Effort Is Not the Enemy of Compassion

My time acting the part of a patient to teach medical students, and then becoming a real patient myself, taught me the nature of learning empathy.
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Damian Gadal/flickr

My job title is medical actor, which means I play sick. I get paid by the hour. Medical students guess my maladies. I'm called a standardized patient, which means I act toward the norms set for my disorders. I'm standardized-lingo SP for short.

Medical acting works like this: You get a script and a paper gown. You get $13.50 an hour. Our scripts are 10 to 12 pages long. They outline what's wrong with us—not just what hurts but how to express it. They tell us how much to give away, and when. We are supposed to unfurl the answers according to specific protocol. The scripts dig deep into our fictive lives: the ages of our children and the diseases of our parents, the names of our husbands' real estate and graphic design firms, the amount of weight we've lost in the past year, the amount of alcohol we drink each week.

My specialty case is Stephanie Phillips, a 23-year-old who suffers from something called conversion disorder. She is grieving the death of her brother, and her grief has sublimated into seizures. Her disorder is news to me. I didn't know you could convulse from sadness. She's not supposed to know, either. She's not supposed to think the seizures have anything to do with what she's lost.

STEPHANIE PHILLIPS
Psychiatry
SP Training Materials

CASE SUMMARY: You are a 23-year-old female patient experiencing seizures with no identifiable neurological origin. You can't remember your seizures but are told you froth at the mouth and yell obscenities. You can usually feel a seizure coming before it arrives. The seizures began two years ago, shortly after your older brother drowned in the river just south of the Bennington Avenue Bridge. He was swimming drunk after a football tailgate. You and he worked at the same miniature-golf course. These days you don't work at all. These days you don't do much. You're afraid of having a seizure in public. No doctor has been able to help you. Your brother's name was Will.

MEDICATION HISTORY: You are not taking any medications. You've never taken antidepressants. You've never thought you needed them.

MEDICAL HISTORY: Your health has never caused you any trouble. You've never had anything worse than a broken arm. Will was there when you broke it. He was the one who called the paramedics and kept you calm until they came.

We test second- and third-year medical students in topical rotations: pediatrics, surgery, psychiatry. On any given exam day, each student must go through “encounters”—their technical title—with three or four actors playing different cases.

A student might have to sit across from a delusional young lawyer and tell him that when he feels a writhing mass of worms in his small intestine, the feeling is probably coming from somewhere else. Then this med student might arrive in my room, stay straight faced, and tell me that I'm about to go into premature labor to deliver the pillow strapped to my belly.

Once the 15-minute encounter has ended, the medical student leaves the room, and I fill out an evaluation of his/her performance. The first part is a checklist: Which crucial pieces of information did he/she manage to elicit? Which ones did he/she leave uncovered? The second part of the evaluation covers affect. Checklist item 31 is generally acknowledged as the most important category: “Voiced empathy for my situation/problem.” We are instructed about the importance of this first word, voiced. It's not enough for someone to have a sympathetic manner or use a caring tone. The students have to say the right words to get credit for compassion.

Some med students get nervous during our encounters. It's like an awkward date, except half of them are wearing platinum wedding bands. I want to tell them I'm more than just an unmarried woman faking seizures for pocket money. I do things! I want to tell them. I'm probably going to write about this in a book someday! We make small talk about the rural Iowa farm town I'm supposed to be from. We each understand the other is inventing this small talk, and we agree to respond to each other's inventions as genuine exposures of personality. We're holding the fiction between us like a jump rope.

I grow accustomed to comments that feel aggressive in their formulaic insistence: that must really be hard [to have a dying baby], that must really be hard [to be afraid you'll have another seizure in the middle of the grocery store], that must really be hard [to carry in your uterus the bacterial evidence of cheating on your husband]. Why not say, I couldnt even imagine?

Other students seem to understand that empathy is always perched precariously between gift and invasion. They won't even press the stethoscope to my skin without asking if it's okay. They need permission. They don't want to presume. Their stuttering unwittingly honors my privacy: Can I . . . could I . . . would you mind if I—listened to your heart? No, I tell them. I don't mind. Not minding is my job. Their humility is a kind of compassion in its own right. Humility means they ask questions, and questions mean they get answers, and answers mean they get points on the checklist: a point for finding out my mother takes Wellbutrin, a point for getting me to admit I've spent the last two years cutting myself, a point for finding out my father died in a grain elevator when I was two—for realizing that a root system of loss stretches radial and rhyzomatic under the entire territory of my life.

In this sense, empathy isn't just measured by checklist item 31—voiced empathy for my situation/problem—but by every item that gauges how thoroughly my experience has been imagined. Empathy isn't just remembering to say that must really be hard—it's figuring out how to bring difficulty into the light so it can be seen at all. Empathy isn't just listening, it's asking the questions whose answers need to be listened to. Empathy requires inquiry as much as imagination. Empathy requires knowing you know nothing. Empathy means acknowledging a horizon of context that extends perpetually beyond what you can see.

Empathy means realizing no trauma has discrete edges. Trauma bleeds. Out of wounds and across boundaries. Sadness becomes a seizure. Empathy demands another kind of porousness in response. My Stephanie script is 12 pages long. I think mainly about what it doesn't say.

I've thought about Stephanie Phillips's seizures in terms of possession and privacy. Converting her sadness away from direct articulation is a way to keep it hers. Her refusal to make eye contact, her unwillingness to explicate her inner life, the way she becomes unconscious during her own expressions of grief and doesn't remember them afterward—all of these might be a way to keep her loss protected and pristine, unviolated by the sympathy of others.

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Leslie Jamison is a writer based in Brooklyn. She is the author of The Gin Closet, and her work has appeared in Harper's, A Public Space, and Oxford American.

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