So You Are Intersex

Can you imagine being on the receiving end of this email:

In 2017, a few weeks after I mailed a tube of my saliva to a company that offers genetic testing to provide ancestry breakdowns and insight into health conditions, an email arrived in my inbox. The message read, “We would like to follow up with you via phone to verify additional information about your DNA analysis.” I was told, “Based on your answers, we’ve identified a mismatch in your DNA…you completed your profile as ‘male.’ But your DNA appears to be female.” I made an appointment with a geneticist. “You have something called ‘disorder of sexual development.’ Specifically, your variation is called XX testicular DSD.”[1]

This person has XX Male Syndrome, a difference of sexual development that results in a person with small or undescended testes, no sperm and so infertile, gynecomastia (breast tissue), reduced virilization (reduced pubic and facial hair, small penis size, less thickening of the jaw, less muscle mass, etc.), and who is far shorter than average males. As far as this person knew, growing up, he was a male, but his chromosomes were female. According to the President of the United States, he is neither male nor female because he does not produce the male gamete (sperm) nor the female gamete (ova).

In another case, I’m not sure what this person’s Difference of Sexual Development was, but he reports,

I was born with ambiguous genitalia. A choice had to be made so I was raised a girl, restricted to do some things like using the bathroom when others are in it. Years went by until I reached adolescence, where I shocked everyone. My voice broke, it became deep, it actually became as a scare. We were the talk of the village, so had to move to start over and adjust to living as a boy and try to understand who I am.[2]

Bria, a 27-yr. old from Delaware, says,

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.[3]

Banti, an 18-yr. old from Massachusetts, reports,

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.[4]

27-yr. old Cat from Massachusetts writes,

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.[5]

Here are more testimonies of intersex people:[6]

Anick, 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.

Irene, 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.

Mari, 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.

Danielle, 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!

Frank, 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.

We are uncomfortable with people who don’t neatly fit the male or female category. We may even be judgmental of them, as if it is their fault they don’t conform to the norm. But Christians, of all people, ought to receive and accept intersex people, knowing they were made this way by God. We should defend such children against those who would bully or deride them. We should embrace the sometimes confusing changes they might make as to gender self-identity. In a word, we should love them as Jesus loves them.

[1] https://www.huffpost.com/entry/intersex-dna-test-results-gender-identity-trans_n_67a2798de4b089566c46cd7e

[2] https://intersexadvocate.org/stories/

[3] https://www.teenvogue.com/gallery/young-people-on-how-they-found-out-they-are-intersex

[4] Ibid.

[5] Ibid.

[6] Ibid.