You're not the only one!

Posted Mon 19th Apr 2021 at 13:15
by Caitlin Mackay

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What happens when you have your life vaguely planned out, but then wake up one day with Tourettes?

For me, I cannot even begin to really describe the feelings of devastation, confusion and panic that I first felt when my tics appeared. I was in my last year of High School, about to do my exams when one day I woke up and my head and neck wouldn’t stop moving like I was constantly turning to look at something.

I didn’t know what was going on at first, so I went to school as normal. Fast forward a few months later and the tics still hadn’t stopped like I assumed they would. I was riddled with anxiety and fear not only because I didn’t understand what was happening to me, but how I would affect other people. I was worried about interrupting classes and distracting other people during one of the most important times of your school life.

It took four years before I was officially diagnosed with Tourette Syndrome. Many doctors before had told me it was a manifestation of stress, or it was just a habit I had got myself into and had to learn how to get back out of it. Being the one who knew nothing about the medical side of things, I felt like these professionals were telling me that I had gotten myself into a major pickle and I just needed to learn to chill out and stop the habitual things I was doing.

Looking back now, it’s kind of sad. I thought what was happening to me was my own fault and felt like I was being told that because I decided to start ticcing, I could just as easily stop it.

But that couldn’t be further from the truth.

After countless different medications, doctors’ appointments, scans and tests, it was clear the problems I was having were very much out of my control.

Medication helped for a while, I guess. But the longer you take mind numbing pills the more you lose yourself. At least that was the case for me - some people may find it works wonders. After High School I moved to a new town, went to college where I knew nobody and only just about managed to finish the first year. After that I dropped out and started working. I couldn’t handle being in an educational environment and so I thought I'd take my chances with the world of work.

From the age of 18 until I turned 21, I probably went through over ten different job roles. I struggled to find something I enjoyed, but also something I could handle - what with Tourettes being a nuisance!

Sadly, I found many employers couldn’t or weren’t really willing to help me out by making reasonable adjustments so I could continue working for them. The longest job role I had was about a year and a half but that came to an end as my TS got pretty out of control.

Then in 2019/2020 I had a very bad experience with a company which still now has very much put me off working for an employer. So last year I made the decision to start my own business. It wasn’t how I planned my life; I was going to wait until I was at least 25 before considering going solo, but due to certain circumstances I took the leap and did it at 22.

Like everything, this came with its own challenges but one of the most positive benefits I have gotten from working for myself is my TS is a lot calmer and easier to manage. I'm in a comfortable environment, in control of the work I’m doing and the hours I put in, which for me, was a blessing. I have learned how to communicate better with people, and I don’t feel like my tics get in the way half as much as they used to.

The only downside to being self-employed is that it can be very lonely at times. I also reached the point where I truly realised I had no one in my life I could actually talk to about my experiences with TS and how to cope with daily life. At least no one that could properly comprehend what it’s like living with TS.

So I went in search of a solution!

I had already heard of Tourettes Action and so this was the first place I looked. Due to the pandemic, obviously there were no in-person meet ups or support groups. However, they provided a support group over zoom, where any adult with TS could join and speak to other people who knew exactly what kind of struggles daily life brings.

It was so nice to see and talk to other people with TS, as many of us have never actually met anyone else that suffers from it. Not only do you realise you’re not alone, but the support you get from everybody is amazing. Whether or not we all experience the same things, we can all empathise and share our own experience of how to deal with certain situations.

Even though just a chat with someone can seem like such a small thing, to find others who understand is one of the best feelings and TS is a lot less scary when you have others around.

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