A while ago I promised that I would write a guest post for the A Little Bit Different blog. I haven't had the time so far, because I was very busy with school, but now i’ve got a week off, so let’s do this!
I want to talk to you about, what i’ve seen, is the difference between how people look at Tourette in the US and in the Netherlands.
One of the first things I saw in the way the US referees to Tourette, was a phrase about Tourette that had the word ‘cure’ in it. In the twelve 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’s 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 find 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 thinks Tourette has brought me and, yes, I sometimes bitch about the downsides. But since I was fourteen 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, like 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 try to look at this moment and try to stay positive about our lives right now.
Another thing is that I notice that people in the US 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 someday, 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 vloging from now on, ‘cause this took WAY to long ;-)
P.s. Make sure to follow me and Marie (from Belgium) at Twitter at @touretteprobs, for all those typical Tourette problems, that we all have!