ELYSE 

EMANUEL

I don’t consider my Tourette’s Syndrome a disability. However, for others, it will be due to the long-term and substantial effects it will have on them to carry out their daily activities. It is a spectrum disorder. I think I can speak for most people who have any severity of Tourette’s, that the limited representation portrayed of it in the media and within society is largely inaccurate. There are definite changes and improvements to the representation of individuals with neurodevelopmental disorders such as autism spectrum disorders, ADHD, or Tourette’s. But far too often, mostly within daily life, these disorders are still largely misunderstood, stigmatised and often the butt of hurtful stereotypes and jokes. I can have pretty much any tic under the sun, both vocal and motor. The stereotype of Tourette’s being severe, uncontrollable, swearing isn’t a genuinely accurate portrayal of the condition.

 

Tourette’s is about as prevalent as autism, so it often makes me laugh when people say that they have never encountered someone with a tic disorder until me. The chances are you have, as Tourette’s is more often than not, not swearing/obscene tics (as coprolalia only affects 10% of individuals with TS and even then it’s usually not as severe as the media portrays). I don’t tic that much anymore, I can go hours without, it used to be much worse. Not to negate the troubles I have been through with my co-morbid diagnosis of obsessive-compulsive disorder and Tourette’s Syndrome, but my life is generally now not negatively impacted by

them.

 

My adolescence was often hell, navigating the torment and unrest of my brain constantly working against me, but I have come out the other side. This was from extensive support, therapy, a combination of medications for a while, and learning coping skills. Ticing is like breathing to me, it rarely bothers me. A lot of my tics are vocal and centre around vegetables and animals, although this isn’t really how it works. I like to think my tics subject choice are sometimes a representation of my interests. To say when my TS started is incorrect as I’m sure I had mild motor tics in childhood, but no one noticed or was phased by it. I started having consistent tics from the age of 15 and received my diagnosis at age 16. At the same time, I was diagnosed with severe OCD. Several years of my life were incredibly challenging for me and my family, as my intrusive thoughts kept me in constant distress and my compulsions surrounding checking, germs, and health anxiety, became outrageously time-consuming and anxiety-inducing. Often, it could take an hour to leave the house after getting ready, from consistent checking, more often than not I was reduced to tears and my intrusive thoughts plagued me every waking minute of the day.

 

At Great Ormond Street, where I was diagnosed, we worked out that I’d had OCD since very early childhood, maybe at the age about 3 or 4, and that it was incredibly deep-rooted. I started exposure therapy and tic therapy at the National OCD Centre at the Maudsley Hospital. It was gruelling but to this day I am so thankful, firstly for the NHS existing so I got the best care and treatment possible from the best experts in my conditions for free, and secondly that I really finished it. I had some challenging times after finishing therapy, as I had other mental health issues to work through, but during my gap year I did five weeks of three days a week, all day, therapy at the Neurology hospital in London and since then I only continue to get better and better.

 

Of course, I think life would have been easier if I didn’t have these conditions but in some ways, they have prepared me for the challenges of daily life better than anything else. They have forced me out of the privileged bubble I lived in, where nothing had ever gone wrong in my life. I know my brain operates on a slightly different plane to other people’s in terms of academia, social skills and practical skills, which was challenging at times but also has immense benefits. These disorders usually prove to have enhanced intelligence in some aspects of life. For me, that’s through academia. I am good at processing information and mostly do well in standardised tests. I have a great recall for tiny details. However, things like sarcasm and obscure jokes are quite difficult for me to grasp.

 

I also don’t get embarrassed easily or feel insecure about insignificant things, like most people my age. I have already dealt with people in public staring at me and making comments when my tics were severe, so I’ve dealt with the brunt of it already. For my family and I to cope, we use humour. Unless my tics are physically painful for me, we laugh about them. We have names for our favourite tics, some of the repetitive ones are ingrained into our dialect now. One of my most consistent tics is saying, “beep, beep you’re a spoon” and it has become a way of expressing affection between my family members and I. I like to think of myself as living proof of recovery, in which to flourish you sometimes have to flounder first.

"Beep beep, you're a spoon"

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