I want to talk to you about what I’ve seen is the difference between how people look at Tourette Syndrome in the United States compared to the Netherlands, where I live.
One of the first things I saw in the way the U.S. refers to Tourette was a phrase about Tourette that had the word “cure” in it. In the 12 years I have had Tourette, I’ve never ever heard the word “cure” (or even the Dutch word for it, which is ‘genezen’), when it comes to Tourette Syndrome.
In the Netherlands, we always talk about treatment (behandelen) or therapy (therapie), never cure! I’ve been thinking about why this is and I really think it’s because no one is even near to finding a cure, so why think about it? I don’t think that far ahead. It’s even slightly frightening to me to think about a cure.
I think about the positive things Tourette has brought me and, yes, I sometimes bitch about the downsides. But since I was 14 years old, I’ve been saying that, even if it was possible, I would never give up my Tourette. It’s a part of me — without it, I’m not me!
I think Tourette has brought me so much, such as compassion, the ability to help others and even a lot of friends! I mean, don’t get me wrong, I absolutely hate it sometimes, but then I get therapy and I try to work through it. And of course there are times when I keep hating it, but how does it help me to think about a cure?
It’s not gonna happen very soon, and even if it does, I don’t know whether I like that or not. I trust the scientists that are working on therapies and such, so I am ready to hear about it, when it’s ready. I don’t think it’s gonna be in my lifetime, though. I think that what we are doing in the Netherlands is really just trying to look at this moment and try to stay positive about our lives right now.
Another thing is that I notice is that people in the U.S. focus so much on awareness, compared to people in the Netherlands. We try to focus on helping each other and sharing experiences (we call this ‘lotgenotencontact’, which roughly translates to talking with people with the same problems; there isn’t really a word for it in English, but I really like the Dutch word), rather than to make sure the rest of the country knows about Tourette.
We try to create as much awareness as we can (through TV, newspapers and magazines), but we don’t focus on it. I think it’s mainly because we don’t have enough manpower, and we think helping each other is more important right now.
I think that both things are so important, and in a way, by creating awareness you help and support each other as well. I don’t really know what’s more important, if you only could pick one.
I do think we do a really good job at the Dutch TSA, with the small number of people and money that we have. And I like the work of the American TSA as well, and of course all the smaller associations and individuals.
I’ve been to New York once, for the 5th International Scientific Symposium, and I loved it. I really want to go again some day, and I hope I can meet all of you as well, because I think you do an amazing job by creating awareness and trying to help people with Tourette.
I hope you liked my blog post and you were able to see a little of how we look at Tourette here in the Netherlands. I will be “vlogging” from now on because this took WAY to long. 😉 Make sure to follow me and Marie (from Belgium) at Twitter at @touretteprobs, for all those typical Tourette problems that we all have!