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.
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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."
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.
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.
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"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."
Being assumed to be male, or trans, because of our typically tall stature is its own hell.
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
If anyone with Swyer Syndrome feels that they're not 'normal' I'd encourage them to question what they think of as 'normal' anyway.