I have Tourette’s syndrome. I don’t swear and I don’t scream [LIST]

The most popular picture of the disorder is a man waving his hands, from whose mouth a stream of profanity suddenly comes out. This is a stereotype, and it is very harmful, because coprolalia, or swearing tic, is only 10-20 percent. suffering from Tourette’s syndrome. Piotr Chojna, who has been struggling with vocal and motor tics for over 25 years, told us about what life really looks like with this disorder.

1. Tourette’s syndrome is a congenital neurological disorder characterized by motor and movement tics
2. Symptoms are often visible for the first time in childhood, usually around the age of seven. However, the diagnosis of the disorder can be delayed, e.g. due to the intensity of children’s development and the assumed transitory nature of certain behaviors
3. This was the case of Piotr, who waited 14 years for his diagnosis
4. On June 7, we celebrate World Tourette’s Awareness Day
5. More current information can be found on the Onet homepage

“The hardest thing for me was not the tics themselves, but the side effects of the medications”

When I was six, I started blinking my eyes hard. It was so intense that at some point I started to feel pain around the eye sockets. My parents took me to an ophthalmologist. To their surprise, the doctor found that the eyes were completely healthy. Another symptom appeared shortly after this visit. I started grunting and squeaking. Then my parents went with me to the pediatrician.

The doctor said that I have tics and that most preschoolers have tics. She reassured my parents by telling them not to worry because that would surely pass.

Over the next years, the tics were very subtle, sometimes even dormant. By the time I turned 12, my symptoms got worse. They were joined by a whole range of different motor tics (head shaking, jumping, lunging hands) and vocal tics (squeaking, grunting, shouting, repeating certain words several times – the so-called palilalia).

The situation became very disturbing for us, so we went to a pediatric neurologist. The doctor decided that I had chronic tic syndrome and prescribed medications. These were very powerful substances that reduced the intensity of the tics, but also had a lot of side effects (constant drowsiness, difficulty concentrating, trembling hands).

The side effects of drugs disturbed me a lot in school. It’s a paradox, but the hardest thing for me was not the tics themselves, but the side effects of the drugs. They made my learning and everyday functioning difficult. For this reason, in the third year of high school, six months before my final exams, I refused to continue admitting them. The tics worsened, but I started to function normally and was able to prepare for the secondary school-leaving examination.

The rest of the text below the video.

“I made the diagnosis myself”

In high school, I started researching tics on my own. It was then that I found the phrase «Tourette’s syndrome» on the internet. The symptoms I felt were in line with those described on the web. I made the diagnosis myself. When I asked the doctor if I might have Tourette’s syndrome, he said no, because I don’t have the coprolalia, or swearing tic, which he believes is necessary to diagnose the disease. This is of course not true, because only 10-20 percent of coprolalia is present. patients with Tourette’s syndrome.

Unfortunately, the stereotype of coprolalia in people struggling with this neurological disorder is doing great in society. People with Tourette’s syndrome are perceived as vulgar, cursing and uncultured. It doesn’t help us with how the disorder has been and is sometimes presented in the media, movies or talk shows. Usually, extreme cases of the disease are presented there. Society views people with tics through the prism of these stories and has no idea that the reality is otherwise.

In the end, the diagnosis from the mouth of a specialist was not made until 2010. It was 14 years after the first symptoms appeared, seven years after the first visit to the neurologist. I waited so long for someone to diagnose me and prescribe medications that would reduce my tics and not cause side effects.

“If someone is disturbed by my tics, it is their problem, not mine”

In the same year I started my studies. I was very afraid of how new people I met would react to my illness and its symptoms. I didn’t want my symptoms to make it difficult for me to relate to people, so I began to adhere to the principle that if someone was disturbed by my tics, it was their problem, not mine. This approach made it easier for me to talk about my illness and react in various unusual situations.

Fortunately, my worries about other people’s reactions turned out to be unnecessary. I met with a friendly reception. Of course, there have also been occasions when someone joked about my symptoms in an unpleasant way. The only effective response in such a situation is to walk away from the person and not enter into the discussion. It is not worth discussing with people who are focused on making fun of, and not on a nice, friendly conversation.

Unfortunately, I know that not all sick people can count on the favor of society. Children with tics sometimes face discrimination on the grounds of illness at school. Adults too sometimes face unpleasant remarks. That is why it is so important that the closest family and friends of the person with tics are supportive and help him through these more difficult moments.

Today I have the most motor tics in my head, neck and hands. Occasionally there are vocal tics such as squeaking or screaming. The tics bother me sometimes. What’s more, they hurt me sometimes. But I accepted these symptoms. I learned to live with them.

However, I know that not every sick person has it. I also know how much of their children’s illness is experienced by their parents. That is why I have been active in the Polish Tourette Syndrome Association for several years. I am an advocate of people suffering from this disease. I share my experience and knowledge and support people who need help due to tics. If you feel that what I am writing is about you, please contact us. You are not different and you are not alone.

Polish Association of Tourette Syndrome

ul. Szpitalna 5/5, 00-031 Warsaw

[email protected] / www.tourette.pl

We encourage you to listen to the latest episode of the RESET podcast. This time we devote it to one of the ways to deal with stress – the TRE method. What is it about? How does it release us from stress and trauma? Who is it intended for and who should definitely not use it? About this in the latest episode of our podcast.