How Dystonia Moves Me

Dystonia moves me.

It moves me in ways that most days, I don’t want to get out of bed because I’m in so much pain. It moves me in ways that the most basic tasks become awkward. It moves me in ways that I have to wait to take my muscle relaxer, especially because I might also have myasthenia gravis, and there are side effects. And in those difficult moments at the start of the day, when I’m trying to find the right angle or leverage to get dressed and look like a person, I look for ways for dystonia to move me in different ways; to make me a better person.

And as I start my day, as I struggle to move, I begin to wonder… in those quiet moments of struggle, who else is struggling? How can we connect these people? How do we make these awkward silent, uphill battles neither awkward nor solitary anymore?

We can connect people through networking. And with networking comes new friends, support groups, forums, advocacy and research. And as we face our own personal struggles, we can face them together.

And as we face our struggles together and overcome battles, we can work towards sharing love everywhere we go, with everyone we meet, and drive out hate. Because with dystonia, there is so much stigma about the disease. We need to instead spread awareness through kindness and open minds.

How does it move me? Instead of noticing the pain, the awkward movements, the stigma, it moves me to overcome my anxiety, confront the stigma and what makes every day difficult. It moves me to be a better person as I move through my day and my life and add to the lives of those I encounter, even though the condition I live with is difficult.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Jupiter Images.

Find this story helpful? Share it with someone you care about.

Related to Dystonia

Double exposure portrait of a woman.

The Question I Wish People Would Stop Asking About My Dystonia

I’ve struggled with an invisible illness over the last few years and for the most part, have been able to hide my struggles outside of home and doctors’ offices. I used to put a lot of effort into looking “fine” while out and about, and as I’ve taken steps forward in my recovery I’ve had [...]
woman sitting outside in the sun and smiling

Why I Stay Positive in the Face of Dystonia

Dystonia is described as a movement disorder that causes involuntary muscle contractions that are seen in repetitive or twisted postures. Think of the idea of a Charlie horse after working out and the cramp just makes you want to scream and throw up all at the same time. With a Charlie horse, it will reside [...]
smiling woman

How My Disability Has Given Me the Opportunity to Face My Fears and Help Others

Isn’t it funny how life can turn out? And isn’t it amazing how a challenge can turn into an amazing gift? As I approach my seventh anniversary of my correct diagnosis, I can’t help but think about how much I have changed these past few years. I have forced myself to try so many new [...]

Confronting My Dystonia 'Face-to-Face' in Talk Therapy

ex·tinct adjective (of a species, family, or other larger group) having no living members. “trilobites and dinosaurs are extinct” synonyms: vanished, lost, died out, no longer existing, no longer extant, wiped out, destroyed, gone, “an extinct species” So I started “talk” therapy in the fall of 2016 because I had finally reached a point where [...]