The Mighty Logo

When I'm Told I Shouldn't Let My Disease Define Me

The most helpful emails in health
Browse our free newsletters

I get a lot of advice from well-meaning friends, family members, and my doctors. Sometimes it is helpful and other times I want to implode. I understand that my chronic illness is difficult for them to understand and most of the time it seems like I am consumed by my dystonia.

On Facebook I post a lot of stories and and share updates from my amazing doctors. I usually get a few “likes” from other patients, doctors, and my closest friends who know my struggle. Everyone one else has probably unfollowed me or just keeps on  trolling on through. I am hoping to spread awareness about dystonia, but the only people looking are already aware.

What many of them have said to me is:

“Don’t let dystonia define you.”

“You are not dystonia.”

“Maybe if you tried a little harder not to think about it.”

“Have you tried (insert endless suggestion list here)?”

What they don’t understand is that when you have dystonia you never get a break from it except when you sleep. Sleep does not come easy for me and I have struggled since I was 19 (now 30 years ago) with falling asleep. I would take medication after medication for help, but none of it helped long term.

In 2011 I had insomnia so bad I ended up admitting myself to a inpatient psychiatric hospital because not one doctor could find the source of my neck pain, anxiety, gastrointestinal issues, hearing loss, immune deficiencies and headaches. I thought I was making my symptoms up.

A photo of the writer, looking away from the camera.

In the psych hospital I was diagnosed with post traumatic stress disorder from a childhood trauma. There they gave me two new medications. They helped for about three months, then I went back to feeling wired and tired and I still had intense pain in my neck. Eventually I had tremors and pain so bad I cried all night, while most days all I could do was lay on the floor and pray for the pain to end. Then I was finally diagnosed with cervical dystonia. It took almost 30 years to for me to get properly diagnosed.

So, I have been defined my whole life by dystonia. Dystonia was very sneaky but now I know the “why” to all of my symptoms. All of these symptoms are still with me. Every day. I try not to complain as much to anyone.

On days when I can’t feel my left foot or my lip and cheek start twitching, it’s hard to ignore. When my left quad feels like a cable or my foot gets stuck in a “charlie horse” cramp, it’s hard to ignore. When someone says, “Look at this,” and I cannot turn my head in that direction without pain or without physically willing and pushing myself to do it, it’s hard to ignore. When I have insomnia and start to panic thinking about trauma, I get scared – and that is hard to ignore. It is impossible not to feel “defined.”

I am trying to get out more and I finally found a medication that has helped ease the spasm and pain, along with my exercise regime. That regimen takes up to three hours a day. My whole life has been spent dealing with dystonia and still is. Now that I know the definition of dystonia I can redefine the meaning and hopefully help others who feel lost and are struggling. If dystonia defines me, then so be it.

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

Gettyimage By: SIphotography

Originally published: November 21, 2017
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home