Has ‘Tourette’s’ Become an Umbrella Term?

Trigger warnings are flagged on this post for emotional experiences.

Lockdown was undoubtedly horrendous for everybody at some stage - whether it be that we’ve lost a family member to coronavirus, or that our mental health has deteriorated from a lack of human interaction. Everybody suffered in some way.

But a community that were even harder hit was the community of people living with Tourette’s syndrome, as lifelong struggles became more of a ‘viral trend’ - children and teens developing tics wherever you looked.

But, we have to stop, look, and educate people- these tic-like behaviours are NOT necessarily Tourette’s syndrome!

Tourette’s as a word feels like it has become a larger term for tics, whereas it is not. Tourette’s is described as an “inherited neurological condition” by Tourette’s Action, and they couldn’t have put it any better. Tourette’s is not something that people can contract, despite what society may believe following the false misleadings of the media.

People do not seem to realise that tics can be caused by many things. Tics can be caused by mental health issues such as anxiety, and can also be caused by other disorders like OCD and ADHD. These are just three external factors that can cause tics that are not linked to Tourette’s syndrome!

The media can also be held accountable for just how naïve and undereducated people are on the difference between tics and Tourette’s - often, people have been lead to believe that popular TikTok influencers have contributed to or created the growing community of people with tics. This is disgusting and ableist treatment! People are brave enough to use the internet to share their experiences and raise awareness for a disorder with no funding, limited resources and poor prior awareness, and within this they have been made the villains of the situation.

The further impact this has held on the well-being of many creators has left them feeling burnt-out and in a depressive mindset, sometimes saying that they feel ashamed of their Tourette’s. Some were left even considering leaving social media. Stress and anxiety can also worsen symptoms of Tourette’s, which left some people in a horrible place altogether.

Is this what we want as a society - to humiliate people out of standing up for what they believe in?

Some of these influencers are superheroes to young people with Tourette’s, and make them feel less alone. Seeing posts from people Evie Meg (@thistrippyhippie), Cece (@ottershavepockets), Glen Cooney (@thistourettesguy) and Dan (@itlionsden) make lots of people feel more connected to a community, rather than like they’re facing an independent battle.

I have personally witnessed the way that people have used Tourette’s syndrome for some attention online, and it makes me feel physically nauseated every time. A person I saw on TikTok claimed that they visited their GP after ‘developing Tourette’s’ once they had started college, and was officially diagnosed with Tourette’s syndrome the following week.

This is evidently false information, as the NHS website clearly states that to even meet a diagnosis criteria an individual with suspected Tourette’s must have at least one motor and one verbal tic for at least a year. This was honestly just unfair, not only was this person gaining clout off of something that seemed very untrue, but they were also undermining the struggles of so many people, and making Tourette’s look easy to get diagnosed. And how wrong they were!

The resources for Tourette’s are so limited - most of the time, people are having to travel hundreds of miles up and down the UK to access any professional support. The largest support unit is Great Ormond Street Hospital in London, which can be nearly impossible to access to people living outside of London! Sadly, this means that diagnosis can be an extremely elongated process, and accessing support for anything additional is a large struggle for a number of people.

As well as this, the additional tests that may go alongside a Tourette’s diagnosis like an MRI scan to rule out any other conditions can take months to access due to hospitals still being so behind on appointments from the coronavirus lockdowns. These dreadful waiting times have left a number of families in turmoil, with children suffering emotionally from the trauma of chronic tic pains, embarrassment in public from judgemental people, and in most cases even bullying from peers.

But, the main focus - has Tourette’s become an umbrella term?

In small, yes, it has.

But why?

Misinformation has left everyone very confused on what is considered to be Tourette’s syndrome, and what a tic is. Through many months of different experiences, Tourette’s has become a general term for tic-behaviours, and it’s taking away the meaning from a neurological disorder that is no walk-in-the-park.

I do not doubt that the rate of people with functional tics, or anxiety tics, is at an all-time high. Amidst coronavirus, broken social patterns and a loss of routine in society, it isn’t hard to believe that many troubled teens are finding themselves ticcing. However, the influence of social media and TikTok is not to blame - knowledge is wealth and power, and if the correct people are educated, the world will become a safer place for people with Tourette’s syndrome!

What can we do to help, as a community?

Educate. Share resources. Share posts on Instagram, Snapchat, TikTok, and show people the difference between tics and Tourette’s. Like, comment, interact with people in the community! Let them know that you appreciate the hard work that they’re putting in! Be you, be proud - everybody is beautiful in their own way.

Thank you for reading, and have a lovely day! <3

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