My diagnosis journey and TikTok

Posted Mon 13th Dec 2021 at 09:05
by Seren Arthurs

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College student Seren shares her lived experiences with TS

Looking back, I’ve had tics since I was 5 years old. They weren’t always the most noticeable and as a child who had never heard of tics, let alone Tourettes, I always assumed everyone did it.

They caused me all sorts of issues because I couldn’t explain the feeling. My first tic was invisible to everyone because I would curl my toes up as tight as I could, I remember this one vividly because it made shoe shopping an impossible task. As far as I remember, my mum used to absolutely hate taking me because I never explained to her why I didn’t like any of the shoes, I just told her that they didn’t fit so she just assumed I had weird shaped feet.

When I was 9, I developed a tic where I tensed all the muscles in the top of my right leg. This is the very first tic that my parents noticed which thankfully resulted in me being taken to the doctor and then referred to a neurologist in Cheltenham. The neurologist told my parents that I was young and would grow out of it, so we just went about our lives and tried to ignore it. My siblings soon found out they could wind me up and trigger my “twitch” as we called it by leaving light switches on or just repeating the word “twitch” over and over. As I know now if you’re thinking about your tics you tend to tic more.

By the age of 10 my tics were still pretty mild, but they caused me a lot of distress, especially on long car journeys as I felt trapped and couldn’t tic freely in fear of kicking other’s seats. I often got the feeling of electricity down my spine which I can now easily link to tic attacks, but I didn’t know that then. As I reached year 9 in a new school with new people, I started to develop small vocal tics. Very simple ones like exhaling and a “huh” sound. This led me to realise that I could hold them in. I practiced this for hours and became so good at it that I didn’t have to tell anyone in my high school but as they got worse and became harder to hide my mental health deteriorated. People don’t realise how much energy and concentration is needed to suppress your tic. This resulted in tic attacks and fatigue that made my lessons and even friendship impossible.

Then in Year 11 I was diagnosed with a motor tic disorder, this was partly because I had gotten so used to suppressing that I didn’t tell my doctor about the vocal tics, (stupid I know), but this was a relief because the few teachers that knew about my tics were then able to let me sit out of assemblies and let me sit at the back of the hall for exams. I was still absolutely terrified to let any of my classmates know about my tics because I had already seen how people who were “different” were treated. Luckily, I got through my exams (passed them all, whoop!) and moved on to sixth form where my tics continued to get worse.

When the pandemic hit, I was considered vulnerable due to my mental health so still attended school. I decided that I couldn’t deal with it anymore so applied for college. It was a completely impulsive decision, but I got in and in September 2020 I started my photography course.

This fresh start was exactly what I needed. By the second week I started to let my tics out and my classmates were so accepting, and I no longer felt the need to suppress. I’d always liked making little videos to post for my friends to see but at the end of October 2020 I decided to record myself in my classroom doing my work and posted it to Tiktok. It received more attention than I thought it would and I realised it was something people were interested in. As I started to gain followers, I found other people with tics and had never felt so included by a community.

After having tics for about 12 years, I finally got my diagnosis of Tourettes in December 2020 at age 17 and haven’t looked back. This is a big deal online as so many people are often accused of faking tics and Tourettes for attention. The hate comments can get overwhelming but almost 570k followers later and I’ve never been more grateful to be part of a community.

Embrace your differences and don’t try to suppress. I promise it’s worth it.

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