L.Last month, singer Billy Ellis spoke openly about his experience of living with Tourette Syndrome. “I’ll never stop,” he told talk show host David Letterman. “I continue throughout the day, the main ticks: I roll my ears back and forth and raise my eyebrows and click on my bangs.” She also flexes her arm muscles, she says. “These are things you will never miss if you are talking to me but, for me, they are very tired.” Interviews raised awareness of the still misunderstood situation – and helped dispel some of the prevailing myths.
Although more than 300,000 people in the UK are aware of Tourette Syndrome (TS), the actual number could be much higher. But a common misconception is that this condition is known as loud, involuntary swearing – coprolalia. It affects only 10-20% of people with the condition; People with TS have a wide range of taxes that can include voice and movement, and often have co-occurring conditions such as ADHD and obsessive compulsive disorder. So, what does it feel like to live with this situation?
Ed Palmer, 30, is a doctor living in Birmingham
When I was little we used to call them “my habits” because I don’t think anyone knew what they were. I open my eyes really wide and say I was trying to get air into them. I was diagnosed at 14 – my mother googled it and thought it might be Tourette syndrome.
There are periods when ticks go bad. In the test race, when I was tense, I would spread my fingers so much that I would tear the skin between them. I have to tap them together to stop me from doing this. Eye drops make my eyes red and give me a bad headache. I bite my cheek and move my teeth and gums in a certain way that makes my gums bleed.
I realized that, for the most part, my ticks were organized – it was only during periods of stress that they were bad, so I was referred to a doctor for help dealing with anxiety, more than the ticks themselves. I told the specialist that if there was any tablet that would permanently remove my ticks, I would not take it. It’s part of who I am.
If I am taking an interview, or looking sick and I am aware that it is distracting for them, or if I am doing some practical work where I need to keep steady I actively suppress them. I am training to be a psychiatrist, but while I was working in the hospital, a surgeon once asked if it was safe for me to have surgery. Coming from a doctor, it was a bit ignorant and the way it was phrased was quite offensive. I said, in no uncertain terms, this was not a problem.
My most common tick is when I move and stretch my neck, so I ask someone: “Did you do something to your neck?” Then I decide to give them a long explanation, or just go: “Oh, I pulled a muscle.”
As a doctor, I think it gives me an insight into what a diagnosis or chronic health condition is. I was never clinically interested in Tourette’s syndrome, but after a clinic in a children’s hospital, I liked it. When a child is diagnosed, thousands of things go through the parent’s head. I think it was reassuring for them to see a doctor with a child-like condition.
Laura Allen, 20, is a student living in Glasgow
At school, I would be kicked out of the classroom for rolling my eyes and breathing, because the teacher thought I was rude, but I didn’t know I was doing it. I will hum a lot, the most stupid, humming voice. We didn’t know they were ticks, it was removed because I was a worried kid.
When I was 14, I started developing these screaming, hiccuping sounds. This was happening several times a day, mostly when I was stressed. For someone who doesn’t like meditation, it made me incredibly anxious – I was being attacked by terror and didn’t want to be at school. I’ve heard of Tourette Syndrome but I think it’s the only thing that makes people swear.
When I was 17, it got worse, with physical and vocal ticks – random words coming out, and I started hitting myself. It was so bad that I stopped going to my classroom. Then the epidemic hit, and I tried to study at home, but it’s hard to read and get information while you’re constantly on the move – I have no qualifications.
I am currently studying childcare and I am working on an appointment at the nursery. I’ve noticed that my ticks go away when I’m around kids, maybe because I’m so focused and relaxed, it’s the most amazing thing. Music also helps – if I’m listening to music, I last less and sometimes I don’t.
My college class doesn’t know the real extent of it, because, I told some of them, I always suppress it, so they haven’t heard most of my vocal ticks. It’s tired. When I get home, all the ticks come out. I struggle to be able to talk because one hungry tick will come out, and then another, and then I will hit myself. There are at least three occasions when I have pulled myself out because I have punched myself hard in the head.
Vocal ticks scare me because I can call anyone, I can get arrested. My neurologist told me I had Tourette’s syndrome to make sure I always got something, if any police officer pulled me. I’m not in the habit of going out. If anything objectionable comes out in the voice, I separate myself. My neurologist has been using various medications in the hope that something will work, but he said that my case is one of the worst he has ever seen.
Society jokes about Tourette’s syndrome, but it’s more than that. I have no control over whether I am injured or not. My thoughts, speech and actions are out of my control and it is exhausting, my mind is constantly active. It gives people a lot of physical pain, and a lot of emotional pain. You just have to be more discriminating with the help you render toward other people.
Genna Barnett, 31, is a senior program manager for a charity based in London
I was diagnosed when I was seven. I remember child psychologists asking me to describe how I felt. I scratched myself with a bubble inside my stomach; The only way to break it was to tick it off – it’s a great description of how it still feels.
I would make a loud noise, like a hiccup. I would tap my cheeks and hit my shoulders and hands. I have this tick, where I strain my abdominal muscles. When I was younger, I used to worry that it would make me urinate, so I used to go to the toilet a lot like 20 times a day.
Between the ages of seven and 25, I was very embarrassed and ashamed. I tried to hide it, and never talk about it. I had a close group of friends who were good with it but I had random people coming into the corridors with me, which was not good. It really affected my self-confidence and I had very low self-esteem.
I still make noise but they are very quiet. People will say: “What is this?” Or make fun of it, then I have to explain it, but most of the time my ticks are quite subtle. People just think I’m doing weird things with my eyes or I have a cough. I don’t think they will know until I tell them.
It’s only in the last three years that I’ve been proud of it, and I’m now a trustee of Tourettes Action. Neurodiversity has almost calmed down, so that broader context has helped me and made me more secure and confident in who I am. I never thought how embarrassed and ashamed I felt, then I started asking questions. I hate to make my children and other young people today feel that way.
David Masters, 71, is a retired lecturer and lives in Burry St. Edmunds.
Even if you do find ways to cope, the effort to suppress ticks can feel like ticking in itself. One of the things that people with TS say over and over again is that if they can find enough focused activity, their ticks will go away. I discovered that art was something I could fully absorb, and I went to art college. Then I became a teacher and lecturer; Sometimes, I would tick, but overall my tick goes because I was so excited and absorbed.
I was not diagnosed until my 40s. I went to a neurologist with a strange muscle spasm in my arm, and he said: “There’s nothing seriously wrong, but did you know you have Tourette’s syndrome?” I said almost immediately: “You just explained why my life is like this.” It has given me new confidence.
The tack I did included sounds – coughing and screaming – but mostly physical ticks, including shrinking shoulders, twisting the head, and blinking at the point of pain. Now I know my mom had TS, but much more serious than I did. When I was diagnosed, I had to decide, because she was so old at the time, whether I told her or not, and I chose not to do it – I think she felt guilty for doing something to me.
In most cases, there are co-occurrence conditions. I’ve had bouts of anxiety and depression. Stressful situations, lack of sleep and anxiety are all ingredients that will bring some very serious ticks. You learn to look at yourself and see things coming. For decades, I thought I must be somehow inadequately human. I am grateful that someone gave me the opportunity to tell you what it is; Fits everywhere.
Paul Stanworth, 50, is a musician and lives in Sussex
At the age of 20, I was working in the police office. For the first nine months, I was the star of the department. Tourette syndrome gives you a lot of energy and if you can channel that energy, you can use it well. But, after a while my ticks started to get worse and, because I was sitting at the desk and forced to stay quiet all day, I had no discount for them. I go to the top of the stairs and see this huge outburst of taxes, almost like a cramp, but I still don’t know what it is.
The GP referred me to a psychiatrist, and when he said: “I think you have Tourette’s syndrome and possibly OCD,” it was a relief. I cried because I was glad they knew what it was.
I have a culture of breathing, where I have to breathe when I see some things and exhale when I see other things, and even when I hear some words. Normally, you breathe for something you like and you go out for something you don’t, clean or dirty, good or bad. I need surgery as a result of some of my ticks. I have a tick in my hand, which means I underwent tennis elbow surgery; And I used to hit the side of my nose. After 10 years or so, I had some damage, so I had to have surgery to repair it.
I’m still in a position to suppress it, but I also tell people about it. If someone sees me and I’m doing a bunch of ticks, where I hit my head to one side, squeeze my face or make a small noise, they don’t immediately think it’s Tourette’s syndrome, they may think I’m a little weird. Then, I think I should explain it, but I don’t. There would have been more consciousness.
I am married with two children. I’m very open with them, and they know they have a chance to develop some ticks. Before I had children, I lived with my wife, and we had that conversation. I was worried, but she said: “If they have, we’re in a good position to support them, because we understand that.”
I was medically retired from the police, and I knew I would never be in the office again, so I had to take another way to make a living; I always play music as a hobby, and now it’s my full-time job. Music has always been my medicine, and many people with Tourette’s syndrome say that performing arts can be a good way to manage it. I like what i do Those with Tourette Syndrome have amazing talent, driven by this unique energy. It drives me – I’m more emotional than ever, and I don’t think I would be without the energy I got from it.