After the diagnosis/Self harming thoughts
After being diagnosed with dystonia, or any other chronic health condition, and learning it is not a temporary problem (or if you have lived with it for years and are feeling fed up), experiencing fear, anger, depression, and anxiety is normal. We not only experience the painful physical symptoms and the loss of competency, we have many questions.
How will it affect my life? Is it curable? Will it get worse? Will it get better? How is it treated? What will treatments cost? Do I have to take medication or have surgery? Will the pain ever go away? Will I have it the rest of my life? Is it all in my head? How did it happen? Was it my fault? Will I still be able to work? Will I be able to take care of my family?
The questions are endless and not all of them can be easily answered or answered at all. This can lead to panic and anxiety which will make symptoms worse, so please be careful. Seek answers one at a time so you are not overwhelmed trying to solve everything at once. Prioritize your concerns.
Developing a chronic condition is not like a sprained ankle or the common cold, both of which we heal from and return to normal. Chronic conditions are entirely different. They stay with us all day, every day, with no expected recovery time. Both mentally and physically, most of our energy is directed towards reducing symptoms and controlling panic about what it means for our future.
At my worst, my energy was strictly on how I could end the ridiculous pain. Literally, nothing else mattered. It was a very scary and confusing time for me because I felt so lost and alone. I kept telling myself to be patient; that I would find my bearings. Eventually I did, but not before other thoughts crept in.
Suicidal ideations
Dystonia cannot be wished away so a lot of us experience intense fear, anger, and sadness. Where anger and fear exist, anxiety, isolation, and depression often follow. Add physical pain and a sense of helplessness and life can lose all meaning. If these feelings persist, the most perverse thought one can have is suicide.
I thought about suicide. I no longer do, but when my pain was severe and my neck and back muscles would not stop contracting and twisting, it crossed my mind. I would say that I wanted to die, but I never talked about my actual suicidal thoughts with anyone. I was afraid. It seemed taboo.
I wish I did because I really needed some perspective about what I was feeling. There was no shame in feeling the way I did, but in the moment I was confused and afraid. I didn’t know who to talk to or what to say. Looking back, I could have talked to family members, friends, therapists, and others with dystonia. I now know that would have helped a lot!
Thoughts of self harm passed when I learned more about dystonia, treatment options, coping tools, stress management techniques, and finding out that there were others who felt just like me. I wasn’t alone!
It also helped when I began to focus on the things I could do versus all I had lost. It took great mental fortitude to find meaning in my life, but I did and it grew as more time passed. There is meaning to your life as well, no matter how much suffering you experience. Please have faith and be patient with yourself.
If you have any thoughts of suicide, please speak to someone. It is not uncommon in the dystonia community to have these thoughts so please have the courage to speak about it, whether it be at your local support group or the many online support groups primarily found on Facebook. You will not only be doing yourself a big favor, but others as well by opening the door for them to feel comfortable talking about it. If you are in the United States, you can also call the National Suicide Prevention Lifeline (1-800-273-8255).
None of us are immune to the challenges of life. At some time or another we all endure tough experiences. When adversity comes, how we respond to it determines what happens next. Life experiences become tragedies if we make the conscious decision to make tragedies out of them. We can either resist or we can accept challenges. If we choose to view all challenges as opportunities for personal growth, they can be a driving force for positive changes.
Tips for dealing with your diagnosis:
– Research your area and surrounding areas for quality people who treat dystonia.
– Respect your dystonia and know your limitations. Learn to listen to your body.
– Educate yourself about dystonia as much as possible and become your own best health advocate.
– Understand that this journey requires trial and error, and patience.
– Trust that life will continue for you regardless of this challenge.
– Trust that you will get better if you are true to yourself and follow the treatment path that works best for you.
– Don’t make getting better your entire life’s mission to where you feel no other purpose.
– Stay connected and involved with family, friends, and community.
– Get involved with support groups. Seek help from others and learn how to help them as well. Helping others is a big part of healing.
-Stop asking “Why me?” and start asking “Why not me?” Opportunity lies in all good fortune and all misfortune.
– Spend time in prayer and meditation.
– Be kind to yourself and others.
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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, Brain & Life Magazine, The Mighty, Patient Worthy. 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.
I cannot believe I am actually sharing my darkest, deepest thoughts of having dystonia for 30 yrs now & also attempted to take my life. When I had to stop a career as a Paralegal in 1995, I thought “Susan has already died”…sometimes these thoughts crept up again over the years. But I was always an advocate, learning & teaching about Dystonia. Marching (riding a scooter) in WA., for the ADA as a member of the NH Council of Disabilities; 2019 I had DBS surgery. It seemed the only thing left to do. Now I feel as if I’ve been diagnosed for the 1st time & it has brought so many thoughts back. I finally reached out on f/b & to my surprise found a support group on line for DBS Pt Support. I always tried to make lemonade out of the lemons given to me & sometimes it all consuming.. Now I hand research & new treatments to the next generation. My dystonia is hereditary so the guilt was sometimes too much. But as I sit here sharing I am so grateful the Mr. Seaman came up on my radar. I truly believe that there is hope I will once again invent myself as I have done for the past 30 yrs. All the Best. Please Stay safe..Susan
As a chronic back pain patient for 20 years and trying everything to get relief and nothing working it was interesting to read your article. I will have to admit that more than once I have contemplated suicide. Didnt get very far in that direction but when the pain wont ease sometimes it seems there is no hope. For now I live with pain pills. Unfortunately I know that the pain will get worse as time goes by. Thanks for addressing the issue. Best Wishes. Dee Grisamore
Thanks very much for sharing, Dee. I am sorry to hear you are living with so much pain for so long. I hope you are able to find relief from the pain pills and hopefully something else that comes along down the road. Something I find helpful is a Pemf device called OSKA. On my blog, I wrote a few reviews about my experience if you want to check it out. If you ever again find yourself feeling so down or in pain that taking your life is a thought you have, please reach out to me or someone else who understands.