Wednesday, October 11, 2017

"You have dystonia"... Now what?

“You have dystonia” are three words that can be very confusing and frightening. Receiving the news that you have any chronic condition can bring out a lot of emotions. People may react with fear, anxiety, anger, disbelief, a sense of loss and injustice, and depression. Some become very inquisitive and feel vindicated that what they have wrong has been acknowledged. I would guess that most people experience a combination of all these things and more.

I experienced all of these things at one time or another. However, it was not when the doctor said, “You have cervical dystonia.” It was in the weeks, months, and years that followed that I rode the emotional roller coaster. I was actually relieved at first because I finally knew what was wrong so I could move in positive directions regarding treatments and lifestyle changes, rather than all the useless rabbit trails so many doctors had taken me on.

However, I was not equipped with the tools I have now to properly cope, so I lived in pure misery for many years. The suffering was brutal. That is why I wrote my book. To help people end their suffering by providing tons of strategies for how to combat the brutality of life with dystonia. I lived it so I know. Please take advantage of this resource and many others available to you. Click here to get it.

If the diagnosis isn’t enough, even more deflating to hear is, “there is no cure.” However, it is important to put this into perspective. How many diseases/disorders that people live with today, and live very well with, have a cure? I don’t have the answer to this, but it is pretty low. Most health conditions are managed, not cured, and dystonia is one of them.

Just like people with multiple sclerosis, cerebral palsy, Essential tremor, Parkinson’s disease, celiac disease, AIDS, etc., all of which have no cure, people with dystonia can live a fulfilling life with proper treatments and lifestyle changes. Please don’t allow yourself to believe that you won’t have a happy, functional life simply because dystonia has no cure. Many people have transformed their lives by finding successful ways to manage their symptoms. Be patient with yourself and never give up trying anything and everything.

Keep in mind these important tips for coping:
The dystonia diagnosis is not the definition of your life. It is not the book of your life. It need not be how you define yourself. It is not what happens to us in life that defines us. It is what we do with it that defines us.

- Work hard every day to think about your life right now and not the life you had. Take each day one at a time. 

- Don’t predict where you might be in six months or a year. As with all of life, dystonia is unpredictable so it is best to roll with the punches versus anticipating “what might happen.” Being consumed with worry can prevent you from helping yourself right now.

When I struggle in this area I say the following affirmation: “I relax into the flow of life and life flows through me with ease.” I read this in a book by Louise Hay called, You Can Heal Your Life, which I highly recommend.

- Saying how much we hate dystonia won’t make it go away. As crazy as it sounds, find a way to cohabitate with your dystonia because no amount of anger will take it away. Learn to work with it.

- Focus on things just as they are; not the way you think they should be. Do so with this in mind: “Acceptance doesn't mean resignation. It means understanding that something is what it is and there's got to be a way through it." ~ Michael J Fox ~

- Reach out to the many online forums, support groups in your area, and dystonia organizations to talk to others who can relate. Share what you are thinking and feeling. Learn about treatment options and coping mechanisms. Find the best doctor(s) and treatments for you. There is no cookie cutter approach.

Last but not least, please do not feel any shame. You have done nothing wrong to be in this situation and even if your family, friends, and doctors blame you or tell you it is all in your head, you know the truth. Don't allow their judgments affect your state of mind. Take control and do what is best for you in order to live as high a quality of life as possible.

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. Thank you dear Tom. Always so wonderfuly positive. Some of us are looking at the use of Ambien (US) or Zopiclone(UK). I discovered one day that if i took the sleeping pill during the day as well as night, that many of my symptoms disappeared. It would give me hours of very good functioning which was liberating and exciting. There are trials being run with Zolpidem, in the US. My life is much more possible on the new regime. When I told my doc that I needed more pills he agreed so I can now take 3 a day. I don't feel drowsy during the day and they still help me with sleep. The important content, apparently is GABA. I know you mentioned it before. We can't buy it here in the UK, only the pre-curser L-Glutamine. I take it in powder form before food.

    1. Hi Collette- Thank you very much for your comment. It isn't always easy looking at the positive, but it helps a lot if I stay in that mindset. That is pretty amazing about those meds! Dystonia is so bizarre how we all find different things that help us. Too bad you are not able to get GABA. It helps me a lot. Any chance you can order it online and have it shipped to you? I'm so glad to hear you are feeling better!!