Can you imagine not being able to control your body movements, or what comes out of your mouth? For people living with Tourette syndrome, this is their reality. Mads Harrop shares her story.
It all started when I was in my first year of tertiary study.
After being away in Dunedin for two months, I had come home to Kurow for Easter. I was really happy and loving university, and I was excited to be home.
It came on suddenly. Sitting on the couch, I just started screaming, barking and convulsing very aggressively.
We were all terrified. Everyone was crying and confused – what on Earth was going on?
One minute, I was on top of the world, and the next I was swearing with a weird Scottish accent and hitting myself.
I had no control of what was going on and didn’t know if it could get worse.
I was the most scared I have ever been in my life.
Not knowing what was causing it, I was taken to see some doctors and got admitted to hospital to get some tests done, and for an MRI scan.
I was then given the diagnosis of Tourette syndrome and spent the following few weeks at home getting used to it.
Tourette syndrome is a neurological condition that is exhibited through involuntary movements and vocalisations, known as tics. Many people often think that it’s just swearing, but that is a myth! Swearing affects only 10% of people with Tourette’s and vocal tics can also involve barking, throat clearing and repetition of words (echolalia).
I learnt Cognitive Behaviour Therapy (CBT), which helped me control some of my physical tics – vocal tics are impossible to suppress.
Things started to calm down, but getting diagnosed with Tourette’s has made huge changes to my way of life.
My tics have had a huge impact on me mentally, as well as physically, and this was to the point where I had to seek professional help from some mental health experts.
At first, the ticcing had given me self-doubt and huge embarrassment, followed by anxiety.
I remember one time I went away on holiday, and I had this tic where I was barking like a dog and I was really worried about getting asked to leave the hotel I was staying at.
Travelling is something that I enjoy, but at the same time, my tics can make it nerve-racking.
I get anxiety about not knowing how people will react to me when I start ticcing in public, but I have learned to manage that effectively.
It took me over a year to have the courage to catch a plane – I can no longer travel alone, because I am too scared.
Recently, I had a few experiences when I have taken the bus home or back to university. I have started ticcing, blurting out nasty words.
I understand that this can be confusing and confronting for some people – and I understood the perspective of the bus driver completely when they asked me to leave the bus.
However, as with almost every other interaction like this I’ve had, as soon as I explained that I had Tourette’s, all was forgiven and I was apologised to.
The upside of this experience was that the fear of the words and actions I couldn’t control offending people around me did give me some inspiration for my most recently written song Lost for words. I have been able to use my music as a positive and reflective outlet.
I am so lucky to be surrounded by such kind and understanding people constantly – some people with Tourette’s are not so lucky.
The physical tics can leave me bruised and hurt, but it is the vocal tics that scar. Fully-formed sentences fly out of my mouth without any warning and not only is what I say out of my control, but so is who hears these words and how they choose to perceive them.
So, I would like to take this opportunity during Tourette’s Awareness Month to raise awareness about Tourette syndrome.
Those with Tourette’s have no control over what they say or do when they tic, but you as a person have control over how you deal with seeing or hearing them.
Tourette’s does not define a person; rather, it challenges them and brings those around them closer together.
For me, that is my family, with my autism and anxiety restricting my social awareness, my ADD affecting my schoolwork, and my Tourette’s affecting almost every other area of my life, my family has been my rock.
Steve, my father, provides invaluable amounts of his own time, musical resources and advice. Fenella, my mother, is not only my biggest supporter in the music arena, but also drives me to doctor’s appointments, therapy sessions, university lectures and gigs. She puts her own needs completely aside to help make my dreams a reality – she is truly the most selfless person I know.
I will never fully be able to understand how my developing Tourette’s has affected them, but I know it would not have been easy and I also know that they repressed every personal struggle, worry and need to meet mine and it is through their sacrifice that I am able to proudly say that my Tourette’s does not define me.
Now at 21 years old, I am happy, loving life and thriving, continuing to focus on my passion for music and my university degree – and it would not be possible without my family.
As the Tourette’s Association of NZ says: “Tic loud. Tic proud. Give a tic.”