My Story: 12 years and counting!

Posted Mon 17th Feb 2025 at 10:54
by El Brooks

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El talks about her journey from diagnosis to acceptance.

Hi, I’m El, and I was diagnosed with a tic disorder when I was 7. Despite having both vocal and motor tics when I was diagnosed, I only just received my diagnosis of Tourette’s last year! Receiving my diagnosis was such a huge achievement for me, getting that level of validation and belief from others helped me feel much more comfortable in my own skin.

My tics started in primary school, around the time of being bullied. Initially, they were quite minor, with the most common one being humming. I remember my parents thinking that my tics were just a habit to begin with, and I couldn’t explain to them why I couldn’t stop. Getting my first diagnosis was really hard, my amazing mum had to fight so much to get me seen by anyone who could diagnose me, but before we got anywhere, she had to film or record my tics, mostly in secret, so that we had some evidence to show doctors. When diagnosed, the doctor told me it was very likely that I would grow out of them by age 13, an estimate that was not only inaccurate, but disappointing when nothing had changed at 13 years old.

Shortly after, I received a habit-reversal-based therapy, that focused strictly on tic suppression. My sessions consisted mostly of my therapist going through a work book on tics, where tics were characterised as a hammer. The book would present activities, mostly ones where suppression was to be practiced, something like “sit with a stop-watch and see how long you can hold in your tics.” Not only was this done in sessions, it was expected as homework for the week that my mum and I would go home and practice this too. Tic suppression is something that can only be understood fully by those with tics, the feeling of suppression is painful, and can only be compared to forcing yourself not to blink for hours on end. Tic suppression taught a 7 year old me, to change, minimise or stop my tics completely, so that they were ‘more acceptable’ in public. This has always stuck with me, because when I’m in public, in appointments, on buses, in shops, I find myself still trying to suppress my tics, even when I know I don’t have to!

My tics became worse in secondary school, not only was I in a more overwhelming environment, but I was also put into a situation where I had to choose whether or not to tell classmates about my tics. Even when being open about it, I was met with classmates thinking that Tourette’s was contagious, leaving me excluded from friend groups. I also experienced classmates accusing me of faking my tics, while also mimicking them while around me, just to see how I’d react. Accusations of faking my tics has always been something I’ve had to combat, and I believe it’s due to the stigma and lack of awareness surrounding TS. My tics take on the natural wax and wane pattern, like many others, making them appear as if they are sometimes there, and sometimes not, leading people to think they appear out of nowhere and are ‘fake’.

The relationship between stress and anxiety with TS, is something I’ve always struggled with, with my anxiety diagnosis coming hand-in-hand with TS. Last year, when I was preparing to sit my A-Level exams, and applying to my dream university, I experienced the worst surge in tics so far. They became violent, often leading to bruises on my legs, arms and face. On top of this, my vocal tics became much louder, often screaming and shouting, something which took a huge toll on both myself and my family. This surge is what lead to my final diagnosis of TS, FND and NEAD, as I had then developed non-epileptic seizures. The combination of these experiences, especially my twelve years of living with TS, has only made me want to spread awareness more. I think so much more could be done to help, with things like reliable and helpful therapy, talking about the effects and struggles of having TS, safe medication and finally, general support for not only those with TS, but their family too.

The most important thing to me is to spread awareness, especially after spending so many years being embarrassed of something I can’t help! This is something I’ve always wanted to do but not had the confidence to do it. I think educating others and spreading awareness is one of the most important parts of creating a better and more understanding world for people with TS to live in.

Tourette’s Action is an organisation that I will forever be grateful for, providing my mum and I help when no one else would.

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