Why I Became an Advocate of Awareness

I frequently wonder why I spend time talking about dystonia. It no longer runs my life. I am not still searching for answers. I have, for the most part accepted my diagnosis or lack of one. … but I still feel the need to talk about dystonia - rather than any other condition. Why is that?

Dystonia wasn’t the only ‘mystery diagnosis’ I’ve dealt with in my life. To be honest, it seems like there was always something going on with me. I spent nearly half of my high school life in physical therapy recovering from one thing or another. Yet, I was still an active, healthy person- or at least I thought I was. 

I appear so healthy at times; that it’s hard for people that know me to believe there is anything wrong with me. Every since my hand started spasm-ing as a pre-teen, I’ve been told it was all in my head. 

I suppose I took exception to that. Mostly, because it was precisely that mindset that landed me on crutches. It was another condition, one which my family doctor prescribed a “Tylenol and some ice” as a treatment for, that led to years of debilitation. 

At 14 years old, I lost the full use of my feet- for almost a year. All due to improper treatment of a repetitive sports injury. Three years of physical therapy and lots of rest, and I gained the majority of function in my feet- but as a Freshman in high school I was convinced I would never dance at my Prom.

I did dance, but I was scarred emotionally and physically. 

Ten years later, after enjoying a relatively normal life, I was once again not able to use my feet, but for a different reason. My right foot turned inward and refused to let me step down.  Once again, the doctors had no answers. Once again, they told me it was in my head. Then one doctor paid attention – and called it dystonia. 

As I learned more about dystonia,  I learned that my experience was not unique. I found camaraderie in the millions of sufferers who struggled with their muscles yet had no answers. I found others who had been told ‘ice and Tylenol’ or were told to take some muscle relaxants and go away.  I met doctors who realized that stress was not the cure-all diagnosis for conditions they didn’t understand. 

To me, dystonia awareness is a movement of people who demand accountability from the medical profession. These are the patients who have been repeatedly silenced, yet cannot hide, because their symptoms are so visible.  An advocate of dystonia awareness is someone who believes there should be answers- even when the solution is not easy.  A dystonia advocate believes that people should not only be entitled to life, they should be entitled to a good quality of life. 

No one deserves to live in pain, disability or embarrassment just because people refuse to search for answers.  We can’t ignore the problem or pretend it doesn’t exist. It’s time we focus on understanding the many conditions that attack humanity and do everything we can to fight back. 

That is what I stand for.