During the pandemic the use of TikTok exploded, with communities emerging around everything from aesthetics subgenres to vulva positivity. Tourette's syndrome and tics content is no exception, with the hashtags #ticdisorder and #tourettes at 416 million and 4.7 billion views respectively at the time of writing. Referrals for tic-like behaviours rapidly increased, particularly in 12 to 25-year-old girls and young women, during the pandemic, research published in the journal Movement Disorders has found. In the locations cited by the study (Canada, US, UK, Germany and Australia) there has been a dramatic rise in what are being called rapid onset functional tic-like behaviours (FTLB). Pre-pandemic, these accounted for 1-2% of total referrals; they now account for 20-35%.
The speed with which symptoms appear in individuals as well as the way these tics manifest sets them apart from Tourette’s and other tic disorders. These symptoms appear to be ‘functional’ (what would formerly be described as psychosomatic) – in other words, the cause of physical symptoms does not appear to be anatomical but psychological.
The link between these new cases is thought to be social media use, particularly TikTok, with the authors noting a similarity between the tics or tic-like behaviours on social media and those displayed in patients – neither of which bears diagnostic similarity to those found in Tourette's or other tic disorders. This is echoed by the patients themselves: all patients who participated in the study "endorsed exposure to influencers on social media (mainly TikTok) with tics or TS [Tourette's Syndrome]".
The idea of contagion generally is worrying in a world all too familiar with pandemics. Add to this the idea that physical symptoms can be spread through social media and it can spiral out into a full-blown panic. Another report that studied popular TikTok influencers with tics describes so-called 'TikTok Tics' as "a pandemic within a pandemic". It concludes: "We believe this to be an example of mass sociogenic illness, which involves behaviors, emotions, or conditions spreading spontaneously through a group." Could this reporting, in its simplicity, only exacerbate this so-called tic ‘pandemic’? It runs the risk of further stigmatising conditions like Tourette's while embedding those with functional disorders in their symptoms with no opportunity for relief.
We spoke to neurologist Suzanne O’Sullivan, author of The Sleeping Beauties: And Other Stories Of Mystery Illnesses, to get to the bottom of some key questions. How do functional neurological disorders (FND) happen? What is the internet doing to the spread of them? Is it really true to say that tics are spreading through TikTok? And if so, how do we tackle this without adding more stigma to functional disorders or the disorders they look like?
To understand disorders like FTLB, you have to understand functional neurological disorders more broadly. These disorders are when you get real, significant physical symptoms as a result of some malfunction in the nervous system but the malfunction is not due to a disease. They have also been called psychogenic, psychosomatic and even ‘medically unexplained’.
With functional neurological disorders, their symptoms and how they develop all comes down to the way our conscious attention can disrupt otherwise normal, automatic processes. Suzanne cites muscle memory as an example of this. "If you're walking along the street, you don't think about walking at all. But if you're walking along the edge of a cliff path where suddenly tripping has much more jeopardy attached to it, it completely changes the way you walk."
So if you notice something different in your body it can set off a looping problem: what you notice (like a twitch or a pain) could trigger your stress hormones, which produces new changes in your body and quickens your heart rate, which then activates your autonomic nervous system and produces physiological changes. This chain of events legitimises the initial attention placed on a sensation or a movement and can increase the strangeness you feel. For some people this can loop and accumulate, resulting in both internal physiological changes and a change in the unconscious control of the body. The end result is an unconscious manifestation of physical symptoms like tics, seizures or paralysis.
As shown with the cases of functional tics, not everyone is inherently vulnerable to these kinds of disorders. Young women and girls make up the majority of cases and those with a tendency to be anxious or hypervigilant about their body are at higher risk (nearly all the young women and girls referred in the first study had a mood or anxiety disorder).
There are other determining factors. Your immediate environment, for instance, can exacerbate your vulnerability to functional neurological disorders. The anxiety and isolation of the pandemic, together with the fact that a government mandate encouraged hypervigilance of our bodies for COVID symptoms, has made us all worry about how we’re feeling. Together with your social environment, this can determine how that vulnerability to these disorders is expressed. If you are already anxious, analysing your body and seeing lots about tics from your peers on TikTok can unconsciously influence how you express your anxiety.
If you are already anxious, analysing your body and seeing lots about tics from your peers on TikTok can unconsciously influence how you express your anxiety.
It is too simple, then, to say that TikTok caused these tics to spread, just as it would be too simple to say that socialising caused fainting to spread in 19th century Paris. It is just the latest way in which ideas about illness are being disseminated, and those vulnerable to functional disorders are unconsciously learning ideas about illness from their peers.
What makes this trickier, however, is how social environments can inadvertently perpetuate functional disorders. It’s vital to note that social media communities around chronic illnesses and stigmatised conditions can be a lifeline for those living with those conditions. Bringing awareness and offering solidarity can be social media at its best. For those experiencing similar symptoms, social media can be a vital resource and opportunity for community. But as is the case with the affectionately known ‘TicTok’, there is a double bind in the growth of illness communities.
Suzanne explains to R29: "Once you become aware of more and more features of the condition, you can begin to take on those features and begin to embody the story of the disorder in a way that wouldn't necessarily have happened." This can become harder to untangle when there is an element of community that you are drawn to, she says. "If illness becomes part of your identity and being part of a group depends upon you having an illness, then it really can have a very detrimental effect. It's really, really difficult to know if you should join a support group or not because for some people, it has a positive effect but for lots, it has a negative effect."
This is why Suzanne is wary of explicitly medicalising the specific versions of functional disorders, as doing so can make it harder to break the looping effect. "As a sociogenic phenomenon, these things spread, they disappear and they're replaced by something else, but if you medicalise it and someone goes to a doctor and potentially gets medical intervention or becomes part of a medical illness group, then you potentially run the risk of creating a chronic phenomenon."
Simultaneously though, there needs to be a better understanding of functional neurological disorders more broadly. Because of the psychological nature of these disorders, the legitimacy of an FND diagnosis is often questioned. The assumption is that because the physical symptoms are psychologically rooted, the disorder isn’t ‘real’ – someone is just making it up. In fact, its validity has been proven in group studies, Suzanne says. When comparing someone with functional paralysis to someone pretending to be paralysed and someone paralysed due to injury, "you can see that for the people with functional disorders, there's different patterns of motor activation in their brains than in other groups."
This idea that they aren’t valid conditions persists, exacerbated by the fact that all functional neurological disorders are far more common in women and young girls – leading some to assume that the diagnosis in itself is a sexist dismissal of women’s pain. While the dismissal and ignorance of women’s pain is a pervasive issue, Suzanne is adamant that this is not generally the case with FND: "I'm not saying that's never the case or that no one has ever been dismissed, but the actual problem here is that this is a female predominant condition and that has made it easy to dismiss, rather than it being a condition that is given to women just to get them to go home and leave you alone."
Threading the needle of not over-medicalising while recognising the validity of these conditions sounds complicated. But ultimately it comes down to two main things. The first is to take the pain and distress at the heart of these disorders seriously without conflating it with disorders that, to the untrained eye, they appear to mimic.
The second – admittedly easier said than done – is to try and remove the social influence that could be perpetuating the symptoms. The impact of the pandemic on the way we look at our bodies and interact with other people is not a straightforward on/off switch but de-engaging from social media is potentially easier. "When you stop paying attention to your body in the same way," Suzanne says, "and you start focusing your attention outside yourself on other things, then it slowly causes that looping system to die down again. All the bodily changes become less intense. So you just remove yourself from the situation."
Ultimately we shouldn’t demonise either the individuals or the platforms through which their distress is expressed. It is yet another piece in the pandemic fallout, compounded by the growing mental health crisis. Instead we can respond with understanding and respect and be reassured that with case-by-case treatment, functional disorders can get better.