Living with dystonia

By Rebecca, Myoclonus-dystonia syndrome, United Kingdom, February 8, 2019

Hi I’m Rebecca and I’m 21 years old. 

When I was diagnosed with dystonia I thought it would make my life better. But the truth was that it only made it seem more real. The words no cure hurt a lot at the time but as it has been almost a over a year now 

People are scared to ask me what I have, then they say there sorry which, most of the time, is not needed .

But I like people asking me why do I do this or what condition do you have then. As, what I have found out the most is not many have heard of it. 

Personally I find the one of the hardest things is that it is persistent and never goes away. But at the same time my dystonia isn’t me its just something I have that not many understand or even know.                                   

I stand by this quote: "My dystonia should never be mistaken for me" As its just a small part of who I am. 

Dystonia is so much more than the constant and excruciating pain and not knowing when you’re going to have a bad day or fall over . 

I find being too confused to communicate at times the hardest.

Because I may be able to walk better one day and do things a bit more easily but that doesn’t still mean that I’m not in pain. 

I just wish people would just ask me about my dystonia rather than stare and judge. 

Chronic daily pain that no one sees, as I’m good at hiding it now and I'm used to it. 

I look normal but I feel far from normal at times 

I have qualified  and left college now. I hope I can had dbs surgery this year and get a job in IT .

My aim is to raise awareness for dystonia in general as it needs to be more known.

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