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I Finally Felt Understood When I Found a Way to Describe How Dystonia Feels

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For over 15 years living with dystonia, describing how it feels is about as difficult as describing how water tastes. Unless you live with dystonia, this definition is not much help: “Dystonia is a neurological movement disorder characterized by
uncontrollable, involuntary muscle spasms and contractions, causing repetitive
movements, twitching, twisting, and/or abnormal postures.”

What does that mean to the average person who’s never experienced it? Probably very little. Not mentioned in this widespread definition is the pain associated with
dystonia. The pain for many is excruciating. Everyone has experienced pain, but
how does one explain pain that can get so bad it can render one practically useless?

Since I was tired of banging my head against the wall (I didn’t need the extra pain either!), I decided to get a little creative and interactive with people. I thought it
would help to have people actually do things that mimic how it feels. Wow, did
that change my world! People began to understand better, and I didn’t feel so
alone. What a relief! To try and help more people understand, I made a short video that shares examples of things people may have experienced in their life that is similar to how dystonia feels for the vast majority.

For people to better understand how our symptoms feel (and this goes for any health
condition), we need to use specific, tangible things they have also experienced
so they can relate. When people can “feel” it and have an “ah ha” moment, we
feel less in the dark. Greater understanding brings us greater peace, which
feels better than I can put to words!

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Originally published: November 4, 2016
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