“Doctors told us to keep quiet”

How would you describe your condition?

“I was born with male XY chromosomes but my body does not react to male hormones (androgens). As a result, my body didn’t grow into a boy as it was supposed to. All the testosterone in my body got converted into oestrogen instead, which gave me the appearance of a girl. I don’t have internal female genitalia, such as a uterus, ovaries or fallopian tubes.”

When did you find out you that you were intersex?

“I used to visit the paediatrician to monitor my growth. I am 1.85 metres tall, which is uncommon for women. When I was 14 years old, I went to the paediatrician for a usual check-up and I told them that I had not had my period yet. They took my blood to check my hormone levels. Normally it takes two months to get your results back but I got a call three days later. My hormone levels didn't look good, so I had to be investigated further. In August 2017, when I was almost 15, I was diagnosed with androgen insensitivity syndrome.”

How did you deal with that diagnosis?

“It was quite a shock, both for me and my family. We did not know about this condition and so many questions popped up. I had to go to a specialised hospital because average doctors couldn't answer my questions. It was unclear what this diagnosis would mean for my future, which made it a very confusing period of my life.”

How does that affect your mental health?

“In the beginning, I found it very difficult to accept my diagnosis because I had a strong desire to have children from an early age. I always knew I wanted to be a mother and that dream suddenly fell apart. This was very painful and it took a toll on my mental health. I have learned to deal with these feelings, so it affects my life less. But sometime in my life, this subject will become sensitive again because friends will eventually get pregnant and I won’t."

What about relationships and dating?

“I have always been open about my condition. My last relationship lasted for a year and a half. My ex-partner never made a problem out of it. After my relationship ended and I started dating, I kept being open about it to others. Fortunately, I never received bad reactions regarding my condition. People are generally interested, they often have never heard of it before and ask me to explain further.”

Are there positive aspects to being an intersex person?

“There are many different forms of intersex, but in my case, I notice some advantages with my condition. For example, I have little to no body hair. I also don't get pimples or greasy hair and I never smell like sweat."

What is the theatre performance XY WE about?

“The theatre performance is about six intersex people who tell their stories to the audience. The show is a combination of stories, dance and humorous scenes. In the Netherlands, doctors used to advise intersex people not to talk about their condition with others. It was emphasized that intersex people are 'different'. I think this is related to the fact that little information was known about this topic. This rule has now been changed, doctors are no longer allowed to give this advice. Yet there is still a taboo on this topic: in the Netherlands, very few intersex people speak publicly about their condition. This is reflected in our theatre performance; we let some sort of Google voice tell our stories since we used to not have a voice of our own. The performance is shown to schools, hospitals and medical students to ensure that the message is clear.”

What message would you like to give to people who know little about intersex?

“The most important thing is that people inform themselves. I never heard anyone talk about being intersex for years until the past few years. It is also important for intersex people to talk openly and break the taboo. I hope people can see that intersex people are not different from others.”