3. Living With Tourette Syndrome

There are lots of things that you can do to make having life with Tourette Syndrome (TS) easier. This leaflet explains simple approaches you can have which will make living with vocal and motor tics easier. Please see the leaflet Tourette Syndrome – an Overview for a description of Tourette Syndrome.

Understanding Tourette Syndrome yourself

One of the best things you can do is to understand about TS yourself. Making sure your family and yourself understand what the condition involves is very important.There are lots of books you can read and websites you can look at which will give you details of the condition and how other people have managed living with tics. Once you have a good understanding of exactly what TS is, it will make it easier to understand how to deal with it. For example, knowing that tics come and go and are likely to be at their most severe at 10 _ years and to decrease in teenage years will be helpful. If you are the expert, it can help you deal with people’s responses to your tics, and will help you to feel in control.

Explaining Tourette Syndrome to other people

Once you have a good understanding of TS then it makes it easier to explain it to other people. Having a simple, handy explanation that you can share with other people is helpful, both for people you may know well (like friends) and others you may not be familiar with. .Being able to say something like “I’ve got Tourette Syndrome, it makes me have movements and make sounds which I cannot help” can be helpful and stop you from feeling under pressure. Having a simple response to people’s questions will also make you feel more in control. For some people with TS they have found having a card / a message in their mobile phone with information on TS printed on it helpful. You may like to try this.

It can be very helpful to explain about TS to teachers, work colleagues, friends, and family members. If they don’t understand then it is difficult for them to be supportive.

Managing Tics

There are lots of ways to manage tics. Some people find it helpful to think about which situations their tics seem to be most obvious. For some people this is when they are relaxing and for others it’s when they are active. For some people, they find it most difficult when other people stare at them or make comments. It’s a good idea to think about this and recognise when and where your tic-triggers might occur so you can plan around this.

Some people have found disguising their tics can be helpful. For example, some people find making their throat-clearing tic sound look like a cough or a facial grimace look like a yawn can be helpful. For others, practicing their tics over and over again can be helpful as it seems to ‘wear the tics out’ for a time. A psychological therapy called Habit Reversal Training has been shown to be effective in managing tics. In this approach people with tics are taught to find an opposite movement to the tic which helps to control the movement or sound. You might like to try this. Another therapy which has also shown success is called exposure and response prevention. In this approach the idea is to feel the urge to tic but to stop yourself for as long as possible. It may be helpful to talk to your doctor or look at the books described at the end of this leaflet or on our booklist if you are interested in finding out more about these therapies.

It is helpful to have something which really captures your attention. Many people find that when they are focused on a task their tics lessen or stop completely for that time. Tasks which are easily carried or not worth too much are ideal as it doesn’t matter if you lose them. Examples of these activities might be blu-tack, sudoku, using a hand-held computer game, an iPOD or a puzzle you really enjoy. Not only will you tic less but you won’t notice it so much if you do.

In highly structured settings like the office or the classroom, there are a few strategies which will be very helpful. Have a quick break if your tics become very frequent or noticeable. This will allow you to release your tics and then when you feel ready you can join the office / classroom again. For students having a separate room for examinations will also be helpful. This will allow you to tic in peace and not have to try and hold the tics in while you are concentrating on your work. When at school sitting at the side of the room might be helpful. If you sit at the back it is easy to lose concentration, if you sit at the front it might make you very conscious of your tics if other people can see them. However, if you sit at the side of the room you should be able to see what is going on and not feel that everyone else can see your tics.

There are also medications which can sometimes help reduce tics. These medications are usually taken when a person is experiencing pain from their tics or is finding that they are really affecting their life. However, the medications rarely take away all tics and some may have unwanted side effects. Once again, if this is something you are interested in learning more about please contact your doctor.



Tourette Syndrome