This article originally appeared on VICE Netherlands.
It’s an umbrella term that comprises a lot of different natural body variations – for example, someone who is born with both male and female genes. Because it’s such a wide category, it’s hard to know exactly how many intersex people there are in the world, with estimates ranging from 0.02 up to 1.7 percent of the global population.
Intersex people are still hugely misunderstood, even by healthcare professionals. In a 2017 study, medical students self-reported they had less medical knowledge about intersex and trans people than other groups on the LGBTQI spectrum. Research by the Belgian University Hospital Ghent and the Dutch Rutgers Centre found that only one in three people in the Netherlands and Flanders could explain what being intersex means.
Figuring out who you are in a society that wants you to fit neatly within a box isn’t easy. We asked three people how they found out they were intersex – and what the label means for them today.
Joyce Kiela, 18
I have Androgen Insensitivity Syndrome (AIS). Mother nature wanted me to be a boy, because I was born with male XY chromosomes, but I’m also 100 percent insensitive to testosterone, so she turned me into a girl.
As a child, I’d often go to the paediatrician because I was unusually tall. At 14, I told them I wasn’t getting my period. We did a blood test expecting to find nothing, but the results surprised them, so they had to look further. That’s when the whole circus began – more blood tests, MRI scans and ultrasounds. During one of the scans I was told I didn’t have a uterus or ovaries. I cried the entire afternoon. I’d always dreamed of having three kids, so that was a tough pill to swallow.
Eventually, I was diagnosed with AIS. I was confused, because I’d never even heard of it. I told a couple of friends, but they didn’t understand – they were busy chasing boys while I was questioning my own identity. Was I a man now? I soon realised I was still the same Joyce as before. In some way, the diagnosis was also a relief – finally, I had an explanation for my growth spurt and mood swings.
When I tell people I’m intersex and I have testes [undeveloped testicles], I get upset, because it sounds so masculine. Nearly every intersex person [born with testes] has had their testes removed. Doctors used to believe they could become carcinogenic, but I think they mostly thought they didn’t belong there.
Each intersex condition is different, so the decision to operate varies from case to case. I’m one of the few intersex people who still has them, because I’m so young. My testes actually help my body turn some of my male hormones into female ones, which means I don’t have to take any medication.
I talk a lot about being intersex on social media, and I was also in a play about intersex people. I think it’s important everyone knows we exist.
Annelies Tukker, 36
In high school, all the girls started talking about getting their period. I didn’t get mine, so I began suspecting my body was different. At 17, I did an ultrasound at the hospital. When they called me and asked me to go back for more tests, I knew something was wrong.
Eventually, the doctor told me I was intersex and I didn’t have a uterus or ovaries. I was quite shocked. Fortunately, my doctor was very kind – I know not everyone can say that. They told me I had XY chromosomes, which made me question my femininity, since I was taught those are male chromosomes. I was afraid people would be able to tell I was intersex. I saw a psychologist who told me not to discuss this with other people because they would make fun of me. It all felt like a big secret. My testes were also removed without my consent.
Luckily, I was able to talk about it to my parents. I’ve told a few people over the years, but I was terrified to open up because of the fear and shame that were instilled in me.
In my early thirties, I decided to go to the Utrecht Canal Pride [a pride parade on boats]. I was so tired of being ashamed. I ordered a custom T-shirt with the word “Intersexy” on the back, which was petrifying in and of itself. I was on a boat with some of the most open-minded people I knew and I was still really nervous.
I took off my jacket and, much to my surprise, the world didn’t end. That’s when I realised I wanted to be out and proud. After that, I got involved with the NNID, a Dutch organisation for sex diversity. One year later, we organised the first intersex pride boat together. Fortunately, I see that people are starting to understand that sex is far more diverse than what they’ve been taught.
When I was 15, I went to the doctor for back pain. They immediately noticed something else was going on by looking at my physique – I have a pear-shaped body with broad hips and wide shoulders, which is a possible physical manifestation of being intersex.
I was diagnosed with Klinefelter syndrome and told I had XXY chromosomes. The doctor said I couldn’t produce testosterone and I hadn’t reached puberty yet, so we had to get my testosterone levels up to normal or I’d risk developing breast cancer and osteoporosis. And when the doctor tells you something, you take their advice.
They also said I risked having low mental capacity and that there was a good chance I would be unemployed later in life. I’m really glad my parents always told me not to live my life based on that information, which turned out to be outdated. I was also told I was infertile, which was devastating.
The testosterone injections did wonders. I went from an introverted person who couldn't be bothered with sports to a confident and very masculine person. Looking back, I feel differently about it. The testosterone made me act like an extrovert while I still felt like an introvert inside. It made me question who I really was.
The biggest struggle for me is that everyone sees me as a cisgender man, but that’s not how I feel. I don’t feel like a man or a woman. The body I was born with fits me perfectly. Without testosterone, I might have developed breasts. That would have probably been hard during my teenage years, but it might have also made me happy. I think my doctors just wanted to make my life more comfortable.
Being intersex is a sociological problem, not a medical one. I’d rather live in a world where it’s normal for me to also have breasts. When I was diagnosed, the word “intersex” wasn’t really used. I actually only found out about it last year after watching the documentary Beste reizigers [a film about the Dutch rail service adopting gender-inclusive language].
Now, I want to learn who I really am, because I’ve always adapted to the world around me. The next step is probably getting rid of my hormones. It’s exciting because I’ve been on them since I was 15. I don’t know what life is like without them.
*Surname known to the editors.
UPDATE 26/03/21: This article was edited to clarify that being intersex is not an identity.