A Pained Life: The Language Barrier

By Carol Levy, PNN Columnist

Many years ago, I was in Brazil. I only spoke “pigeon” Portuguese. I walked into a diner, looked at a menu and saw something that looked good.

The counterman came over. I thought I said, “I would like the egg sandwich.” But I must have said something bizarre, because he walked away, twirling his finger by his ear and said, “Ella es loco.” She's crazy.

“No, no. Yo soy Americano,” I said. I am American.

Suddenly all eleven customers in the diner crowded around me asking, “Voce quiero que?” What do you want?

They figured it out and ordered for me. We continued to “talk” using hand signals and some of my “Portuguese.”

That memory reminds me of an episode of the TV show “Scrubs” in which a doctor asks his patient, “What level is your pain?”

The patient makes a face, mouth turned down, eyes almost crossed, forehead scrunched up. The doctor looks at a pain scale chart, the one that has faces going from “I’m okay” to “My pain is horrid.” The man's expression matches the face that shows he’s really hurting. “Ah. Your pain is severe,” the doctor says.

In both instances, the language gap is breached.

Things would be so much easier for us if this was how it worked between doctors and patients; having a communal experience in understanding our pain.

So many different pain scales are out there, all essentially the same: 0 = no pain and 10 = the worst pain imaginable.

I think adjectives express it better than numbers or faces, but using words like stabbing, aching, pulling and torture may actually harm us. “Torture” to me means horrendous pain, but to a doctor it may sound like exaggeration or hysteria. To me, “twinge” means painful, but to a doctor it may be pain that is not that bad and can be dismissed.

My recent brain implant made my pain much worse. I have never been good about talking about my pain. I rarely mention it, the level or how it feels. My doctors know what it is, they know from my history the effect it has had on my life. They know I am housebound for 80% of the time in an effort not to make the pain worse.

I called my neurosurgeon and used words he has never heard me speak, “I can’t take it anymore. It is almost unbearable. Please, take it out.”

Despite the pandemic and the ban on elective surgery, he scheduled the implant removal surgery within two weeks of our call. He understood me.

Probably no other doctor would have. My pain scale is not 0 to 10. Ten is the lightning, searing, knife-like pain I got from trigeminal neuralgia. Absent that, which thankfully I no longer have, nothing can or will ever reach 10.

My pain doesn’t slide. If I don’t use my eyes, which is what triggers my pain, I can be at 0. But once I start using them, I can go from 0 to 10 in the span of a few minutes. There is no ratcheting up little by little. If I don’t stop using my eyes, I will be in trouble. The pain will be out of control.

In my 42 years of living with this pain, at no time did a doctor ask me to explain how my pain works. They ask, “What kind of pain is it? How does it feel?” and so on, but never, “Can you let me know how you rate your pain so we will be talking the same language?”

How we communicate our levels of pain is often the decisive factor in the treatments and medications offered, dosages and the kind of opioid prescribed.

But if we don’t speak the same language, how can we understand each other? How can the proffered treatments or doses be what we need?

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.”