Aidy Smith is one of the only TV hosts in the world with Tourette’s. Here, in his own words, he shares his story…
Have you ever sat on the bus and seen someone making a strange noise? Perhaps you moved away, feeling uncomfortable. Well, that person was possibly someone like me.
I have Tourette’s Syndrome (TS). Which means sometimes I make weird noises and twitch. Sometimes this freaks people out.
You might assume all people with Tourette’s shout out swear words. But actually coprolalia – as it’s known – affects only 6% of us. I like to swear as much as the next Yorkshireman, but I don’t do it uncontrollably as part of my Tourette’s. There are many misconceptions about this neurological condition.
My tics began when I was seven. I would sniff loudly or let out a kind of ‘whooping’ noise. With little awareness on the topic, my parents had no clue what it could be. It took a primary school teacher to gently suggest I might have Tourette’s after watching a documentary.
My mum, Annette, did her research after that, and within a few weeks we travelled from our home in Bradford to London’s Great Ormond Street, where the hospital confirmed the diagnosis. There is no cure for Tourette’s, but treatment can help manage symptoms.
I was put on medication to help calm the tics. It didn’t work, but it made me pile on the pounds. So now I had my weight as well as tics to feel self-conscious about. I had no real understanding of what was happening, but that year I wrote to Father Christmas begging him to make me ‘normal’.
People often ask what the tics feel like. Sometimes they are conscious, sometimes they aren’t. For the ones that are, it’s like an urge to scratch a bad mosquito bite – the more you resist the itch, the bigger it becomes. But when you finally scratch, after a moment of relief, the sensation returns.
A tic can be anything from a noise, twitch or cough, to rapid head movements, finger clicks, deep breaths and whistles. It gets worse when you’re stressed, sick, nervous or excited, and everyone’s different.
In public, during a bad day, it’s often mortifying. I remember one of the visits to London when I was eight. Feeling excited about the train, the tics were prominent. I let out some ‘whoops’ and a man in the carriage shouted, ‘Will someone please shut that child up!’
My mum was furious on my behalf, but I felt such shame. It’s for this reason so many kids with Tourette’s shut themselves away. I was bullied, with name calling including ‘spastic’, ‘retard’ and ‘abortion’. Kids can be a***holes, and sometimes the teachers were unwittingly as bad. I got sent out of class when my vocal tics were aggravated.
Standing in the hallway felt like a punishment for something I couldn’t help. And there was the supply teacher who yelled, ‘What on earth is wrong with you, boy?’ in front of the whole class.
Even when people tried to be kind, hurtful situations arose. When our neighbours held a birthday party for their son, I’d been allowed early access on the bouncy castle. But when the guests arrived I was told it was ‘just for adults’ now and sent home.
The next few hours were spent in my bedroom, tears rolling, as I listened to kids bouncing with glee. They were embarrassed about the twitching kid who makes noises. I hated being different.
So many kids with TS are full of self-loathing. I feel it’s my duty to help educate the next generation. There needs to be more compassion and understanding, so children aren’t scared and so judged. And while this may seem like a sorrowful tale, it’s actually not.
Thankfully, life slowly improved. At senior school, aged 13, I had asked the headmaster to announce in assembly I had TS and explain what it was. This actually helped kids and staff become more tolerant. I learned an important lesson in facing problems head-on. While I wasn’t popular, I did have some friends.
I was around 15 when I realised that channelling my energy into my passions – writing, drama, entrepreneurial projects – saw my tics begin to slow down and even disappear in some cases. These became coping mechanisms, greatly reducing the urges to tic.
Truth is, people with Tourette’s have a superpower that, when channelled into something they love, makes them unstoppable. Intertwine this with various cognitive behavioural therapies (CBTs), such as meditation and positive mental attitude techniques, and it sets us a world apart.
At 18 I landed a place at Lancaster University, studying marketing management, which I loved. I also ‘came out’. I’d had crushes on boys since I was 13, so this was a massive relief.
I first became interested in wine when, during my course, I spent a year in San Francisco. I met an amazing couple who became like family to me, Steve and Rose Smith. I’d often shadow them on weekends at their winery, and their love for wine completely rubbed off on me – the senses, the smells, the tasting profiles.
I was hooked, and it kick-started my career in the wine industry. I now write a wine and spirits column, and through this world met my incredible friends Helena Nicklin and Colin Hampden-White. Together, we created an award-winning TV series on Amazon Prime called The Three Drinkers.
You might wonder how the hell a person with Tourette’s ended up as a TV presenter? Interestingly, when the cameras roll, I’m so focused on doing what I love, my tics go away and viewers have no idea. Tourette’s doesn’t just ‘disappear’, of course. It’s with us forever, although statistically it calms down with age.
Confidence issues can greatly affect people with TS. Take dating. ‘Will anyone ever fall in love with me?’ is a concern that worries many of us. On a first date my tics can go unnoticed, some of us learn to mask them.
But by the time someone comes over for dinner they get more obvious. People ask, ‘Have you got hiccups?’ and you have to work out when best to tell them. I don’t exactly want to pull out the TS leaflets over the second bottle of wine. I’m still navigating this.
My life will never be ‘normal’, and I’ll continue getting odd looks. But I’m happy and successful. These days I see having Tourette’s not as my weakness, but my biggest strength.
WHAT IS TOURETTE’S?
A neurological condition characterised by repetitive, stereotyped, involuntary movements and vocalisations called tics.
DID YOU KNOW?
Pop prodigy Billie Eilish has TS.
HOW TO HELP
If you see someone with tics, don’t stare, smile. Allow them to feel you understand, and it’s OK for them to be themselves. Be inclusive so people with TS can relax. Educate others. The Tourette Association (Tourette.org) has the best resources and a great community on Instagram.
– Aidy Smith is an award-winning TV presenter and drinks journalist. Follow him on Instagram @Sypped. The Three Drinkers is on Amazon Prime.