Be careful about being too hard on yourself if you live with a health condition that already kicks your ass
Dystonia and chronic pain, as well as many other health conditions, remind me of bullies that pick on kids in the schoolyard every day. Like the bully, dystonia and chronic pain do not follow any rules and after multiple beatings, we can lose our sense of self. It is not uncommon to then feel weak and not as worthy as others or as worthy as we once were. To make things worse, we beat ourselves up for not being as competent prior to our health issue. No matter what we do, it is never enough if we don’t measure up to our former selves. This is a HUGE challenge for many of us with dystonia and chronic pain to overcome, but we must end this personal torture!
This may come as a surprise, but in many ways, I think we are stronger than we were before dystonia. Dystonia has probably been one of the greatest challenges of your life, as it has mine. It takes a special person to handle all we do, having to overcome so much pain and unexpected obstacles, and persevere every day. If we continue to get up every morning and try to make a life for ourselves to the best of our ability given our circumstances, we are doing far more than we often give ourselves credit.
We have to remember that the symptoms of dystonia can be so brutal that we sometimes wonder if it is even worth getting out of bed, especially if you also suffer from depression and anxiety. But you do and that needs to be honored. If you go a step further and take a shower, eat breakfast, check emails… whatever it may be, honor that! Acknowledge every effort! It doesn’t matter what your life was before dystonia. What matters is what your life is now, in this very moment, and everything you do to make it the best you possibly can. Life before was easier for most of us. DON’T use that as your measuring stick. Measure yourself against your darkest moments and the progress you make, no matter how big or small. This is what matters most in life.
People often tell me that they feel that they have not accomplished anything since dystonia started; that they feel like they are “not enough.” I also felt this way many times in the past 20 years with dystonia. This is an inaccurate and harmful perspective. Is it not an accomplishment to carry on with life and still seek happiness when dealing with chronic pain and other symptoms? I bet you seek it and value it more now than you ever did. This gratitude shows massive personal and spiritual growth. The mental strength it takes to persevere in the face of adversity is far more an accomplishment than living a life with few obstacles, or obstacles that are easily overcome, as many were before life with dystonia. Acknowledge your willingness to keep living as fulfilling a life as possible and stop beating yourself up. We all need to vent and grieve. However, if we are always angry, it increases stress which increases symptoms, and no amount of anger will ever make dystonia go away.
“When the Japanese mend broken objects, they aggrandize the damage by filling the cracks with gold.
They believe that when something’s suffered damage and has history, it becomes more beautiful.”
The gold is not meant to fix us. It is meant to add a new dimension to our being, much like when we are forced, by change or circumstance (i.e. dystonia), to create a new life. By doing so, we become more willing and able to accept any situation. When we come to understand and accept that life is difficult, we learn to be okay with what is not okay… and this, I promise all of you, is the key to healing. It took me 10 of my 20 years suffering with dystonia to come to this realization, and it has changed my life. Once we truly understand and accept that life is difficult, it no longer matters and suffering is eliminated.
Edited excerpt from: Diagnosis Dystonia: Navigating the Journey. Click here to get your copy.
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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 (2015) and 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 Network, The Mighty, Patient 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.tomseamancoaching.com. Follow him on Twitter @Dystoniabook1 and Instagram.
Thank you so much for this reading. It is really encouraging. Good way to start the year realizing that acceptance it is really important to keep living our already challenged life in a peaceful way.
I am glad to hear it was encouraging, and like you said, very important timing to really practice acceptance, as well as forgiveness and gratitude… and there truly is no time when these are not powerful and very much needed 🙂
Thank you so much, Tom ,for your coaching and inspiration! I am suffering for 7 years now, after i was diagnosed with cervical dystonia. Unfortunately, it moved on,in my left hand,right arm and hand and right leg. I do recognise your story about being angry or sad,that i can’t do the things anymore, what i used to do…. Kind regards, Ans
I am very sorry that your dystonia has moved to your extremities. I hope you are getting treatments that are of help, especially during these difficult times with Covid. My very best wishes to you in the hopes that you can find some relief.
Thank you as always Tom for your kind inspiration and encouragement. It is a day-by-day life. I went to our nearest beach on a bus today and saw, unusually, a family of cormorants. 8 in all. To walk on the sand and to hear the sea was wonderful. Head-pulling and pain aside, it was worth it.
My pleasure and thank you for sharing that experience on the beach! It sounds so peaceful and relaxing. It reminds me that I want to etch out some time to go to the beach also, which is not too far away. Thank you 🙂
Thanks Tom, another very inspiritional article! Debbie
Thanks Debbie! Happy New Year and all the best!
For years I was diagnosed with dystonia and I still have it. In December of this year I have been diagnosed with Corticobasal syndrome by Mayo. I am having a hard time with it.
I am very sorry to hear about the other diagnosis. Living with one is tough, let alone others. Do the doctors think that there is a relationship with dystonia?
Thank you for your encouragement. I have DRD (Dopa Responsive Dystonia) . Everyone in my life thinks Dopa is my Dystonia fix..but it’s a different day, every day, and every day is a challenge to pretend it’s not painful. I needed to hear someone else knows its not easy! Thank you!
I am very sorry about your DRD and how people in your life are not more understanding. Have you ever been in touch with Jean Sharon? She has DRD and has written a book about her remarkable experience with it. She is a great resource of knowledge.