“I feel pain when I see young people in wheelchairs.”

This statement appeared on an empathy test given to medical students, the Balanced Emotional Empathy Scale (BEES), presented at a Medicine and Writing conference I attended last year. The test-taker was to assign each statement with a number on a scale from +4 (highly agree) to -4 (highly disagree). This was presented as a reliable assessment of empathy.

I wrote -4 next to the statement. I do not feel pain when I see young people in wheelchairs. Nor do I feel pain when I see one using a cane or a walker/rollator. I feel a sense of kinship, compassion, respect; I have been using a cane off and on since my mid-20s, and I know how helpful it can be. I know wheelchairs aren’t objects to which people are bound; they offer freedom when legs won’t carry people where they need to go.

When I returned from the conference, I wrote “I feel pain when I see young people in wheelchairs” on the whiteboard of my Literature and Medicine classroom. I then wrote the following words: compassion, empathy, pity, sympathy—and asked my students to draw lines between them, connecting and categorizing, leading us to discuss underlying meanings. Feeling pain when seeing young people in wheelchairs, we agreed, relates more to sympathy and pity than it does to empathy and compassion. There is a gulf of difference between them.

The BEES test included statements about crying at weddings, at sad endings, and feeling uplifted by happy movies: Empathy as pity and emotional overload. And this, I have learned, has a lot to do with how empathy is defined by the medical field: It’s just too much to handle, too sad. A professional distance must be achieved. If empathy is defined as emotionalism, it’s easy to guard against, and to take refuge in the science offered in medical school. Other empathy tests rely on other metrics. According to recent studies, during medical students’ third year—the year they begin seeing patients—their empathic response drops significantly. Too often, medical professionals continue to struggle with compassion, which is why Medical Humanities programs such as the one I teach in are needed, to cultivate curiosity about the individual patient. Clinicians must maintain professional distance, it’s true; they can’t possibly absorb all the pain their patients bring to the exam room. But empathy is more than emotion; it’s understanding born out of human curiosity. Patients like me don’t want to be pitied so much as to be understood as individuals, to be respected, to be asked questions.

The desire for respect and curiosity resounded at a panel discussion organized by Rebecca Garden last March at SUNY Upstate Medical College. I joined other poets, Disability Studies scholars and activists Stephen Kuusisto, Jim Ferris, and William Peace in discussing how the perspectives offered by people with disabilities can educate medical professionals. What I came away with is how sharing individual disability experiences empowers patients, and listening to them can help clinicians strengthen the bonds of empathy.

Each of us represented a different disability acquired at different points in life, but we all shared similar observations we have made in medical settings. Together we arrived at certain ideas, not just across our own individual experiences, but through basic foundations of Disability Studies. We discussed the notion of cure as medicine’s main objective. When faced with the incurable, what can be done? “We’re sorry, there is nothing more that we can do,” Kuusisto reported, has become a standard, clichéd medical response to disability, nearly equivalent to the “avoid hot tubs” advice my neurologist offered to me when I was diagnosed with MS in the 1980s. But there is more to healing than curing. What can we as patients do? Engage their curiosity. Tell stories to help heal and build clinicians' empathy as they heal us. Ideally, we can develop partnerships with our clinicians, mutually approaching the levels of care with which we feel comfortable, gaining their respect as they gain ours.

Although MS is not curable (yet), those of us with relapsing MS are treatable, while people with more progressive forms may still feel underserved, needing empathy. I imagine all of us crave some degree of empathy from our care teams, someone curious to know what it’s like, to try to understand, to believe our symptoms, to listen. A deeper expression of empathy might bring us closer to a true sense of healing.
Tags Activism & Advocacy, Healthcare      9

Laurie Clements Lambeth, Author

Laurie Clements Lambeth’s MS diagnosis at the age of seventeen brought her to poetry. Her first book Veil and Burn (University of Illinois Press, 2008) was selected for the 2006 National Poetry Series. Currently at work on her second poetry collection and a book of creative nonfiction about MS, she also teaches in the Medicine and Society program at the University of Houston, where she earned MFA and PhD degrees in Creative Writing. To learn more about her work, please visit www.laurieclementslambeth.com