Doctor, I’m Going Blind. Why Won’t You Talk To Me? | Eleanor Lew

I wish my doctors were more like my nephew. I trust and admire them. But many doctors are at a loss to convey their shared feelings with my pain. Unfortunately, many are also unable to express empathy in other ways.

This became apparent most recently when I went to see my eye doctor after noticing a sliver of missing vision in my left eye, my “good” eye.

I know that my retina specialist is both an excellent doctor and a compassionate person. So I do my best to avoid frightening him. I break the news to him gently, as he is examining my “bad” eye.

“I think I’ve lost a little vision in my good eye, too,” I tell him.

He switches to look into my “good” eye and mutters, “It’s the degenerative myopia stuff.”

Then he gives me my regular injection of medication to stop the bleeding in my “bad” eye and skitters out of the room so fast that he leaves his physician assistant and me spinning.

Wow, I scared him, I think to myself. He didn’t know what to say to me.

Meanwhile, my body feels like it is going into shock because of the abruptness with which my doctor left me.

I know my doctor is an empathetic man. I can only suppose that what he saw for the first time in my “good” eye overwhelms his kind heart. My doctor can do something to stop the bleeding in the back of my “bad” eye. But he cannot do anything for the problem in my “good” eye, because I have degenerative myopia, a hereditary condition caused by two recessive genes.

There is no cure or treatment for my degenerative myopia. A few years ago, sight in my right eye, my “bad” eye, vanished in a second. Now I worry that the same will happen in the other. I need my doctor to explain. I want to say to him – What’s happening, doc? Is there something I can do so it doesn’t get worse? Not knowing is stressful. Please don’t leave me in the dark.

But I am overwhelmed, too. When I first started having vision problems, I was given a diagnosis of wet macular degeneration. I religiously took a nutritional supplement called AREDS 2, which a major study from the National Eye Institute had shown could slow the progression of the disease. It was only when I went online to research degenerative myopia that I learned something that my doctors did not tell me. The kind of wet macular degeneration that I have, caused by my degenerative myopia, is different from the far more common age-related macular degeneration that afflicts so many older adults. AREDS 2 would not do anything to preserve my vision.

Members of the low vision support group that I facilitate tell me they have had similar experiences with doctors. They complain that doctors sometimes don’t explain what’s going on with their eyes and avoid giving them bad news.

A member once told her doctor about our low vision support group, and she was surprised to hear him complain. “Why is it that some of my patients seem ignorant about their eye condition?” Doctor, doctor, she thought, why are you asking me? Aren’t you the one who is supposed to do the explaining? But it’s more than just lack of information.

Nature, life experience or both endow some doctors with excellent bedside manners. Others, however, need help. In recent years, some medical schools, like Columbia and Duke, and hospitals, like Massachusetts General, have begun to train doctors in the art of empathy after evidence-based research demonstrated its power to improve patient outcomes and reduce doctor errors, malpractice suits and physician burnout. Especially noteworthy is that training doctors in empathy produces happier doctors.

Sadly, many doctors remain empathy illiterate. The unfortunate consequence is that some doctors can be excessively blunt, or, in my case, saying nothing at all. Either can result in confusion and suffering.

For example, a close friend who fainted in a restaurant woke up in a hospital and was abruptly told by an oncologist that she had lung cancer and only three months to live. The doctor told her she needed to make a will, pack her clothes and move into the nearest hospice. “It was harsh,” my friend said. Ten months later she is still alive.

I know what would work for me. All my doctor has to say is: I’m so sorry, Eleanor, that this is happening. Yes, I do see that there is some slight vision loss in your good eye. And this time the culprit is the degenerative myopia. You must have been terrified when you noticed it. The vision loss is still relatively minor so let’s keep an eye on it. If you see it getting worse, make sure you call me immediately.

Maybe my doctor wasn’t scared. Maybe powering through 40 to 65 patients a day is so exhausting that he cannot pause to muster the words I want to hear. But it would take only 20 seconds to say those empathetic words. Empathy heals, and it works. My words are making me feel better already.

This article was originally published in the New York Times on January 23, 2018.

A photo of me and my Neuro-ophthalmologist, Standing in his office
Dr. Kubis and I

GGB Note: Unfortunately, I have heard many stories like this from people in the blind community. A doctor who is too blunt, rushed, or rudely brief, (lacking empathy) can leave a traumatic lasting impression on a  patient. When the patient is worried or given some bad news, a little empathy goes a long way! My Neuro-ophthalmologist, Dr. Ken Kubis, Is one of the best doctors I’ve ever had. Sure, his knowledge and medical degrees are impressive, but his chair side manner is absolutely amazing! He answered my questions, explained every test, fought hard for a diagnosis, and kept me mentally afloat when I felt I was drowning in the sea of vision loss. He Is an extremely busy doctor and surgeon, but he knows the value of empathy. And, he is also one of GGB’s biggest fans!!

Related reading: Taking Time for Empathy

One Comment on “Doctor, I’m Going Blind. Why Won’t You Talk To Me? | Eleanor Lew

  1. Omg! I have a similar issue with my ophthalmologist (who happens to be considered the best retinal specialist in w. Australia).
    I have a different condition, which is probably far less serious (central serous chorioretinopathy), but it’s progressively rendering me sight challenged for sure.

    I thought I might be the only one tormented by this sort of a situation with her eye specialist. It’s no comfort to know I’m not alone (and I do hope communication with yr Dr has improved since u wrote this), while at the same time, it was nice to hear my thoughts echoed.

    Really hope things are looking up for u.
    All the best


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