I'm Neither Male Nor Female: Growing Up Intersex
Congratulations, society, we've come a long way from the halcyon days of 2012, when being transgender was considered a mental illness. We have at least one popular TV show about a transgender person and even a prominent transgender Republican. North Carolina's HB 2 is proof that transgender rights have a long way to go, but progress has been made. Yet one group of people have been left out of the most recent conversations on gender: the intersex -- people who are biologically neither male nor female. Yes, it's exactly as complicated as it sounds. To clear up any confusion, we spoke to Emily, CJ, and Allison, who are all different kinds of intersex. Wait ... there are different kinds?
Yes, There Are So Many Different Ways To Be Partially Male Or Female
When you think of someone neither physically male nor female, your mind probably goes to the hermaphrodite of Greek mythology and porn fame (they so often go together). It goes way beyond just having one set of each, though. Get a group of intersex people together and it's unlikely to find any two who are the same. Many intersex conditions, such as Swyer syndrome, are the result of genes interacting wackily with each other, like the romantic leads in an indie rom-com. Emily has this condition.
"This means that I have XY chromosomes," she says. "However, the SRY gene or one of the other testes-determining regions on the Y chromosome is nonfunctional, so when I was a fetus, my proto-gonads -- the structures that become ovaries in typical women and testes in typical men -- didn't become testes. They just stayed proto-gonads. Now, the differentiation of the proto-gonads is the first step in the masculinization process. The next step should be that the testes release testosterone and other androgens into the fetus' body and cause it to develop typically male structures. When that doesn't happen, however, the 'default' development is female. So I developed female physical structures, aside from my undifferentiated proto-gonads, and I was born looking physically female."
Spoiler: None of this is going to be as cut and dried as looks.
Others have no discernible cause, like MRKH syndrome, which CJ says "is where a child born female is born without a womb," among other things, while still others are the result of your genes and your hormones violently disagreeing with each other, as is the case with congenital adrenal hyperplasia, the condition Allison has.
"Because of something to do with the adrenal gland, I make far too many androgens, so what it comes down to is I have full female anatomy but I cannot produce estrogen and only produce androgens and testosterone," they explain. "The overproduction of androgens and testosterone gave me what doctors refer to as 'ambiguous genitalia.' In my case, because I didn't have adequate estrogen production in puberty, my vagina is basically the vagina of a prepubescent girl. It's very small and not very elastic, and my clitoris is very large, which is referred to as virilization."
Allison says, "There's not a lot of research on CAH," so there are parts of their body that still confuse them. "I did develop breasts during puberty, rather large ones, and I'm not sure exactly why," they say. It's a mixed blessing, to be sure -- of their superhuman clitoris, Allison jokes: "No one can ever use the excuse that they can't find it!"
Sex And Gender Are Way More Complicated Than You Think (Even If You Think They're Complicated)
Did you notice that we're using the typically plural pronoun "they" referring to a singular individual? We hear your cries of agony, grammar Nazis, but there's a reason for that. Let Emily explain:
"Katrina Karkazis (a medical anthropologist who studies intersex people, among other things) describes sex, which societally we think of as being an either-or proposition, as having five components: chromosomal sex, gonadal sex, primary sex characteristics, sex hormones, and secondary sex characteristics," she says.
Yet another reason those two stick people on that sign should be rendered irrelevant.
Well, Emily has a different answer for each of those questions: "Chromosomally, I'm male. In terms of primary sex characteristics, I'm female. My gonadal sex is indeterminate, and my sex hormones and secondary sex characteristics would also be indeterminate (because they're determined by the gonads) if I didn't take artificial hormone replacement therapy."
So, if you ascribe to a pretty strict gender binary, as most Western people do, riddle us this: What the hell is Emily? Even she couldn't have told you at one point. "I'd heard so many people, whether or not they knew about my condition, expressing the idea that infertile women are somehow broken or not completely women," she says. "By the time I got to college, it had really started to bother me, so I sort of just said, 'Fine -- if my womanhood is invalid, then I'm just going to be something completely different, my own thing!' I kind of didn't even mean it at first, which sounds horrible -- but eventually I realized how stifled I'd felt while living as a woman."
Funny how a completely different hormonal makeup might do that to a person.
While most intersex people identify as one or the other (mostly as women, in Emily's experience, and even she uses feminine pronouns), it's a pretty weird coincidence that everyone we spoke to identifies as some brand of non-binary. That is, neither male nor female, a distinction (non-distinction?) that is going to have to wait for another article, because this is complicated enough.
CJ identifies as "gender fluid, which means that the person identifies as a vibrant mixture of male and female and their gender can be fluid and change over time or at certain points. Some days I feel more feminine, and some days I feel more tomboyish, but mostly I feel a complete mix of male and female."
Allison identifies as genderqueer and also as a lesbian, possibly just to mess with us. "But usually I use 'intersex,' because that's my sex." The first time they heard the term "intersex," in fact, was in an LGBTQ context. "I was running a queer group and someone was giving a presentation on intersex, and I was like, 'Well, that seems like something the queer group should be a part of.' And they said, 'One of the most common types of intersex is CAH.' And I was just like, 'Whoa, that makes so much sense,'" Allison says. "Finding out I was actually physically intersex was like a weird validation of all the gender thoughts I'd had throughout my whole life."
As if college wasn't a confusing enough time on its own.
An Intersex Person May Not Even Know Anything Is Unusual For Decades
It's not uncommon for an intersex person to not know they're intersex until they hit puberty, when hair starts to grow in places it shouldn't or things that are supposed to drop, don't. Allison was "fortunate" enough to find out earlier than most, but only because they hit puberty at 6 years old. On the plus side, their parents had an easy trump card in every game of school parking lot one-upmanship. "Oh, your daughter can spell her name? That's nice. Can she grow a ZZ Top beard?"
Though it does get a little awkward when people start shouting requests for "Sharp Dressed Man" at the first-grade recital.
It's hard to say whether they had it better or worse than CJ, who didn't find out until they were nearly an adult and told they would never have children. At first, they say, "I was numb to it." But, later, "I became incredibly detached and withdrawn for a while. I started to have panic attacks and really found it difficult to understand, let alone accept, my diagnosis. I have come a long way since then, but I still have panic attacks and find it hard to deal with at certain points. Overall, though, I've reached a point of acceptance."
Emily is the only one we spoke to who was diagnosed at birth, but that was just a fluke. "Genetic analysis had predicted that my parents would have two boys -- two XY babies," she says. So they knew that something was up when her brother cooked up as expected but she popped out all inconveniently pink. She considers herself extremely lucky: "Lots of intersex people don't know they're intersex until later in life, either because their conditions leave them looking externally typical or because their doctors and parents specifically kept them in the dark out of the fear that knowing they were intersex would interfere with them expressing normal gender identities and sexual behaviors," she says.
Though we're not sure how "Wait to tell her until you need to buy her first electric razor" is a better option.
To be fair, expressing "abnormal" gender identities and sexual behaviors is, medically speaking, worse than cancer. No, seriously, that's what they're up against. You see ...
Intersex Medical Problems Go Far Beyond Your Junk
For people with Swyer Syndrome, those not-balls eventually have to be removed, because leaving them in there too long turns them into freaking cancer. "I had my potentially cancerous proto-gonads removed as soon as I was old enough that the surgery carried basically no risks," Emily says. "I was 3 or 4."
Then there's the raging storm of hormones once you enter puberty, which is less like the hurricane most of us experience and more like The Day After Tomorrow. One side effect of Swyer syndrome and the hormone replacement therapy that treats it is that your growth spurts are more like growth marathons, and left unchecked they can reach Hagrid levels of out-of-control. "When I'd reached the height I was supposed to reach pre-puberty, and the growth plates in my wrist had fused together, I started taking progesterone pills and using estrogen patches (designed for menopausal women, interestingly enough)," Emily says. "Once I was done developing, I went on birth control pills. Is it ironic that they contain just the right amounts and proportion of estrogen and progesterone to treat a condition that causes infertility?"
Con: Probably cost them a shot at a career in professional sports.
Pro: Still able to walk without a cane by age 19.
Not everyone has glowing words for hormone regulation, though. "For years I took androgen blockers, nobody ever explained to me why I needed to take ; they just said, 'Because you're a woman,'" Allison says. "It baffles people that there are females who have nothing but androgens and testosterone in their body and they're totally fine with it."
Allison finally went off androgen blockers recently, and they're totally psyched to grow that beard back, but this is just one example of a larger problem: In Allison's experience, doctors are bad at listening to intersex patients.
"I read two paragraphs on it, while attending the sixth-best med school in the state,
so I'm pretty sure in saying I know more about this whole thing than you."
"It is really, really difficult, if not damn near impossible, to find a doctor that knows anything about my condition," they say, "and especially ones who are willing to let you have a say in your treatment. ... I love it when I get an endocrinologist who admits that, 'I have no idea what this condition is, and if you know what you need, tell me and I'll give it to you.'"
Even your paperwork can be a huge, unnecessary headache. Most people don't give a second thought to checking the M or F box on an insurance form, but again, for intersex people, that's not an easy question, and it can have consequences way beyond an identity crisis.
For example, wrist strain from trying to fit a detailed medical history into the margins of any form.
"I once went through an entire appointment with a gynecologist at my university's clinic only to find at the end that she wouldn't renew my birth control prescription because I'd been on it 'too long' and I should 'just use condoms for a while, sweetie,'" Emily says. "This is a terrible thing for a healthcare provider to do to any young person, I only receive sex hormones from my hormone replacement therapy, my birth control. If I stop taking it, I'll basically abruptly enter menopause. I went a little crazy and yelled at her until she finally called the clinician I'd seen previously and agreed to renew the prescription, but still, you can see how, as an intersex person, being forced to check 'male' or 'female' can be a big problem." Now, she says, "When I see those boxes, I add my own and write the name and a brief description of my condition. I've been berated a few times for making their data entry more difficult, but I have to prioritize my own health and safety."
There can even be problems that have nothing to do with your baby-making parts. Allison's condition is technically an adrenal disorder. "I have to take steroids for the adrenal issues, and that's a thing that's actually a life-or-death issue," they say. "If I get sick, I can go into adrenal crisis, where I can't produce cortisol and it can actually be pretty deadly." Their body also goes through more salt than Jimmy Buffett: "I have to drink a bunch of water and take salt pills and make sure I'm hydrated, or it can be deadly, which makes me a lot of fun on road trips."
There Is Friction Between Intersex People And The LGBTQ Community
As an intersex person, you occupy a weird space among your sexual minority brethren.
"In most mainstream LGBTQ+ groups, intersex people only come up when it's time to refute the gender binary," Emily says. "They don't care about actually helping intersex people; we're just a token to be played when people say that the gender binary is only right and natural because the sex binary is only right and natural."
Yup: the underrepresented minority of the underrepresented minority.
Even though you're an outcast among outcasts, people still try to worm their way in on your thing because they, like so many of us, don't understand the difference between sex and gender. "Some of my fellow non-binary people consider themselves intersex, which really annoys me in particular," Emily says. "The intersex experience is, as I mentioned before, very much defined by interactions with the medical establishment, so people who never experienced those kinds of interactions horning in on intersex communities can be very insensitive."
You can't really self-identify a disrupted genital development.
To be fair, Emily says, intersex people can be insensitive right back at the LGBTQ community, "because no one can claim that an intersex person chose to be intersex."
Allison points out that, regardless of anything else, there's the simple matter of focus. "There just isn't really a lot of space in the queer community -- there's not even much space for trans people," they say. "It's like if the mainstream lesbian and queer people can't find room for the trans population, it's hard for them to find room for us, because most of the world doesn't even know that we exist."
Dammit, there are still states where people have no idea where they can safely and legally pee; there's just no time to explain what adrenal glands do.
Intersex People Are Pressured To "Fix" Themselves ... Or Their Parents Are
On the rare occasion that intersex people pop up on TV, it's usually followed by the frantic reassurance that they "got it fixed." Surely that's just a terrible myth exploited for storytelling purposes, right? Sadly, no.
"A typical cosmetic genital surgery would involve un-fusing the labia, creating or enlarging a vaginal canal, and shortening or removing the clitoral-penile structure," Emily explains. "This surgery is unnecessary, recovery is painful, and any surgery carries risks, particularly when performed on infants or on young children." The aftermath sounds like a very particular genre of horror movie: "The scar tissue from the initial surgery doesn't grow with you, so repeated surgeries and painful recoveries are often necessary. And then, because you've basically just created a gaping wound in a very vulnerable part of a child's body, it starts trying to heal itself. The solution? A vaginal spreader -- basically a medical dildo that doctors or in some cases parents regularly insert to ensure that the newly created vagina doesn't close up. An online acquaintance of mine said that the experience was so painful that she'd get on her knees begging her parents not to do it -- but they still did. If a doctor told you it was the only way for your child to be normal and happy, you'd do pretty much anything, right?"
Which, as we've discussed before, is a pretty tall order even if you aren't a confused grade-schooler.
Does it seem kind of weird that this is all about creating a vagina? What about dong-building? In theory, it's a coin flip which set is the correct one, right? Nope!
"In the words of doctors who perform these surgeries," Emily says, "'It's easier to dig a hole than raise a pole.'" Ostensibly, you're trying to reduce gender confusion, but you've got a pretty good chance of fucking that right up. "What if you 'feminize' the body of someone who grows up to be a man? He probably would have preferred his micropenis to no penis at all. Even if we could be sure that someone with indeterminate primary sex characteristics would grow up to be a woman and want to have penis-in-vagina sex ... it would still be better to wait until the person was physically mature and perform a vaginoplasty then. The results are great when performed on adults -- it would ensure better outcomes on all levels."
For those assuming the kid will just fall into whatever role their squishy parts dictate after infancy, well ... not so much.
That is, as long as the person grows up to feel that they should have the default bait and tackle in the first place. That's not always the case, and it's one more thing doctors steadfastly refuse to understand.
Allison likes their clitoris just the way it is, giving their doctors something else to be thoroughly baffled by.
"You mean the patient doesn't want a knife taken to their genitals? This looks like one for the journals."
"My gynecologist would ask me, 'When are you going to get this fixed?' They would say to my parents, 'Don't you want her to grow up and be able to find a good husband someday?'" That might seem weird, because men aren't known to assess potential partners by clitoral size (and they're not exactly Allison's type anyway). Allison explains, "Parents are obsessed with their kids' genitals for some reason, like if their child doesn't have the prettiest clitoris, she's never gonna fall in love."
If a prominent, user-friendly clitoris is supposed to be wrong, who on Earth would want to be right?
Tell Manna all about your genitals on Twitter.
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