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by Tom Seaman, BS, CPC

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What does dystonia feel like?

Posted on May 28, 2016 at 7:05 PM

What does dystonia feel like?
by Tom Seaman


Unless you live with dystonia, it is very hard to understand how it physically feels, let alone the mental and emotional challenges that come with it. For some people, dystonia permeates every single part of their lives, demanding so much of their attention that it can be the only thing they think about. Their symptoms never stop long enough for them to get a break. The pain for many is excruciating.

 

This chronic lifestyle is very hard to comprehend for a lot of people. It certainly was for me until I developed dystonia over 15 years ago. Prior to dystonia, life was easy. I never had to carefully consider everything I did for fear it would throw my body into more pain and trauma than it already was. I lived freely in a body that worked great, doing whatever I wanted, whenever I wanted; something I took for granted, which I now see so many able-bodied people doing all the time.


When dystonia hit, my perspective on this changed in an instant as I longed for that life I once had and never fully appreciated. Dystonia has challenged me unlike anything ever before. You can see in my photos how dystonia can affect my body. It turned my world upside down and has taken me many years to find my bearings.

 


There are so many people in our lives who don’t understand the devastation dystonia brings, so I hope this video and article provide a new perspective. Perhaps by learning what dystonia feels like, people can be more empathetic and we can enjoy happier, healthier relationships. While this video does not describe all the many different ways dystonia feels, I hope it is a good representation of what the vast majority experiences.


I find that the best way to describe dystonia is to share an example of something similar to what other people have experienced. At my worst, I used to say it felt like someone constantly had a power drill in my skull, neck, shoulders, and back, and a rope tied around my head yanking it towards my right shoulder. Of course I don't know anyone who has experienced this, so it is not relatable and thus, probably not the best explanation. I would get empathy, but it was accompanied by blank stares.


Similarly, I often hear people say it feels like the affected body part(s) is in a vice, they are being squeezed by a snake, their head feels like it is being pulled off or is the weight of a bowling ball, and/or their muscles pull, turn, and twist uncontrollably. While most of us with dystonia understand what all of this is like because we experience it, it makes little sense to someone without dystonia. In order for them to better understand, we must use specific, tangible things they have also experienced so they can relate. Or, be creative and have them do things that mimic what you feel. Please see the video for some ideas.


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As you can see from this video, dystonia is not a fun disorder to live with by any stretch of the imagination. Take one of the examples I give about a charley horse. Imagine what your life would be like if you had a charley horse that never went away. It is almost unfathomable, but this is what dystonia feels like for so many of us. Is it any wonder some of us may not be the same person we were before dystonia entered our lives? Chronic pain can change everything, which has forced us to adopt coping mechanisms that don’t necessarily reflect our real level of discomfort.


When we say we are in pain, it is often worse than usual; much of the time we are just coping and trying to sound happy and look normal. The gal in the picture below is evidence of this. She was in major pain in this picture, but her smile tells a different story. Also take note of how she is holding her head; a gesture that is very familiar to those of us with cervical dystonia.



 

Sometimes we hear others say, “You just need to push yourself more.” It may be hard to read how we feel on our face or in our body language, but we push ourselves all the time; sometimes too much and we pay for it later with worse symptoms. Finding balance is one of our greatest challenges. Some days we do nothing but push just to get through the day. Sometimes it took everything I had in me to merely get out of bed to make breakfast.


This is the reality of dystonia for many people, which can be a difficult concept to grasp. It is even difficult for those of us living with dystonia to sometimes understand. This video and article should provide more clarity. Too many people with dystonia do not get the support they need because those close to them simply do not understand the gravity of the situation, including our doctors. I hope this helps in that regard.

 

Tom Seaman is a dystonia awareness advocate and author of the book, Diagnosis Dystonia: Navigating the Journey. He is also a certified professional life coach in the area of health and wellness. To learn more about Tom and get a copy of his book, visit www.diagnosisdystonia.com. Follow him on Twitter @dystoniabook1

 

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5 Comments

Reply Wendy
4:23 PM on June 27, 2016 
I recently purchased your book and appreciate how thorough it is. Thank you for writing it. I have struggled with depression since learning I have cervical dystonia in 2015. I think I have had cervical dystonia for 19 years. The obus forme neck and back support is wonderful. I am determined to continue doing what I can, not to become disabled. I will not do Botox. I want to go to Santa. Fe but cannot swing it at this time. Thanks again.
Reply Tom Seaman
2:38 AM on June 5, 2016 
Thank you very much Joan! I am really happy you are finding my book helpful. As you said, education is so key and I do my best in that regard. Seems like an uphill battle sometimes, but the more we talk, the greater our chance at changing lives. I am the same as you- every occasion is an opportunity to educate. Sometimes I create a situation where I find a way to talk about it. This makes others less uncomfortable, because it is often hard to know what to say or ask, and it helps ease whatever discomfort that might exist. Thanks again and keep on doing all you are to live well!
Reply Joan Piedmonte
8:56 PM on June 2, 2016 
Tom, I am finding your book very helpful, but more importantly I am appreciative at your efforts to help educate the public on what living with Dystonia does to people. We must continue to spread the word so more people understand how this affects our population. It is amazing how often I feel this "disorder" makes other people in my life uncomfortable. Instead, I must remember each occasion is an opportunity to educate--even when I look "normal". After each quarterly Botox session kicks in, friends often tell me how much better I look. I used to thank them. Now I tell them nicely that while my treatments allow my body to look normal, the pain never stops--but it is easier on my body for a few weeks. Thank you for your continuing efforts.
Reply Tom Seaman
12:22 PM on June 1, 2016 
cheryl dillon says...
Thanks for the very kind message Cheryl! I really appreciate you sharing the article and video. As you know, it is tough to make people aware of dystonia, let alone how it feels and the impact it has on our lives, so the more sharing we do the better our chances at better treatments... and understanding from those close to us. Thank you again!!
Tom, Thank you for being an advocate for we who experience the challenges of Dystonia. This is a wonderful article, and video. I have posted these materials to my own wall in the hopes to better help those in my immediate circle of what 'a day in the life of Dystonia' feels like. Well done, sir! Please continue to educate us all!
Reply cheryl dillon
10:13 AM on June 1, 2016 
Tom, Thank you for being an advocate for we who experience the challenges of Dystonia. This is a wonderful article, and video. I have posted these materials to my own wall in the hopes to better help those in my immediate circle of what 'a day in the life of Dystonia' feels like. Well done, sir! Please continue to educate us all!