially in the Arabic world.
We now fast-forward through 1,000 years of history in which nothing important happened. 😜
Cue the merry lute music! It’s time for the Middle Ages!
Everybody has forgotten about the Ancient Greek stuff. Now, people with hysteria* are considered to be witches, or demon-possessed. Sometimes people standing nearby are blamed for it.
(*here meaning, “people with functional symptoms”)
Men, who ran the world, did not really appreciate witches during this time. Centuries later, they would be feverishly ‘liking’ their brooding selfies on Tumblr, but that was still to come. Mostly at this point ‘witches’ were burned or hanged or killed in other gruesome ways.
A bad time to be a hysteric. Moving on!
Eventually hysteria texts returned to Europe from the Arabic world. By the 1600s, European physicians had rediscovered the idea of pnix, and even testified about it at witch trials – as a “natural” explanation for seizures.
Tellingly, there’s no one moment where “it” happens. Hysteria doesn’t ever really seem to stride onto the historical stage. But from here through the the early 1800s, you can see hysteria – real hysteria, the disorder we now call FND – slowly emerging from a dark background.
The new hysteria diagnosis, which encompasses dozens of previously separate disease labels (including pnix), was constructed in a time of rapid medical advances and the emergence of a new field: neurology! That might sound like I’m saying neurologists made it up. That’s not what I mean.
Scientists were starting to learn things about the nerves and brain, and it wasn’t long before neurological theories of hysteria started challenging the old uterine ones.
Then we hit the 1800s. Prime-freaking-time, baby! The golden age of hysteria!
In the early 1800s, physicians argue over the borders of the hysteria diagnosis, but it nevertheless gradually achieves form. By the 1850s you can see the details of what we recognize as FND today, and it’s the subject of impressively large studies.
It’s also during this time that the myth of Ancient Greek hysteria is formalized, a combination of doctors borrowing glory from Hippocrates and also a mistake because some guy wrote a thing in a book margin one time.
Then comes perhaps the greatest interrogator of hysteria so far: Jean-Martin Charcot.
Charcot is today called “the father of modern neurology” and he was quite famous in his time too. He gave classic accounts of things you’ve heard of, like MS, Parkinson’s, and ALS. He also brought us some of the clearest, most extensive investigations of hysteria yet.
Charcot formulated an explanation for hysteria: a “functional” or “dynamic lesion” that could move around the brain + cause symptoms based on where it went. Not scientifically correct, but not a bad metaphor for how functional disorders over- or under-connect different brain areas, really. He also showed symptoms could be extinguished with hypnosis.
So Charcot got many things right but perhaps elided something important: the emotional perspective and the prevalence of early life trauma. The young neurologist who briefly studied with Charcot didn’t miss the trauma thing though.
His name was Sigmund Freud.
Freud’s book “Studies on Hysteria” made hysteria UBER-FAMOUS and eventually birthed the whole field of psychoanalysis. Ta-da! This was very fortunate for the couch industry.
Freud noticed that his patients seemed to have early life experiences that related to their symptoms. He reconceptualized hysteria as a disorder of the mind rather than the brain, and proposed a new theory for it:
When a person’s trauma (or imagined trauma) from childhood is repressed, it is unintentionally “converted” from a psychological problem to a physical symptom.
“The splitting of the consciousness … [is] a deliberate and intentional one,” [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.”
– Breuer and Freud, “Studies on Hysteria”
In his view, unearthing the trauma and addressing it will make the symptom go away.
But what if you have these symptoms but don’t have early-life trauma? You see the problem, right? At first Freud held to the belief that all of his patients must have early-life trauma, and it remained merely to be dug up. But eventually, he seems to realize, given the varied life situations of his patients and how common hysteria was, that everybody couldn’t have been sexually abused by their parents. So he started reformulating, without ever abandoning his belief that trauma must be at the root. Over the course of his career he conceptualized trauma as real or imagined, actual or symbolic, but however he thought of it, the answer seemed to be always to keep digging. Then he kind of dropped hysteria and moved on to other things.
Freud’s view of hysteria became the dominant one for much of 20th century psychiatry, and is where the term “conversion disorder” comes from. Au revoir, Charcot!
And so hysteria itself underwent a kind of conversion-in-reverse, transforming in the public mind from a physical (neurological) disorder into a psychological one.
Freud made an important contribution in highlighting a role for childhood trauma, and that for some people recovery was possible by talking. But the Freudian paradigm also stamped every hysteria patient with the label of trauma (even when they didn’t have it), removed it from the purview of neurology, and kicked off 100 years of unscientific “symbolic” theorizing (also known as “making stuff up”). 🤮
So intertwined was Freud with hysteria that when Freudianism was finally overthrown in the late 20th century, hysteria kind of went out the window with it.
So for a couple of reasons, hysteria as a neurological diagnosis goes into decline through the early 1900s and was in many ways on life support by the 1960s.
The very last person we should talk about regarding how hysteria “died” is Eliot Slater: the hangman of hysteria! He wrote “The Diagnosis of ‘Hysteria’”, which described the H word as “not only a delusion but a snare.“
Slater argued that what people called hysteria was really a bunch of other disorders in a trenchcoat, which incompetent doctors mistakenly believed to be one thing. ️
Slater seems to have either convinced or scared the daylights out of neurologists, who now mostly conceptualized functional symptoms in psychiatric terms or simply didn’t make a diagnosis. I would certainly never suggest that some neurologists post-Slater withheld accurate diagnoses for fear of being labeled incompetent, even though that’s what I think.
So pour one out for hysteria. Between Freud + Slater, hysteria as an idea was mostly gone by the 1970s. It lived on as a controversial psych diagnosis, was renamed conversion disorder (CD) in the 1980s, and seemed to be mostly a relic of history.
But what about the sex toys? you wonder. Yes, it’s finally sex toy time! 🤠 Wasn’t “hysteria” in the 1800s actually just women’s pent-up sexual frustration? Didn’t clueless doctors “fix” it with vibrators?
No! This claim comes from the book “The Technology of Orgasm” by Rachel Maines. Maines’ account of hysteria is – and I’ve chosen these next words carefully –
FND traipses gaily back and forth across the traditional boundaries of neurology + psychiatry, but that’s fine because there are new ways to understand it.
Enter the Androids!
(spoiler alert: the androids are us)
Here’s a thought experiment: if you were going to come up with one theory, one guiding principle for how everything in the brain works, what would it be? Hard question. Maybe it’d help to think about what kind of system could guide a human-ish creature: an android!
There’s a general theory of the brain called predictive processing.*
Many scientists think some version of this fits the bill – a system that’s well-equipped to help the brain help us survive.
* (I’m really thinking here of a variant of PP called Active Inference, but that’s outside the scope of this post).
After all, your android would need to be able to take care of itself. It needs to be able to learn, and navigate the world, and monitor the state of its own body. It needs to be able to make decisions about what to do next based on the needs of the body. And ideally it would be good if it could have at least a little insight into its own processes too. How can all these requirements be met? Through a flexible prediction system, which ties all these possibilities together and makes the whole brain-system work coherently.
The idea of predictive processing is that “predicting the next thing to happen” is the overriding logic of the brain. In order to keep the predictions on-track, the brain maintains an interplay of “prior” predictions (which the brain generates) against incoming sensory data (that is, nerve impulses coming in from the world). The difference between a prediction – what your brain expects – and the incoming signal from the world is called “prediction error.”
That’s what we might call “a cybernetic view of the brain”: that we are prediction-driven, in control of only a part of what our brains do, and that the brain’s predictive systems are intimately intertwined with the body specifically because it is tasked with successfully predicting our body’s way to long-term survival.
If PP is right, then when sensory data is really strong and insistent (like when you whack your hand with a hammer), it can override your prior “everything is fine” prediction. Your brain updates your new prediction to OW OW HECK! and THAT’S what you experience – your brain’s ongoing prediction of pain + immobility.
One of the new theories of FND (and it’s not the only one) is that FND patients develop maladaptive predictions that are REALLY STRONG and so aren’t easily dislodged. We get stuck in a harmful pattern. The hammer bangs your hand forever.
By the way, it’s worth noting that “emotional” parts of the brain like the insula and the amygdala appear to play key roles in prediction – and that besides emotional processing they also do many other things as well, like monitoring the state of the body and our environment. The multi-purpose nature of these brain areas explains why FND can be caused by physical or emotional events, or both. They affect the same systems.
Finally, predictions may also determine not just WHAT we perceive, but WHAT KIND of thing we perceive it as. There’s evidence that the brain generates these conceptual categories, kind of like labeled bins that experiences go into, based on prediction.
If you don’t have a category that fits an experience well enough, if your brain can’t construct a good enough category, you can’t fully perceive it. It’s called experiential blindness.
And so, rounding third base on this ridiculously long introductory post,
this predict-y construct-y cybernetic view of the brain provides a new way to consider how the brain goes wrong in FND. But it might also furnish a reason why the process of understanding FND so often goes wrong: it’s a problem of prediction and construction!
The Greeks couldn’t see hysteria because they couldn’t build a conceptual category for it.
Medieval and early modern observers binned it conceptually as witchcraft, and in some cases the “prior” belief was very strongly held:
When we did acquire more neurological background, hysteria was still hard to “see” clearly because it was variable and hard to differentiate from other disorders. It also wasn’t visible upon autopsy, which messed with neurologists. So the walls of the “hysteria concept bucket” were fragile, barely constructed, and prone to collapse.
Sexism and gender stereotypes have played a central role in the history of hysteria too. Women tended to be over-diagnosed with hysteria, and men under-diagnosed. It’s even been wrongly considered an exclusively female disorder. Why? Because of a strong social prior:
“Women are the emotional ones, men are stoic and rational.” I don’t know if you’ve ever met men, but this isn’t true.
But when you are looking at a disorder that seems to give you only diffuse and imprecise evidence as to what it is, your constructive pattern-loving brain can impose upon it whatever it prior beliefs are at hand. And the patriarchy prior was ready to go.
Charcot, who thought of himself as a photographer, saw hysteria with amazing clarity in some ways. But when he erred, even he did so in the direction of his priors. He thought hysteria was hereditary because he thought all neuro disorders were hereditary. And biasing percepts in the direction of prior experience is consistent with both predictive and constructive accounts of the brain.
There’s evidence that expectation played a significant role in how Freud constructed his idea of hysteria too. At a key moment in the formulation of his seduction theory of hysteria, he writes:
“One of these cases gave me what I expected (sexual shock – that is, infantile abuse in male hysteria!)”
– Freud, to Dr. Wilhelm Fliess, private correspondence Oct 1895
Then in the subsequent tussle of Freud vs Neurology, we briefly see a kind of binocular rivalry effect. Freud’s image of hysteria won, and it ceased to be a neuro diagnosis because the concept he constructed seemed to fit better… until it didn’t.
Freud’s conceptual image of hysteria was compelling, but in the end it couldn’t hold up. And without the Freudian construction, and no neuro concept to replace it with, and with Slater’s voice still echoing in the halls, a new prior arose:
“There’s no such thing as hysteria.”
And so there wasn’t, in most people’s minds. All that was left was diffuse prediction error: the large numbers of people showing up to neurologists’ offices with the same unexplained symptoms. Late 20th century neurologists, bereft of an adequate concept of FND, failed to perceive it in the 15-30% of affected patients that sat in front of them every day. Patients bounced back and forth between neurologists, who could find nothing physically wrong with the person, and psychologists, who often could find no psychological cause for the symptoms, ad nauseum. Both saw but failed to see.
Feminist theorists viewed Victorian hysteria through their own set of priors. Some drew insightful parallels to contemporary somatoform disorders. Some rightly noted how the word is still wielded in sexist attacks on prominent women. None that I know of argued for the continued existence of hysteria as its own cohesive thing.
*(see bottom of post for a list of contributors to the new FND studies)
So that’s my take: judgments about FND often go wrong because of processes of prediction and construction. These processes are part of the brain’s global mandate to create perception and meaning probabilistically.
Part of the constructive theories (if I understand right) is that we observe incomplete data about a thing and then our brain fills in the rest based on prior knowledge.
I think that’s what often happens when docs meet FND patients: they observe necessarily limited data (patient w bilateral arm weakness and history of trauma) ✔️
and they recruit a larger brain pattern to provide a label that best fits (“it’s a mental disorder!”) because some features seem to match that, and because others that might suggest the “it’s a neuro disorder” category, like “true, consistent” weakness, don’t seem to be present. ✖️
But obviously there’s another possibility. Which is that both neuro and psych, which are themselves concepts created by humans, are each unable to fully capture the entirety of the FND phenomenon.
Which is part of why it’s hard to make sense of FND. We’re used to the either/or: is it a mental disorder or a “real, physical” one? A brain disorder or a problem of the mind?
Sometimes the question isn’t “Which existing bin should this thing go in?” It’s “Are any of these labels even good enough? Do we need to combine concepts? Do we need to construct a new one?”
The complexity of FND makes it very easy to get things wrong. I acknowledge that I too may have erred here and so joined the illustrious history of Screwing Things Up re: FND. But I hope this at least prompts some kind of productive conversation.
So after all this time will we start getting FND right? I don’t know, but it looks hopeful. The new research helps a lot. Patient advocacy groups like FND Hope too. But it’s too early to say; we don’t know what’s going to happen next.
FND is a real and miserable condition many people live with. It also represents something else: a steep challenge to our constructive powers, to our ability to use prediction to make sense of data that appears to be much more noise than signal. It’ll be informative to see how we choose to deal with that challenge!
So yeah, that’s it. If you read all the way to the end, thank you. And feel free to let me know what you think! Cookies will be provided in the lounge.
*some researchers that re-ignited the study of FND: Markus Reuber, Jon Stone, Alan Carson, John Mellers, Charles Warlow, Michael Sharpe, Michael Trimble, Maria Ron, Tony David, Simon Wessely, Mark Hallett, Anthony Lang, Stanley Fahn, Joseph Jankovic, as well as the contributors to “Contemporary Approaches to the Study of Hysteria.”
Thank you, Drs. Jon Stone and Tim Nicholson, for your feedback on this idea, additional historical perspective, and the list of researchers above.