TikTok Tics and Mass Sociogenic Illness

Or: Things We Made Up, Part 2

As a kid I remember reading in Ripley’s Believe It or Not about the “laughing sickness” in Tanganyika in the 1960s where a thousand people, mostly teenage girls, laughed uncontrollably for months. I read about “dancing mania” in the Middle Ages, where hundreds of people at a time would be seized by an uncontrollable urge to dance. This wasn’t all fun and games. Schools shut down. Sometimes entire bridges collapsed or the dancers died from exhaustion.

Those are a couple of the most famous examples, but there is no shortage of such stories: In the 14th century, a nun in Northern France started meowing like a cat. Soon all the other nuns were meowing as well: “they even organized afternoon meowing sessions that lasted for hours.”

In the 15th century in Germany, a nun began biting the other nuns. “Over the course of the next several days, all nuns at the convent, along with an unknown number of women from the nearby villages, became ‘infected’ with the biting frenzy. . . . Fortunately, the biting epidemic apparently ended when the frenzied nuns became overly exhausted.”

To a kid, stories like this seemed strange and mysterious—maybe even supernatural—but certainly not related.

Mass Hysteria by Any Other Name…

But the scientific consensus is that conditions like this are related. The name has changed a few times over the years. These events used to be referred to as “mass hysteria” or sometimes “epidemic hysteria.” Then the word hysteria fell out of favor, and the current terms are mass psychogenic illness (MPI) or mass sociogenic illness (MSI). Whatever we call them, these events are viewed as social contagions.

You can read some more details about the history and nature of these conditions here. Similar to the culture-bound syndromes that we looked at last week, MSIs are very real to those who experience them: no one is faking. After all, who would willingly dance themselves to death, or bite other humans until they collapsed from exhaustion? Can you imagine how painful and exhausting it would be to laugh for months?

These conditions are real to the sufferers, but they are also psychologically created. There is nothing physically wrong with the sufferers, and they pick up these behaviors from each other, without being aware they’re doing it.

The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) does not have a specific diagnostic category for MSI, but an earlier version of the DSM (DSM-IV) included this verbiage under the description of Conversion Disorder: “In ‘epidemic hysteria,’ shared symptoms develop in a circumscribed group of people following ‘exposure’ to a common precipitant.” That language is gone from DSM-5. That’s too bad, because these phenomena still exist, they are still in psychiatry’s wheelhouse, and they need to be called…something.

It may seem strange that a well-documented, well-established psychological condition has no place in the official APA diagnostic manual. Possibly that’s because the DSM focuses on diagnosing (and billing insurance for) individuals, and there’s no perceived need to describe group phenomena. On the other hand, the individuals they see are sometimes affected by group phenomena.

TikTok Tics: Not Tourette’s

Last week I came across this article in Brain, written by Kirsten R. Müller-Vahl, Anna Pisarenko, Ewgeni Jakubovski, and Carolin Fremer: “Stop That! It's Not Tourette's but a New Type of Mass Sociogenic Illness.”

In recent years there have been many outbreaks among teens with symptoms similar to Tourette syndrome.

Tourette syndrome is a neurodevelopmental condition which usually begins in younger children. The kids experience multiple motor tics, and at least one vocal tic. Contrary to the stereotype in the popular imagination, which involves a lot of socially inappropriate shouting of curse words, most cases of Tourette syndrome are fairly subtle, with the kids doing a lot of repetitive blinking, sniffing, and throat clearing.

According to Müller-Vahl and colleagues,

“…recently, in several countries including Germany, UK, US, Denmark, France, and Canada…, an increasing number of videos was released on social media platforms such as YouTube, TikTok, and Instagram showing people, who claim [to be] suffering from Tourette syndrome … while in fact most individuals have… symptoms only resembling Tourette syndrome.”

The authors, who live in Germany and work with Tourette syndrome patients, go on to describe what they’d seen locally. In February 2019, a young man named Jan began to post many YouTube videos of himself exhibiting tics. While the authors were able to tell that he indeed seemed to suffer from a mild form of Tourette syndrome, they also noticed he displayed “a countless number of movements, vocalizations, words, phrases, and bizarre behaviors that he claims are tics, but are clearly [not]. Tourette experts can easily tell the difference.”

Jan soon had millions of subscribers to his YouTube channel and hundreds of millions of views of his videos. He sold merch. He even had a mobile app featuring his most “popular” tics. According to the authors, “Over the last two years, a remarkably high number of young patients has been referred to our specialized Tourette outpatient clinic presenting with symptoms closely resembling the ones Jan Zimmermann shows in his videos.” In fact, the patients’ symptoms would change whenever a popular new video with new “tics” was released.

You should read their entire article if you want more detail, but suffice it to say that these young patients, who perceive themselves to have Tourette syndrome, and who seem to have difficulty controlling their “tics” (just like actual suffers of Tourette syndrome do) are easily diagnosed by experts as not having Tourette syndrome at all.

There is nothing physically wrong with them, even though they seem sincere in their belief that they have this tic disorder. Müller-Vahl and colleagues have determined that these kids have an MSI, like the meowing nuns in the 14th century, the biting nuns in the 15th century, or the Tanganyikan school girls in the 20th century.

The authors also mention in their articles an earlier outbreak of a Tourette-like illness in New York in 2012:

“In LeRoy, New York, in 2012, a ‘Tourette's epidemic’ occurred in a high school affecting 19 adolescents with sudden-onset ‘tic-like behavior.’ Speculations about the cause of this ‘LeRoy outbreak’ as well as intensive media interest initially led to further increase before symptoms rapidly declined once the diagnosis of [mass sociogenic illness] was established.”

So, consider that for a moment. With increased attention, the symptoms increased. When the source of the symptoms was diagnosed as psychological rather than neurological, the symptoms “rapidly declined.”  Müller-Vahl and colleagues go on to say,

“Although schools are the most frequent settings for MSI outbreaks, already at that time, influence by social media had been suggested and the treating neurologist David Lichter commented: ‘This mimicry goes on with Facebook or YouTube exposure. This is the modern way that symptomology could be spread.’ ”

Lichter was right, and then some. Not only could the symptomology of an MSI be spread in this way, but in Germany, by 2019, it seems that the YouTube exposure was all that was needed. Whereas in the past people needed to be clustered in the same place to affect one another (the same convent, the same town, the same school), the German MSI outbreak seems to have been triggered in individual patients, all over the country, just by watching Jan’s wildly popular videos.

In fact, the authors make the claim that this represents a “new type of mass sociogenic illness (MSI) that … is spread solely via social media. Accordingly, we suggest the more specific term ‘mass social media-induced illness’ (MSMI).”

Does This Relate to the 21st Century Explosion in Trans Identification?

Although sociogenic illnesses typically include physical symptoms—not just beliefs—some parallels with the current explosion in trans identification among teens and young adults are undeniable:

In both cases, kids are modeling their symptoms after a condition that already exists (Tourette syndrome, gender dysphoria), often after a lot of online exposure to it, and after a rise in the public visibility—and, some might argue, “popularity”—of the condition.

In both cases, the ages of the new sufferers are quite a bit different from those with the original condition: Tourette syndrome and gender dysphoria typically begin in much younger kids, and not in teenagers.

While the young kids with both Tourette syndrome and gender dysphoria are more often than not boys, the teens who suffer from these MSI tics and gender dysphoria are more often than not girls.

Young kids with Tourette syndrome and gender dysphoria typically have less severe and less noticeable illness compared with the teens with MSI and gender dysphoria, who typically have a more sudden onset of symptoms, and more extreme symptoms.

In both cases, while the teens who develop MSI tics or gender dysphoria genuinely believe there’s something wrong with them that requires medical intervention, there’s no evidence of anything medically wrong.

And interestingly, in a brief personal conversation with one of the German researchers, I learned that she as well as some of her other colleagues who study Tourette syndrome noticed that many of the MSI tic sufferers also identified themselves under the trans umbrella. (She made no statement or claims about what, if anything, that might signify. It was simply an observation she made in passing. To me, though, it was an interesting observation.)

Differences in Diagnosis and Treatment

Despite some seeming similarities, there are big differences between the MSI tic condition and gender dysphoria with regard to diagnosis and treatment:

While Tourette syndrome is a physical condition and therefore easily diagnosed or ruled out, gender dysphoria is a psychological diagnosis with no physical symptoms. While many in the general public misunderstand a diagnosis of “gender dysphoria” to mean that a person has been diagnosed as “being trans” in some medical, physical, real-world way, there is no medical diagnosis of “being trans.” None.

There is only “gender dysphoria,” and dysphoria literally means “emotional distress.” In the case of gender dysphoria, the emotional distress is related to a conglomeration of thoughts, beliefs, or feelings relating to gender. If someone is distressed, they are distressed, period. (However, it’s not the case that if they are distressed, they “are trans,” whatever that might even mean. Emotional distress can have a multitude of causes.)

But I digress: Tourette syndrome is observable by doctors, whereas gender dysphoria relies completely on patients’ self-report and emotional state.

Accordingly, it’s possible for an experienced doctor to rule out Tourette syndrome as a physical diagnosis, whereas for gender dysphoria, a psychological diagnosis, there’s nothing physical to “rule out” because it exists as an emotional and not physical condition.

Müller-Vahl and colleagues discovered that “in some patients, a rapid and complete remission occurred after exclusion of the diagnosis of Tourette syndrome.” In other words, when some kids learned they didn’t have a physical condition causing their tics, that alone was enough to make their symptoms to go away. Remember, that happened in New York in 2012, too: “symptoms rapidly declined once the diagnosis of [mass sociogenic illness] was established.”

One can’t help but wonder what might happen if kids learned that there is no physical evidence that anyone has a “boy’s brain in a girl’s body” or vice versa — that there’s absolutely no physical evidence for that, just as there’s no evidence that you can have a “boy’s elbow in a girl’s body” or a “Korean’s brain in a Norwegian’s body.” None of that makes any literal sense, but many kids seem to believe in the literal possibility that (1) they’re in the “wrong” body, and (2) it’s medically possible to change sex. Neither of these beliefs has evidence to support it. What if kids knew that?

It’s unlikely we will find out any time soon, because the currently fashionable treatment for gender dysphoria is absolute affirmation of their beliefs. Instead of being told there is nothing physically wrong with them, nothing wrong with their bodies or personalities or gender expression that needs to change, every influential figure in these kids’ lives, from parents to peers to teachers to therapists to doctors, confirms for them that there’s a disconnect between their mind and body. Everyone is told that the best possible response is to call these kids by different names or pronouns, and to assist and promote and applaud their “transition” —a series of cosmetic procedures to help them look like the sex they’d prefer themselves to be, or the sex they believe themselves to be “on the inside.”

What would have happened in the 14th century, if the meowing nuns were told they were cats, and everyone around them treated them as such, instead of insisting that they resume life as humans? We can’t know, but it’s worth thinking about.

Instead of insisting that our medical and mental health professionals serve as calm, evidence-based voices of reason, our current cultural climate does the opposite: In fact, we raise the stakes on these families by telling them that if these kids don’t transition, they’ll kill themselves. (The evidence doesn’t bear out this claim.) Medical and mental health professionals are fine with promoting the current cultural belief about “trans kids” and suicide, despite the fact that we know that suicidal behavior, too, can be a social contagion.

What Does It All Mean?

Could it be that we are treating a mass sociogenic illness in the worst way possible?

Is it wrong for an entire society to affirm that there is indeed something wrong with these kids’ bodies?

Is it wrong to lead kids to believe that it’s desirable or healthy to alter their medically healthy bodies in permanent, health-compromising ways?

Is it wrong for us to lead kids to believe if they don’t “fix” themselves with transition, they might kill themselves?

Could it be that if we reassured kids that there is nothing physically wrong with their bodies or personalities, if we told them there is no wrong way to be a girl or boy, man or woman, their emotional distress would be more likely to go away than to persist?

Is it a coincidence that under the old “watchful waiting” model of treatment, a large majority of kids in every study became satisfied with their own bodies and desisted, and now, with the “affirmation” model of treatment, virtually every kid who is started down the path of puberty blockers continues to cross-sex hormones (and all the medicalization and complications that go with that)?

When numbers shift so drastically in a short period of time, especially in a direction that indicates a large shift toward increasing dissatisfaction, increasing emotional distress, increasing medicalization, an increasing sense of something being “wrong” with physically healthy bodies, what does it mean?

What Do We Do Next?

Is it possible that we are reifying a sociogenic illness, when instead we should be listening with curiosity and care to kids’ emotional concerns about their bodies, about gender, about social expectations, about growing up? Instead of cheerleading their transitions, should we be reassuring them about how normal the anxieties, doubts, and discomforts of adolescence are?

What do you think?