‘Tourette’s is my superpower I’ve used it to forge a TV career’ – Telegraph.co.uk

Posted: August 29, 2020 at 7:54 am

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Look at the spastic! a voice sneered. It was the first time someone had mimicked my twitches an older kid at school attempting to impress his friends in the most malicious way possible. I was eight-years-old.

My head began to fog up and I felt like a circus act, as he continued to taunt me. I was too scared to cry. I put my head to the ground and walked away. The rest of that week I spent every break sitting alone in a classroom. Its unbearable to think that children still endure these traumatic experiences. But they do, not least because theres such a lack of awareness about my condition.

I have Tourette syndrome a neurological disorder that causes involuntary movements and vocalisations, called tics. Your mind may jump straight to people shouting obscenities - as is so often depicted on television, such as Channel 5s recent documentary Teacher with Tourettes but coprolalia, as its called, affects only six per cent of people with TS. Despite that, swearing is inaccurately portrayed as our defining characteristic, which makes it incredibly difficult for the other 94 per cent who have the condition.

Around 300,000 people in the UK have Tourettes, each with their own twitches and noises. These tics come and go in phases (mine last around eight months) and can be both conscious and unconscious.

The unconscious kind can be as simple as unknowingly jiggling your knee. As soon as someone mentions it, you become aware youre doing it and try to stop. The conscious type feels more like an electric buzz inside your body, urging you to make a particular movement or sound. The more you resist, the stronger it grows. You finally cave in to experience a moment of relief, but the buzz returns. If youre stressed, emotional or unwell, it gets worse. If youre relaxed, focused or feel like youre in a safe environment its reduced.

I was diagnosed at seven after developing a whooping noise, cough and neck jerk. My parents knew something was up, but the lack of research made it difficult to pinpoint. After a teacher guided us in the right direction, it was the specialist neurological department at Great Ormond Street Hospital who worked it out.

The medication I was forced to take made me put on weight, and then the bullying began. Some kids were really nasty, others protective. Same with my teachers. A twelve, I had an induction day before starting senior school. With a smile on my face I approached a new classmate to say hello. Dont talk to him, he has Tourettes, hes weird interrupted a pupil from my junior school. Being made to feel insignificant had become a way of life. But this time was different, Id had enough.

On my first day, I asked the headmaster to address the entire school of 800 pupils and staff about TS and to explain that I had it. My hope was that more awareness would curb my emotional battles I faced. I left the room to avoid everyone staring at me the whole experience was terrifying. But my courage came through. For the most part, the bullying stopped.

Over the years, as many with TS do, I learnt how to mask my tics with other body movements: a cough, a sniff or sitting in a particular way. I have also developed a number of coping mechanisms, such as breathing exercises, meditation, positive mental attitude techniques and cognitive behavioural therapies.

Sadly, theres a stigma that people with TS will never make anything of themselves. I remember discussing my university choices with a tutor. He scanned the page and upon seeing Oxford on the list let out an uncontrollable laugh. Children with Tourettes are burdened with the false reality that they cannot achieve success. They think the best thing to do is hide in the shadows to avoid the embarrassment they bring to themselves and others.

But what many at this young age dont realise, is that they also have a superpower. Tourettes is not a weakness, it can be a gift. At 15 I began to realise, when I focused my attention on what I truly enjoyed doing, I would excel. I discovered DJing and theatre studies. The moment I was on stage, or speaking into the microphone, my tics would reduce and the excess energy that would have otherwise gone into them became a catalyst to my success.

Ill be honest. The chances of being accepted for a major show or play was slim. So, I did what Id learnt to do: I took things into my own hands.

If I asked that little boy in the playground what hed be when he grew up, my answer would have been a world away from my reality. Today, I create and present TV series on Amazon Prime, most recently, an award-winning travel show called The Three Drinkers. I write a drinks column and travel the world to host events. You see, when we focus on our passions, our tics are almost non-existent. Watching me, youd have no idea I even had Tourettes.

Dont get me wrong - I still have everyday struggles. Public transport, for example. If Ive had a bad day, my tics (currently a pseudo-cough, discreet eye-roll and twitch in my abdomen) might be more pronounced. Ive lost count of the number of people who will glance over, before moving away from me. You cant begin to imagine how emotionally draining that is to be feared.

Relationships can be tricky, too. At what point do I tell someone about my TS? Even though my symptoms are now fairly mild, they do get worse when Im stressed. On first dates its not obvious, but as we spend more time together, I will put a twitch or cough down to allergies. Im still figuring out when to let someone in. Id be lying if I said there wasnt a small concern of will anyone truly love me?. But I do think the right guy is out there.

Thankfully, for many, the older you get the more your tics calm down, but they will never fully disappear. I suppose my life will never be normal, but I am happy. I might be one of the only TV presenters in the world with Tourettes - but I certainly wont be the last.

So, what next? If you learnt something from this article, please share it. Tourettes needs all the awareness it can get.

For my fellow Touretters. You are not alone. Find your coping mechanisms and in doing so, find yourself. Even though you might not know it just yet, you are capable of so very much. Talk to others experiencing similar things and channel your energy into what you love. Give The Tourettes Podcast a listen, its a great start to finding comfort.

Finally, to the parents of children with TS. Educate those around you; schools, clubs, friends and family. Amazing resources such as Tourette.organdtourettes-action.org.ukare out there. Embrace it, normalise it. Don't hide your children away. It's imperative we experience what it's like to be in public, no matter how tough it may seem. And most importantly, help them find their passion. Because one day you will look back and know that, against the odds, they accomplished their dreams.No one should ever feel alone.

There is a severe shortage of TS specialists in the UK and waiting lists are long. Recently, Alder Hey Hospital in the North West shut their doors to TS sufferers after the specialist left, with no plans to replace them. Waiting lists for the other three centres in the country make it difficult for children in desperate need to get the help they deserve and at this age, it's essential they embrace their Tourette's rather than running from it. Local parents have set up a petition to force the local government to take action but need help from people throughout the country. Please help us make a paramount difference to these kids' lives by signing a petition at Change.org.

Aidy Smith is an award-winning TV presenter and journalist. You can follow him@Sypped

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'Tourette's is my superpower I've used it to forge a TV career' - Telegraph.co.uk

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August 29th, 2020 at 7:54 am

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