We have to stop beating ourselves up
Dystonia and chronic pain 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.” 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 21 years suffering with dystonia to come to this realization, and it has changed my life. Please see my book to learn how I do this, as well as the many patient testimonials I included. 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 a 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.
Thanks Tom for your encouragement.I am doi ng botox and clonazepam but all the little social misfits could alienate a person from friend and family.
Is your book online?
Hi Tara, I agree about social media. I actually talk about it in my book. It is in paperback on my website and paperback and kindle on Amazon.
Thank you, Tom. This couldn’t have come at a better time, I really, really needed to hear what you said. Thank you, thank you, thank you!
Thank you Tom, I really needed to read this as I have been struggling for a year and beating myself up almost constantly. I`m trying to find solutions to recover, and next step is to get a DMX, and to find a TMJ specialist somewhere in Europe. I will buy and read your book soon..
The incredible pain from my Dystonia has destroyed my life by torturing me every minute of every day. I go to bed crying and wake up screaming in agony. But somehow I find the strength to continue on. The incredible words of support from you and many others help so much to keep me going – more than you will ever know, Thank you.
Thank you, Tom.
These are many dark days for me, and yes, I torture myself with thoughts of being a failure, worthless
And a real loser.
Its hard to not think of how I used to be and accept how I am now.
I don’t like myself. It’s fueled my drinking…..seeking an escape from pain and anger.
But I’m not giving up yet
There are many things I am grateful for, especially people like you and others with CD who are all fighting this together
Thanks again
The article is very helpful
Thank you yet again Tom. Your advice really hit home for me. I’ve had all of the thoughts you mention and never put it in the perspective as you did.