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by Tom Seaman, BS, CPC


Dystonia and the opinion of others

Posted on January 14, 2016 at 5:05 PM

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 that I felt lost without my watch. She reacted by saying, "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 rose above it 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. Family, friends, and co-workers should 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 ourselves either. We should wear our challenges as armor. Not as shackles.


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.


Tom Seaman is a dystonia awareness advocate and Certified Professional Life Coach in the area of health and wellness. He is a support group leader for the Dystonia Medical Research Foundation (DMRF) and author of the book, Diagnosis Dystonia: Navigating the Journey (2015). To learn more about Tom and get a copy of his book, visit Follow him on Twitter: @dystoniabook1


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Reply Tom
1:48 PM on January 26, 2016 
Sherry says...
Thank you for this. It is hard when people don't understand. Even well intended comments/remarks can come across very hateful and hurtful.

That is very true Sherry. I think it is also sometimes hard to know what to say. In those cases maybe nothing at all would be best. I look at this as a way to better interact with people. When I think of what people say to me that is bothersome, I think of what would be helpful to me and then try to say that to someone else in my shoes.... and hopefully say the right thing :)
Reply Sherry
2:35 PM on January 25, 2016 
Thank you for this. It is hard when people don't understand. Even well intended comments/remarks can come across very hateful and hurtful.
Reply Tom
3:18 AM on January 25, 2016 
My pleasure Michelle. It is not easy to explain so people understand. The discouraging thing is when I think they do and then realize it went in one ear and out the other. The ones who do get it, or make the effort to be understanding even if they don't get it, are keepers!
Reply Michele
9:03 AM on January 24, 2016 
Thank you for sharing the truth of this disorder. I go through this everyday and it hurts inside that people don't understand what we feel. Thanks again for sharing the honest truth of this disability. I couldn't explain this any better. I have a hard time explaining to people what is wrong with me.
Reply Lee Pagan
8:58 PM on January 23, 2016 
I need to take notice of this advice! Thanks again :)
Reply beka serdans
1:55 PM on January 23, 2016 
Great sharing it..viraling