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Tourettes Exchange, The Netherlands, My Experience

Posted Tue 27th Aug 2019 at 10:33 by Sam Gelling

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Tourette Syndrome is the only condition I know of where part of the disorder is learning to deal with the public’s perception of you. With other disorders you can hide away your symptoms in private. With Tourette Syndrome you can’t do this. You have to face the public with your tics. This is unavoidable. When you do this alone it can feel very isolating. You’re the only person around without full control over their body. What must everyone else think of you? How weird must you look to them? That’s why it’s so nice to be with other people who have this condition. It’s a sense of freedom you can never truly have suffering alone. When you’re in a group of other sufferers you no longer feel isolated in your disorder, instead you can fully embrace and accept it. Simple tasks like walking down the street no longer feel daunting. You lose the worry of what others will think of you when they see you, as you no longer care. You aren’t the only one there without full bodily control, and that just seems to make it a little easier to live with - in the moment.

On this exchange [Erasmus European Youth Exchange programme] my tics worsened, and I developed new ones. The most prominent example would be that whilst in Holland I developed coprolalia. I knew this had been a long-time coming as I had felt the urges for some time before hand. Developing such a new and public tic can be a frightening thought. However, I couldn’t have developed it in a better place. Everyone around me being in the same position created a group trust and bonding. Everyone was so accepting and supportive towards my predicament that it allowed me to begin the process of embracing this new tic much quicker than would have happened had I been alone.

The best part about the whole trip was just being able to spend time with others who fully understood what I go through on a daily basis. Friends and family try to understand as best they can, but with a condition like Tourettes you can never fully understand it without living with it. Therefore, spending time with others who live with the condition allowed us all to share our experiences and learn from each other. Every sufferer has their own coping mechanism and strategies, and so this allowed us to learn from each other on the exchange. On the trip I spent lots of time talking to different people about their experiences and how they cope with their Tourettes. I think this has offered me a wealth of new strategies I can now try and incorporate into my life to help deal with my condition better.

In my opinion the trip was too long, and possibly too unstructured. A lot of free time left us sitting together which just escalated our tics as we all set each other off. Furthermore, by around the 7th day everyone was so tired with the near constant tics. A lot of people, myself included, had tic attacks, I believe due to a combination of tiredness and increased tics. However, everyone was understanding and happily on standby to help each other when needed. A tic attack can be a very scary and unpleasant prospect but just knowing that the people around you know what’s happening and also know how best to help you eased the burden just a little.

Overall this trip was just a wonderful opportunity and I’m so grateful I got the chance to be a part of it. I want to thank Erasmus and Tourettes Action for the amazing opportunity I got to participate. I made some truly lifelong friends and made memories I will never forget. My Tourettes may have gotten worse but it’s a small price to pay for the wonderful experience I had, and the amazing people I got to meet. I would do it again in a heartbeat and couldn’t recommend more strongly to others to try and find other sufferers and spend time with each other. It’s an incredibly valuable and therapeutic experience to share your struggles with others who fully understand what you’re going through, and others offer an insight into new and different ways of coping with your condition you may not have considered before.


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