Living with Dystonia: Tom’s Story

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Guest post: What It’s like Living with Dystonia by Tom Seaman

I have lived with chronic pain from dystonia for almost 20 years. Since it is often very difficult for others to understand what it feels like, I want to provide some information about what it is, how it feels, and how living with dystonia impacts my life. Please share this with your family, friends, doctors, and anyone you think might find this helpful. I am going to give the general definition of dystonia first, and then provide personal information from my experiences.

What Is Dystonia?

Dystonia is a neurological movement disorder characterized by uncontrollable, involuntary muscle spasms and contractions. This causes repetitive movements, twitching, twisting, and/or abnormal postures. Muscle contractions can be sustained or intermittent and sometimes include a tremor. Dystonia can affect any part of the body, causing varying degrees of disability and pain from mild to severe. In some cases, dystonia exists without visual symptoms. Some people have muscles that involuntarily contract, but they have no change in physical appearance. Regardless of someone’s outward symptoms, pain is almost always present. People often describe their muscles as feeling like tightropes. In my case, I have cervical dystonia, meaning that it affects my neck region.

What Is It like to Live with Dystonia?

Unless you live with dystonia, it is very hard to understand what all of these symptoms mean or what it feels like, let alone the psychological, social, 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 nearly 20 years ago. It has challenged me unlike anything ever before. You can see in my photos above how dystonia can affect my body. I was in so much pain that I literally lived on my floor rolling around in pain. It turned my world upside down and has taken me many years to find my bearings and treatments that make me more functional.

Not wanting others to suffer this same torture, I made it my mission to educate people about it, so I became an active patient advocate. I have written numerous articles for a variety of print and online publications, as well as a book called, Diagnosis Dystonia: Navigating the Journey.  It was featured in Pain-Free Living Magazine and Pain Pathways Magazine and also recognized by the Michael J. Fox Foundation who added it to their list of suggested resources. I encourage you to get it for yourself, your loved ones, and your doctors. You can learn more about it if you click here.

How Do You Describe Dystonia?

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.

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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. Those of us with dystonia understand what all of this is like because we experience it, but 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 my video for some ideas: https://www.youtube.com/watch?time_continue=201&v=rqhhYnYoOZo

What Does Dystonia Feel Like?

While this video does not describe the many different ways dystonia feels, it is a good representation of what the vast majority experiences. Clearly, 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 (cramp specific to the quadricep muscle). 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. This 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.

A Smiling Woman Living with 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 every ounce of will power to get out of bed to just eat breakfast, and that was all I could do all day. A far cry from the life I lived prior to dystonia!

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. I hope what I shared provides 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.

About Tom Seaman

Tom Seaman is the author of Diagnosis Dystonia: Navigating the Journey, a comprehensive resource for anyone suffering with any health or life challenge. He is also a Certified Professional Life Coach in the area of health and wellness. Tom is also a health blogger, does motivational speaking, and volunteers as a support group leader for the Dystonia Medical Research Foundation (DMRF), for WEGO Health as a patient leader, and is a member and writer for Chronic Illness Bloggers Network. To learn more about Tom, get his book, or schedule a free coaching consult, visit www.tomseamancoaching.com. Follow him on Twitter @Dystoniabook1 and Instagram.

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