The merest schoolgirl, when she falls in love, has
Shakespeare or Keats to speak her mind for her;
but let a sufferer try to describe a pain in his
head to a doctor and language runs dry.
–Virginia Woolf, “On Being Ill”
In the 1940s, a group of researchers at Cornell University were trying to come up with an objective method to use in measuring pain. They suggested that a person’s pain threshold be measured in a unit they called the dol, which was short for dolor—Latin for “pain.” Once they had a name, they had to figure out what a dol actually was. The only way to do this was to design experiments that intentionally inflicted various types of pain onto human subjects, then scale them accordingly. So that’s exactly what they did: they came up with over a hundred different experiments using various pain-inflicting stimuli. As they reached the upper limits of pain, however, they were confronted with a very obvious problem. To understand pain at that level, they’d have to truly injure a subject, and the margin of error for something like that would have no doubt been very small. What they needed was a highly painful experience that wasn’t going to maim or kill anybody, and that they could easily observe. And that’s how researchers from Cornell found themselves in the obstetric wing of New York Hospital burning the hands of laboring women.
The results of the study were published in 1949. It might seem like the study’s authors would have had a lot of convincing to do when it came to recruiting women to take part, but, as they noted in their introduction, it actually wasn’t that hard. The majority of the women volunteered because they were curious about the work. Many of them were either married to doctors or had been nurses, and they understood the challenge that pain presented to the field of medicine. They were, however, a little dubious about the proposed method. “Most of the patients commented upon the fact that the sensation from the uterus would be different in quality, duration and locale, and, therefore, expressed some doubt as to the possibility of equating the two sensations in terms of intensity,” the authors wrote, though they noted that those concerns were not “borne out by experience,” and that the majority of the women cooperated in describing their pain without issue.
The experiment went like this: as the 13 women in the study labored, in between contractions the researchers would burn one of their hands with a thermal device the researchers had calibrated to deliver varying levels of intensity. The researchers had set the value of a dol as “approximately one-tenth the intensity of the maximal pain,” which they were hoping the experiment would help them establish. What they really needed was for the women to be able to compare not just the intensity of the two types of pain, but their qualities. Of course, as the labor progressed, the women were understandably less communicative than at the outset, and so the researchers made inferences about their pain experience by noting their behaviors, “such as—crying, complaining, sweating and degree of alertness and cooperation.” Not surprisingly (to women, anyway), the pain experienced by at least one of the women achieved the maximum value for the dol pain-measurement scale—a 10.5, what the researchers called “the most intense pain which can be experienced.”
These experiments in dolorimetry provided a lot of fascinating data about pain, and it scientifically confirmed what women had known for millennia: that childbirth can push beyond the perceived limits of the human pain threshold. It did not, however, provide medicine with the kind of objective measurement it needed in terms of pain assessment. As compelling as the dol studies were, they still relied on the patient’s willingness and ability to report their pain, which was inherently subjective.
Of the research that was done to try to establish a truly objective measure of pain throughout the twenty-first century, what most people are probably familiar with is the 0–10 pain scale. The concept seems straightforward enough: you ask patients where their pain is on a scale of 0–10. Zero is no pain, and 10 is the worst pain they can imagine. Presumably, when patients report something somewhere in the middle, they’re comparing their current pain to previous painful experiences. Women who have given birth might compare a present pain to that of childbirth: “Not as bad as late-stage labor.” Or, if a patient has previously broken a bone, he or she might say, “Well, it’s worse than the time I broke my leg.”
Since we all have varying degrees of tolerance for pain, and have equally varied experiences with different types of pain, it makes the scale feel kind of meaningless—especially when you consider that the person trying to ascertain how much pain the patient is in has his or her own experiences with pain that are thrown into the mix, too. A doctor trying to figure out how much pain a patient is in, when she says it’s “worse than a broken leg,” but “not as bad as childbirth,” is still only going to be able to guess what that means based on his or her own experience—and perceptions—of pain.
This is true for any human being who witnesses another human being’s pain. When I was in the fourth grade, my best friend, Hillary, went to lift the grate off the top of a fire pit in her backyard, not realizing it retained the heat of the smoldering coals beneath, and suffered severe burns to both of her hands, which required, to my 10-year-old eyes, an impressive amount of bandaging. I remember helping her write her classwork, turning the pages of her books in school, and watching as she winced whenever any pressure, even the lightest playground breeze, touched the raw, pink skin.
I knew she was in pain, but I couldn’t know exactly how she felt. I had experienced a few childhood injuries that were pretty bad—the screaming, crying, bleeding kind—and I imagined it probably felt like that. But I couldn’t know for sure what it felt like to be in her body, and I found that deeply disconcerting. She was my best friend, and I wanted to take her pain away. But how could I, when I didn’t understand it?
By looking back through emails, social media posts, and medical records, I can piece together what happened after I stepped out of my ill-fated shower that autumn day. I don’t remember exactly how I got from the bathroom back to the bedroom I shared with my roommate Rebecca. I don’t remember if the bongo drums were still beating beneath the loud swell of my heartbeat in my ears. I don’t remember whether the katydid flinched when I pushed my way back into the room, collapsing onto the bed. Nor do I remember how long I stayed there, curled up in the fetal position, before Rebecca woke up, shocked to find me there and not in class.
I do know that I didn’t miss an entire day, because that afternoon I took a picture of myself in class to send to Hillary back home. We’d been best friends since preschool, 20-some years of sisterhood that was wildly envied by most of the people who knew us. Since we were now living several states apart, we often sent daily photos, texts, or videos to one another, and at the very least were always connected through whatever metaphysical sisterly magic had bonded us as little girls.
In the photograph, I have my hair up in a messy bun. I’m wearing a big sweater and looking away from the camera, and I seem exhausted and miserable. The image triggers the next cascade of memories for me: I was in my biology lecture, which I hadn’t wanted to miss, but I couldn’t concentrate. I don’t think I managed to take any notes, and as soon as it ended, I limped back across campus and went back to bed, having accomplished nothing aside from wearing myself out. The pain had reduced itself to a dull, almost undulating ache, a perfect storm ascending inside of me.
I felt feverish, nauseated, and like I couldn’t keep my eyes open. I slept for the rest of the day and the better part of the next. I found it impossible to get comfortable: sitting up, lying down, fetal position, everything felt miserable. It felt like there was something inside of my body that was going to “pop” if I lay on my side or twisted my torso. I didn’t eat for days; it became hard to sleep. By the time my weekend shift at my work-study job rolled around, almost a week later, I had started to accept that something was seriously wrong. I remember showing up and putting the coffee on—and collapsing. For the first time in years, I cried. Inexhaustibly, snottily, hard. I told Rebecca I was sick and needed to go to the hospital, and her dark eyes regarded me with bewilderment. I don’t think I’d let on, until that moment, how bad I truly felt. Not even to myself.
If you’re wondering why I had waited about a week before going to the hospital, despite being quite obviously ill, the answer is a complicated one. There was the practical concern about cost, because I didn’t have decent health insurance. Many of my peers had benefited from the freshly minted Affordable Care Act, which allowed them to stay on their parents’ health insurance plans until they were 26. I had forfeited all that upon my emancipation at age 16, and I was extremely concerned about how I would pay for the cost of any care I received, not to mention any medications I might be prescribed. God forbid that I’d have to figure out how to pay for a hospital admission.
Another element of my reluctance to seek help was deeply rooted in my personal psychology, part of a complex belief system I hadn’t yet been able to shed. As a little girl, whenever I would get sick with some routine childhood illness, my mother implored me to “talk myself out of it.” She was exhausted from her own illness and its antecedent psychological torture, and she didn’t have the energy to take care of a sick kid.
She was particularly harsh and unfeeling toward me if I had a stomach upset of some kind. I can only assume that my throwing up was a highly triggering event for her, given her illness. If I approached her for comfort in those long, seemingly endless dark nights of my childhood ailments, she rejected me. I took her revulsion personally, as I think any child would, and vowed never to get sick again. I began to use all my mental fortitude to “talk myself out of it” whenever I took ill, so that life could resume as per usual—for Mum and me both. There were occasions, of course, when I couldn’t use mind over matter. When I inevitably did throw up, or have a fever, or get strep throat for the umpteenth time in a given year, I internalized those instances as personal failings.
“I was extremely concerned about how I would pay for the cost of any care I received, not to mention any medications I might be prescribed. God forbid that I’d have to figure out how to pay for a hospital admission.”
Yet another contributing factor was that the first time I had trusted a doctor, she had let me down. I know now that there are complexities to reporting suspected child abuse. I know that the suspicion must be high, that there must be proof. Given that I was hardly out of elementary school at the time, all I knew was that I was scared and hungry—and that white coats meant someone knew a hell of a lot and had power to make you better.
At some point as a child I’d developed an elevator pitch of my situation, trying to be ready for the oft-wished-for but never manifested opportunity when I would be alone with an adult who might be able to help me. I’ve never been a particularly succinct individual, though, so while my pitch was well articulated in my head, it never seemed to form as a cohesive statement. Instead it just sounded like a series of sighs and mumbles, along with the occasional throaty hack of nervous laughter.
The pediatrician asked my mother to leave the room when I was, if my memory serves, there for a routine immunization. I couldn’t have been more than 10 or 11. My mouth went dry and my heartbeat ached in my ears. I don’t know if I was old enough yet to have the words “Don’t fuck it up” in my lexicon, but I very much had the feeling. As predicted, I didn’t stay cool, and it all came tumbling, dripping, cascading out of me. A truth purge.
The doctor’s wide-eyed look, which I construed as disbelief, was quickly replaced by a slap of fear. She wasn’t looking at me agog because of what I’d told her, but because my mother (who had been listening outside the door) had burst into the room. She seethed as she yanked me from the exam table and dragged me out into the hallway. The pediatrician followed us into the hall, but no farther, and I craned my neck to look back. I implored her with my eyes to do something. But she didn’t. She only stared at me with an expression of gaunt helplessness.
My mother flung me into the car, and I awaited sentencing for my transgression with the sincere hope that it would be something akin to her driving the car off the bridge into the frigid water below, killing us both. But she kept her anger in her jaw, clenched like a bear trap, until she could get home to release it.
I swallowed mine.
A decade or so later, before any doctor doubted my pain, I doubted it myself, because that’s what my mother had taught me to do. I was 19 years old and didn’t want to be sick. It wasn’t even a question of want—I simply couldn’t be sick. I had to go to class. I was on a massive scholarship that was contingent on my academic success. I had friends to see, dances to do, a spectacular city within reach. I had so much life to live, and for the first time ever I was completely free of all that had hurt me and stolen my joy. That morning in the bathroom, as pain ripped through me like a bullet and I saw my mother’s face on my own, I tried harder than ever to talk myself out of being sick.
By the time I ended up in the hospital, I was inconsolable. Did I not want to be at Sarah Lawrence badly enough? Was I really so weak-willed and pathetic that I was getting worked up over a silly, stupid little ailment? I was becoming delirious from not eating, and I hadn’t been drinking much of anything, either. The pain in my belly had become all-consuming.
I sat slumped in a chair in the intake room. At first the nurse in triage seemed doubtful of my pain, because I was so subdued from all the crying that I just stared, glassy-eyed, at the wall. As she took my blood pressure, she seemed dubious. I had reported that the reason for my visit was a frightening amount of abdominal pain, and I guess she expected me to be screaming and rolling around on the floor. But the pain had exhausted me to the point of surrender. When I was taken back to a curtained cubicle, I dragged my book bag with me. Despite the fact that I could hardly keep my eyes open and would occasionally burst into tears, I was consumed by the reality that the following week I had a test to pass in my Russian class. Russian, as it turned out, was a difficult language to learn. Every second of studying counted, and since I’d been sick all week, I’d missed class as well as my tutoring session. I frantically tried to conjugate verbs, partially out of fear, but also as a method of distraction.
Aside from that morning, when I’d woken up and taken the notably apocalyptic shower, the only other time I’d experienced something that required me to go to the hospital in Bronxville had occurred about six months earlier, when a dance injury had ended in an ankle splint. That visit had been uneventful, relatively speaking. It wasn’t until I landed there in a weepy haze of terror that I actually took stock of the place. The emergency room was considerably more attractive than it needed to be. I was used to small-town hospitals that were a little on the dingy side and devoid of aesthetic frills.
Though it was a rather handsome hospital, once I got into the nurse’s station to have my vitals taken, I was no longer paying attention to the decor. That was when they first asked me to rate my pain on a scale of 1–10. It was hardly my first encounter with the traditional pain scale, but something about that moment—and the many that would follow in the next five years—struck me as being somehow illogical.
“The pain scale doesn’t call on doctors to empathize with a patient, and supposedly, that makes it a good clinical tool. But even if it’s a good tool for clinicians, it’s not a good tool for patients.”
Considering how sick I was, it wasn’t the time to get hung up on semantics, yet I was—to the point of being almost indignant. It wasn’t the nurse’s fault; nor would it be the fault of the doctor who would ask me again a few hours later. And yet I was right to question the efficacy of a numerical pain scale that attempted to quantify an entirely subjective experience.
Doctors in emergency rooms don’t have much investment in a patient’s well-being. First of all, they don’t have the time. Second, they have to maintain some professional detachment, or else they wouldn’t make it through a single shift. The pain scale doesn’t call on them to empathize with a patient, by attempting to understand their experience of pain, and supposedly, that makes it a good clinical tool. But even if it’s a good tool for clinicians, it’s not a good tool for patients.
The pain scale has many limitations. It’s only concerned with the intensity of the pain, not the duration, for example, and it doesn’t leave room for descriptions that provide essential information, such as “sharp,” “dull,” or “stabbing.” These adjectives, though not reflected by the 1–10 labels, can actually be very helpful in creating a diagnostic portrait, because certain types of injury or infection can inflict certain types of pain.
In June 2005, Harper’s ran a beautiful piece about the pain scale exploring its similarities to wind: “Wind, like pain, is difficult to capture,” wrote the author, Eula Biss. “The poor windsock is always striving, and always falling short.” Biss then eloquently explained that sailors eventually came up with a system to describe wind that consisted not just of a standardized numerical scale, but also names and categories for wind according to how it felt. It’s called the Beaufort scale: “A force 2 wind on the Beaufort scale, for example, is a ‘Light Breeze’ moving between four and seven miles per hour,” Biss wrote. “On land, it is specified as ‘wind felt on face; leaves rustle; ordinary vanes moved by wind.’”
How would we describe a 2 on the pain scale? The twinge of a mosquito bite? An itch you mistakenly scratched with a too-sharp fingernail? Describing a subtle pain is generally more difficult than describing an all-consuming one. On the other end of that spectrum is the 10: the worst pain you can imagine.
The problem has always intrigued me, because I like to think I’m a fairly creative person. I’m sure I could imagine some pretty extreme situations in which I would feel immense pain. I have questions, though: Is a 10 meant to be a pain that would kill me? If that’s the case, then how do you really measure the difference between a 9 and a 10? Are we physiologically capable of surviving a sustained 6 for a longer time than we could endure a brief 8?
There is another commonly used scale. It has cartoon faces wearing expressions that range from Kurt Vonnegut’s “Everything is beautiful and nothing hurts!” to Leslie Knope’s “Everything hurts and I’m dying.” It was designed for children, and yet it’s in about every doctor’s office I’ve ever been in. None of which, over the past five years, have been pediatrician’s offices.
But though it might be simpler, it’s not necessarily any better than the numerical scale, at least in part because it confuses its intended audience: children are arguably even less able to separate physical from emotional pain than adults. In her Harper’s piece, Biss explains that if you show the cartoon-face scale to a child who is scared, but not in pain, the child may still identify with the crying-pain face—the child misses the subtlety of the questions being asked.
But it’s not only children who conflate physical and emotional pain. When I stared at that pain scale in the triage room, crying and scared myself, I certainly didn’t identify with the faces that were just like “meh” about their pain. I was in pain, I was scared, and I was crying. Those three simultaneous realities didn’t necessarily feel independent of each other. Maybe kids have the right idea, though: If my pain is enough to make me afraid, shouldn’t that stand to bump it up from, say, an I’mcoping-okay 4 to an I’m-really-not-functioning 5?
Later, writhing on a scratchy gurney, I perseverated on my answers to the pain-scale question because the nurse had seemed suspicious of me. Had I failed the test? Given the wrong answer? Should I have rounded down? Was my mother right to instill in me a tendency to play down my pain so that I wouldn’t inconvenience other people? Was that what the nurses and doctors expected me to do? Was that what I had expected myself to do?
It felt strange to consider, as I lay there gray-faced looking up at a slightly less gray ceiling, that I should have lied. Yet I felt guilty, too, because the more I thought about it, the more I second-guessed my interpretation of a 6. My mind spun, trying to reason out how I’d arrived at an answer. The pain was bad enough that I couldn’t ignore it, which made it definitely higher than a 4 or 5. It had been more painful a week ago, back when it had started—but then again, maybe I’d just grown accustomed to it. I couldn’t tell.
What did the nurse think a 6 was? What would the doctor think that a 6 should be? Tears of frustration came. What was the point of this pain scale if they weren’t going to believe me anyway?
By the time the doctor came in to examine me, I was even more exhausted than when I’d arrived. I was aware that I was still crying, and worried that while crying I couldn’t possibly present my situation rationally. The doctor seemed completely unsurprised by my distress. I was a Sarah Lawrence girl—historically what you might call “bright and wound tight.” He assumed that my issue was of a sexual nature, and it was only this assumption that managed to rouse me from my stupor.
Little did he know at that point that it couldn’t possibly have had anything whatsoever to do with sex, because I was a virgin—a fact that I was somewhat embarrassed to admit. Still, I didn’t want there to be any confusion, so I was firm in my assertion that he’d better come up with another diagnosis, because unless I was a modern-day biblical parable, there was no way I was pregnant. Nor was my body consumed by syphilis or any other sexually transmitted disease.
I’ll admit that at 19, I didn’t know much about sex, but there was one thing I did know: I wasn’t having any.
He also seemed uncomfortable, which made me feel worse. I was suddenly flooded by memories of being warned not to be “difficult” as a child. I stopped talking after several futile attempts to explain, deciding maybe it would be easier if I didn’t say anything at all. I was discharged without so much as a CT scan, prescribed a hefty dose of antibiotics, and encouraged to drink my weight in cranberry juice.
I spent the following week in bed, alternately crying and dry-heaving. I missed all of my classes (including the one where my fellow students took that Russian test). Instead, I made my way through Barbra Streisand’s entire filmography.
By the time the weekend came, having not had anything to eat but saltines and cranberry juice, I went to the hospital a second time. My pain remained unchanged, and the antibiotics had done little, aside from giving me diarrhea (which seemed entirely unfair, given how weak I had been to begin with). I saw a different doctor the second time around. He, unlike the doctor before him, didn’t balk at my tears, which were now a constant undercurrent rather than an occasional punctuation in the conversation. I’d started crying on Wednesday or so, and here it was Saturday and I hadn’t stopped.
“When did you realize it was this bad?” the doctor asked me, his eyes kind but also looking back and forth rapidly between me and Rebecca, who had come along. I think she was as horrified by the scene as he was, if not more so.
“All I’ve done for a week is watch Barbra Streisand movies,” I sobbed, not knowing what else to say. It was the truth, after all. I hadn’t slept or eaten or gone to class—I’d been curled up in my bed with a pillow between my knees, watching The Mirror Has Two Faces, and wishing for death.
“That is serious,” the doctor said, making a note in his chart. Having looked at my medical records since, I assure you that he did not write down, “Prince of Tides–induced sobbing” under my problem list. He just noted that I was clearly very upset, Babs notwithstanding. Finally, I had the gamut of imaging tests, plus another liter or two of IV fluids, and then I fell into an exhausted half-sleep. I was motionless beneath the covers, my eyes tightly closed, as though I were rehearsing for my own death, when I felt the doctor’s presence in the room. He sat down at the edge of the gurney, near my feet. It reminded me of how sometimes when I was a child, my father used to come into my bedroom after I’d gone to bed, not to tuck me in, per se, but to sit at the foot of the bed for a few minutes. Sometimes I would hear him making his way down the hallway, and I’d try to position my feet so that he’d end up sitting on them. He wouldn’t hug me, he wouldn’t kiss me good night. But for a few seconds I would feel the weight of him sitting on my feet, and I’d know he was real.
“I hadn’t slept or eaten or gone to class—I’d been curled up in my bed with a pillow between my knees, watching The Mirror Has Two Faces, and wishing for death.”
Even if I hadn’t been too exhausted to move, I wouldn’t have been so brazen as to stick my feet under the butt of an ER doctor I’d only just met. I felt myself begin to whimper again, the vestiges of my week-long cry-fest. He explained, first, that he had a daughter my age, and since he’d ascertained that I was only in New York for college, he wondered aloud if it would help to call my family back home. I told him no, there wasn’t anyone to call. I didn’t have the energy to explain the entire story to him, so I spat out the words “emancipated minor” and let him interpret it however he wanted. He did tense up a bit, as though he expected me to morph into some kind of shank-carrying delinquent who was there to steal drugs and wreak havoc, like a character in an Emmy-winning episode of ER.
He went on to explain that he didn’t know what the problem was, but that he thought I could have an ovarian cyst, something that was very much a college-age-girl-thing. As it stood, maybe he’d seen it on the scan, or maybe he hadn’t. He was just an ER doctor, not a gynecologist, so he wanted me to follow up with one of the latter. Beyond that, he just shrugged.
Bright and wound tight, Sarah Lawrence girls were. That was the enduring reason, the medical consensus, for my strife. I’d chosen the school for its focus on writing, sure—but not so that I could become my generation’s answer to Sylvia Plath, fatal neuroses included.
I don’t remember getting back to my dorm from the hospital that second time. I don’t remember anything at all until the middle of the following week, when I had to go to the dean’s office to discuss “my future.” I hadn’t been to class for several days, though I kept insisting that I would “surely feel better tomorrow,” and “wouldn’t have to drop the class, no, of course not.”
As I sat shaking in the office, all I heard was “medical leave of absence” and “go home.” I swallowed, my mouth and throat so dry that I was afraid that if I spoke, my tongue would shatter like glass.
“This is my home,” I offered, and it sounded pathetic, but it was the truth. I didn’t have a home to go back to. I hadn’t had one at all until I came to Sarah Lawrence. While the dean was understanding about my situation, her hands were tied. I was there on a full scholarship that was contingent on academic performance. I had to take a leave of absence to heal. Clearly I needed to go somewhere to rest and recuperate, to try to get to the bottom of what was making me sick. I’d have to figure out where to do that. Preferably within the next week.
The problem was, I had not lived at home with my parents for six years. At age 12, I had moved in with my grandmother. I was legally emancipated at 16, and I’d lived in several places in the two years that had elapsed between that day and the day I’d left for New York. There were a number of people who “looked out for me,” but that was quite different from taking me in, were I to show up on their doorstep sick and alone. The last address where I had received mail was at the home of a woman named Rose-Leigh, who had taught at my high school and was an accomplished scientist. We had spent many late-summer afternoons identifying flora at her kitchen table over tea. Rose-Leigh had lost her youngest child some years before, and as a result of that unfathomable loss she always looked, to me, how grief felt. Although she was remarkably kind to me, and truly brilliant, what I remember most about her is the gray, almost woolen heaviness of her spirit.
Weighing my options, or lack thereof, I plodded unsteadily across the street and up the walkway to the office of my beloved psychology professor, Elizabeth. Her expression softened as she listened to my attempt to explain that I was sick and no one knew why, but that I wanted to be at Sarah Lawrence more than anything. My home was here, my heart was here, and I didn’t want all my work to go to waste. I would be back in the spring, I vowed (or implored) and blubbered on as though, if I just sat there in her office long enough, and talked and talked and talked and never stopped, I wouldn’t have to leave after all. “Pausing isn’t stopping,” she told me, her earnest parting wisdom.
I said goodbye to all my professors, and every single one of them said they looked forward to seeing me back in the spring. I never saw any of them again.
From Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain. Used with permission of Nation Books. Copyright © 2018 by Abby Norman.