The Dystonia Diagnosis and Prognosis

May 17, 2021

“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 cry, scream, go numb, become very inquisitive, or feel vindicated that what they have wrong has finally been acknowledged. I would guess that most people experience a combination of all these things and more.

I can appreciate these reactions because I experienced them all at one time or another in the past 20 years I have had dystonia. However, it was not when the doctor said, “You have dystonia.” It was in the weeks, months, and years that followed that I rode the emotional roller coaster. I was actually pretty relieved at first because I had already self-diagnosed so it was good to get a doctors’ confirmation so I could move in positive directions regarding treatments and lifestyle changes.

If the dystonia diagnosis isn’t enough, even more deflating to hear is, “there is no cure.” This can cause anger, fear, and depression, to name but a few reactions. 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 nothing in my lifetime that I know of has ever been cured, so my guess is pretty low. Most diseases and disorders are managed, not cured, and dystonia is one of them.

Just like people with diabetes, multiple sclerosis, 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. The possibility for a remission also exists. 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.

Accepting the challenge
The dystonia diagnosis is not the definition of your life. It is not the book of your life. It is just one chapter of your life among many other chapters. While it can alter the course of your life from subtle to dramatic ways, 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. This goes for everything.

Work hard every day to think about your life right now and not the life you once had. This is the way everyone should live, dystonia or not. The past is over. Also, 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. Take each day one at a time.

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. When we say we hate something, anger, bitterness, and resentment consume us. Instead, find a way to cohabitate with your dystonia because no amount of anger will take it away. Fighting any adverse condition will only increase its power over us.

We have a choice to feel how we want about everything. Mindfulness (non-judgmental acceptance of thoughts and feelings) tells us that there is peace in accepting things the way they are in this moment. This acceptance gives us the space to just be, and with that space, the opportunity to let go.

Focus on things just as they are; not the way you think they should be. The changes that can come out of this acceptance are incredible. As Michael J. Fox said, “Acceptance doesn’t mean resignation. It means understanding that something is what it is and there’s got to be a way through it.”

If you have a racing mind full of questions and concerns, please reach out to the many online forums, support groups in your area, and dystonia organizations to talk to others who can relate. Dystonia is stressful and exhausting. Share what you are thinking and feeling. Learn about treatment options and coping mechanisms. You need not feel any shame. You have done nothing wrong to be in this situation. Take control and do what is best for you in this very moment in order to feel better so you can more effectively move in a direction to get better.

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Tom Seaman is a Certified Professional Life Coach in the area of health and wellness, and the author of 2 books: Diagnosis Dystonia: Navigating the Journey (2015and Beyond Pain and Suffering: Adapting to Adversity and Life Challenges (2021). He is also a motivational speaker, chronic pain and dystonia awareness advocate, health blogger, volunteer for the Dystonia Medical Research Foundation (DMRF) as a support group leader, and is a member and writer for Chronic Illness Bloggers NetworkThe MightyPatient Worthy, and The Wellness Universe. To learn more about Tom, get a copy of his books (also on Amazon), or schedule a free life coaching consult, visit www.tomseaman.com. Follow him on Twitter @Dystoniabook1 and Instagram. 

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11 responses to “The Dystonia Diagnosis and Prognosis”

  1. David Woolford says:

    Hi Tom
    In a recent e mail which I have mislaid you mentioned an item of equipment that hung you vertically upside down. Could you please remind me of the name of the item and any suggested sellers
    Thank you David Woolford

  2. David Woolford says:

    Thank you Tom
    I will be placing an order over the weekend
    Could I ask how does scheduling a call 📞 work
    I live in the UK 🇬🇧

    • Tom Seaman says:

      Thanks for your order David. Regarding scheduling a call, please click on the link at the top of each page that says “Schedule a Call with Tom.” You can also click on this link – https://www.tomseamancoaching.com/schedule-a-call-with-tom/
      This will send you to a form to complete. Once I receive it, I will send you a link via email to my calendar where you can select a time to talk. For international calls, I either use Skype or the phone feature in Facebook Messenger. Please let me know if you have any questions. Thanks.

  3. Anjie Holt says:

    Thanks for this Tom. You express the process of coming to terms with dystonia (and essentially all life’s challenges) in such an eloquent and calming way.

  4. Judi says:

    I have had a terrible flare up I believe is stress related! I am in severe pain 24/7! I have tried many treatments with no relief. Pain pills don’t seem to touch it! I’m interested to know what treatments have been helped others!

  5. Judy Valentine says:

    I found this article very enlightening. Our 30 year old daughter was diagnosed with Dystonia a year ago. She and her husband are managing their life style changes impressively. Their hurdle besides the Dystonia is having enough money to pay for her treatments which some doctors require in advance. If you know of any resources they can turn to I would surely appreciate your advice.

    Thank you ~ Judy Valentine
    valentinej54@gmail.com

    Thank you for sharing our expertise on this subject.

    • Tom Seaman says:

      Hi Judy- Thank you very much about the article. I am very sorry to hear about your daughter. I was her age when I was diagnosed and it was a life changer for me. I don’t know of any particular resources to help with doctor payments, except for some companies that have patient assistance programs. What treatments/therapies is she getting or wanting to get where she needs financial help?

  6. David Woolford says:

    Hi Tom
    Inspiring reassuring comments that give me confidence for the future
    Thank you
    Is your latest book available to buy direct in the UK

    • Tom Seaman says:

      Thank you David. I appreciate your comments and am happy that this was helpful for you. Yes, my new book is available on Amazon UK. You can search the title name (Beyond Pain and Suffering: Adapting to Adversity and Life Challenges) or you can search for dystonia and it will appear in the search results.

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