By Katelyn O’Leary
Scans, labs, and x-rays rarely identify chronic pain and illnesses. Doctors cannot measure your pain with a ruler or a chart – they rely on us to voice the problem. But what happens when you can’t find your voice? When you are so worn down from pain, procedures and prodding that you lose your self-confidence and positivity?
In his book Explain Pain, Dr. David Butler examines how pain affects not only our physical bodies but also our emotional and mental capacities. Having negative thoughts or becoming emotional can make the pain worse, and Butler calls these “Thought Viruses.”
When you have an invisible illness, one that cannot be measured or diagnosed easily, you have to arm yourself with knowledge to fight the pain. Learning the statistics, the treatments, and the secrets behind the disease is how you learn to COPE. Because if you don’t, the fear of what could happen or couldn’t happen will consume you. One of the quotes on the “Thought Virus” image states “We can put a man on the moon, why can’t someone just fix this pain for me?” Spiraling into these “What if” scenarios only makes things worse, because these aren’t questions that can be answered with logic that helps us heal.
They say it is therapeutic to give your pain a name, and to address it and treat it, as it’s own entity. My pain is named “Henry.” Most days, I am trying to keep “Henry” calm and relaxed – and when that doesn’t work I sometimes get angry with “Henry” and tell him so (sometimes with profanity). The truth is, “Henry” scares the living daylights out of me and I want him to go away and never come back.
A good clinician can only truly manage “Henry”, in my case a pain management specialist and a primary care physician willing to listen and understand my condition. But to find the right doctors, patients have to be willing to take control. If you think your doctor is wrong or not listening – say something. If you think you need a second opinion? Get one. Don’t assume one doctor has all the answers, and remember they are only human and can make mistakes.
Fighting the fear, the “thought viruses” takes so much inner strength and it can be debilitating. But with the right people in your corner and a treatment plan that can adjust to the flare ups and the fluctuations in pain – you can arm yourself with the right weapons to keep going.
Editor’s Note: Katelyn suffers from CRPS and lives in Los Angeles. She earned her M.A. from Carnegie Mellon and works in the entertainment industry where she has the aspirations to be a writer and producer.