A Pained Life: Lost in Translation

By Carol Levy, Columnist

Whenever I go to a doctor with a pain related complaint, I am asked the question we all know: “On a scale of 1 to 10, how bad is it?”

I always preface my answer: “Only trigeminal neuralgia is a 10.”

Nevertheless, they persist: “Give me a number. Well, okay, if I have to, I guess a 6.”

What does that mean? To me, it means the pain is pretty bad. Compared to trigeminal neuralgia, nothing can ever reach a 10 (I pray). As such, a 6 is pretty bad.

But to them, a 6 is not all that bad. I get the equivalent of a pat on the head and “take some aspirin or Advil.” Luckily, I am pretty healthy and usually that works. The few times it hasn't, it took a number of appointments, in one case a number of years, before I got a diagnosis and referral to someone who could help me.

On a scale of 1 to 10, who decides what’s qualifies as a 1 or what is a 10?

Each doctor, nurse and practitioner has their own definition in mind. I have yet to hear one say, “Well, I consider stubbing your toe a 2, appendicitis a 6, breaking your leg a 9. Based on that rating, what is your pain level?”

Then at least we'd have some basis for comparison and would be speaking the same language.

Years ago I walked into a neurologist's exam room. The air conditioning was on. It was triggering my trigeminal neuralgia. “Could you turn that down? It is really setting off my pain,” I asked.

The doctor looked at me and practically snarled, “If it was really making your pain bad you would have turned it off yourself.”

No, I wouldn't. I was not raised that way. As a female, as a patient, and as a person who tries to be courteous. It was his office and his air conditioner. It was not my place to just walk over and change the settings.

What we have here is a failure to communicate. He did not ask me, “If it is causing so much pain, why didn't you just turn it off yourself?”

I did not reply to what felt like an attack on me and my truthfulness. And he wrote in his records, “I do not think her pain is as bad as she says.”

We often talk and write about issues of communication.

“Friends, coworkers, and family don't understand my pain.”

“The doctor won't give me the medication I need.”

“He ignores my complaints.”

Maybe the issue is not being ignored or misunderstood. Maybe it is simpler than that.

When I was in high school, we had a Brazilian foreign exchange student live with us. She spoke no English. I spoke no Portuguese. The two of us walked around with a Portuguese-English dictionary. I looked up the English words and spoke the Portuguese equivalent. She looked up the Portuguese words so she could speak to me in English. It was tedious, but it worked.

Before we can go forward with getting help and understanding, maybe we need to do the same. Find a dictionary so we are all on the same page.

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.