Scrolling through your phone when you can’t sleep at night, you find yourself on TikTok, watching an endless stream of videos of strangers participating in dance trends and filtered face effects.
But among all the renegade-ing and clips of cats making cocktails, you might stumble upon an entire community of people using the app to raise awareness of Tourette’s syndrome.
Tourette’s is a condition that causes a person to make involuntary sounds and movements, called tics. While the exact cause of Tourette’s syndrome isn’t known, it’s a complex disorder likely caused by a combination of factors, such as genetic and environmental factors.
Millions are learning all about the condition thanks to people with Tourette’s sharing day-in-the-life videos, participating in trends and opening up about what the condition is like to live with on TikTok.
Some Tourette’s TikTokers have millions of followers, showcasing extreme tics and sharing how they deal with them, as well as the usual TikTok fare of makeup tutorials and loved-up videos with their partners.
Ryan Stevens, 25, from Berkshire UK, goes by Tourettes Lad Official on TikTok. He has over 82,000 followers who watch his near-daily videos raising awareness of Tourette’s.
Ryan experienced his first tics at the age of 14, starting with aggressive head tics after weeks of intense headaches.
This type of tic went on until he was 21, until he experienced his first repetitive vocal tic of ‘spiders bounce’.
His Tourette’s was diagnosed by a neurologist, after multiple misdiagnoses, as having ‘Severe Complex Abnormal Tourette’s Syndrome’.
Ryan tells Metro.co.uk: ‘It affects me day to day as I have extreme tic attacks that make me feel like I’m being electrocuted. I can feel every nerve, synapse and bone move and ache on a 100% scale.
‘I have had to endure embarrassment from the public calling me out, following me around and filming me whilst ticcing. I have had people copying my tics, telling me to grow up, and asking how I can be safe around kids. This all impacts my social anxiety.
‘I’ve also injured myself doing normal household work like cooking.
‘I’m no longer allowed to hold or be near sharp objects. It’s changed the DNA of my seven-year-long relationship now that my partner has had to become my full-time carer.’
Ryan says sharing his journey with Tourette’s on TikTok has given him confidence.
While Ryan admits he does get mixed responses to his videos, with some being ‘childish and ignorant’, he says most are ‘positive and nice to read’.
He said: ‘If just one person knows they’re not alone then I’m happy. No one should feel alone for a disorder they cannot help.’
20-year-old Quinn runs the TourettesTeam account on TikTok. She’s had tics since she was five.
‘It affects my daily life in a lot of ways,’ Quinn tells us. ‘Making tea is a huge mess, going out is nerve wracking, I get started at a lot. I can’t go to cinemas and can’t go on planes and trains alone.
‘My most common tic right now is interrupting people talking and saying “chatter chatter chatter, you never stop talking!” and it can be very embarrassing as it’s a Peppa Pig quote!
‘My tics happen hundreds of times a day. Some people in public mind their own business and walk past, others stare, some laugh and some get angry. It makes me upset that people don’t understand and instead of laughing or staring I’d rather them come up to me and ask me questions. I’ve been made to feel ashamed.’
Quinn says that in one incident, a man shouted at her in Tesco, while a lady gave her death stares and shook her head in disgust.
She continues: ‘Some people think I’m racist and just a naughty person when in reality I’m not at all.’
Quinn started her TikTok account, which she shared with a group of other students who also have the syndrome, to raise awareness and educate people. She wants people to know she’s not a ‘monster’, and wants to show both the funny and the debilitating sides of Tourette’s.
She said: ‘When our first video blew up we were at 200 followers, and gained about 50,000 in less than a week. It was absolutely crazy and I cried with joy that people left nice comments and liked us, and didn’t judge us.
Reply to @sophie.omahony good question! #tourettesyndromeawareness #tourettesawareness #tourettesyndrome #ticsandtourettes #tourettes #fyp
‘It’s a safe place for us and we’re extremely grateful to our supporters.
‘I never expected to reach 200,000 followers, ever. It makes me feel amazing that we blew up over raising awareness about our condition. It makes us feel so much more confident and appreciated, and our supporters never judge us, and treat us like normal people.’
How to support someone with Tourette’s syndrome:
Supporting someone with Tourette’s means being kind, compassionate and understanding.
A few tips, according to Blog NeuronUp, include:
- Don’t stare, as this can make the person with Tourette’s feel ashamed and embarrassed
- Don’t point out new tics, as pointing them out can make them feel more stressed, leading to worsened ticcing
- Be patient with them, and understanding when things get tough
- Look for signs of distress, but make sure your actions are subtle
- Don’t make jokes about tics, or make judgemental comments
Though using social media can often be detrimental to mental wellbeing, it can also do a world of good, as Quinn and Ryan prove.
Counsellor Carol Jackman, who specialises in Tourette’s alongside other conditions, says that social media can be a ‘great way to spread awareness to a wide audience’.
She says: ‘Tourette’s is often misunderstood. It isn’t just about swearing out loud in public. It can be debilitating and socially isolating, with sufferers experiencing low mood, depression and anxiety.
‘TikTok engages a lot of younger people in a fun way, and enables both awareness while providing sufferers with a platform to be heard.’
mums bday meal♥️the waitress at the end told me i made her night🥰🥺#tourettesawareness #foryou #tourettes #foryoupage #awareness
A spokesperson for The Brain Charity, a national charity that provides practical help, emotional support and social activities to people with any form of neurological condition, says: ‘As well as their own symptoms, many neurological conditions – such as Tourette’s Syndrome – can have a significant impact on the likelihood of developing comorbidities such as depression and anxiety.
‘In addition, neurological conditions can be stigmatising, meaning unfortunately many people do not understand enough about them to know how to help.
‘This means increasing awareness of the realities of living with Tourette’s Syndrome and correcting common misconceptions around involuntary tics is vital.
‘We support anyone with a neurological condition brave enough to share their journey on social media platforms including TikTok in a bid to bring this awareness to a wider audience.
‘The public can support people with Tourette’s Syndrome by actively learning more about the condition to reduce stigma and increase compassion and understanding – and by stamping out disability prejudice wherever they see it in society.’
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