The real impact of pain that people cannot see – Pain Series Part 1 of 3
Pain Series Part 1 of 3
Pain is one of the most intrusive things we can experience because it impacts nearly every aspect of our lives, especially if it is chronic. As Bonnie Prudden said, “Pain, not death, is the enemy of mankind.” I have lived with pain most of my life, but nothing as intense as the pain that came when I developed dystonia 25 years ago. The emotional toll of pain can be just as bad, and sometimes even worse than the physical pain. It is extremely difficult to understand.
Most people can relate to short-term pain or temporary limitation when they are sick or have an acute injury with an expected healing time (click here to see my article, You can’t fix dystonia with a cast), but life offers a whole new set of challenges when the condition is chronic, particularly for those who were once in good health. Losing one’s identity, abilities, and choices that many often take for granted is the reality of chronic pain. Adapting to a life filled with pain and debilitation (mental and/or physical) makes it so you are always being tested to the limits. It is exhausting, to put it mildly.
When my dystonia symptoms first began in 2001, pain was tolerable in my neck and back. I called myself “functionally uncomfortable.” Over a period of about 7 months, my pain increased exponentially to the point that I could barely function. It felt like there was a power drill continuously driving into the base of my skull which radiated down my neck into my shoulders and back. It never ever stopped. It was a miserable existence.
Other than going to the bathroom or getting food, I spent my entire day rolling around on the floor. I even ate on the floor, lying on my side sliding food into my mouth. It was too painful to sit upright. Lying down didn’t offer much relief, but it was the most tolerable position. So I went from “functionally uncomfortable” to very disabled in a matter of months.
I didn’t know pain like that was possible. My pain was akin to the feeling at the exact moment of injury that never subsided. It literally took my breath away where I found it hard to even speak. If you can recall a time you injured yourself (even just stubbing your toe or banged your elbow on a door frame) and how you felt at the exact moment the injury occurred where it vibrated through your body and took your breath away… that is how my neck, shoulders, and back felt nonstop for years.
I used to listen to people complain about an ache or pain and say to myself in anger and frustration, “if they only knew what real pain was like!” I understood what pain was like from many sports injuries and other aches and pains throughout my life, but pain from dystonia is a VERY different beast. It took me a while to appreciate that pain is relative to everyone’s own experiences (we only know what we know) and pain of any kind can impact quality of life, so I no longer pass judgment.
If you live with chronic pain for any reason, I empathize with you. If you don’t, I hope that you will better understand that for those of us who do, it impacts literally every aspect of our lives including work, social life, activity level, sleep, appetite, concentration and focus, not to mention the emotional toll it takes on us where we deal with intense worry, fear, anxiety, depression, loneliness, and for some, suicidal ideations.
This all said, please do not judge a book by its cover. Just because you cannot see pain in another person doesn’t mean it isn’t real or they are faking it. We often look better than we feel and one of the nicest comments I have heard that I invite you to use is, “I hope you feel as good as you look.” This acknowledges the person who is miserably suffering without making them feel more emotionally distraught than they already are.
Part 2 of this 3 part pain series is coming soon. It is called Life Impact of Pain.
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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 and Beyond Pain and Suffering: Adapting to Adversity and Life Challenges. He is also a motivational speaker, chronic pain and dystonia awareness advocate, health blogger, and member and volunteer writer for Chronic Illness Bloggers Network, The Mighty, and Patient Worthy. To learn more about Tom, get a copy of his books (also on Amazon), or schedule a free health coaching consult, visit www.tomseamancoaching.com. Follow him on Twitter @Dystoniabook1 and Instagram.
