It’s Tourette’s Awareness Month this June – we spoke to two people with a diagnosis to find out more about living with the neurological condition and helping increase acceptance
We all know the stereotype – the young man, swearing randomly as he walks down the street, upsetting members of the public, making others laugh. People have poked fun at Tourette Syndrome (TS) for years, but living with it is no laughing matter.
Luke Manton, who developed the neurological condition after a brain injury in his midtwenties, explains: “When this first happened to me, I changed drastically, almost overnight. Not just physically, but mentally as well. It makes you want to be invisible. Even if I was out with my partner George, I noticed people looking at me. It ends up spiralling, which makes my tics worse because I get stressed about it.”
15-year-old Pip can relate. “School’s really stressful, so that heightens everything,” she says. Pip was diagnosed at 12, after experiencing tics from a young age. She also has OCD, ADHD and ASD, which are common co-occuring conditions for people with TS. At school, she’s on an adjusted timetable, but getting educational support has been challenging. “It’s the lack of understanding,” says her mum, Becca. “Things like health and safety in science lessons –” “Yeah with bunsen burners and chemicals,” interjects Pip. “It’s not safe. No one takes it into account.”
ALWAYS MOVING
Pip’s Tourette’s means she has involuntary vocal tics, including whistling, clicking noises and swearing in sentences. Coprolalia – or involuntary swearing – affects between 10 and 20% of people with TS. “I’ve also got motor tics like head jerking, arm jerking and facial tics,” Pip reveals. “And I’ve got some hitting tics where I hit myself, other people or things around me.”
“At school, Pip focuses so much on suppressing her tics that she can’t pay attention to what’s going on,” explains Becca. “It can leave her absolutely exhausted.” Then there’s the pain, which few people understand – but frequent head jerks and bodily movements can lead to joint, neck and back pain, as well as injuries from hitting out. Pip describes it as “debilitating”, while Luke laughs “I definitely don’t need to go to the gym!”
RAISING AWARENESS
Celebrities including singers Lewis Capaldi and Billie Eilish have shared their experiences of living with TS. Capaldi’s fans famously sang his lyrics back to him when he had a severe ticcing attack on stage at Glastonbury, and was unable to perform. It made headline news, and his openness about having the condition has increased awareness.
But, as with all awareness raising, actual acceptance can be slow to follow. Becca shares: “Before Pip started her medication, the swearing and motor tics were very obvious. In shops, she would grab things off the shelves and launch them. She was quite astonished when she was asked to leave a shop once.”
STRIKING OUT ON HIS OWN
Luke lost his job after his symptoms developed. “I have two first class honours degrees and management experience, and nobody would hire me,” he admits. “They preach equality and diversity until they’ve got someone swearing at their clients – then they’re just not interested.”
He launched his own business as a virtual assistant. “I picked this industry because I thought I could work without having to go anywhere, see anyone, or speak to people face to face.” That backfired (in the best way possible), because Luke’s company Manton Executives now employs a team of ten, and supports neurodivergent-owned businesses. Luke also shares his everyday experiences of life as an entrepreneur and new dad via his popular LinkedIn and TikTok accounts.
Both Pip and Luke work with the charity Tourette’s Action as ambassadors, sharing their experiences and speaking to people affected by TS. Luke explains: “I feel like I’m making a difference because I get messages from parents of people with Tourette’s who say they’ve learned so much from me.” Pip recently talked about her experiences on Radio 5, and has discovered amazing friendships through the Tourette’s Action teen activity camp: “I met one of my best friends through the camps. She lives 300 miles away, but we call and message a lot, and make plans to meet up.”
Tourette’s Action has provided them both with community and acceptance. Luke used to spend hours chatting in online groups set up through the charity, and told us: “It’s so nice to finally have other people that understand what you’re going through. You’re not as isolated as you think you are – there is a network out there and a group of people that you’ll fit in with.”
FOR MORE INFORMATION
Follow Luke on TikTok: @ticcedtoc
Tourette’s Action: www.tourettes-action.org.uk.
Note: While writing this article, we’ve edited out swear words, verbal tics, or stammers that took place during our interviews with Luke and Pip. This has been done to aid readability of the article and make it as accessible as possible, and also due to space limitations. Enable fully supports people with all disabilities and we have no intention of silencing the voices of people with TS, but wanted to explain our reasoning behind editing our interviewees’ words. Thanks for your understanding.