Photo by Miquel Llonch via Stocksy
Being a teenager is hard enough, but intersex girls with Swyer Syndrome grapple with problems way beyond the usual zits and PMS.
Nature deals teens a pretty tough hand: Your face explodes in zits, hair appears all over the place, and your body starts to mutate like the High School Musical version of An American Werewolf in London. But some teenage girls—roughly 1 in 80,000 to be precise—never go through this. They never develop breasts or start their periods. They'll usually be much taller and broader than their peers, and have much larger feet. Thanks to a medical condition called Swyer Syndrome, these girls have been genetically male their whole lives without knowing it.
Bethan from Swansea, Wales, can relate. She encountered bullying throughout her school years as a result of her condition. "I was called names like 'man beast,' 'man boobs,' and 'Shrek,'" the 23-year-old said. "It was a very difficult time." This kind of schoolyard abuse is sadly (but predictably) the norm. A general lack of readily available information about this condition doesn't help, either. For girls with Swyer Syndrome, everything they learned about their bodies in sex ed is suddenly wrong, and many are left to flounder, wondering where they fit in.
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Women with Swyer Syndrome are born with XY (male) chromosomal makeup, which means their reproductive organs don't develop properly. To outward appearances, they may seem female, though their underdeveloped organs have knock-on effects for their hormones. These girls never go through puberty, because they lack the regular hormones that a young woman usually possesses. On a basic genetic level, they are male. But as the condition is rarely diagnosed before the teen years, when lack of breasts and periods make it apparent, most identify as female and continue to do so after diagnosis. In these cases, the medical community will accept the individual's gender identity as their medically-defined gender.
I found Bethan on an online forum, where people with the condition swapped stories and shared information with those who could relate. Bethan, along with three others, agreed to talk to me about what it was like growing up with Swyer Syndrome and how it affects their lives.
Girls with Swyer Syndrome usually go undiagnosed until they fail to hit puberty. Photo by Miquel Llonch via Stocksy
Georgia, who is now 22, first noticed there was something different about her when she was 15. "I was as tall as my dad, which I thought was strange—the majority of my family are very short. I still didn't have my period and still hadn't developed breasts. My feet were size 12 and I struggled to find jeans and tops that were long enough."
Bethan's mother insisted that she was just a "late bloomer." As the years passed, Bethan still didn't develop. A doctor finally diagnosed Swyer Syndrome—though he was as puzzled by it as her parents. "The doctor that diagnosed me had never come across the condition before," Bethan said, "so [he] was as new to it as me and my family were." As so little was understood about the condition, she felt isolated in the early days of her diagnosis: "I didn't fully understand my condition. I was different to my friends and I felt nobody would ever want to love someone who is, on a genetic level, male."
To put it simply, if you were to perish in a fire and your body was burned beyond recognition, the coroner would presume that you were male.
This fear is shared by Georgia, who told me her worries about the future. "I'm very scared about getting into a relationship. I feel my boyfriend might get turned away because I have XY chromosomes, and I don't want to go through IVF," she said, referencing the fertility treatment that women with Swyer Syndrome can undergo to have children. "Thinking of the day when I'd have to tell someone I have Swyer Syndrome really scares me."
For Stephanie, telling a partner about her male chromosomes was never a problem—mainly because her first doctor didn't even tell her about them. Now 43, the South Carolina resident was diagnosed with "under-developed ovaries" at the age of 16 and had them removed. When she and her husband began donor egg treatment to have a child, a doctor finally explained that she was genetically male. She was 36. At the time, his words were: "To put it simply, if you were to perish in a fire and your body was burned beyond recognition, the coroner would presume that you were male."
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Intersex individuals such as those with Swyer Syndrome make up the 'I' in 'LGBTQI,' but intersex men and women are often forgotten in the rainbow coalition of queerness. But the condition can be seen as ultimate proof of the fluidity of gender identity. Most women with the syndrome don't seem 'male' (whatever that means) beyond a few arbitrary physical differences such as height. In other words, male chromosomes isn't enough to make you male. Gender transcends genetics.
Still, this is a tricky concept to get your head around at 15 or 16, when the idea of becoming a woman in the biological sense already seems daunting enough. Adjusting to the fact that you may never go through many of the rites of passage your female friends talk about—periods, PMS, getting boobs—is a pretty massive deal.
For most young women, the hardest thing about their condition is understanding what their diagnosis actually means and explaining it to friends and family. But thanks to trans celebrities like Laverne Cox and Caitlyn Jenner, discussions of gender and sexuality have dominated this year's headlines. While women with Swyer Syndrome are not trans (and not all of them feel comfortable identifying as intersex), this means that society has come a long way since 1988, when Stephanie was first treated under the veiled excuse of "under-developed ovaries".
Being assumed to be male, or trans, because of our typically tall stature is its own hell.
"Society is definitely more accepting now," she told me. "Intersex and gender issues are mentioned so often in the news that bringing the topic into a conversation is much easier. As a teenager, I'm quite positive that I would have keep my diagnosis a secret."
Alex* felt their diagnosis helped explain why their sexual identity since their early teens, though they hid it from conservative religious parents. "I knew I was queer when I was 14, but decided that since I didn't plan on burning in hell I'd just keep that to myself." Alex experienced a huge amount of prejudice. People reacted to the physical characteristics of the syndrome badly, sometimes aggressively. "Being assumed to be male, or trans, because of our typically tall stature is its own hell. I've been beaten up, chased out of bathrooms and had management called on me, just for trying to go pee as a woman."
Today, Alex has begun to transition to male with testosterone treatment, but he continues to identify as intersex. Alex wanted to make clear the complexities of how the condition affects them. Their queer and intersex identity is the result of myriad aspects of their personality and sexuality, with Swyer Syndrome simply one contributing element.
If anyone with Swyer Syndrome feels that they're not 'normal' I'd encourage them to question what they think of as 'normal' anyway.
One New York specialist told us that her female patients often feel unhappy with the lack of information around the condition. Dr Heather Applebaum, who leads a project called PURE (Pediatric Urogenital, Reproductive, and Endocrine) Disorders Program at the Steven and Alexandra Cohen Children's Medical Center, said that a more holistic medical approach was needed. "Patients can really benefit from a multidisciplinary heath care team of experts who can compassionately and appropriately explain the condition and adequately treat these unique individuals."
Would greater education help these young women? What if Swyer Syndrome was taught in sex ed? "Certainly, the more informed people are, the greater appreciation they will have for people's differences."
It's the complexity of the condition that causes frustration for sufferers and the medical community alike. Teenagers and young girls already grapple with their sense of self, let alone their place on the gender spectrum. Bethan has overcome the bullies of her past, so I asked her what she'd say to a young girl with Swyer Syndrome. "There is no way to be completely normal," she said. "Everyone has their quirk that makes them individual. Swyer Syndrome is my 'quirk.' I wouldn't be the person I am today if I hadn't been through what I have. If anyone with Swyer Syndrome feels that they're not 'normal' I'd encourage them to question what they think of as 'normal' anyway. I bet that they won't find one person in this world who's completely normal."
* Name has been changed
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