As both a patient and a medical student, I have found myself staring at the walls of many exam rooms. Most contain a poster depicting a rainbow of faces that express increasing degrees of discomfort. The first face has wide eyes and a grin that exclaims, “No pain today!” Its expression mocks the little face at the end of the row, which sobs and grimaces, its visage scrunched to depict the “worst pain ever” captioned underneath.
No one can know what hurts the “worst” because all we can ever feel is a product of our own experience. The end of my pain scale may not objectively come near that of a person undergoing chemotherapy or a neurologic pain disorder, yet it is equally real for me. The last time I was at the end of the scale, I sat in the ophthalmologist’s office, my face akin to that red, agonized looking icon.
Mine began like many illnesses do, with symptoms that I brushed off as insignificant. My eye started to swell and I felt pain along the lid. Perhaps this was another bout of pink eye? Better not cry on any shoulders or borrow any handkerchiefs… It soon progressed to a black eye. When I looked in the mirror, I barely recognized the girl staring back. She may have been my alter ego who got in bar fights and crawled out of bed barely remembering the night before. Either way, she looked like a mess. Finally, I woke up one morning with my left eye crusted shut, and that got my attention.
I have severe astigmatism in my right eye. When I was little, I tried to memorize the eye chart before the ophthalmologist came in the room so that one day I could waltz out of the office and throw away my glasses. Yet no matter how accurately I recited the list back, I always left with a prescription for clear glass on the left, and a thick, ominous lens on the right. Eventually, I switched to a new eye doctor and the chart was electronic. A plastic plate was placed over my left eye and the doctor asked me to read the first, largest letter. I told her I thought it looked like a school bus. She stared at me quizzically. “It’s an ‘E’.”
I lived with my left eye compensating for my right, nearly blind, eye for many happy years. The morning I woke unable to even peek through my “good” eye was one of the few times I have ever felt terrified. I rushed to see my doctor. She knew me well and didn’t even need to ask where I was on the pain scale. My frightened, swollen, tear streaked face said it all.
I left with an appointment for the ophthalmologist and some antibiotic eye drops. A few days later, I saw a new, bright-eyed, ophthalmology resident who appeared confused with my condition. He sent me to the Ear, Nose, and Throat specialist. This next doctor politely told me that this was by no means an ENT problem, and sent me back to the ophthalmologist’s office. By this time, I was sure I was going blind. I couldn’t open my eye, I couldn’t see, and it still looked like I’d been punched in the face. The best advice anyone could give me was to get an eye patch. Aye aye, captains.
When specialists have trouble figuring out the problem, the patient will worry
When specialists have trouble figuring out the problem, any patient will begin to worry. What is so wrong with me that no one can diagnose it? How is my body failing me so significantly? And perhaps the most heavily weighing question: Why me?
I sat in the waiting room unable to read magazines or even check my watch without painfully pressing my glasses against my swollen face. I had avoided social interaction for the past week because I feared I would pass on infection or frighten small children and squeamish adults. The receptionist called my name and I could feel the eyes looking at me as I got up, even if I could not see them.
The ophthalmologist who saw me was the head of the ophthalmology department. I described the course of my illness, the lack of effectiveness of my antibiotic treatment, and briefly detailed how this was affecting my life—as in totally removing any self-confidence or sense of empowerment within my own body.
“Do you know what this is?” I asked, pleadingly.
“I think I know someone who will,” was all that the doctor said.
After some time, he brought in another doctor with thick brown hair and an even thicker accent. This specialist explained that he was familiar with eye viruses, and that mine looked like something that was rare in the U.S., but much more common in South America. All I heard was that he could identify my ailment and help me fight it.
For the next three weeks, I came in for sessions where my eyelid was turned inside out, and the hardened discharge that had accumulated underneath was scraped off with a menacing silver tool. I spent hours talking with the doctor who shared the position of my personal hero and worst nightmare as he removed the disgusting yellow material from my eyelid as delicately as possible. As I looked up at the pain chart, I recognized the face on the right as my brethren. This was my worst physical suffering.
Why do we discount the patient perspective?
As students of medicine, we are inundated with names, symptoms, and treatments for a range of disorders and illnesses. We begin to mentally rank these across a pain chart almost immediately. Something like an ear, eye, or skin infection might lie on the left side of our scale while trigeminal neuralgia and emergency surgical issues occupy the right. Yet, in doing so, we automatically discount the patient’s perspective. We learn about someone with a squamous cell carcinoma and feel better that we do not have to treat the more difficult and riskier case of a melanoma. These are important relationships to understand. But at the end of the day, being sick and in pain is an awful experience. A cancer diagnosis is devastating, no matter what.
Recently, I shadowed a pediatrician who rolled her eyes at the complaints listed for a child in the clinic. “Another ear infection,” she said, “the fifth one this morning.” We entered the room and there was the five-year-old, sobbing and red. The doctor looked in his ears, confirmed the diagnosis, and reassured the family that the antibiotic would “fix him up in no time.” It was not her doctoring or communication skills that bothered me, but the attitude about the illness. Perhaps the patient had a hearing issue in their other ear so that like me, the loss of one sensory organ practically meant the loss of that entire sensation. Or maybe the family had already been to another healthcare provider that could not diagnose or treat the condition. Still, it could have just been your average run of the mill ear infection. Regardless, the child, himself, was in torment. He recognized the face on the far right as his own, and he wanted it to end.
As doctors, it is our job not only to provide care but to comfort. And to do this, we must acknowledge our patients’ feelings. A patient comes into the clinic feeling scared, helpless, and at some level of distress. It is not our place to judge whether or not their pain is minor or major, only to help them get through it. We are here to alleviate suffering, not to rank patients’ lived experience against another possible circumstance. I do know what “worst pain ever” feels like, and my icon happens to have a particularly horrified grimace and a patch over one eye. My patients’ worst will look much different, but by recalling my own pain, I bring forth real empathy rooted in shared experience.