Chris was born to Gilles de la Tourette. ‘Tourette’ is a genetic tic disorder that you are born with, but that often only manifests itself later in life. Many people think that Tourette is characterized by uncontrollable harsh name-calling, but this is a misunderstanding. “Swearing can certainly be a tic, but this tic only affects a small percentage of people with Tourette’s. There are many other tics, distinguishing between motor and vocal tics. Motor tics express yourself in movements and vocal tics with sound .”
“Currently, I mainly suffer from motor tics, such as blinking and squinting my eyes, twitching cheeks, grimacing with my mouth, pulling up my nose and other small, subtle and short movements in my face. In addition, I sometimes have to raise my arm or leg tense a certain way.”
First tics in fourth year of life
Chris’s first tics became apparent when he was four. “From a hard ‘no’ shaking with my head to a squint. My parents took me to the doctor to find out where the tics came from, but they didn’t learn much. In the end, the conclusion was that expressing my tics was a negative way of seeking attention.”
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In the years that followed, the number of tics increased and Chris and his parents visited various doctors and homeopaths. “I started to make more and more ‘crazy’ movements with my face. No specialist recognized my tics as Tourette’s. My parents gave up when I was twelve. Later, when I was sixteen, I did my own research on the internet and discovered I thought it might be Tourette. I found a laundry list of tics to go with it and recognized myself in many things.”
No recognition
Although Chris himself was convinced that he had Tourette, he did not find this recognition at home yet. Again he let it rest until he was 24 and lived with his then girlfriend. “She saw how much the tics hindered me and encouraged me to have it examined again. After conversations with various doctors and neurologists, I was diagnosed with one neurologist within five minutes. On the one hand, very nice, because that I felt less lonely and more understood, but on the other hand I realized that I can’t get rid of it for the rest of my life.”
Immediately after diagnosis, Chris began therapy and medication. “This was very valuable to me. I had suffered a lot emotionally from a lot of bullying and loneliness. Talking about it helped me to give everything a place and to accept myself again. The medication was effective: my tics became less and it felt a kinda like I could start over.”
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The period in which the diagnosis had not yet been made has left its mark. “I’m doing a lot better now, but at that time I often felt alone. Because of lack of knowledge for a long time, I felt little support from doctors, but also from my parents and other people around me. At a certain point I started doubting myself and I thought: “Have I gone mad? What’s wrong with me? Maybe they are right and I am indeed doing it to get attention.” But in the meantime I also knew that I really couldn’t do those tics fuses.”
difficult years
Especially his high school days Chris likes to forget as soon as possible. “I was bullied a lot because of my tics. Students imitated me and used every moment to humiliate me. I was regularly kicked and beaten. Those were very difficult years. I also received little support from school so I could not go to anyone rightly so, which made my self-esteem very low.”
After four years of bullying at the VMBO, Chris went to the MBO in another city. “A whole new world opened up for me there. People accepted me, even with tics. From the first day I was well received. At first I thought: ‘don’t kick in, they are playing a game with you’. But it turned out to be real. That was very valuable to me.”
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According to Chris, having Tourette is quite a task. “It’s very tiring. You keep making movements that you don’t really want to make. When I’m in a place where I feel it’s socially desirable for me to contain my tics, I do everything I can to ‘tickle as little as possible’ “But when I’m back home afterwards, I’m completely devastated. Holding in tics takes a lot of energy.”
“When I come home after that and am alone, all the tics come out. I have to get rid of all that stress and built-up tension. When I don’t feel comfortable or when I’m nervous, the tics get worse and it costs me all the more more effort to contain them.”
Tics require a lot of attention
Some days Chris has so many tics that he can’t do his daily activities like study or work. “You have to see it as an energy leak: you are constantly leaking energy to movements that are unnecessary. I know people with Tourette’s who cannot function well at work or study and as a result have to stop studying or get a burnout. Also your concentration is impaired by Tourette, because those tics demand a lot of attention.”
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Some tics have been present and repeated for so long that they cause physical damage. “I suffer from overstretched muscles and tennis elbow, due to an incessant tic with my arm. I think I have already overloaded everything in my body. The physio helps me to counteract this and limit serious consequences.”
Pain is a trigger
While some tics are painful, Chris continues to perform them. “It may sound crazy, but pain is a trigger for Tourette to repeat a tic. In addition, tics repeat because your brain is always looking for a certain, satisfying feeling. That feeling can sometimes only come after you have a tic 100 times done.”
Chris is bummed that he was diagnosed so late, but doesn’t blame anyone. “The knowledge should have been with the doctors. They should have known, ‘Hey, this boy has a tic disorder, that could be Tourette’s.’ .”
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Tourette expresses itself differently with everyone. “Some people therefore benefit better from one drug than the other. There are also many gradations in the types and severity of tics. With one they are very striking, while with the other you do not even notice that the person has Tourette. Tics can change over time, become less bad or more intense. You have absolutely no influence on this yourself.”
‘We really can’t do anything about it’
Chris thinks it is very important that more is known about Tourette. “A lot of people don’t have a very positive image of people with Tourette’s. I would like to improve that image in a positive way. More awareness about this condition would help us enormously. The tics are annoying for others, but even more annoying for people with Tourette’s themselves. People We need to know that we really can’t do anything about it.”
“Having Tourette can be very annoying and have a big impact on your life. Some people more than others. There are degrees, but I think I speak for a lot of people with Tourette when I say it’s a big task is.”
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Do you want to know more about Gilles de la Tourette? The Gilles de la Tourette Foundation is committed to making life more bearable for people with Tourette’s and those around them.
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