What is Tourette Syndrome?
Tourette Syndrome is a neurological condition which causes involuntary movements and sounds called tics. The condition is generally inherited and complex, with people often experiencing co-occurring conditions, some being OCD (Obsessive Compulsive Disorder), ADHD (Attention Deficit Hyperactivity Disorder), problems with sleeping, and anxiety. Symptoms usually start to occur when young and must be present for at least 12 months to meet the diagnostic criteria for a diagnosis.
Do you have any comorbid conditions?
Alongside my Tourette’s (which I have named Skittles) I also have OCD, anxiety, ADHD, autism, and depression.
Your diagnosis story?
I started showing symptoms before the age of 10 (excessive blinking, a stutter, and the odd twitch). My tics became more prominent in Year 6 and 7 (obvious twitching, a loud screaming cough, and punching the family computer desk), so I was taken to the doctors. During Year 7, I attended several meetings at CAHMS (Child and Adolescent Mental Health Services) where I was diagnosed with Tourette Syndrome and OCD in 2012.
Back in 2012, there was very little information about Tourette’s compared to what is available now. For a long time, I didn’t truly understand what was going on and felt incredibly embarrassed by it and scared of it. Now, however, thanks to advocates on social media spreading awareness and discussing their experiences publicly, I understand the condition much better and am less ashamed of it.
What was your experience like in education?
I found education very challenging at times. Due to having little understanding of my condition and feeling ashamed of it, I suppressed my tics daily throughout secondary school because I didn’t want to be different. This meant that I was too embarrassed to ask for extra time and my own room for GCSE and A-level exams. Suppressing in exams (some of which were 3 hours long) was incredibly difficult, but somehow, I managed it.
Eventually, I plucked up the courage to tell my best friend about my condition in Sixth Form. He was the first friend I ever told, and it lifted an enormous weight that had been growing for years off my shoulders.
I have found my University Undergraduate much easier. I informed the University of my condition as soon as I arrived and was given extra time and my own room for exams. During my time here, I have met some incredible people (students and staff) who have been accepting of my tics which has allowed me to become much more confident and less ashamed. 5 years ago, I was unable to even say the word ‘Tourette’s’, but now I am sharing my experiences to raise awareness and help others with the condition.
What are some common misconceptions about Tourette’s?
The most common misconception is that everyone with Tourette Syndrome swears. This is not the case. Swearing, or saying socially inappropriate things, is known as coprolalia. This type of tic is only present in around 15-20% of individuals.
Another misconception is that tics are only sounds or movements, but they can be mental as well.
There is a misconception that everyone who tics has Tourette Syndrome which is not the case. Tics can be caused by a variety of things such as stress and anxiety, other tic disorders, environmental factors, and other conditions such as ADHD.
Some interesting facts about Tourette Syndrome
Some people with Tourette Syndrome can suppress their tics, meaning that they temporarily ‘hold their tics in’. However, this tends to require a lot of concentration and energy, thus causing tiredness. Some may suppress their tics in certain social situations (e.g., a library, a lecture theatre, in the cinema, or at meetings), or because they do not feel confident.
Some tics are very complex and can be entire sentences. My friend once sang the entirety of Happy Birthday as a tic.
Before a tic happens, many individuals with Tourette’s feel what is called a premonitory urge which is an uncomfortable physical sensation which builds up (usually in the area of the body where the tic will occur) until the tic happens. Some describe this sensation as an itchy feeling,burning, electrical, or buzzing feeling. This sensation often increases in severity whilst suppressing tics.
The exact cause of Tourette Syndrome has not yet been fully determined. Brain scans have revealed that certain parts of the brain which control movement work differently to a brain without Tourette’s. Some studies suggest that the cause may be related to an issue with the brain’s neurotransmitters and the production of dopamine. There is no cure for Tourette Syndrome!
Do you have any advice to people with Tourette’s or tic disorders, or newly diagnosed people?
It can be very difficult to show people your tics. It can also be hard telling people that you have tics in fear of their reaction. You may feel ashamed, scared, embarrassed, and worried that you’ll offend someone or be seen as different. Although suppressing can make you feel safer, it can be exhausting. After suppressing my tics for the entirety of secondary school, Sixth Form, and some of my first year at University, I want to help others feel that they can be themselves and tic confidently. Ticcing in public can be daunting and embarrassing, but you could start with ticcing in front of flatmates/close friends to build up your confidence.
Cameron Curry
2022/23 Wellbeing Officer