TikTok fame bolsters Tourettes sufferer’s awareness campaign

Glen Cooney first started ‘ticking’ at the age of 10, after his cousin was killed on the way to school.

The involuntary movements and sounds then worsened when his dad died.

He has now learned to embrace his tics and shows them on TikTok, a social media platform for short-form mobile videos.

But the road to embracing his condition was not an easy one.

‘When I was 10 I had to see a psychiatrist, but they mis-diagnosed me with just being disruptive,’ he said.

‘They gave me pills and sedation tablets to try and calm me down, pretty much to try and gloss over the issues, but I still had these urges and I couldn’t understand them.’

Mr Cooney said he often wondered what was wrong with him, why couldn’t he stop fidgeting or saying things when he shouldn’t.

‘People used to think I was mad shouting stuff and throwing things around, but I didn’t know it was going to happen until I’d already done it.

‘They thought I was rude and obnoxious and – not understanding it – I started to believe that too.’

Losing friends over the years because of it, Mr Cooney ended up closing himself off and, when things got really bad, shutting himself out.

‘If we had friends or family round for dinner and I started to get really bad, I would have to leave and go on a walk.

‘I was so ashamed of it and I ended up getting to a really bad place, I was really depressed and very anxious.’

It has taken years, but, now 40, Mr Cooney has learned to embrace his condition and understands that it is often impossible to control.

Since then, he says it gives him less of a headache, but can still be frustrating when he has spent a long time making dinner but cannot stop himself from throwing it over his head.

Taking to TikTok, a platform where every user has the same opportunities to ‘go viral’, Mr Cooney has realised how many other people there are with Tourette’s syndrome who are confused and scared to speak up.

‘One of my videos has now hit six million views, and I get literally hundreds of messages every day from people saying they’ve started ticking and are embarrassed, or asking for advice, or want to know more about it,’ he said.

‘Some of the hate comments on other people’s Tourettes videos are horrible, so I wanted to educate people a bit more and remove the perception that it’s just swearing.’

He has only been using Tik Tok for a month, but already has more than 130,000 followers, a huge proportion of which came very quickly in a few days.

‘I’m now talking more about what it’s like to live with ticks, answer as many questions as I can in videos or live feeds, and raise awareness about a fundraiser I am doing for Tourettes Action.’

On 1 November, Mr Cooney will walk the 27 miles around Guernsey’s coast. ‘It will be difficult, not only because of the distance, but because of all of the outdoor stimulation – there’s so much to see and hear it can be a real challenge,’ he said.

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