Saturday, July 16, 2016

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 Certified Professional Life Coach in the area of health and wellness, and author of the book, Diagnosis Dystonia: Navigating the Journey, a comprehensive resource for anyone suffering with any life challenge. He is also a motivational speaker, chronic pain and dystonia awareness advocate, health blogger, and volunteers for the Dystonia Medical Research Foundation (DMRF) as a support group leader, for WEGO Health as a patient expert panelist, and is a member and writer for Chronic Illness Bloggers Network. To learn more about Tom’s coaching practice and get a copy of his book, visit Follow him on Twitter @Dystoniabook1 and Instagram


  1. It is so hard to not take others opinions because then they think you don't respect their opinion and soon they don't talk to you. Some ppl make it their mission to help us and when they are told they can't they move on to the next person to help. There are ppl like this. We fufil some need of theirs at our emotional expense. This is partly why a lot of us are so lonely. It is hard to listen to people who think they know what is best and have it thrown at you all the time.
    Nadia C (your friend on Facebook)

    1. Hi Nadia- I think it all comes down to how we respond to people which determines how the relationship moves forward, and vice versa of course. I am open and non-emotional with people who share their opinions with me. I used to get very angry and combative which made them disappear from my life. I am not saying you are doing this, because I have no idea. I am just reflecting on my own experiences. I expect people to throw ideas at me all the time... and often the same ideas over and over. I listen, but don't have to take their advice if I don't feel it suits me. If they are not okay with this, I have no control over that. That is their issue. Respect is a two way street and I respectively listen and acknowledge their willingness to help, but also let them know how I need to live my life that is best for me, which may or may not involve agreeing with their opinion or suggestion.