How Well Does Your Doctor Listen?

By Carol Levy

In addition to my trigeminal neuralgia, I also have many side effects from various surgical procedures. It’s bad enough that trigeminal neuralgia is considered a “rare” disorder, but mine is from an even more rare birth defect. Add to that facial paralysis and phantom pain, and I am a very rare duck indeed.

My cornea specialist acknowledged this recently, when I asked him about an issue with my eye.

“Most patients do fine. But there's no one else like you. So with you, I just don't know,” he said.

It’s been years since I’ve had trigeminal neuralgia “tics.” The trigeminal nerve was cut and burned surgically to stop the “tics” from occurring. But lately I've been getting new facial pain, so I asked my neurologist if the nerve could be growing back.

She shrugged her shoulders and said, “I don’t know.”

I appreciate it when a doctor is honest. They don't like to admit or show uncertainty. After all, they're the experts. They need to be able to give an answer to the question that often haunts us and sends us to them in the first place: “What is this?”

To say “I don't know” is probably very difficult for them.

Unfortunately, for many of us, instead of an honest answer, we get pats on the head and platitudes: “It's anxiety. Calm down and relax. Your pain will get better.”

Sometimes we get disbelief: “I don't believe you have pain. Your story isn't right.”

Some basically tell us to go away and not bother them anymore.

And then doctors wonder why patients have lost trust in them.

Patients complain rightfully when a doctor spends most of the appointment on the phone or looking at their laptops. Sometimes, if they bother to look up, they’ll say, “I'm looking into a medication I think may help.” 

Okay, that's good. He's researching so he can prescribe the right thing. But couldn't he have said something before he turns to his phone?

“I need to do some research,” the doctor could say. “I want to be sure I have the right diagnosis and prescribe the right drug. I can call you or see you again if necessary.”

I might be annoyed by that. After all, I'm leaving the office with no diagnosis or prescription. But it's preferable to the wrong diagnosis or the wrong medication. Waiting for the phone call or going back to the office to get what I need is preferable to being treated for the wrong thing or with a medication that doesn't work.

But it doesn't negate the feeling that "he never looked at me."

This has gotten worse in the digital age. They don't look at us, they are often more focused on the computer. Supposedly that helps them take notes and write a thorough report as they conduct an exam. But how many times have you seen the report? Is it rife with errors, things you never said, or exams never done?

I have read a number of articles that put the blame for this on the insurance companies. They require all health records to be stored electronically (EHR), so a doctor has to look at his computer.

But, having to comply with that requirement does not impose an inability to look your patient in the eye, to show interest, empathy and caring. That is not the insurance company's mandate. That should be the mandate for good doctoring

I’ve also seen articles where the blame is placed on the media. They only report on the bad doctors, never the good ones.

I have never imagined my doctor wearing a magical cape or having phantasmagorical powers. I could care less what the media shows. I only care about my doctors and how honest they are with me.

Sadly, too many of them are encased in an armor that pushes us away, that makes us distrust them. It’s the turnabout of the old breakup adage: It's not me, it's you.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 40 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.