LIKE Lewis Capaldi, 32-year-old Aidy Smith has Tourette’s syndrome.
The superstar singer has cancelled his entire upcoming tour to adjust to the challenges of living with the condition – something Aidy knows all too well.
David WhiteTV presenter Aidy Smith has Tourette’s syndrome[/caption]
AFPSinger Lewis Capaldi, on stage at Glastonbury on June 27, also has the condition[/caption]
He said it can be debilitating, isolating and even leave you feeling suicidal.
Research shows almost half of adults with Tourette’s have considered taking their own lives.
But one thing it isn’t for most people is a condition characterised by swearing and violent outbursts, Aidy said.
He’s keen to dispel the myth that sufferers yell expletives at random intervals and jerk their limbs periodically throughout the day, as is portrayed on telly.
Instead, most people may blink more often, shrug their shoulders more frequently, or whistle, cough or click their tongue.
And he wants society to understand that while Tourette’s can make life difficult, it can actually be a “superpower”.
Aidy, who lives in London, said: “People have got to realise that Tourette’s is not a swearing condition.
“TV shows and films have wrongly taught us that shouting ‘f***’, ‘s***’ and ‘c***’ is the main symptom when in reality, only one in 10 people’s tics involve foul language.
“I swear a lot, but that’s because I’m from Yorkshire. It’s got nothing to do with my Tourette’s.
“This is absolutely the biggest misconception people have.
“To my knowledge, it’s the only disability that the public and comedians feel they’ve got a green card to mock purely for the entertainment factor, so it’s the butt of every joke.
“Yes, Tourette’s is impactful, but it is not a deficit or a burden that is going to incapacitate us.
“We are incredibly talented people who can soar in the right situation.”
Aidy was diagnosed as a youngster after a teacher spotted he had a recurrent cough and twitch in his neck.
Despite finally having an answer for why he sometimes acted differently to his peers, he said he found his childhood years hell.
He was shunned from his acting school and made to feel “disgusting” over tics (involuntary movements or sounds) he simply couldn’t control.
“As a 10-year-old, you don’t understand you’ve done nothing wrong,” Aidy, who appeared on CITV with Harry Potter star Matthew Lewis in the 90s, said.
“I was made to feel shame and that I should just lock myself away.
“Saying the word ‘Tourette’s’ was like saying Voldemort – I would freeze and be petrified. I was scared s***less of being myself.”
One particularly traumatic experience involved a get-together at his neighbour’s house.
Aidy was told he could pop round to play on the bouncy castle for an hour before it turned into a “parents only” party.
He enjoyed his 60 minutes of fun and returned home, only to watch all the other kids having fun for the rest of the afternoon from his bedroom window.
“It was heartbreaking,” he said.
‘THERE IS NO ESCAPE’
Aidy then spent years trying to hide who he really was, painstakingly trying to repress his tics in assemblies and in front of friends.
He would suppress them as much as he could throughout the day, then return home in the evening when they would “come out in full force”.
“It was exhausting,” he said.
“I can hold them in for a period of time but they always need to come out. There is no escape.”
Thankfully, he has since learned to embrace his condition – and wants Scottish hitmaker Lewis to do the same.
Aidy, the only TV presenter with Tourette’s in the UK, said: “I think it is fantastic that Lewis has shared his story.
“I’m so proud of him for having the confidence to talk about it and be open about it when he is so early in his diagnosis.
“I think that should be applauded. The strength and courage it takes to do that is phenomenal.”
But he urged the 26-year-old to take things slow.
“He is at the very beginning of his journey and I don’t think it’s fair to expect him to talk about it in more detail right away,” Aidy added.
“It takes time to understand exactly what is going on with your body, who you are as a person, and how to navigate that.
“What he’s done is a beautiful example of how the rest of the world can unite around people with Tourette’s.
“No one should ever be rushed.”
I swear a lot, but that’s because I’m from Yorkshire. It’s got nothing to do with my Tourette’s.
Aidy Smith
In fact, Aidy reckons once Lewis has processed his diagnosis and learned to manage his tics, he’ll be better than before.
He said: “People with Tourette’s have all this excess energy that goes into their tics.
“But if we find something that we love doing, all of that energy is re-channeled into that passion and we become this unstoppable force of nature.
“So while some people think we’re inept and can’t do anything, we’re actually thriving – we’re so much more productive than the everyday person.
“If you are someone like Lewis who likes singing or writing lyrics, you are going to be so much further ahead than your counterparts, purely because of your Tourette’s.
“We think in an entirely different way which ends up working so much in our favour.
“We read the world in a way that very few people can, and that is beautiful.”
Lewis announced he was taking a break from touring “for the foreseeable future” while he “adjusts” to the impact of his Tourette’s.
He said his performance at Glastonbury Festival at the weekend made it “obvious” that he needs to spend more time getting his mental and physical health “in order”.
Performing on the Pyramid stage on Saturday, he was emotional as the crowd carried him through songs as he struggled with his voice.
Lewis said: “Playing for you every night is all I’ve ever dreamed of so this has been the most difficult decision of my life.
“I’ll be back as soon as I possibly can.”
The reality of living with Tourette’s syndrome
TOURETTE’S syndrome is a condition that causes a person to make involuntary sounds and movements called tics.
It usually starts during childhood, but the tics and other symptoms often improve after several years, and sometimes go away completely.
There’s no cure for Tourette’s, but treatment can help manage symptoms.
The most common physical tics include:
Blinking
Eye rolling
Grimacing
Shoulder shrugging
Jerking of the head or limbs
Jumping
Twirling
Touching objects and other people
Examples of vocal tics include:
Grunting
Throat clearing
Whistling
Coughing
Tongue clicking
Animal sounds
Saying random words and phrases
Repeating a sound, word or phrase
Swearing
Swearing is rare and only affects about 1 in 10 people with Tourette’s.
Some people can control their tics for a short time in certain social situations, like in a classroom.
But this can be tiring, and someone may have a sudden release of tics when they return home.
Aidy Smith, who was diagnosed with Tourette’s aged nine, said these are the most common misconceptions about the condition:
It is a ‘swearing disease’ characterised by repeated bad language
People with Tourette’s can’t succeed in the workplace
It’s impossible to control your tics
‘Tourette’s’ is a ‘dirty’ word
It’s OK to make jokes about the condition because it isn’t serious
Source: NHS and Aidy Smith
Aidy was diagnosed with Tourette’s as a childAidy Smith
Aidy SmithHe is keen to dispel the myth that it is a ‘swearing condition’[/caption] Read More