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Book excerpt: "Nobody Needs to Know," an intersex individual's memoir

Topple Books & Little A

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According to statistics cited by the U.N., between .05 and 1.7 percent of the world's population is intersex, defined as having external or internal sexual organs that are not clearly male or female. In the memoir "Nobody Needs to Know" (published by Topple Books & Little A), Pidgeon Pagonis writes of being born looking female on the outside, but also with testes and XY chromosomes.

Read the excerpt below, and don't miss Erin Moriarty's interview with Pidgeon Pagonis on "CBS News Sunday Morning" October 29!

"Nobody Needs to Know" by Pidgeon Pagonis

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And then the moment came when my life's compass shattered, when a portal opened up in the multiverse.

I was sitting in the back of a cramped and dimly lit classroom at DePaul University. My professor, Jessica, a tall, gentle, pale-skinned woman, paced in front of the whiteboard in her pantsuit and her Ann Taylor pumps. Just before we were about to break, she put up a slide that read "Androgen Insensitivity Syndrome."

Say it five times fast. Go ahead.

I'll wait.

Or you can just call it AIS.

The class was Psychology of Women 300. One of my high school teachers—Ms. Bocio—had introduced me to theories of psychology and feminism in a fun and creative way. So when I saw Jessica's course on the list of available classes, it leaped out. After all, I identified as a woman and wanted to know more about who I was and how the psychology of my mind worked.

We met every Tuesday and Thursday for an hour. I wasn't supposed to be there. It was my freshman year, and I had applied without quite knowing what the "300" meant. Turns out, it's kind of an important detail—the 300-level psych courses are usually reserved for upper-level students with years of psychology under their belts. How was I supposed to know? There was one other freshman in the class, too, and they were just as clueless as I was.

"How old are you, anyway?" my adviser asked, looking at a list of courses I'd already signed up for.

"Eighteen?" I answered, like I was unsure.

"Jen, for Pete's sake, this class isn't usually taken by freshmen!" And yet there I was. I was wearing my Ugg boots, a black North Face fleece, and this sparkly purple eyeshadow I'd stolen from Target. (It was 2005; what do you expect?) I looked the part of a bubbly first-year student in a small classroom of twenty, and the lecture was absolutely decimating my reality.

Given the circumstances, however, I thought I was having a rather polite nervous breakdown. The girl to my left had her head down, headphones blasting, listening to Evanescence, completely unaware my life had just irrevocably changed.

Now, AIS—like all intersex variations—is super complex, but I'll try to give you the lowdown the best I can. Buckle in!

For the first six weeks of development in the womb, embryos are sexually indifferent. Regardless of sex chromosomes—the twenty-third pair responsible for a person's sex characteristics—their gonads, internal reproductive tracts, and external genitalia are identical. After week six, embryos typically begin to sexually differentiate, starting first with the gonads. All gonads can form into either testes or ovaries, and that development is dictated by sex chromosomes, which hold the blueprints, so to speak. If the chromosomal sex is XY, then usually the gonads will become testes, and their internal and external genitalia will masculinize—and vice versa if the chromosomal sex is XX.

I said typically and usually while describing this process because, as I found out that day in my class, it's not always what happens. Sometimes an embryo rebels. Enter androgen insensitivity syndrome, or AIS.

When a person is born with AIS, their sex chromosomes are XY—the typical chromosomes for babies who are assigned male at birth. But AIS infants are usually assigned female at birth because their external genitalia appear feminine. However, a pair of undescended testes (instead of ovaries) and a blind-ending vagina that doesn't lead to a cervix or uterus are present. The AIS body is able to convert androgens—hormones, such as testosterone, that are responsible for the development of male sex characteristics—into estrogens, or hormones that are responsible for the development of female sex characteristics. This magic trick of sorts is partially able to occur because androgens, as it turns out, are precursors to estrogens.

So let's say you're an AIS baby and your little undescended baby balls start making testosterone, right? A person with AIS would be, like, Nah, I'm good. Their body would not respond to the testosterone. Instead, it would say, Abracadabra, and—poof!—it would convert the testosterone into estrogen. And since an AIS person's genitalia started in a sex-neutral state, like all embryos, and their body isn't responding to androgens, instead converting them to estrogens, which it can respond to, an XY AIS infant is often born looking virtually indistinguishable from XX female infants.

To make matters a bit more complicated, AIS is an umbrella category for two subdiagnoses: complete androgen insensitivity (CAIS) and partial androgen insensitivity (PAIS). PAIS is just like CAIS, except there is only a partial insensitivity to androgens, and thus, PAIS babies usually come out of the womb with genitalia that has more ambiguity than their CAIS counterparts. The PAIS embryo almost masculinizes but doesn't quite do so completely, so the infant is often born with genitalia that is visibly neither completely feminine nor completely masculine in appearance. Genital sex traits like swollen labia, partially fused labia, bifurcated scrotums, enlarged clitorises, and/or different degrees of hypospadias—a term that describes when the urethra doesn't open at the tip of a penis/phallus—can all be apparent in PAIS individuals. Because PAIS traits aren't hidden from plain view like those of CAIS, which often goes undiagnosed for years, an individual with PAIS is usually diagnosed at birth or very soon after.

Now that you have a primer in AIS and sexual dimorphism in humans, I'd like to go back to when I was eighteen years old and sitting in my women's psych class, moments before I cracked for the first time.

The slide listed other facts about people with AIS too—facts that curiously seemed to describe me:

. . . can't have children . . . Check.

. . . unable to have a period . . . Check.

These were two things I had known about myself since I was five years old. But I'd been told it was because I was born with cancer in my ovaries—not because I had AIS.

I was told the doctors had performed a dangerous ovary removal surgery on me before I was a year old to save my life. I was told the surgery they performed on me at ten was to keep my bladder functioning properly. And the little add-on vaginal enlargement procedure was nothing special, just something to make me more comfortable once I was married. They said it was the only way I could have sex with my future husband.

Then my professor clicked to a new slide:

"Women with AIS have XY chromosomes," she said.

Wait a minute, I thought. XY is the chromosome makeup for boys. That didn't make any sense, because I was a girl. My birth certificate said so. I was still in a relationship with my boyfriend, coming up on five years. I had played for a traveling girls' softball team and had graduated from an all-girls Catholic high school. If I had XY chromosomes, there's no way those Catholic nuns would have let me in.

But there were those two letters staring back at me.


I felt my chest begin to tighten. It seemed like I was breathing through a pinched straw, like I was the only one in the classroom as everyone else faded away. I was in one of those weird-ass surrealist Dalí paintings, where the clocks start to do whatever they're doing. I couldn't breathe. I couldn't scream.

It was all a lie? Everyone had been lying to me my entire life?

From "NOBODY NEEDS TO KNOW" by  Pidgeon Pagonis. Used with permission of the publisher, TOPPLE Books, Little A. Copyright © 2023 by Pidgeon Pagonis. 

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"Nobody Needs to Know" by Pidgeon Pagonis

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Living an intersex life 08:38
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