December 15, 2023

“We aren’t faking it.” Tic sufferer warns over condition’s representation on social media

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Tourette syndrome (TS) is a neurodevelopmental disorder that begins in childhood or adolescence. TS is characterised by movement and vocal tics.

Illustration: Tourette syndrome glyph | iStock

There have been calls for greater awareness of tics and those who suffer from the “stigma” of having this symptom, following criticism that sufferers are doing it for a trend or popularity.

From mediaeval peasants plagued by an uncontrollable urge to dance to nuns experiencing mass possessions in convents – mass sociogenic illnesses (MSIs) have played a role in history, affecting events as significant as the Salem Witch Trials.

All historical examples of MSIs have seen experiencers be in close proximity to one another, for symptoms to be able to spread. But when doctors across the world all noticed one particular condition arising in their clinics, with no explanation of how people with no supposed contact were experiencing the same symptoms, the definition of an MSI as they knew it had to change.

Mass sociogenic/psychogenic illness refers to when unconscious signs or symptoms of illness spread rapidly through a cohesive group, originating from a nervous system disturbance.

German scientists however have coined a new term, mass social media-induced illnesses (MSMIs), to explain how people across the world are experiencing the same symptoms when not being a ‘cohesive group’, as doctors observed. This one symptom, which has sparked change in definitions and is appearing in teens across the world, is tics.

Tics are involuntary, sudden movements, twitches or sounds sufferers repeatedly make. Although not a condition in itself or ‘not usually serious’, according to the NHS it is a symptom found in conditions including Tourette’s. They affect around 1% of the population, with over 300,000 children and adults living with tics in the UK alone.

Tourette’s Action, the leading charity for Tourette’s research and support in the UK, states “there has been an increase in functional tics and tic-like movements and behaviours in people both with and without pre-existing tics during the COVID pandemic.”

German psychiatrist Kirsten Müller-Vahl, the lead scientist on the paper which coined MSMIs, agrees that the pandemic may have accelerated the outbreak since the cloistered lockdown environment intensified the effects of social media sites.

Social media outlets have become a form of refuge for tic sufferers, providing a venue to connect with others for support. While social media can be a tool for spreading information quickly, equally, misinformation can be disseminated.

In an interview with Harbingers’, ‘Mike’ (a pseudonym name to conceal their real identity) aged 17, a tic sufferer, discussed the “glamorising” of tics on social media.

He said: “Media portrayal of tics in most cases tends to showcase the so-called “funny” side of having tics”, for example, “ticcing rude words.”

He believes that the idea that someone can say these “funny” or “odd” phrases in public can be seen as “appealing in some ways to people without tics” as a way of saying these phrases without facing societal repercussions.

Mike noted that he has seen videos with “subconscious messaging” to create specific outcomes on social media in order to get people to develop tics. He noted at multiple points during the interview that by no means are people with tics on social media “faking” or “exaggerating”, but it is the more “‘lighthearted content that tends to go viral”, leading to misinformation and people thinking this is the whole picture of life with tics.

Because of the way tics are portrayed in the media, Mike has felt “alienated” as the “stigmatisation” of tics causes “weird looks” or “anger”.

The influx of misinformation in the media “leads people to believe that kids are doing it for a trend or popularity,” but “we aren’t faking it,” says Mike. People like Mike just want to “live their life peacefully.”

Greater awareness and classification of this tic outbreak as an MSMI came following a slew of strange cases in Germany, where patients with no physical contact exhibited identical tics.

Learn more:

They saw a YouTube video. Then they got Tourette’s

‘Hundreds of young people are displaying strikingly similar tic-like behaviours. But is it Tourette’s, or something more mysterious?’

By Grace Browne | WIRED

Clinicians found that patients across Germany were exhibiting the same symptoms of tics as tic sufferer Jan Zimmerman, who posts on his YouTube channel, ‘Gewitter im Kopf’ (translates to ‘thunder in my head’) about his own experiences.

While tics typically onset around the age of six, Müller-Vahl noticed the average age of sufferers in her clinic rise to 19, and of the 50 young people she saw since 2019, all shared that they watched Zimmerman’s channel.

The fact that their tics were, in fact, identical to Zimmerman’s after watching his videos led to this outbreak being classified as an MSMI, with Zimmerman’s platform being the social-media influence.

Zimmerman’s impact has been mostly limited to Germany, but other influencers, including Evie Meg (known as @thistrippyhippie on TikTok), have caused a similar phenomenon in other countries across the world, including Canada and the UK, making this a global MSMI.

The circumstances of identical symptoms can be attributed to the suggestibility of tics – their emergence and intensity can be influenced, particularly by seeing other people experiencing them or by talking about them, as is seen across social media outlets like TikTok.

Robert Bartholomew, an MSI specialist based in New Zealand, was one of the first to suspect that MSIs could spread through social media, as has been seen with tics.

In an interview he said that the phenomenon has “morphed over the centuries to reflect the fear of the times.” In the 17th century, that was witches. Now, it’s technology, reflected by social media being the vector.

Bartholomew says that while this one pandemic of tics will eventually fade, social media is here to stay. This mass social media-induced pandemic is possibly the first of more to come.

Written by:

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Ananya Prasanna

Contributor

Reading, United Kingdom

Born in 2007, Ananya studies in Reading, England. With her passions lying in science and music, she plans to study medicine and is a diploma-holder on the violin.

In her free time, she enjoys volunteering at a local hospital, leading choir/orchestra rehearsals and reading books written by doctors in order to get an insight into how medical practices and customs vary around the globe.

She has experience in cultivating a social media profile, previously garnering 150,000+ views on a music-based YouTube channel.

Ananya joined Harbingers’ Magazine  in the autumn of 2023, having won third place for her Essay on Science in The Harbinger Prize.

She speaks English, Tamil, and a bit of German.

Edited by:

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Sofia Radysh

Science Section Editor

Animal welfare correspondent

Kyiv, Ukraine | London, United Kingdom

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