Photo by Robina Weermeijer on Unsplash.

Tourette's syndrome is a neurological disorder, which causes a person to have tics. These can be vocal or physical or both. Everyone tics in varying ways and severity, with some people being able to carry on with life as normal, and others having to adapt to living with tics.

 

I have tourettes, and I am writing this to try and give some insight into the reality of the condition and debunk some things people think about it that are wrong.

 

Tics usually start during childhood, and for many people, can decrease in severity as they grow up, and even eventually go away. In some people there are signs of their tourettes from a young age. For me it was a clicking noise with my throat, and a strange walk. These signs can often go unnoticed until they get worse and more noticeable. Whilst there is no cure for tourettes there are things that can help it such as practising to control them. I find that keeping concentrated on something helps to reduce them as it keeps my brain occupied, but this may not work for everyone. The exact cause for tourettes is still unknown but is constantly being researched.

 

The feeling of a tic is hard to describe, but the closest way I can think of is as if sneezing. You can’t really control sneezing as it's involuntary, but if you concentrate hard enough you can usually stop it. This is what ticcing feels like for me. It's extremely draining for those with tourettes to suppress their tics and if you are stressed or tired it becomes even harder. 

 

As mentioned, tourettes can vary with severity between people, but it can also be different between days. Many people with tics can have periods of time where their tics are violent and hard to control, and other times where they are barely happening. This is why it is often hard for others to tell when people have tourettes. Due to the difference in the ways it presents, and the fact that people usually try to suppress them, it can often appear to others like nothing is happening at all. This can be very difficult for the person with tourettes as many people get their experience discredited because others dont think they are suffering at all.

 

Tics can be set off by a number of things, and usually the triggers for them are different for everyone. A few examples of some of the most common are:

The cold, anxiety, stress and tiredness.

Personally my tics can be set off by all of these as well as being repulsed by something. Like I said, all triggers are different and some are stranger than others, but they can all make it harder for someone to suppress their tics.

 

Roughly 64000 - 106000 teenagers in the UK have tourettes. That's about one teen in every hundred teenagers! Numbers of those with tourettes and tics are actually rising, which could be due to the recent lockdowns and therefore rises in anxiety. Whilst more people are being diagnosed, more people don’t actually understand what it is.

 

One of the most common misunderstandings about tourettes is that everyone who has it swears. This is a thing (called coprolalia) but only affects about 1 out of 10 people with tourettes.

 

A thing about tourettes that I think should be known is that they can seriously impact a person's life. Suppressing tics is tiring, but the tics themselves can also be quite painful. In my case, I have a head jerking tic which can injure my neck pretty badly. They can also make me hit myself on surfaces which can be painful. In severe cases, tic attacks can occur, which are when tics happen rapidly and cannot be stopped. This can hurt and is not pleasant for the person.

 

If you think you have tourettes or tics I recommend you speak to someone about it. If you don’t feel comfortable with that then there are many sites online which have a lot of information and people to talk to. The NHS website has a page on tourettes which can give you more information on the diagnosis and treatment of tics. If you want to learn more about them in general then I recommend tourettes action. It has lots of information and places to talk and connect with others who have tourettes. You can find out updates on research and talk to others who are going through similar things as you.

 

By Imogen Dearlove