TOM SEAMAN

Dystonia and the opinion of others

While I truly believe that people are well intended, their opinions and comments often miss the mark when it comes to what we experience living with dystonia. Some of the many things we hear include:

“It’s all in your head.”
“You’re just having a bad day.”
“Everybody gets tired.”
“You’re just depressed.”
“You’ll just have to tough it out.”
“If you would just get out more.”
“There are people worse off than you.”
“It can’t be that bad.”
“If you would just exercise more.”

Most of these comments come across as judgmental, but I don’t think people are trying to hurt us. They just hurt sometimes because each statement feels like a harsh opinion not based in reality.

When my dystonia was more severe, I mentioned to someone how I felt lost without my watch. She said, “What do you need a watch for? You don’t do anything or have any responsibilities.” Unbeknownst to this person who rarely saw me and had a very small window into my world, I did have responsibilities of which she was unaware. Many were related to managing my symptoms so I could have some level of function during the day, which was the hardest job I ever had in my life. At the time I was very angry, but I didn’t let it fester because I knew she wasn’t aware of my challenges so she didn’t know any better. It still wasn’t very nice to say.

While I value the opinions of people in my life, I had to learn to be independent of the opinion of others. For my own sanity, I must live my life the best way I know how so I am most comfortable, regardless of what others think. Someone’s opinion of me does not have to become my reality. Finding relief should be our number one priority, or at least at the very top of our list; not pleasing others. Hopefully, family, friends, and co-workers will respect us for this. I doubt any of them would like to be in our shoes.

We need to put ourselves in a position of power and not accept labels that may be put upon us such as lazy, mental, apathetic, sympathy seeking, hypochondriac, or any other thoughtless title sometimes associated with a chronic condition. We need to be careful not to label or judge ourselves either. Honor yourself for the efforts you make every day to live the highest quality life possible.

Pace yourself and let others know that you might need to take a break once in a while or that it might take a little longer for you to do something. Ask for their patience, but more important, be patient with yourself. Take responsibility for your condition in order to make the best decisions for yourself. This is your life. Own it and live it how you choose, independent of what others think.

Life is deep and simple.
What society gives us is shallow and complicated.
Be a first rate version of yourself.
Not a second rate version of someone else.

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