From Belgium to the UK

Posted Tue 14th Dec 2021 at 14:25
by Camille Santocono

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I could tell you all about my diagnosis, but I’d rather share my experience with TA as a foreigner.

I’m from French-Speaking Belgium (Belgium has 3 national languages: French, Flemish and German). I’m 27 and a community worker in-training. I was diagnosed at 26 and I’m also autistic, have AHD and have various other conditions including hearing impairment, restless leg syndrome, hypermobility spectrum disorder and sleep paralysis… for the main ones.

I encountered TA through one of Evie Meg’s videos. She had mentioned a weekend for adults with TS last summer. In Belgium, there’s no French-Speaking associations (there’s a Flemish one though) and I searched many hours for other adults on Facebook groups in my area with no success.

So I booked my tickets for the TA weekend in October and had the most amazing time in years. Everyone was friendly, welcoming and I learnt so much about myself and Tourettes.
The first night some people told me my tics were “cute and sweet” because they were quiet and discreet, which is the result of a lifetime of suppressing. But the morning after, the bomb was activated and I kind of went out of control, but in a positive way. I allowed every tic and every urge to exist, and it felt extremely good. I thought I would be exhausted, as I’m always exhausted, but I was surprisingly fine. As if ticcing is less tiring than supressing (how surprising)!
I suppress most of my tics while training for my job back in Belgium and sometimes I experience a shutdown or a meltdown because of it, but during the TA weekend I felt so free. I found my hyperactive side came back to life, which was fun because I felt very happy the whole time. It is so freeing to be myself without any restrictions.

I have kept contacts with a few people and am most definitely excited to repeat the experience next year. I’m forever grateful to Evie Meg who has allowed me to find out about this weekend as I felt extremely alone in my home country. I am training to be a community worker and I hope one day I can create a safe space for people with TS, maybe perhaps an actual association (who knows what the future holds).
My diagnosis is recent, but I went through a life-time struggle with having to control my body. I had no idea why I would hit, bite, jump or say things I didn’t mean to. I thought I was just impulsive. I’m glad and proud now to have that diagnosis.
My neurologist told me to not tell other people I have Tourette’s because in Belgium people don’t know much and they won’t believe me and even judge me and call me fake. Unfortunately, if she told me that, it means she probably tells all her patients the same thing and that’s why I have never met someone else with TS … because they hide it. The word “shame” comes up a lot in French Facebook groups.
There is so much awareness to be done in Belgium, but I’m glad I found a community and friends in the UK. What TA has done for the TS community is priceless and I can only dream right now to have the same in Belgium.

Thank you to everyone who welcomed me during that weekend and made me feel right at home. Not only have I met people with TS, but I also met people with autism and ADHD which I also have. And I learnt a lot about other conditions. It was a phenomenal experience to see everyone being able to be themselves without any judgment. And, to see that TA has tried their very best to accommodate each of us as best as they could.
I’ll cherish those memories for life.

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