In my first year at university studying Musical Arts, I was sitting in a lecture after hurrying with my friend with a minute to spare. My mental health wasn’t great, and I started a new medication to help. I noticed that my shoulders were twitching, and I had an odd feeling in my stomach. I felt embarrassed as I couldn’t stop moving, but didn’t really think much about it, of course, until I left the room making loud hiccup noises over and over down the campus.
I couldn’t stop laughing at the time because I had no idea what was going on and would rather laugh about it than cry! My head started jerking to the left at the same time, more head and shoulder-related movements appeared throughout the day and it truly felt like I should be waking up any minute from this nightmare. Somehow, I noisily got through the other lectures that day despite the confusion of the lecturers and those sitting around me. I was causing a lot of distraction and most importantly was completely still yesterday. The more I tried to hold it all in, the more it built up and felt unbearable. This ‘urge’ released after doing these noises and movements. It was completely constant. I will never ever forget that day on 1st November 2018, very early on in university life.
Coming off the medication made no difference to these ‘tics’. No more university. After ruling other things out and having an MRI, I was diagnosed with Tourette’s. I had medication trials and awful reactions I cannot even bare to think about from antipsychotics, commonly used for treating Tourette’s. I developed awfully debilitating tic attacks which look like seizures. I cannot speak or walk during them. When having them in public, no one offered to help me and just stared at me in confusion. I must have looked very drunk or odd, punching myself and bent over double, making various noises beyond my control. These would always last exactly an hour.
At present, I luckily take a medication which pretty much cured me. My tics have been non-existent, and I have had no tic attacks for a few months! No more muscle aches or stares. Actual normality. No one would possibly know I have tics at all. But not everyone is so lucky and there is the fear that things could change any minute, so it makes me appreciate being still and in the moment. For most people with any tic disorders, it is commonly developed at a very young age and in the family. They would not see their life without their tics, and it is a part of who they are, what they are used to. Unfortunately, I cannot relate to that. The reality for me is that as far as I know, I’m the only one in the family with Tourette’s and I spent months after my onset crying and wishing it to go away.
I of course remember my life so vividly without it, taking it for granted, especially things like the
hairdressers and dentist- keeping still! Waking up with Tourette’s, the chances are so slim that you’d never think it could possibly happen to you. I know that there are always going to be misconceptions about the condition, especially regarding swearing and shouting obscenities. Only 10% of sufferers have coprolalia. Tics wax and wane, as well as change in themselves at any point. Old ones come back as well as new ones appearing. It really isn’t easy to live with, particularly if medications do not work for individuals and the unpredictable nature of it. It takes so much strength just living with Tourette’s. I know that I am different neurologically, but that’s okay!
I am an enthusiastic musician who loves to read and I am about to begin an Open University course to do Criminology and Psychology.