In an exclusive excerpt from her brand-new book, Ask Me About My Uterus, due out today, Abby Norman, 26, gives readers a harrowing first-person account of her suffering from endometriosis throughout college and her eventual journey to diagnosis.
It all started when I took what I now consider to be the worst shower of my life.
I was a sophomore at Sarah Lawrence College, living with my roommate Rebecca in a small house on campus; it was entirely unremarkable, except for the giant katydid that had spent weeks living above our bedroom door.
I had rolled out of bed on that otherwise unremarkable morning having had no premonitions of terror in my sleep. I grabbed my towel and shower caddy, opened the door, and glanced at that freakish katydid as I padded down the hall to the bathroom. I remember looking out the small window that faced campus as I undressed, the hour early enough that the world was quiet and still. The leaves had begun to change, but fall in New York could not rival the fire trees of where I had grown up in Maine.
Although I had no intention of living in Maine ever again—having arrived in New York full-stop at eighteen, as many people do—I did sometimes miss its breathtaking natural beauty. New York City was stunning, too, but in a very different way. I’d never been in the shadows of such tall buildings before, and the pulse of the city thrummed in me long after I’d boarded the Metro-North back to Bronxville. But I’d grown up a stone’s throw from the ocean, in a town whose maritime history was inextricably linked with my own.
Miles away, I stuck my hand in the shower, letting the warm water wake up my fingers. Down the hall, bongo drums began to thump, filling me with a sense of prescient nostalgia. As I stepped into the tub and pulled the curtain closed, I wondered, half asleep, if I was in the process of solidifying a memory.
That’s when it happened, and it was as sudden as a thunderclap. A stabbing pain in my middle, as though I were on the receiving end of an unseen assailant’s invisible knife.
I was immediately jolted awake, eyes wide and stinging. I pressed a hand against my side, trying to determine exactly where it hurt. It felt like it was everywhere and nowhere all at once. It was almost as though something had snapped deep inside me. I had never experienced anything like it. I stood very still and closed my eyes, trying to drown out the bongo drums long enough to listen to my body.
The pain became more of an ache, which spread through my lower belly and pelvis, then snaked around my flank toward my back. I began to grow nauseated and dizzy. I fumbled to turn off the shower, tripping as I tried to step over the lip of the tub. My legs were shaking so much I could barely walk. From the floor I held my breath, waiting for the room to right itself so I could stand. I retched as I crawled across the floor, finally managing to pull myself up to the sink.
I wiped the fogged-up mirror and cringed at my reflection: bloodless skin and dark, wide eyes. I recoiled at the haunting image of my mother staring back at me.
To say I hadn’t thought of my mother in years would be a lie, but I had not seen her so vividly for quite some time. The last place I’d wanted to see her was in the mirror, the reflection of my own face.
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 twenty-six. I had forfeited all that upon my emancipation at age sixteen, 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.
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.”
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.
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.
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 ten or eleven. 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.
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 nineteen 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.
Editor's note: Abby Norman will be speaking at EndoFound's Patient Day in NYC on March 18th. We will also have copies of her book for purchasing and signing! You can register for the free event here.