What If Pain Had a Color?
/By Carol Levy, PNN Columnist
What if your pain had a color? Not a color picked to honor an awareness day or month, but an actual color?
I could walk into the doctor's office. “I understand you have pain. Where is it located?” he’d ask. I’d point to the area. It was a bright chartreuse, as blinding as a neon sign.
“Oh yes. You definitely have pain. Let's see what we can do about that,” the doctor would say.
Wouldn’t that be simpler, easier? Unfortunately, it isn’t.
After the trigeminal neuralgia pain started near my eye, I was referred to a neuro-ophthalmologist. Our first meeting did not go well. The level of pain, the resulting disability, and its effect on me made it hard to tell my story in a calm and thoughtful way.
Stopping to collect my emotions, gather my thoughts and make sense of what made no sense, I started and stopped, my words coming in fits and starts. I struggled to control my emotions and not cry.
After a few minutes he stopped me. “Stop being so schizophrenic in how you're telling me your story,” he said. “Your pain is the result of anxiety.”
I didn't understand what he meant. No pain like mine could just be the result of nerves. He wrote a prescription for an anti-anxiety drug, but that only increased my stress, and the anger I felt towards the pain and medical profession.
Undaunted and with hope unfettered, I kept the next appointment. Again, he listened. He still seemed unimpressed with my pain and my story. But his interest was piqued by a birthmark on my forehead directly over the area of the pain. He noticed it would turn a brighter shade of red during various times of the appointment.
I was prissy back then. I hated cursing and embarrassed easily. He was not averse to using profanity, and just one or two words was too much for me. When he cursed, the birthmark would turn bright red. That changing of color and in the way my pain was triggered changed his feeling about my pain. He seemed more interested in it.
“I think it's time we bring you into the hospital,” he told me.
In those days, a doctor at a teaching hospital would be trailed by medical students, interns and residents. Like goslings imprinting on their mother, they followed the doctor everywhere.
When the group came to my room, the doctor wanted them to see how and when the birthmark changed color. He explained to them it was an outward sign of a neurovascular birth defect that he believed was the cause of my pain.
It was a teachable moment and the doctor liked milking it. He knew how easily I was embarrassed and how that would change the coloring of the birthmark. To get it to turn bright red, he jokingly threatened to expose himself (this was in the 1970’s). Immediately it changed color. I was so embarrassed.
It got to the point where all he had to say was, “I'm going to…” And like Pavlov’s dog, the birthmark turned bright red. He did that trick for his lot of ducklings, who were amazed.
My pain still did not have a color, but the changing color of the birthmark showed a visible, anatomic reason for it. It made my pain more real to others. If not for the birthmark and the trick of turning it off and on, the correct treatments might not have been tried.
Cancer patients have lumps or growths. Jaundice turns you yellow. Us? We have nothing but our word. Until pain has a color, our word has to be enough.
Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.
