Living with Tourette Syndrome - personal experiences
Hear 20 year old Ben's story on Channel 4's 'Embarrassing Bodies' (Ben features 21 minutes into the programme).
‘I was on the bus for my first day of secondary school when an older boy said to me ‘Have you heard there’s a boy in your year with Tourettes?’’ Joe Cooper recalls. ‘I couldn’t believe that it had already got around before I’d even got there.’
School is a hotbed of Chinese whispers for most people, yet for a pupil with TS such as Joe the rumours are far trickier to deal with than just the usual ‘who snogged who’. Joe was originally diagnosed with the condition when he was ten years old and was taken on first as a private patient and then under the NHS at Great Ormond Street. But it was after passing his 11+ exam and gaining entry to his local grammar school in Kent that Joe really had to face up to his Tourette's head on.
‘I didn’t have the vocal tics then but I was jolting my head around and people would always ask me what I was doing,’ he says. ‘Kids are always going to laugh at people with Tourette's but a lot of my teachers didn’t really know how to deal with it. I had a time out card, which was really useful, and I sat my exams in a different room but apart from that I didn’t really get much support at all. Kids with Tourettes need to feel that they’re understood and not treated differently, because it can be quite difficult to talk about.’
It’s because of this fact that Joe has decided to speak out about his own story. Now studying for his A-levels in Economics, Business Studies, Geography and Maths and with ambitions to become an oil trader, Joe says that his own TS is now under control. But he also realises that, with nearly 1 in 100 children suffering from some form of the syndrome, there are still many others for whom the ‘best years of your life’ are a struggle against prejudice and misunderstanding. The important thing to realise, Joe stresses, is that people with TS are not alone, which is why he advocates the establishment of more local support groups around the country, where people with TS and their families can meet up and develop the confidence Joe has found to manage his condition.
‘I wish I had met other people with Tourettes when I was really suffering and I would love to meet people now just so I could tell them about what their lives are really going to be like,’ he says. ‘When I first got diagnosed I thought "What am I going to do?", but you need to get on with it and hope that people will respect you for who you are. It can affect your whole family, because my brother has had comments made about me to him, but when people come together they can share their experiences. People need to know that it’s not the end of the world, that everyone has problems and that you can’t let it totally destroy your life. As (Everton goalkeeper) Tim Howard says, ‘Tourettes isn’t a brick wall, it’s just a hurdle’ and I want to help people get over that hurdle. Treat yourself as an individual and you can do anything you want. When you overcome the stigma of Tourette Syndrome, it will be the greatest achievement of your life.’
Interview by Paul Clarke
Tom is 23. He has had TS for the whole of his life but was only recently diagnosed. For 14 years, he's been writing, performing and producing his own music, a unique style of funky hip-hop he calls 'Word Magic'. He also draws cartoons, designs and programmes video games, restores and customises motorcycles and writes comedy and horror movie scripts.
In They Don't Know Jack (The Tourettes Song) he emphasises the relationship between TS and forms of artistic expression. "I want to encourage many others with TS to use their creativity to its fullest potential."
Tom ('Carpy') followed in his father's footsteps and became a DJ when he was 13 years old, also the year he ws diagnosed with TS.
His great passion is to sing swing, main influence is Michael Buble. When he was 14 his dream came true and he headlined his own concert at the Frome Memorial Theatre in a fundraiser for Tourettes Action. Later in the year, on a holiday P&O cruise, he took part in a talent contest and was invited back to headline his own show for the final night's cabaret.
Tom was nine when he won a silver medal in the British Tae Kwondo Championships, competing against young people from all over Britain, ireland and Holland.
"Tae Kwondo is an extremely disciplined sport. No one would know, watching him compete, that Tom has TS," says his mother Sally. "He has a really good sporting attitude, too. When he's beaten he shakes his opponent's hand and says 'well done'.
Francesca was diagnosed with TS aged 8. "I remember being frightened by the prospect of having a lifelong disease." However, inspired by a brilliant GCSE English teacher, she became friends with Hayley.
"I'd never met someone as passionate and focused. I felt an overwhelming belief in myself and my dreams of film making. I was 14 when I realised that if I put my mind to it, the things that I wanted to do were truly possible. Hayley and I co- directed and wrote our first short film - and we've never stopped since."
Francesca and Hayley's films have been shown at festivals around the world and have featured Youtube GLOBAL.
"My tourettes serves as a positive aspect of my life, something I have learnt from, and something that I am not ashamed of. I will not let it stand in the way of showing the world what I have to say."
Paul was diagnosed with TS aged 25 after ‘a lifetime of tics’. Now in his 30s, he is has just become a father and works as a One to One Support Worker and Music Teacher .
“Tourette’s is regarded as ‘that thing where they swear all the time’. I get annoyed when programmes sensationalise that particular symptom (coprolalia) and create a stereotype. I have total respect and feel great empathy for people with coprolalia, but feel compelled to speak up for those of us that don’t.
"People laugh when I say I have Tourette’s and tell me that I can’t have it - because I’m not like the people on the telly.”
For more on Paul and to listen to some of his songs, visit www.myspace.com/paulstanworth