9 Young People on How They Found Out They Are Intersex
Intersex people have bodies that are just a little different. While about 98% of human bodies match up with the two paths of sex development we learn about in sex ed, intersex bodies are extra creative: we have natural differences in our genitalia, chromosomes, gonads, internal sex organs, hormone production and response, and/or secondary sex traits, such as how we grow breasts or body hair.
Some intersex differences are obvious at birth. This puts us at risk in a medical system that can still recommend elective surgeries to “normalize” infant genitalia to parents. The practice seemingly originates from a historical fear that intersex bodily differences mean a person will grow up to be gay or transgender. But intersex people can have any gender and sexuality, just like anyone else. We still have to fight against our bodily integrity being taken from us.
Intersex is a category of experiences. There are many ways to have an intersex body, and not all of them involve surgery or parents finding out at birth. Many people might not even be aware that their bodily experiences fall under the intersex umbrella. As these stories show, many teens are only told medical terminology, and later come to the word “intersex” through finding online resources.
If you are intersex, you can get connected to others via interACT Youth, a group for advocacy and peer support for ages 13-29. You will find that the intersex community is resilient, thriving, and global. There are others out there, waiting to meet new people with love. Here are 9 of their stories.
Courtesy of Bria1/9Bria (they/them), 27, Delaware
I was raised as a girl. I wore pretty dresses and barrettes in my hair. When I was in second grade I started growing facial hair and breasts at the same time. My entire body, including my legs, underarms, and torso was covered in hair. I remember discovering that I had an Adam’s apple around the same time I had my first period when I was eight. I knew I was different, I just didn’t know how to make sense of the differences. I was told by mom and my doctors that I was a normal girl, especially since I already had my period. However, my enlarged clitoris made me feel different. I couldn’t wear swimsuits because I always had a noticeable bulge that the other girls made fun of. No one was preparing me for those types of experiences. I felt very alone and confused.
I started loosely identifying as intersex when I was in middle school. I finally had a word to describe my experience. I had something to say to people when they asked me if I was a boy or a girl. Now I get to embrace my intersex characteristics on public platforms and raise awareness about intersex issues. I’ll take that over being a “normal girl” any day.
Courtesy of Banti2/9Banti (they/them), 18, Massachusetts
From the day I was born, it was clear my body was intersex. I lived in India until my parents, who are from the United States, adopted me at age 2. Doctors in India performed surgeries without my consent to make my genitalia look "typically female." That meant a clitoroplasty, vaginoplasty, followed by a series of dilations. Because of the surgeries I suffer from soreness, stinging pain, and a PTSD-like response in medical settings.
I first heard the term intersex during first or second grade when my parents took me to a check-up. Before I heard the word intersex, I used the term “DSD,” a medical phrase meaning “disorder of sex development.” I still feel that doctors use language which makes me feel like a specimen. Today I feel my body is out of my control. I have a uterine structure that gives me a period. Doctors never told me this about my body, until I was surprised by bleeding. I wish I was fully informed.
Courtesy of Johnny3/9Johnny (all pronouns), 23, Washington
I am a Black, indigenous, plus-size intersex trans femme — and yes, you can reside at the intersection of all of these identities. It is so important to acknowledge and dispel the myths of what an intersex person is supposed to look like. We often see thin, white/white-coded people in the media, especially around the movement, but that is simply not true.
I knew I had surgeries as a young child. I learned the truth about what happened much later on. I didn’t hear the word intersex until I met other people online through interACT’s advocacy group.
We are here. Our bodies are not wrong. Our bodies break the binary. Our bodies are whole. Our stories may seem to always live in the world of sadness, but we are thriving and fighting in a society that constantly erases us. I have to remember to tell myself that my body is powerful, and it is full of the groundbreaking fight for liberation. I am proud to be intersex and live my truth authentically and fully.
Courtesy of Cat4/9Cat (she/her), 27, Massachusetts
I was born with proximal hypospadias and underwent an unsuccessful cosmetic procedure as an infant, leaving me with complications. The feelings of shame shrouded my teen years and I developed chronic depression. Desperately wanting to be “normal,” I went under the knife again at 17, however this left me with even more physical issues. Google searches late at night lead me to discover the term “intersex” years later while in college, and for the first time in my life I was able to find other people that had gone through similar experiences and attach a non-stigmatizing label to my body. Being part of the intersex community taught me to love myself, helping undo years of internalized shame and healing from the harmful messaging that my body is broken and must be fixed. It was only until recently that I’ve been able to gain the confidence to share my story and advocate the rights of intersex people.
Anick5/9Anick (he/him), 24, London, England
Being secretly intersex, even when I only knew medicalized terminology, felt very isolating. I never got to learn about bodies like mine being healthy, so I would wish for a different kind of “illness” that wasn’t so invisible. My private parts looked visibly different, and I desperately tried to conceal this. I was mortified at the thought of someone finding out. I never admitted when I fancied someone, and I would always try to change into my gym clothes out of sight.
I was taught to hate my body from a young age. I was made to feel like I was a freak. Yet, I think what made my experience so unusual was that I looked perfectly fine to most people throughout my life. I was still in primary school when I began to understand that there was something about me that doctors found intriguing, but I couldn’t figure out why. All my scars were hidden. I never spoke about any of the medical stuff, because that would be admitting something was different. The truth was something I spent a long time hiding and I just wish I didn’t have so much fear.
What hurt the most, aside from the surgeries and infections, was the idea that I would always be rejected and never comfortable in my own skin. Turns out, the more we share our experiences, the easier it is for other people to consider our stories and be kinder. So, next time you’re thinking about making jokes about someone’s body or size: don’t.
Courtesy of Francis6/9Francis (he/him), 18, Canada
Growing up, I always had the sense that my body was different. I was assigned female at birth, but I now know that I am intersex. I never wanted to take off my clothes in front of friends and always wore swim trunks and a bikini top. I remember that at age 6 I asked my dad why my genitals were different. He had no answer because he was not yet educated on intersex issues. At 11 I asked my mom why I had no opening when I tried using a tampon. Like my dad, she had no answers. I was embarrassed when she told her friends and sisters about me asking.
In adolescence I was taken to a specialist. He wanted to examine my body and discovered I had late pubertal progression. I found out I had a mixed karyotype of XX and XY, and in my late teens I learned I had to get a gonadectomy. I was really upset about needing this procedure, which caused me to go into a depression. The operation took a long time because my doctor admitted that he had never had an intersex patient before. Afterward I learned that I actually had one ovotestis, which explained some things about my body. I never knew I was intersex until much later in my life, due to doctors not using the term. I found out from the internet and making connections to my experiences and personal medical records.
Courtesy of Irene7/9Irene (she/her), 26, Moscow, Russia
I was about 12 when everyone my age hit puberty, but I didn't: No breasts, no period, only some signs of high testosterone levels. At 15, I had my gonads removed without clearly understanding what was being done to me. I was given estrogen, and two years later I started my period but I never got much breast growth.
I learned that I'm intersex at 22 when I saw the "What It's Like To Be Intersex" video on Buzzfeed, which led me to seek out my medical records. I found that that I have XY chromosomes and an intersex variation called mixed gonadal dysgenesis. Discovering the truth was the best thing that ever happened to me. I wish I knew the truth from the start. I could've avoided years of pain, shame, and self-hatred. My life could've been completely different. But my painful experience gives me energy to work towards a future where no intersex child would have to go through what I had to experience.
Courtesy of Mari8/9Mari (they/them), 22, California
My intersex story started once I hit puberty. I had no idea that I was different until I started to develop characteristics more closely aligned with people assigned male at birth, rather than those assigned female at birth like myself. I never had my period when I was growing up. I didn’t develop breasts, despite the fact that both of my sisters developed DD cups. But I did develop in other ways. My skin got oily. I had as much acne as my dad when he was in high school. My body and facial hair was even thicker and darker than my brother’s.
I was never bothered by these changes myself, but my doctors were confused by my body and uncomfortable that I wasn’t developing in the ways that they expected a “normal girl” to develop. They started to push treatment on me that I didn't want: hormone blocking medication to suppress my natural testosterone levels. Some kids do grow up to be cisgender women, and may want to block testosterone to prevent changes such as thicker body hair. I realized I wasn’t one of them, but I wasn't really given any say. I was self-conscious that I felt comfortable with my body when I was constantly told that I should medically change it.
For the longest time, I was ashamed about being different. I didn’t know that a community of people like me existed, and that so many of us do exist happily without medical intervention. Once I learned the term intersex and started to find an identity and community within it, I stopped feeling bad for myself. I embraced my body as beautiful and as a measure of how diverse humans are. I started to feel more confident. Not all intersex experiences involve surgery. To anyone who thinks their bodily experiences might fall under the intersex umbrella, my advice is to explore intersex community and identity. You only have awareness and understanding to gain.
9/9Danielle (she/they), 24, Berlin, Germany
My intersex body has XY chromosomes, internal testes that were removed when I was 14, and no other internal reproductive organs. I was assigned and raised female, which luckily has always been my gender identity. You can imagine my shock and confusion when my pubescent body started developing some unexpected characteristics, most of which aren’t traditionally considered feminine. My voice dropped, leading to bullying at school, I never grew any armpit hair (score), and I started noticing other changes down there. I also don’t get a period.
I hid all of these differences from those closest to me — denial, shame, and stigma clouded my judgement. Looking back, I was scared to give up the label of being “normal,” scared that people would look at me differently. I knew that once I told anyone, there would be no going back. When I finally grew the balls (intersex pun) to come out to my mum, I had been suffering alone for four years. Right before I told her, I asked her not to laugh at me, and I think that says it all: I thought my body was laughable. At that point, I had never even heard the word intersex, let alone seen any media representation or met a fellow intersex person.
I thought finding out I was different would be the end of the world, but it turns out it was only the beginning! I have met so many incredible people on my journey to self-love and acceptance. Embracing my intersex identity gave me a truly worthy purpose that consistently grounds me and sets me in the right direction. Although the past 10 years have been challenging, I can honestly say I’m so happy I was born the way I am — as me. All the best things in life take work, but as a result I am more empathetic, inclusive and resilient. Happy Intersex Awareness Day 2019!
