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.

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.

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.

“What do you call out during seizures?” one student asks.

“I don't know,” I say, and want to add, but I mean all of it.

I know that saying this would be against the rules. I'm playing a girl who keeps her sadness so subterranean she can't even see it herself. I can't give it away so easily.

*  *  *

Were a medical actor to be given a script for my case, it might read something like this:

SP Training Materials

CASE SUMMARY: You are a 25-year-old female seeking termination of your pregnancy. You have never been pregnant before. You are five-and-a-half weeks but have not experienced any bloating or cramping. You have experienced some fluctuations in mood but have been unable to determine whether these are due to being pregnant or knowing you are pregnant. You are not visibly upset about your pregnancy. Invisibly, you are not sure.

MEDICATION HISTORY: You are not taking any medications. This is why you got pregnant.

MEDICAL HISTORY: You've had several surgeries in the past, but you don't mention them to your doctor because they don't seem relevant. You are about to have another surgery to correct your tachycardia, the excessive and irregular beating of your heart. Your mother has made you promise to mention this upcoming surgery in your termination consultation, even though you don't feel like discussing it. She wants the doctor to know about your heart condition in case it affects the way he ends your pregnancy, or the way he keeps you sedated while he does it.

I could tell you I got an abortion one February or heart surgery that March—like they were separate cases, unrelated scripts—but neither one of these accounts would be complete without the other. A single month knitted them together; each one a morning I woke up on an empty stomach and slid into a paper gown. One depended on a tiny vacuum, the other on a catheter that would ablate the tissue of my heart. Ablate? I asked the doctors. They explained that meant burning.

One procedure made me bleed and the other was nearly bloodless; one was my choice and the other wasn't; both made me feel—at once—the incredible frailty and capacity of my own body; both came in a bleak winter; both left me prostrate under the hands of men, and dependent on the care of a man I was just beginning to love.

Dave and I first kissed in a Maryland basement at three in the morning on our way to Newport News to canvass for Obama in 2008. That first fall we walked along Connecticut beaches strewn with broken clam shells. We held hands against salt winds. We went to a hotel for the weekend and put so much bubble bath in our tub that the bubbles ran all over the floor.

We'd been in love about two months when I got pregnant. I saw the cross on the stick and called Dave and we wandered college quads in the bitter cold and talked about what we were going to do. I thought of the little fetus bundled inside my jacket with me and wondered—honestly wondered—if I felt attached to it yet. I wasn't sure. I remember not knowing what to say. I remember wanting a drink. I remember wanting Dave to be inside the choice with me but also feeling possessive of what was happening. I needed him to understand he would never live this choice like I was going to live it. This was the double blade of how I felt about anything that hurt: I wanted someone else to feel it with me, and also I wanted it entirely for myself.

We scheduled the abortion for a Friday, and I found myself facing a week of ordinary days until it happened. I realized I was supposed to keep doing ordinary things. One afternoon, I holed up in the library and read a pregnancy memoir. The author described a pulsing fist of fear and loneliness inside her—a fist she'd carried her whole life, had numbed with drinking and sex—and explained how her pregnancy had replaced this fist with the tiny bud of her fetus, a moving life.

I sent Dave a text. I wanted to tell him about the fist of fear, the baby heart, how sad it felt to read about a woman changed by her pregnancy when I knew I wouldn't be changed by mine—or at least, not like she'd been. I didn't hear anything back for hours. This bothered me. I felt guilt that I didn't feel more about the abortion; I felt pissed off at Dave for being elsewhere, for choosing not to do the tiniest thing when I was going to do the rest of it.

I felt the weight of expectation on every moment—the sense that the end of this pregnancy was something I should feel sad about, the lurking fear that I never felt sad about what I was supposed to feel sad about, the knowledge that I'd gone through several funerals dry eyed, the hunch that I had a parched interior life activated only by the need for constant affirmation, nothing more. I wanted Dave to guess what I needed at precisely the same time I needed it. I wanted him to imagine how much small signals of his presence might mean.

Feeling Dave's distance that day had made me realize how much I needed to feel he was as close to this pregnancy as I was—an impossible asymptote. But I thought he could at least bridge the gap between our days and bodies with a text. I told him so. Actually I probably sulked, waited for him to ask, and then told him so. Guessing your feelings is like charming a cobra with a stethoscope, another boyfriend told me once. Meaning what? Meaning a few things, I think—that pain turned me venomous, that diagnosing me required a specialized kind of enchantment, that I flaunted feelings and withheld their origins at once.

Sitting with Dave, in my attic living room, my cobra hood was spread. “I felt lonely today,” I told him. “I wanted to hear from you.”

I'd be lying if I wrote that I remember exactly what he said. I don't. Which is the sad half life of arguments—we usually remember our side better. I think he told me he'd been thinking of me all day, and couldn't I trust that? Why did I need proof?

Voiced concern for my situation/problem. Why did I need proof? I just did.

He said to me, “I think you're making this up.”

This meaning what? My anger? My anger at him? Memory fumbles.

I didn't know what I felt, I told him. Couldn't he just trust that I felt something, and that I'd wanted something from him? I needed his empathy not just to comprehend the emotions I was describing, but to help me discover which emotions were actually there.

We were under a skylight under a moon. It was February beyond the glass. It was almost Valentine's Day. I was curled into a cheap futon with crumbs in its creases, a piece of furniture that made me feel like I was still in college. This abortion was something adult. I didn't feel like an adult inside of it.

I heard making this up as an accusation that I was inventing emotions I didn't have, but I think he was suggesting I'd mistranslated emotions that were actually there, had been there for a while—that I was attaching long-standing feelings of need and insecurity to the particular event of this abortion; exaggerating what I felt in order to manipulate him into feeling bad. This accusation hurt not because it was entirely wrong but because it was partially right, and because it was leveled with such coldness. He was speaking something truthful about me in order to defend himself, not to make me feel better.

But there was truth behind it. He understood my pain as something actual and constructed at once. He got that it was necessarily both—that my feelings were also made of the way I spoke them. When he told me I was making things up, he didn't mean I wasn't feeling anything. He meant that feeling something was never simply a state of submission but always, also, a process of construction. I see all this, looking back.

I also see that he could have been gentler with me. We could have been gentler with each other.

*  *  *

I always fight the impulse to ask the med students for pills during our encounters. It seems natural. Wouldn't Baby Doug's mom want an Ativan? Wouldn't Appendicitis Angela want some Vicodin, or whatever they give you for a ten on the pain scale? Wouldn't Stephanie Phillips be a little more excited about a new diet of Valium? I keep thinking I'll communicate my pain most effectively by expressing my desire for the things that might dissolve it. If I were Stephanie Phillips, I’d be excited about my Ativan. But I'm not. And being an SP isn’t about projection; it's about inhabitance. I can't go off script. These encounters aren’t about dissolving pain. They’re about seeing it more clearly. The healing part is always a hypothetical horizon we never reach.

*  *  *

In order to help the med students empathize better with us, we have to empathize with them. I try to think about what makes them fall short of what they're asked—what nervousness or squeamishness or callousness—and how to speak to their sore spots without bruising them: the one so stiff he shook my hand like we'd just made a business deal; the chipper one so eager to befriend me she didn't wash her hands at all.

We're supposed to use the “When you... I felt” frame. When you forgot to wash your hands, I felt protective of my body. When you told me eleven wasn't on the pain scale, I felt dismissed. For the good parts also: When you asked me questions about Will, I felt like you really cared about my loss.

A 1983 study titled "The Structure of Empathy" found a correlation between empathy and four major personality clusters: sensitivity, nonconformity, even-temperedness, and social self-­confidence. I like the word structure. It suggests empathy is an edifice we build like a home or office—with architecture and design, scaffolding and electricity.

Rating high for the study's "sensitivity" cluster feels intuitive. It means agreeing with statements like "I have at one time or another tried my hand at writing poetry" or "I have seen some things so sad they almost made me feel like crying”"and disagreeing with statements like: "I really don't care whether people like me or dislike me." This last one seems to suggest that empathy might be, at root, a barter, a bid for others' affection: I care about your pain is another way to say I care if you like me. We care in order to be cared for. We care because we are porous. The feelings of others matter, they are like matter: they carry weight, exert gravitational pull.

It’s the last cluster, social self-confidence, that I don’t understand as well. I’ve always treasured empathy as the particular privilege of the invisible, the observers who are shy precisely because they sense so much—because it is overwhelming to say even a single word when you’re sensitive to every last flicker of nuance in the room. "The relationship between social self-­confidence and empathy is the most difficult to understand," the study admits. But its explanation makes sense: social confidence is a prerequisite but not a guarantee; it can "give a person the courage to enter the interpersonal world and practice empathetic skills." We should empathize from courage, is the point—and it makes me think about how much of my empathy comes from fear. I’m afraid other people’s problems will happen to me, or else I'm afraid other people will stop loving me if I don’t adopt their problems as my own.

Jean Decety, a psychologist at the University of Chicago, uses fMRI scans to measure what happens when someone’s brain responds to another person’s pain. He shows test subjects images of painful situations (hand caught in scissors, foot under door) and compares these scans to what a brain looks like when its body is actually in pain. Decety has found that imagining the pain of others activates the same three areas (prefrontal cortex, anterior insula, anterior cingulate) as experiencing pain itself. I feel heartened by that correspondence. But I also wonder what it’s good for.

I wonder if my empathy has always been this way: just a bout of hypothetical self-pity projected onto someone else. Is this ultimately just solipsism? Adam Smith confesses in his Theory of Moral Sentiments: “When we see a stroke aimed and just ready to fall upon the leg or arm of another person, we naturally shrink and draw back our own leg or our own arm.”

We care about ourselves. Of course we do. Maybe some good comes from it. If I imagine myself fiercely into another's pain, I get some sense, perhaps, of what he might want or need, because I think, I would want this. I would need this. But it also seems like a fragile pretext, turning his misfortunes into an opportunity to indulge pet fears of my own devising.

I wonder which parts of my brain are lighting up when the med students ask me: “How does that make you feel?” Or which parts of their brains are glowing when I say, “The pain in my abdomen is a 10.” My condition isn't real. I know this. They know this. I’m simply going through the motions. They’re simply going through the motions. But motions can be more than rote. They don’t just express feeling; they can give birth to it.

Empathy isn’t just something that happens to us—a meteor shower of synapses firing across the brain—it's also a choice we make: to pay attention, to extend ourselves. It’s made of exertion, that dowdier cousin of impulse. Sometimes we care for another because we know we should, or because it’s asked for, but this doesn't make our caring hollow. The act of choosing simply means we've committed ourselves to a set of behaviors greater than the sum of our individual inclinations: I will listen to his sadness, even when I’m deep in my own. To say going through the motions—this isn't reduction so much as acknowledgment of effort—the labor, the motions, the dance—of getting inside another person’s state of heart or mind.

This confession of effort chafes against the notion that empathy should always rise unbidden, that genuine means the same thing as unwilled, that intentionality is the enemy of love. But I believe in intention and I believe in work. I believe in waking up in the middle of the night and packing our bags and leaving our worst selves for our better ones.

This post has been adapted from Leslie Jamison's The Empathy Exams.