One of our Young Healthwatch volunteers shares their experience of ‘Living with Tourette’s Syndrome’, which we are sure you will find very interesting to read.

Overview

Tourette’s Syndrome (TS) is a neurological condition involving involuntary noises (vocal tics) and movement (motor tics). A common misconception about people with Tourette’s is that they swear a lot. In fact, swearing tics (coprolalia) are fairly rare and affect only one in 10 children diagnosed with Tourette’s Syndrome.

Diagnosis

I was first diagnosed with Tourette’s Syndrome in December 2020. This diagnosis only became official in November 2021 after my symptoms had been present for over a year.

My tics first began in class during my first term back in year 9. It was a classmate that noticed them. He mentioned to me that I would hit the table and asked if I was doing this on purpose – I had no idea I was doing it. After he’d pointed it out, I noticed just how frequently it happened. As it was the only thing that seemed abnormal, I didn’t think much of it.

In November, my class had settled in and had become far noisier because of it. It was around this time that I noticed an increase in frequency and severity of the movements. I had begun making noises without meaning to, as well as more movement in my arms and legs. When the class was particularly noisy, I started to inflict injury on myself and others.

When this started happening, I sat down with my mum and did a self-referral to CAMHS. I saw a psychiatrist at the local resource centre who was able to diagnose me with late-onset Tourette’s Syndrome. The psychiatrist believes that my tics (the random movements) were triggered late by heightened stress levels, probably caused by the pandemic and the changes to routine it brought.

Treatment

Although there is no cure for Tourette’s Syndrome, several steps can be taken to help manage its symptoms. These steps include medication, behavioural therapy and proper nutrition.

After my diagnosis, I opted to start medication to help me sleep properly. The tics were keeping me awake at night, I’d worry about them and then stay awake longer. It meant that when I woke up less rested, I saw an increase in their frequency. I was started on clonidine in January/February of 2021, but this made the dizzy spells I already experienced, worse. When we told my psychiatrist this, we started looking into other undiagnosed conditions that could be causing this, but the bloodwork came back negative for abnormalities.

When this medication didn’t work, I was started on risperidone (an antipsychotic commonly used to treat schizophrenia). This trial lasted only a few weeks (October/November 2021) and proved ineffective.

The final medication I was put on was aripiprazole (another antipsychotic), also to help with sleeping. Although it is too early to tell, my trial on this medication seems promising and I am getting a better night’s rest.

Tourette’s In School

Whilst at school, I often don’t feel comfortable expressing my tics. The silence in most of my classrooms leaves me feeling unable to tic without being judged. The past few years have seen a rise in tics amongst those assigned female at birth, and this is reflected in my classes. A lot of children in my year have various tic disorders, with the most common being chronic tic disorders. People with chronic tic disorders are more likely than those with Tourette’s Syndrome to make loud noises and movements – although this does not mean those with Tourette’s do not. As a lot of children (more than average) in my year group have one of these disorders, I often hear other children ridiculing and mocking them. This is why I don’t feel comfortable expressing myself around these people. This leads to me suppressing my tics until a time I feel comfortable, which is often when I get home. It means when I do arrive home, my tics will become more severe as a result of suppressing them at school all day.

My Tourette’s diagnosis means when I come to do my GCSE’s, I have my own room to sit my exams. Along with this, I have access to a SEN (special educational needs) teaching assistant should I ever need one to help me.

Daily life

On a good day, my Tourette’s will have very little impact on me. I will be able to function in the same way anyone without the condition would, and my tics would be hardly noticeable. However, on a bad day, I will have trouble with basic tasks such as writing, reading, preparing food and conversation. On bad days, I often do not trust myself with things such as knives and scissors for fear of hurting myself.

In general, I will only struggle with things If I am not focused on them. For example, when I am very engrossed in conversation, I notice a significant decrease in vocal tics and when I’m reading I have very few at all. During September, I started guitar lessons with a family friend who had experience teaching music already. We performed a small outside concert (following COVID restrictions) at a local care home in December, which my Mum attended. She said that whilst I was playing, it was “like my Tourette’s was non-existent”. I have also noticed how little I tic whilst playing guitar, and make sure I practice whenever I can.

Advice

If you still attend school, there is plenty you can do to make sure you feel comfortable whilst there. Getting in contact with them and explaining your diagnosis is a good start. If you think having a SEN support staff member would help with your education – ask! Make sure you tell them how your tics impact your ability to learn (if they do) so they can help you get back on track.

If your tics are impacting you outside of an educational setting, there’s still plenty you can do to manage it. As I already mentioned, playing an instrument requires a lot of focus, which makes it good for keeping you occupied on something else. Other examples of good things to occupy you are exercise, reading a good book, playing a game, singing, even listening to music can help put the focus elsewhere.

There are also lots of excellent websites out there you can look to for information:

Tourette’s Action (tourettes-action.org.uk)

Tourette syndrome | Great Ormond Street Hospital (gosh.nhs.uk)

Tourette’s syndrome – NHS (www.nhs.uk)