By Carol Levy, Columnist
I’ve written before about Susanne Main’s Exhibiting Pain research project --- which looked at creative ways to express the chronic pain experience. I was happy to contribute a picture that conveys how quickly pain from trigeminal neuralgia can strike.
The Exhibiting Pain project recently ended, but before closing participants were asked if they had ideas for more research or collections.
My thoughts on the question turned to my own experience trying to get a diagnosis and help for my facial and eye pain.
Because of an insurance issue I had to go to a hospital clinic for over a year. Every visit was the same. I saw a medical resident, sometimes the same person, sometimes not. Regardless, the visit always followed the same script.
“I have terrible pain in my face,” I would say, while pointing a finger towards my face and drawing a circle around the painful area. Because of the horrendous pain triggered by any touch, I made sure not to come in contact with the skin.
The resident would look at me. Then he would shrug his shoulders or shake his head.
“I don't know what you have,” he’d say. “Maybe it's psychological.”
Other residents were dumbfounded and would send me home with a verbal pat on the head. I literally had to cry during a phone call with one resident before I was finally prescribed pain medication.
As many times as I showed up for my appointments, at least once a month, sometimes more, I would always say the same thing: “This is where the pain is.”
My finger never varied from the circle I drew the first time they saw me, and their answer never varied: “I don't know what you have.”
One evening I finally got a diagnosis. The only problem was it came while I was on a date with one of the ophthalmology residents. We were touching. My date lifted his hand and brought it up towards the left side of my face.
I yelled out: “Don't touch me there! You’ll set off the pain.”
He looked at me with a strange expression. “Exactly where is the pain?” he asked.
I mapped out the same area for him that I had at the clinic, for him and all the other doctors I had seen.
He sat up and stared at me.
"I know what you have. You have trigeminal neuralgia.”
It was surreal. His diagnosis was horrendous and scary. And we were on a date for goodness sakes. Why now? Why not tell me that in the clinic?
I never varied in the area I indicated and described, no matter how many times and how many doctors I saw. For some unknown reason, it was apparently ignored. I would later learn the area I showed them was the exact anatomical map of 2 parts of the trigeminal nerve. In fact, I was a textbook case. So why did they ignore me?
That I can't answer. But Susanne Main's work has led me to a conclusion: What if doctors asked to see a drawing of where the pain is located and how it feels? Would they be so quick to dismiss it, to not hear what we are trying to tell them?
Maybe the visual is what is necessary to open their eyes. And their ears.
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.”
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.