In the past couple of months Ive started to notice a few things... the most important being that:
My talking about dystonia makes people uncomfortable. I wonder why that is. Dystonia is not contagious. There are no dystonia cooties. Thinking about my dystonia will not make you develop dystonia.. unless you have developed that superpower.. then I'd suggest staying away from hospitals!
I attempt to make my dystonia a lighthearted thing. I dont start crying when talking about dystonia.. I actually am laughing about it most of the time.
I remember when I was first diagnosed I watched dystonia videos and read all that I could to learn more. I wanted to CRY!
Damn! Dystonia is HORRIBLE. So horrible.. that Im just gonna pretend that I dont have it! yep~ thats what I did for 2 years actually. Worked well, until I woke up one day and couldnt stand up.
I now know that dystonia is not the end of the world. I can survive this. Yes its pretty bad.. but it wont kill me, although it does make me VERY poor and THAT may kill me :P
So if my dystonia scares you- Im truly sorry. Im just trying to shed a positive light on a truly horrible disorder so that those new to it wont feel the despair I felt my first few years of diagnosis.
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I think maybe talking about conditions that cause us pain and/or disability really do make people uncomfortable. People don't seem to know what to do with that information. I suppose I wouldn't know either, but it doesn't make it any easier or those of us dealing with these things who really, really need to be able to talk openly about them.
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