PCOS and Queerness: A Bodily Haunting

A Note Before We Begin: Throughout this piece, I use the terms woman, boy, girl, and man. I use the terms masculinizing and male. I mention dysphoria and the like. This is not a comprehensive piece of writing, nor is it particularly scientific. I do not believe in the traditional gender binary nor seek to hold it up. I am simply writing towards what society at large is working with. Also, the more we learn about “biological sex” the more we learn that these categories are not as watertight as first assumed. I hope you will take care as you read and engage with me after, especially if you, too, have experienced PCOS and have complicated feelings about it.

My body is, in its way, a haunted house. I live here, I occupy this place, I am this place, and yet I am afraid, too. Those who have explored it, thrill-seekers, might just have had something follow them home, close on their heels. I warned them, of course, and yet. Wait. Was that a shadow, beloved, or just your imagination?

In another kind of essay, I write: “The truth: I never feel more like a boy than when I am with Felix.”

I am certainly not a girl, but perhaps a woman. I am certainly not a man, but perhaps a boy. Perhaps a brother.

Perhaps nothing at all.

Some of the symptoms of Polycystic Ovary Syndrome (PCOS) are, roughly, as follows: irregular periods, excess body hair (hirsutism), weight gain concentrated around the abdomen, acne or oily skin, male-pattern baldness or hair that thins, skin tags, acanthosis nigricans, which is a thick, dark skin on the neck, groin, armpits, and the like.

Funnily enough, one does not have to have cysts, or even concerning ovaries, to be diagnosed with PCOS. What is in a name, anyhow?

The JCPenney dressing room, middle school aged. All of my friends have crushes and I do not think myself capable of it. The lights are flickering. Someone is howling, keening. My mother brings me a bigger size from the women’s section, business casual, when everyone else I know wears juniors in fun colors. Don’t look in the mirror, a voice says. The ice cold fingers scraping down my spine nearly feel like a caress.

Despite being one of, if not the, most common endocrine disorder in those classified as women by the medical system, there is barely any research on PCOS. Instead, it is made into a problem that is caused by being too fat by gluttony or choice, instead of a chronic illness, a chronic disorder, that affects many parts and systems of the body, not just hormones.

What I know for sure: They stuck me on birth control at 12 years old and told me to come back when I wanted to get pregnant.

I have recounted before the way it felt for me as a child to be mocked and bullied for my body hair, for my weight, for my ugliness. Perhaps I have not said the way it carried into my adulthood, the way I Nair-ed my arm hair off (for the first and last time) in what can only be described as a hypomanic state onset by grief and the way my bowels continually betrayed me, while my college roommate Jen watched in confusion. The way I could feel the stares during the times I was too depressed to shave at the thick line of hair exposed by the bottom of my jeans, the way the hair spread across my feet and onto my toes. The way it took me an hour and half to prepare myself for a mating ritual, the way I showed my friend exactly how I was going to strip so that she could tell me if I was missing anything, the way I threw up on the way from nerves and the way my brain told me, convinced me, that I was pathetic and disgusting and overly mammal. The way I went to read at the library instead, shining, stinging pink legs on display.

PCOS presents a bundle of symptoms that, for many cis women, presents an experience with dysphoria. How is this my body? they might think. How do I make myself palatable to myself?

Colonization has made it almost impossible to trace a line of research on a “third gender,” for the Indigenous cultures I am a part of, at least. A few weeks ago, I was at a conference with they/them and “any pronouns” scrawled on my nametag. I am an old spirit, much older than this body is. My public facing life, at least in an employee sense, is a shadow one.

Even now, I cannot call myself Two-Spirit outwardly without shame. Though to be fair, I can do almost nothing outwardly without shame.

The Greek stem word for andr- means “man.” This means that an androgen is a hormone (natural or “synthetic”) that is a masculinizing hormone, or a hormone that regulates something “male.”

An age old problem: I love seeing body hair on other people. It is not tied up in sexuality or sensuality, for me at least, but it feels affirming. It feels grounding. Okay, then. Why can’t you accept it on yourself then, coward?

For others, those who do not fall within the traditional binary, I imagine (and too have felt) that the “masculinizing” effects of excess androgens provide a bit of euphoria. I remember cracking open (for the first time and not the last) The Complete Dykes to Watch Out For by Allison Bechdel. I was cat-sitting for S., a glamorous third year in my graduate program, and it was an impossibly hot and humid Alabama day. The air in her bathroom was so cool it was almost powdery, and so I sat on the edge of her bathtub and grabbed the tome from where it sat in a basket next to her toilet. I cracked it open onto a random page near the beginning, where our trusty Mo prepares for a date by taking the slightest millimeter off her long and straight armpit hair.

Even through the 200mg haze of Sertraline, something clicked inside of me.

Later that week, someone says: I let him go, but he still haunts me. I can’t see him but I know. He’s not far now, I’m sure, but if you had come and been my friend earlier, I am sure you would have seen him. I know what you are. It is not said unkindly so I smile, the tendon inside my cheek twitching. I make no eye contact with her ghost, I refuse to look, but stays in my periphery anyway.

The Gnostics believe that we all have a piece of God inside of us, however small.

This piece is from a world immaterial, aside or above ours. It came to us from the Fall, where things burst apart and reoriented themselves into new matter. These bodies we wear are prone to decay, to rot, and so they are evil in themselves.

Only when we are aware of this are we able to shed our ignorance.

Stupid girl.

I was raised in a strict Baptist, then Southern Baptist manner. Within the confines of the Church, there was a specific way to be a woman, and you were not allowed to forget it, no matter where your sinful thoughts led you to stray, at least internally. I wanted to want to be silky and smooth. I wanted to want to wear a dress. I wanted to want to have a husband, though my dark fantasy was if I was forced to marry, I hoped I would be so unappealing to him that he would cheat on me, giving me appropriate means to divorce. Or, of course, one of us would die early.

The first time I thought, God must give me the strength to live this life I am meant to live this life that He wants me to live the life that will make my mother happy for me to live it must have been near the time I received salvation and been baptized.

So six years old. It was Easter, and I wore a white dress and carried a purse in the shape of a lamb, which I still covet.

People ask, on Google: Can PCOS go away? Does PCOS get worse over time? Where art thou Father, and why hast thou forsaken me?

I describe my career (that is, the one that is not writing this) as a [REDACTED] drone. This career has allowed me insurance, and to go to a clinic that is not the Indian Clinic of my youth. My new doctor is nice and extremely religious. In a way, I am more comfortable with this than I would be if I were allowed to be one-hundred-percent honest about my “lifestyle.” Nonetheless, she is thorough and sweet. She asks me, before she prescribes a pill that will lessen the cortisol and androgens and stress/inflammation hormones and receptors coursing madly through me, if I am sure I am not doing this for someone, some man or boyfriend, that wants me to look like a Barbie.

I can’t help but laugh. No, no, I say. Of this one thing, out of many, I am certain.

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Autumn Fourkiller

Autumn Fourkiller is a writer and mystic from the “Early Death Capital of the World.” She is currently at work on a novel about Indigeneity, the Olympics, and climate change. A 2022 Ann Friedman Weekly Fellow, her work can be found in Atlas Obscura, Majuscule, Longreads, and elsewhere. You can follow her newsletter, Dream Interpretation for Dummies, on Substack.

Autumn has written 8 articles for us.

3 Comments

  1. Oh my god, did we see the same shitty NP? I got told the baby line verbatim, absolutely no questions on if I even cared about future fertility, let alone how I felt. It’s been years fighting tooth and nail to get my own quality life taken seriously by medical professionals. At the worst of it my body felt so foreign and disconnected from me, like I didn’t even know it, it’s a really tough road to walk. Thank you for sharing your perspective.

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