I was 18 when I found out that I’m intersex—or, rather, when it was fully clarified for me. That means I was born with one of several potential chromosome pairings that differ from the most common two, which we define as “male” and “female.”
It was 2012. I was living in New York at the time and was hospitalized for a serious medical syndrome that left me temporarily paralyzed. While I was in the hospital, bedridden, the doctor began doing tests on me to figure out what was wrong. When he realized that there was something “abnormal” about my reproductive organs, he became fixated on figuring out what exactly it was—even while I was facing a life-threatening condition that was causing me to temporarily lose ability in my limbs. The doctor gave me my first gynecological exam while I was still paralyzed. I had always known that there was something different about my body, but I had never had the words for it before.
Once it was clear that I am intersex, the doctor encouraged me to undergo medical procedures in order to “normalize” and “correct” my body. Like many other intersex people, I was told that I had a birth defect. I was not told that there is no health or medical reason that makes being intersex a “defect”—that that idea is entirely dependent on the rigid ways we understand sex and gender socially and our desire to fit people into a binary. I was not told that an estimated 1.7 percent of people in the world are born intersex, or that there are communities of intersex people that I could reach out to and join in order to feel less alone.
For three years, I didn’t tell anyone. I didn’t ask my parents about it, and I didn’t say anything to my sister. I felt ashamed. I felt unlovable. I felt utterly isolated. Sometimes suicidal thoughts entered my mind. It was painful to not feel able to be truthful about who I am.
Eventually, in my third year of college, I found a friend who I trusted enough to tell. She was queer and non-judgmental, so I felt comfortable around her. But I was also just ready to open up. I was fed up with having held in this part of myself for so long. My friend didn’t quite know what intersex was, but she was kind and supportive. It turned out to be a deeply healing experience. Energized by that coming out, I began to feel an urge to be visible—not just for myself, but for other intersex people who may also be hiding and hurting because of it. I wanted to learn how to talk about my identity and be proud in the way I saw other members of the LGBTQ community doing. I felt ready to fight.
Around three weeks later, I was sitting in my gender studies class, reading a study done by my professor in which he repeatedly referred to intersex infants as “it.” I had had enough. I raised my hand and announced to the class that I am intersex and I am a person not a thing—or some curious phenomenon to be studied or tested. My fellow students mostly just sat there quietly, shocked. The teaching assistants pushed back a bit. But a few people raised their hands and offered agreement and support.
Ever since then, I’ve been open about being intersex. But I can’t say I’m “out” really, because existing openly as intersex requires constantly coming out over and over again. Because there is so little awareness and representation of intersex identities (although it is slowly growing), I constantly have to explain what “intersex” means to people. For me, that’s the hardest part about being out, because it’s so exhausting and you never know how someone is going to react or whether you’re in a safe space. Sometimes people have no idea what I’m talking about; sometimes they ask me uncomfortable questions about my genitals. It’s particularly scary and difficult in romantic relationships.
Once I began being more open about my identity, I started identifying with the LGBTQI community. I joined some online groups for intersex people, and for the first time began feeling less alone. Eventually, I reached out to InterACT, an organization that advocates for intersex youth, and became a member.
Finally, earlier this year, I met another openly intersex person for the first time. Actually, I met many. It was at an InterACT event in New York City. After talking to people online for so long, it was really special to meet them in person. It felt incredible to have a space where I was simply embraced, no questions asked. For the first time, I could envision a potential future in which I don’t have to constantly explain myself, and I don’t have to fight to be seen, but am just accepted for who I am.
Intersex people have always existed, but throughout history, the powers that be have done an incredible job of erasing us. But growing representation, community, and awareness make a profound difference. In the years since I first found out I was intersex, visibility and understanding for intersex people has expanded so much, and I’m in awe of all the intersex activists I know fighting for that every day. But while it feels so freeing to be seen, it also feels dangerous. The more we push forward, the harder those who want to erase us push back.
On Sunday, the New York Times reported that the Trump Administration is attempting to implement a memo that would literally define intersex people out of existence, along with trans and non-binary people. If the guidelines are taken up by the courts, it would mean that intersex people would have to lie about who they are in order to be accepted as legal citizens. We can’t let that happen.
It’s erasure like this that pushes me to do the work of being visible. It’s the reason I keep the hashtag "#intersexy" in my bio on my social media—just in case a confused young person comes along who might benefit from knowing that it is possible to exist as a proud intersex person. It’s still a journey and struggle for me to be out. But I don’t want anyone—especially children—to feel like their body is wrong or that they have to change themselves unless they want to. (Believe me, I know what it feels like.) I need them to know that they are completely normal, and that they are loved, and that they are perfect as they are.