No announcement yet.

I’d just like everyone to have Tourette’s for a day

  • Filter
  • Time
  • Show
Clear All
new posts

  • I’d just like everyone to have Tourette’s for a day

    I’d just like everyone to have Tourette’s for a day to know what it feels like
    Liverpool News
    Apr 24, 2014

    Tom Baker has Tourette Syndrome

    Tom Baker gets stared at. Not just sometimes, or even often, but usually every day.

    People move away from him in crowds and he’s been asked to get off buses. Before leaving the house he has to think twice about where he’s going and who else will be there. “I’d rather be somewhere it wasn’t too busy and there weren’t many small children,” he explains.

    Tom has Tourette’s Syndrome, which can cause him to tic for hours at a time and suddenly shout and swear. His chest and legs are now so used to being punched, he no longer bruises.

    Naturally easy-going and funny, he’s learned to make a joke of the outbursts to diffuse any embarrassment and potential trouble they might cause.

    “And I’d rather people had some kind of reaction, even if it’s only to laugh, instead of looking away,” he says.

    “I was out the other day with my mate and someone said to him ‘what’s he got? Is there something wrong with him?’ and I was sitting there. I said ‘I am here, you know. You can talk to me.’ But people behave as if you’re not there and it’s hard not to lose patience with that. I just try to keep calm and let it pass.”

    What 20-year-old Tom would really like is for people to understand his condition more.

    That’s why he has launched a campaign with the help of Fixers, a charity which supports young people in tackling issues that matter to them.

    Tom, who lives in Waterloo, has made a short film entitled A Day With My Tourette’s which he hopes will highlight just how hard life can be for those who suffer with it.

    He doesn’t let it get him down, he says. “I’m used to it, it really doesn’t bother me most of the time,” he smiles. “But there are times when I get to the point of thinking I just wish it would stop. It does make you self-conscious and I’ve stayed in my room not going out or doing anything, but I don’t see the point in being negative about it. I can’t just sit at home being depressed so if I suddenly shout ‘chickens’ or something like that I’ll laugh because then it makes everyone else laugh.”

    At school in Southport , Tom first noticed tics when he was 12 years old. “I thought nothing of it really, I just thought it was normal, like a nervous habit,” he remembers. “Sometimes in class I’d suddenly throw a pencil without realising, then wonder where it had gone.

    “The teachers probably just thought I was naughty but I’d think, I don’t know what I’m doing. Why am I in trouble?

    “It wasn’t until it got worse and the swearing and shouting started that I thought something was wrong. The first time I shouted out I thought, what the hell is this?”

    Tom was only diagnosed with Tourette’s Syndrome just over a year ago, after leaving school and going to college to complete business courses.

    “It was a bit shocking when I was told at first, but at the same time it came as a relief,” he says. “Now instead of saying ‘hi, I’m Tom, I’ve got a tic disorder’ I can say ‘hi, I’m Tom, I’ve got Tourette’s Syndrome’ and people know what that is more.”

    Although the condition has had some media profile, raising awareness, Tom says reactions can still be hurtful and it has affected his whole life.

    “I can’t go to the cinema like everyone else, and I can’t ever really relax,” he explains. “I’ll be in bed or sitting in the house and I’ll tic constantly, it can go on for hours, and it’s physically and mentally exhausting. I sometimes have to take medication to help me sleep.

    “And it’s worse when I’m tired and stressed. If I’m out with my friends in Waterloo it isn’t that bad because it’s only quite a small area and people know me, I feel more secure there, but otherwise everyone stares and comments. I don’t like going into town at all.”

    The more he tries to keep the outbursts under control, the worse they get.

    “I went out for my mate’s birthday and I was holding it in all night so I didn’t attract any attention. Then when I was on the bus home all of a sudden my nose just exploded and started to bleed uncontrollably. It was awful, I didn’t know what to do, it was just caused by the pressure of trying to stop myself shouting out.”

    Some friends have been supportive, he says, others have been more distant. “They’ve dropped me,” he smiles. “With girlfriends, hopefully I could find a person who could accept me the way I am.”

    Getting a job has been equally fraught. “I’ve got as far as the interview stage but then I’ve shouted something or sworn. I said ‘you f***er to one interviewer,” he says cringing. “Then it’s a ‘no thanks’.”

    Tom has plans instead to start his own business in disability awareness. “I want to help change people’s attitudes and make them a lot more positive, especially towards things like Tourette’s, OCD and autism,” he says.

    “These disabilities are actually talents to the people who have them, they’re a gift, that’s how I see them and I wish other people would see them that way too.

    “That was the point of making the Fixers film. I’d like everyone to have Tourette’s for a day just to know what it feels like. I wouldn’t wish it on them for longer than that.”
    TouretteLinks Forum

  • #2
    Re: I’d just like everyone to have Tourette’s for a day

    I'm sorry that people have to be so ignorant. It upsets me. My son is 7 and he swears and has head/ neck/ shoulder ticks. We went to Costco and it was very stressful for him and he was ticking bad. Of course people were staring, and backing away. And these were the adults. Like really people?? I was never so mad and pissed right off. How dare they judge my son. I'm thankful he isn't aware of these rude people ....yet. I've had many arguments with parents b/c there kids is yelling at my son because he says bad words. The children I can understand, its the adults that really make me mad.


    • #3
      Re: I’d just like everyone to have Tourette’s for a day


      It must be very frustrating to see people respond negatively to your son's symptoms. In most cases it's because of lack of awareness that can usually be resolved with information.

      Have you ever just said, my son's movements and/or sounds are because of Tourette Syndrome?

      It might also help to carry around a few copies of the TSFC's FAQ brochure or you can print off one of the many brochures we have on the Forum HERE and hand it to them.

      Kids can be informed in much the same way by saying something like, "My son has Tourette Syndrome which causes him to make movements and sounds he can't control. You don't have to worry because you can't catch it and he'll be glad to speak to you".....or something along those lines to inform and reassure.

      Kids usually reflect the lack of awareness of their parents and take cues from the way their parent(s) respond to a situation.

      Information given is a polite and conciliatory tone might help diffuse these unfortunate situations.
      TouretteLinks Forum