Unwelcomed Advice After My Dystonia Diagnosis

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Living with a chronic health condition that dramatically alters one’s life can be very confusing, scary, and lonely.

I lived in this mental misery for years when I developed dystonia, a neurological movement disorder. Pretty much everything was ripped from my life when dystonia intervened and became severe. I went from an active student, entrepreneur, and athlete to a lump of meat on the floor in too much pain to do anything. Adjusting to life with dystonia was very difficult to say the least. It was the biggest mind bender I ever experienced.

Everyone around me had all sorts of suggestions about treatments, how I should operate in my social life, people I should contact for support, jobs I might do to make some money since I couldn’t work a steady job, and activities to do during the day to take my mind off my symptoms.

I didn’t want to hear any of it. I was in too much pain to even stand up for more than a few minutes at a time and very ashamed about my inability to have much of a life. I was so angry and confused. I just wanted the world to stop. Nothing made sense anymore. I was lost and didn’t see the point in doing anything. Some days I thought it would be best if life just ended. Many nights I went to bed hoping I wouldn’t wake up.

People were well-intentioned when they came to me with ideas and suggestions for how to live a better life, but I felt like they were pushing things on me because anything beyond just existing seemed too much to handle. I viewed many suggestions as an insult because it often felt that my pain and the adjustment to my dramatic life change were being disregarded. I needed time to grieve and many people wouldn’t let me.

Grief was a huge part of my healing that few understood. I didn’t even understand it all that well until years later.

My position at the time was that if someone didn’t have what I had or experienced something similar, they were not in a position to tell me what to do or knew what was best for me. I perceived them as arrogant and self righteous because they appeared as though they knew better without understanding the pain and loss I was experiencing. I got either very angry or refused to listen. I was constantly in fight or flight mode. I just wanted to be left alone.

I needed time to sort out the hell I was experiencing.

Tom Seaman and kids
Tom with his niece and nephew

Some people were so frustrated when I ignored their suggestions that they left my life. I don’t blame them because from their perspective, I was a fool for not listening and doing things that probably would have helped. What they didn’t understand was that I needed time to process what happened to me before I was willing to listen. I had to get over the anger and loss. My life was flipped upside down and I needed to find my bearings. The last thing I wanted to hear was people telling me how to live my life. Ironically, it was the main thing I needed help with. I just wasn’t ready to listen.

I also didn’t want to learn how to live well with dystonia. I wanted find a way to not live with it at all. I was so angry at dystonia that the thought of learning how to co-habitate with it was out of the question. How dare I give into this beast that took away my life and learn to live with it?! What I eventually learned is that this is the only way to live a healthy life with any chronic health condition or other life challenge. I just wish I recognized this sooner.

A big part of our willingness to accept help is to have our situation acknowledged.

If people show us that they understand we are struggling and ensure us that they will hold our hand as we go through certain things, IN OUR TIME, we are much more apt to begin the rebuilding process. When we know we are not alone in our battle, we have much more courage to expand our horizons.

Edited excerpt from Diagnosis Dystonia: Navigating the Journey, by Tom Seaman

Tom Seaman Headshot (2)About the Author: Tom Seaman is a dystonia awareness advocate and certified professional life coach in the area of health and wellness. He is also the author of the book, Diagnosis Dystonia: Navigating the Journey (2015). To learn more about Tom and get a copy of his book, visit www.diagnosisdystonia.com. Follow him on Twitter: @dystoniabook1 and check out other articles of his on Patient Worthy here and here.

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