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


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.

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