A Pained Life: Teaching the Reality of Pain
/By Carol Levy, Columnist
Excedrin, which makes an over-the-counter pill for migraine sufferers, has a wonderful TV ad.
A sufferer wanted to show her mother what she sees and experiences when she has a migraine. Excedrin developed a simulator that does exactly that (click here to see it).
The mother puts on the device and sees the visual disturbances her daughter sees when she has a migraine attack. As she removes the device the mother turns to her daughter, hugs her and says, “I'm so sorry. I didn’t know.”
How wonderful, I thought. If only...
If only there was a way to simulate the pain of constant, intractable chronic pain.
If only there was a way to get our message across, and in a visceral way.
Too often we are told, even by medical professionals:
“It can't be that bad.”
"I had a sprained ankle so I get your pain.”
“It's all in your head. You just don't want to (go out, work, be a part of the family, the community, the world, etc.)”
It is common for a pain sufferer to write in the comment section of articles on chronic pain the following:
“I wish doctors would have chronic pain, even if only for a day or two so they would get it.”
When I had the worst of my trigeminal neuralgia, I could not tolerate any touch to my forehead on the affected side. This meant I could not wash that part of my face or my hair. As a result I would get a big buildup of soap and dirt in the area which, because of a facial paralysis and my eye not being able to close well, caused eye infections.
The only way to clean the area was to put me under general anesthesia. The nurses and doctors were wonderful about it, the doctor having shampoo in his locker in case I forgot mine.
When someone asks me about the pain and they say outright or make expressions indicating they don't believe me, I trot out my general anesthesia anecdote. Then they get it. After all, why would a doctor or a patient take the risk of anesthesia without a real need to do it?
I recall a TV show, maybe it was Doogie Howser, MD, where medical students went through a simulation of what it is like to be a patient. They were given cloudy glasses to feel the disorientation of being unable to see clearly. They also put pebbles in their shoes to feel the discomfort of severe pain when you are trying to get around.
I had hoped maybe they did actually do this at a medical school somewhere, but no matter what words I put into Google Search, I could not find anything. The closest are programs where actors are hired to portray various illnesses to help teach students better diagnostic skills, insight and empathy. But no actors had the role of being in chronic pain.
How can we teach the students?
I didn’t realize when I started writing this I would feel so frustrated by the question. I guess I expected I would find a pithy answer.
Unfortunately, part of the answer is that students come from the general population, which often cannot accept the level of pain we feel. So they bring that skepticism and disbelief with them.
It would be unethical to put them in actual pain.
But maybe if we could show them the impairment, if we could find a simulator to allow them to feel the frustration of being unable to tie a shoe, go out in the slight breeze without the triggering of exquisite pain, or even walk, we too might too hear a “I'm so sorry. I didn’t know.”
And wouldn’t that be wonderful.
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.
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.
