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Tourettes Rollercoaster

Posted Mon 9th Aug 2021 at 11:21
by Jenna Faber

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Hi, my name is Jenna, I am 18 years old, and this is my story.

Living with Tourette’s has been a bit of a rollercoaster! Some people think that Tourettes is just swearing, or arms and legs wobbling like jelly in mid-air. But I can tell you it's so much more than that! I have overcome so many difficulties on my Tourette Syndrome (TS) journey.

Just simple things like going to college, visiting the park with friends, or shopping can become a total nightmare, even easy things like making a drink or a sandwich could be dangerous or messy. To help me cope, I have written a song about it, but it's not quite ready to share with you yet, so this blog will have to do for now.

I bet you most likely can't imagine what it's like to tic. You could try keeping your eyes open and not blinking for several minutes, or you could have a string tied to your arm and somebody else randomly pulling on that string without telling you while you’re trying to cook. Maybe then you can grasp an understanding of what it's like to tic. What it's like to have no control of yourself and what it's like to try and hold back or suppress a tic.

Now I rarely leave my house, because of the verbal abuse I get from members of the public. People copy my vocal tics and stare at me. I see no reason why having TS means that people should treat me any differently or judge me.

Yes, I’m a little different, but that doesn't make me any less human. That does not mean that I cannot achieve my dreams. And that does not mean that I am any less capable. I'm writing this blog to educate those of you who do not understand TS. 

To help you understand what people with TS go through, let's go back to when my TS first started - before I got my diagnosis.

In 2016, when I was in secondary school, I developed a twitch which would cause my head drop to one side. It was painful and at the time I didn't understand what it was. It first started when I was in maths and I was feeling quite stressed because I couldn't understand the work, and from then on it just continued to happen. I chose not to think anything of it and just continue with what I had to get done.

In 2019 I developed a vocal tic, but at the time I didn't know what it was. It was a strange sound that was a mix between a hiccup and a sneeze. This would often be quite high pitched and sometimes hurt my throat, so I took a gap year from college due to medical reasons.

I started the course again in 2020, only this time when I went back, I had developed more tics that seemed to be more severe and would happen more often. Due to the lack of support and no diagnosis I lost my college placement three weeks into the course. Over the period of lockdown, I had developed more motor tics and vocal tics.

After I lost my college placement, trying to find support to understand what was happening to my body was very difficult. Going to the doctors to get help, being referred back and forth from the doctors to Camhs for weeks, was a nightmare. Over that period, my tics were gradually getting worse, often causing me to lose my voice or get a headache. When I finally started getting support from Camhs it took a matter of weeks to get my diagnosis. In early January of 2021, I received my diagnosis of Tourette syndrome.

I still don't have a college placement, but outside of college I have achieved a lot of things. I started writing songs to help me cope with what was happening. I started to learn more about TS and how to cope and manage my tics.

Although my TS plays a big part in my life, I have chosen not to let it control me. Sometimes it's difficult to fight against my tics. Everyday feels like a constant argument against my body. The severity of my tics can change throughout the day meaning some days it can be impossible to get out of bed, and other days I can just about manage to get breakfast by myself. Some days I might not tic at all, but these are very rare, while some tics are small and quiet, others are loud, echoey and strange.

Some people might find some of my tics cute or funny, but they are in fact very painful. Some can be explosive or aggressive and others can cause harm to me or others around me. Some days my tics can completely immobilise me.

Sometimes I find it funny how I can scare people without even trying to due to a loud vocal tic, and sometimes I feel bad about my tics because of how other people respond to them. Even though there's nothing I can do, and I know it's not my fault, I still feel bad when my tics hurt others or make other people upset. Some people might misunderstand and think I'm doing it on purpose.

Thank you for reading my story. I hope you learned something but if you didn't, that’s okay.

You can watch a short film about Jenna's story here.


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