Page last updated at 10:38 GMT, Thursday, 28 May 2009 11:38 UK

What happened to the boy with Tourette's?

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John Davidson faces challenges in his daily routine

By Tom Geoghegan
BBC News Magazine

Twenty years ago, John Davidson became the face of Tourette Syndrome, when a BBC documentary about his daily battles with the illness became a national talking point. His involuntary swearing made him an unlikely overnight star, but how has he coped with life since?

Few lives can have been so transformed by an hour of television.

When John Davidson sat down to watch the BBC's QED programme about his condition, John's Not Mad, in 1989, he was a lonely 16-year-old boy with such severe Tourette Syndrome that he was too scared to venture outside and face people.

Viewers of the documentary saw how his uncontrollable foul-mouthed outbursts and violent body jerks denied him a normal life. Some people in his hometown of Galashiels crossed the road to avoid him and told their children not to play with him.

FIND OUT MORE...
Tourettes: I Swear I Can't Help It is broadcast on BBC One on Thursday, 28 May at 2100BST
Or catch up using the iPlayer

But the next day, as he stepped out on to the street to nervously assess reaction to the programme, the same people he had been too embarrassed to face were stopping him to congratulate him on his bravery. Some even apologised for being unkind in the past.

"It was a total transformation overnight and life became so much easier," says John, now 37 and casting his mind back 20 years to the day his life started afresh.

"I started to make friends. I started to hang around the town and play football. I met a lot of good people, a lot of good friends who I'd known in the past but I felt I couldn't fit in with in the past.

John Davidson with dog Tilly
John has fewer problems when he's away from people and with Tilly

"It was like I had proved to people that I wasn't mad and I wasn't a freak. It was a medical condition. I almost became overnight someone who I'd always wanted to be - a normal 15-16 year-old."

The programme's impact went far beyond that corner of the Scottish Borders. As John began his first day as a "normal" teenager again, at least in social terms, boys and girls of a similar age were mimicking him in playgrounds and classrooms across the UK.

The documentary became a major talking point and John went on to become a spokesman for this previously hidden neurological disorder, campaigning to educate people about it.

He left school a year later without qualifications, but he later got a job as a caretaker at a community centre and he has worked there for the past 19 years. It's a life he enjoys, with close friends and relatives living nearby, and as well as his Tourette campaigning, he does a lot of voluntary youth work.

But while society has generally become more informed about the condition, John believes the QED programme inadvertently helped foster a misconception that Tourette Syndrome is about swearing, although this affects only one in 10 people with the illness.

John with mother
John's mother featured in the first programme

"People I know with Tourette's don't have coprolalia [involuntary swearing] but they suffer as much as I do."

John's condition encompasses a whole range of other symptoms, such as echolalia, which is repeating others' words, and sudden, violent body movements.

He has a severe form of obsessive compulsive disorder which he says is mentally exhausting. He feels he has to walk on pavement cracks and touch lamp-posts, and he gets up six times a night to check the front door is locked.

He has an urge to touch men's crotches and women's breasts, but without any sexual motivation, he says. It's as if the self-control switch that others have in their brains is not working.

And there's an invisible side to the illness too. John is constantly resisting a destructive urge that haunts his thoughts. It could be to knock over a pint in the pub, smash a piece of crockery or jump in front of traffic.

He has to sit in the back of a car, with the seatbelt wrapped around his hands, because he would try to grab the steering wheel or assault the driver.

Shame

"I'm fighting against really bizarre thoughts that come into my head, sometimes quite visual things that are going to happen and I go through them in my mind and it creates panic attacks and anxiety attacks.

TOURETTE SYNDROME
is an inherited neurological condition
often causes uncontrollable sounds and movements (tics)
affects 1% of school age children
tics disappear in late adolescence for about half of children with TS
only 12% only have tics
the other 88% also have other conditions to manage
these include attention deficit hyperactivity disorder (ADHD), obsessive compulsive disorder (OCD), problems sleeping, rage attacks, anxiety and depression
only 10% have coprolalia
Source: Tourettes Action

"So things that you see in the condition are not all there is. So much is invisible and going on within a person's head.

"That's the most difficult part for me to deal with because I feel so alone with it. It's very difficult to share with someone that you've just had a thought about going up and kicking a wee boy in the nuts because he's dropped a piece of litter."

Although public acceptance has made John feel much more comfortable in society now than he did when he was 15, day-to-day life is still very difficult.

He generally has fewer tics (uncontrollable sounds or movements) now than he did when he was 15, but certain social situations like the supermarket still exacerbate it. When he feels one coming, his stomach churns and he gets pangs of anxiety, before an eruption of abuse, that can be sexual, racist or personal.

Pete from Big Brother
Big Brother winner Pete Bennett put Tourette's back in the news

The guilt, shame and embarrassment he feels has not diminished over the years. And he is constantly worrying about what people think of him, and apologising.

"I don't like upsetting people, I don't like offending people and that [embarrassment] is never going to go away because that's the kind of person I am."

He still faces ridicule and his favoured response is to strike up conversation and try to explain his condition. People who find his outbursts funny don't realise how hard these tics make his life, he says.

Many viewed the first programme as entertainment, rather than a documentary, he admits, but that perhaps was the only way awareness of the illness could be raised to the height it was.

Some days he has thousands of tics, and these outbursts have prevented him having a lasting relationship with a woman. The thought that he probably won't have children gets him down. But he has good days too.

"Even at work when there are people around me, if I'm having a good day, I'm happy as Larry and I go round whistling and I can focus 100% on what I'm doing. But on a bad day I want to hide."

I enjoy my life now but back in '89 I didn't go out, I was scared of people

Fishing, on his motorbike or walking in the countryside with his dog Tilly are the times when John's tic is diminished and he feels most at peace.

"There are no [social] boundaries and no limit to any way I need to behave. So the stress of trying to control my behaviour does not exist and the stress level is reduced."

He does relaxation exercises at home, attends cognitive therapy and takes medication to alleviate the tics and the OCD, but he knows Tourette's is something that will always be with him.

And much as he hates the acute embarrassment and shame it causes him, he would miss it if it suddenly disappeared.

"Tourette's is part of me, it's who I am. I would find it very bizarre and strange to suddenly get up one day and not have tics. It would be wonderful but after a while I would find it really difficult and I would worry that it would change me as a person.

"I do believe that Tourette's has made me the person I am. I'm very understanding, I'm open-minded and I care about people - too much, most of the time."


A selection of your comments appears below.

I have had Tourette's Syndrome since the age of seven and I never knew what it was until I saw the program about John Davidson. I'd like to thank him for having the courage to go on TV with something as embarrassing and distressing as Tourette's Syndrome. I wish people would be more understanding and not think it is one big joke because it is not. I don't have a swearing tic but I do have a self-harming one, which, like the swearing is rare. Like I have just read, it also has made me a caring and open minded person. I just wish people would be the same.
Sarah, Crewe, Cheshire

It's fantastic that he felt able to talk openly about having Tourette's, but it's true that it has become stereotyped as 'those people who swear a lot'. I have mild Tourette's- I have trouble breathing, swallowing and blinking when I'm stressed and I compulsively retch- and I'm trying to be as open as possible about it, but people often don't believe I have Tourette's, because I don't have a problem with swearing.
Rhian, Oxford

I am exactly the same age as John and I remember the initial programme well. I was one of those children who found it hilarious the next day and mimicked John in the playground. I have though, thankfully grown up now, and reading this feel a little guilt for my childish behaviour, but more importantly impressed by John and how he has dealt with his illness and what a sound bloke he's turned out to be. I will be watching the updated programme tonight and wish him the best of luck for the future!
Ben Skinner, Leeds

My 11 year old grandson was diagnosed with Tourette's Syndrome when he was seven. He has a mild form of the neurological disease, but even in it's mildest form it can be very distressing. He has tics which change from day to day, has trouble sitting still in class and is very impulsive and daring in his activities. On the plus side it seems to be compensated by an incredible memory which enables him to excel in math and he has learned to play the guitar as if he's much older, in a shorter period of time. He struggles with getting homework in on time and organizing his work. It's interesting to note that Tourette's is a genetic illness and my son-in-law was diagnosed when his son was. He didn't even know he had it although plagued with tics and having to stay physically active to calm himself and be able to sleep. He is manager to over 200 people and has a great career, so it's not necessarily a drawback to everyone. We need more understanding of Tourette's Syndrome in schools! And people should know that it can be mild to severe and has nothing to do with intelligence.
Patricia, Toronto, Ontario, Canada

When I was at grammar school a boy in my class was always fidgeting and making outbursts, which often earned him a term's worth of detentions within the first week of starting each new term. Besides that certain other boys in the class subjected him to brutal thuggery. Despite this he soldiered on, got 8 O Levels and could have entered 6th form had his parents not withdrawn him from school. The last I heard of him he was managing at Tesco.
Hazel, Erith, Kent

I think most of us do snigger a bit and find it funny (even the shop assistant in the video smiles) no doubt in part to the way Tourette's is displayed in the media and our own social taboos. But I'll hold up my hand and say well done to both John and the people of Galashiels. I had no idea how physically and mentally exhausting the condition must be, and I'm proud of the folks in that wee borders town for accepting John. Quite inspiring - shame I can't see the show here in the US (hint, hint BBC America....)
Glenn Hoddle, Portland, USA (via Glasgow)

My 15-year-old son was diagnosed with Tourette's last year - after having the symptoms for more than seven years, every time the doctors diagnosed something else! Programmes like this can only help the sufferers who don't get diagnosed and help the public understand what can be a very upsetting condition. My heart breaks for my son, and others like him.
Anon, Surrey, UK

I am also a sufferer of Tourettes, but I have it in its most mild, most unnoticeable and indeed, most controllable form. This case highlights just how very lucky I am and I always remember that fact! I have always had a fantastic peer group and family, and the doctors I have dealt with have been second to none and not stopped in helping me every step of the way. I believe if more people had access to support and someone to talk to, they would feel a lot more at ease with things. Public acceptance is better, and I don't view this to be an issue. I am seen as 'one of the lads' and I have all the things any other 23-year-old has - a flat, many friends, a good job and even have had many chances at forming good relationships.
Steve, Nottingham

My partner has Tourette's and like John he's one of the kindest caring people you could meet. It really isn't all about swearing, so its a shame that tonight's programme has that as its title - come on BBC that's lazy journalism! Its one of the few disabilities where it's acceptable to make fun of, there's even a range of cards with "Mr Tourette" character swearing inappropriately. Let's educate people what Tourette's really is, a day to day battle with a range of thoughts and compulsions that make life a real struggle. Most people with Tourette's suffer in silence and don't turn the air blue!
Donna O'Brien, Epsom

Thank you John for being brave enough to let yourself be filmed and for all the voluntary work you have done over the years. I understand how hard your day to day life still is and am filled with wonder at how you manage to still have the ability to face each day with hope. You are a brave man and should be congratulated for being an example of the human spirit against adversity. Thank you for being you.
Tom Ireland, Stratham, New Hampshire, U.S.A.

Great story. When my son was diagnosed in 1993, I remember reading about John during my search to find any TS info. I will email this story to my 22 year old Touretter.
C. Hollis, Richmond Hill, GA

I actually find it quite nice when sometimes, in the shops or down the street, you hear one of John's familiar yells. He's a very good man who would help anyone and I think Gala is proud of him. Well done John.
Mary, Galashiels, Scottish Borders

I just wanted to say that I have just watched the show and think it is fantastic that you, John, have raised awareness about the condition, so that life is better for the next generation and that people are more accepting of those others who are coming after you. I am just very saddened that you did not have the understanding and friendships that you so rightly deserved. But you have surrounded yourself with many loving and supportive people. You are an outstanding human being and I greatly admire you!
Maggie Anne, Glasgow

What a brave man! This article caught my eye on the internet because I have just finished a book called Awakenings about Encephalitis Lethargica the so called sleepy sickness of the early 1920's. There is so much we don't know yet! I suffer from ME - a different yet also misunderstood chronic illness. I'm so sorry it affects his relationships. I think this is also common to any chronic illness. I'm amazed to read that pockets of encephalitis lethargica crop up from time to time yet never hit the news. As a student nurse I recall a supposedly schizophrenic patient in her old age. She had been hospitalized for years. I fear she was an undiagnosed Tourettes or similar. I'm so glad this man can lead some kind of life outside. I fear many in the past have not and he is a brave man to speak out for his condition.
Maura Coyle, Stockport

I've also seen the excellent "Tourettes de France" with Keith Allen which John also stars in. He's a wonderful guy and I'm sure very inspiring to younger Tourettes sufferers.
Mungbean, London, England

I've spent much of my life wondering whether I ever really would give in to the mad thoughts that occur to me sometimes, and whether other people have them, too. I've often wanted to shout out in a quiet moment in a concert or in church, or in the usual wedding situation, or even throw food or slap the vicar on the bottom. Yet I'm a respectable middle aged violin teacher. I especially avoid big, silent situations. Am I alone in this?
Elaine Bonner, Great Missenden Bucks

I remember watching this documentary at the time with a sense of wonderment and horror...All I kept thinking was "how does this boy cope with all this??"... Anyway it's great to see that John has so far had a fulfilling life despite his condition, and hopefully will continue to do so.
Craig Bell, Hull



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