National Post (National Edition)
TikTok tics: How mental illness symptoms spread on the web
Ginger has been receiving treatment for anxiety, but out of nowhere she tells her therapist that she also has dissociative identity disorder — formerly known as multiple personality disorder.
She has, she says, 33 different personalities. One is an asexual 20-year-old male named Ace. Another, Rebel, is 17.
On her TikTok, Ginger has been posting videos under these personalities. Another one is Baby, who can't talk, but appears sucking her thumb.
Given the sudden appearance of this disorder, and the tie to social media, Ginger's mom asks: “Is she just making this up?”
The answer? Possibly. Ginger isn't a real person. She's a fictional case contained in an academic paper that's based on “common presentations” of a phenomenon that's showing up in psychologists' offices — one that may be spreading via the internet.
In recent years, psychologists and psychiatrists have been seeing an increasing number of patients presenting with mental-health disorders and Tourette's-like symptoms. The numbers of patients, and the atypical presentations of symptoms, suggest this isn't normal. In the meantime, interest in these illnesses is skyrocketing.
WHILE IT IS POSSIBLE THAT THESE ARE ALL CONVERSION PHENOMENA, THERE IS ALSO SOME EVIDENCE — THOUGH THUS FAR ONLY EXPLICATED IN THE LAY PRESS — THAT THESE MAY BE DELIBERATELY MANUFACTURED, OR A FORM OF FACTITIOUS DISORDER. — DR. ANDREA GIEDINGHAGEN
One research paper, from July 2021, noted 5.8 billion views in a three-week period in 2021 of videos showing what it termed “TikTok tics.”
These two phenomena could be linked.
Researchers believe that young people — often adolescent girls and young women — are acquiring symptoms of a variety of disorders because they've viewed posts from social media influencers who themselves are displaying symptoms. This was seen in the aughts, with the website Tumblr, then on Instagram, and most recently TikTok. While much of the discussion has been around an increase in people with tics — whether verbal or physical — there has been a wide variety of presenting issues, such as gender dysphoria, depression, anxiety, attention-deficit hyperactivity disorder and eating disorders.
While some of these teens may be faking, either in their therapy appointments or online, others may have genuinely acquired symptoms. One explanation is that the emergence of symptoms was a result of pandemic-related stress. There are also those who seem to be acquiring an illness via the internet, a modern incarnation of what's called a mass psychogenic illness. And, of course, there are others who genuinely experience mental-health struggles that are more “typical” and have turned to the internet to find community.
When patients show up exhibiting symptoms in an unusual manner or with an unusual backstory, even experienced psychologists, psychiatrists and family doctors may not realize their illness is not what it seems.
“Even professionals in the mental health community can miss it,” says Dr. Marc Feldman, a psychiatrist at the University of Alabama. “Because we don't approach patients from the perspective that maybe they're fibbing.”
Tics in particular are becoming more frequent. Data collated in research papers suggests an increase in patients seeking treatment for tics typically associated with Tourette's syndrome, a neurological disorder. One paper, published in Archives of Disease in Childhood, notes that two tic specialty clinics at two London children's hospitals reported a doubling in the referral rate of children presenting with tics. In the paper about Ginger, the author, Dr. Andrea Giedinghagen, says her clinic saw zero such cases prior to January 2021, but the rate of cases seen accelerated — though specific numbers are not given — by September 2021.
Giedinghagen, a psychiatry professor at the Washington University School of Medicine in St. Louis, says the spread of tics, and the increasing number of cases during the pandemic, may actually be a genuine portrayal of stress release; a person could have tics without Tourette's.
A potential diagnosis is something called a conversion disorder — basically, when symptoms such as tics or loss of balance occur without any other medical diagnosis. However, people who have conversion disorders often have a significant, recent trauma or stress, other mental-health issues or a history of childhood abuse.
There are other potential explanations or diagnoses besides a conversion disorder. The first is a factitious disorder, when someone exaggerates or fakes illness. In more severe cases, it is called Munchausen syndrome. A variation on this is when the illness becomes “malingering,” which is when a person uses their factitious disorder for personal gain. These explain, broadly speaking, the category of people who might be considered to be “faking,” although given that these themselves are mental illnesses, and the sufferer may not have a particularly good grasp on what they're doing and why, it's not “faking” in the colloquial sense.
“While it is possible that these are all conversion phenomena, there is also some evidence — though thus far only explicated in the lay press — that these may be deliberately manufactured, or a form of factitious disorder,” writes Giedinghagen in her paper, published in the journal Child Clinical Psychology and Psychiatry.
A study of TikTokers who report having a mental illness found that 64 per cent of those in the study group were selling merchandise or seeking paid speaking appearances, suggesting some may be seeking personal benefit from their illness in keeping with a malingering factitious disorder. However, selling merchandise alone does not necessarily mean that the illness isn't real. As well, the benefit sought by people with factitious disorder need not be financial — a person may be simply seeking comfort.
According to Giedinghagen's paper, Munchausen's by internet is when a person assumes a sick role in order to receive support via the internet. They may learn about symptoms via online posts, too. This is akin to people without cancer joining cancer support groups.
Another explanation is the spread of symptoms among social groups, called a mass psychogenic illness, which, in this case, would be spread via social media. Basically, a group of people starts showing symptoms when there's no particular reason to do so after viewing someone else exhibiting the symptoms, or perhaps triggered by something, like an unusual smell or rumours of illness going around.
A famous historical example is the dancing plague that afflicted people periodically between the 14th and 17th centuries, when Europeans broke out into fits of mad dancing with no obvious explanation. Musicians attempted to play music to dance it out of them, but this only brought others to join in. Priests performed exorcisms. Some people even danced until they died. To this day, it's not clear exactly what caused this — but one theory is that it was a case of mass psychogenic illness. The cases seem to have appeared during times of hardship, and people may also have travelled around Europe in cultlike groupings, spreading the dancing mania to various communities.
“The only difference between (TikTok tics) and the medieval dancing plagues is that, thanks to the internet, people no longer have to be in the same geographic space for that social contagion to spread,” wrote Giedinghagen in a followup email.
In the case of the internet, information circulates at a much higher rate. A single social media post with someone presenting symptoms of a disorder can get millions of views, giving it a massive international reach in the case of mass psychogenic illness.
The theory Giedinghagen develops — which she calls social media associated abnormal illness behaviour — combines a few of these explanations.
The first is that there's some degree of mass psychogenic illness, which would basically be people acquiring conversion disorders from this content. This may, in recent years, be due to pandemic stress. But also, there may be some people showing factitious disorders, either seeking attention in an unhealthy way or perhaps even financial gain. This itself is a disorder, so more complicated than simple fakery. The behaviour may be maladaptive, but it's not necessarily malicious, argues Giedinghagen.
“A lot of times there's an assumption of malicious intent, which these folks don't have,” says Giedinghagen.
Feldman, who's an expert in factitious disorders, says many people also fake physical ailments. Cancer is a common one. Pregnancy is a regular one, too.
“The limit is only a person's creativity and motivation and knowledge and anybody can become an expert in even rare medical conditions just by reading the Wikipedia entry for 20 minutes,” says Feldman.
So, why? Why, in the case of people faking a pregnancy or a cancer diagnosis? And, why, in the case of teenagers seemingly developing tics out of nowhere and posting about them on social media?
The simple, albeit partial answer, is connection.
“From a psychological point of view, teenagers really need to identify in groups when they're in that stage of life,” says Sofia Sebben, a graduate student in psychology at the University of Waterloo.
A great proportion of our lives are now lived online. And the pandemic brought about considerable isolation. We're mammals, and wired for connection and community; acquiring or faking an illness can be a way to receive that support.
“You get what you need emotionally just by reading an injury on a health-related website and then signing on to one of the tens if not hundreds of thousands of support groups dedicated to that illness,” says Feldman. “You don't have to act in real life. You just get all the attention you can possibly handle, because those groups are unconditionally supportive, at least to start.”
Almost everybody has faked an illness at one point or another, whether that's telling your mom the dreadful hangover is actually food poisoning or calling in sick when you simply need a day to rest, or overstating how sad you are to get a hug from a friend, parent or partner.
“Everybody who's sick does want a little time and attention and care, and that's reasonable. It's only when it becomes wilfully deceptive and emerges as a serious pattern of behaviour and an individual may feel, even to the person, compulsive or addictive, which are words they often use, do we worry about it being Munchausen syndrome,” says Feldman.
A person may not have grown up in an emotionally supportive household — they may not know how to say they need a hug, or express that they need support. And so, by displaying suffering in non-verbal ways, they can seek — and sometimes receive — that comfort in a way that feels safer to them.
“There's also a certain kind of perverse cachet associated these days with having a mental illness, in that there's more sensitivity to the issue of mental illness and more awareness than there was when I started this work in 1990,” says Feldman.
Of course, that support can disappear — quickly. Unlike a psychologist, the internet has no real qualms about accusing people of lying about their mental health.
On the other hand, notes Giedinghagen's paper, questioning a diagnosis may be seen as cyberbullying, and even doctors who disagree with self-diagnosis are seen as “invalidating.”
Jasmine Zhang, a PhD student in clinical psychology at the University of Waterloo who's studying digital media and mental health, notes that while these groups are tracking down “cringe diagnoses,” people need to be careful because the people might be legitimately suffering.
The paper on TikTok tics found the tics people were displaying on TikTok were, simply put, unusual. Consistent, yes, with Tourette's, but in unusual rates, leading researchers to conclude something else was happening.
For example, in the cohort of 28 subjects, with a mean age of 18.8 years old, 93 per cent showed coprolalia (obscene language) or copropraxia (obscene gestures).
But, the literature suggests that only between eight and 14 per cent of people with Tourette's show those symptoms. In the study, 39.3 per cent required hospitalization for their tics, but only 5.1 per cent of Tourette's patients typically end up in hospital, according to the medical literature.
For those who are showing signs of a factitious disorder, Giedinghagen says professionals begin with the “most charitable” assumptions about what's going on, then will consult with other professionals, such as neurologists, to rule out something like multiple sclerosis. They take a life history, history of trauma, any other mental illness, that might help explain what's going on.
ALMOST EVERYBODY HAS FAKED AN ILLNESS AT ONE POINT.