Main content

'We’re not rare, we’re just invisible'

The new series of Call the Midwife features a character who finds out she is intersex in adult life. It's a story that Suz Temko can relate to.

Click here to listen to Suz's full report on 5 Live.

(Photo: Mark Harrison)

When I was 15 I went to party and I fell over a bit awkwardly. I found this little mound, a molehill in my abdomen, and I thought, “that wasn’t there before, that’s weird”.

It turned out I had stage 4 cancer and the initial diagnosis was ovarian cancer. That in itself at 15 is quite something.

A big part of having cancer is saying, “what did I do? How did this happen?” And you usually never get to know.

But after I was given the all-clear, the hospital got in touch and said, “do you want to know why you got it?”

I went into that appointment so enthusiastic. I thought, “this is great, everything’s going to be sewn up, I’m going to have closure”.

The doctor was so technical, I didn’t really follow what I was being told but one sentence really stuck out: “You have typically male XY chromosomes. In other words, you’re physically female but genetically male.”

I don’t think I can be in a dress tonight"

It turns out the type of cancer I had wasn't ovarian cancer because I didn't have ovaries. It was something the doctors knew but had been waiting for the right moment to tell me.

I'm intersex, meaning a person born with a variation in sex traits - which could include genitals, chromosomes, gonads, or hormones - that don't align with typical binary understanding of male or female bodies.

Very, very rarely, in less than one per cent of intersex people, this can lead to cancer and this was what I had been treated for.

We’d walked 10 steps out of the hospital before it clicked. This wasn’t just an interesting biology lesson, this was about me. Suddenly I had a reason for why I’d never had a period.

I started to panic. I felt like my chest was vacuum packed.

It was the day of my fifth form prom. I didn’t go. I remember thinking, “I don’t think I can be in a dress tonight”.

(Suz Temko with her family)

There are handbooks and memoirs about having cancer but there was nothing about what to do if you’re intersex. I felt like I was in a black hole so I ignored it.

The general sentiment from doctors and family was: “Keep this to yourself. Don’t tell people."

For the next two years, I was the happiest I’d ever been. I was thrilled to be alive. I became a spokesperson for the Teenage Cancer Trust and that really helped me take control of the cancer experience.

But there was this huge other thing that I was not dealing with.

Everything changed when I was 18 and got malaria on a trip to Tanzania. For insurance reasons, I had to speak to a doctor in the UK.

I don’t know what you’ve been told but you are a boy. That’s it"

Before then, I thought doctors were wonderful, infallible. I thought they were there to tell me the truth and make me better.

It made what followed so much worse.

The doctor asked me for a full medical history and when I got to the XY bit, he said: “You’ve given me an incorrect medical history. If you’ve got XY chromosomes, you’re a boy.”

I tried to explain but he wouldn’t listen. He said: “I don’t know what you’ve been told but you are a boy. That’s it.”

I was so ill and in such a vulnerable position. Even as I was weeping, he continued: “What do you look like? What are your breasts like?”

It was a nightmare. It seemed he wasn’t going to let me leave the call until I admitted I was a boy.

That was the beginning of my descent. Because it was a phone call and I never saw his face, he sort of crept everywhere.

He voiced my darkest thoughts, that I was a freak, unlovable. Because it came from a doctor, it felt like the truth.

I’d hear it more and more from other doctors: “You take these hormones, they’ll make you a girl... You fill three out of five criteria for being a girl... Thank God you’re pretty.”

I’d go for a cough and somebody would want to see what was going on 'down there'.

I became incredibly depressed - at my lowest points I felt suicidal. I felt it wasn’t OK to be Suz. I felt like I had to be hyper-feminine. I tried to have a higher voice; I made sure my hair was blonde and long and I starved myself. I thought I had to be a Victoria’s Secret model with a PhD.

I was in a relationship with a lovely guy and I didn’t dare tell him in case he broke up with me. The secret pressed down on me.

Things started to change in my third year at uni when my boyfriend moved overseas and I moved into a house with a group of close friends. They were amazing. I told them and they just made it clear that there was nothing to be ashamed of, it was something to celebrate.

I’m telling people to accept their bodies when I don’t accept mine"

My boyfriend and I broke up later that year because of the distance and the world didn’t end. I started my masters, working in politics, and writing a blog about cancer, mortality and accepting your body no matter what state it’s in.

One day I thought: “This is wrong. I’m a hypocrite. I’m not being honest. I’m telling people to accept their bodies when I don’t accept mine.”

So, I wrote a post on Facebook and, essentially, told everyone at the same time.

It was amazing. People responded immediately and said: “We just love you.”

I told my ex-boyfriend and he had only concern for me. He has now become a really close friend and a champion of intersex people.

Social media helped me find my community. Meeting intersex people in real life was like finally exhaling. While it’s good to hear positive stories, it’s also been helpful to hear people’s struggles, and to know I am not alone.

I’d felt so guilty for having suicidal thoughts – how dare I feel suicidal when I’ve survived cancer; I should be doing cartwheels.

But to hear other people felt the same validated those feelings and strengthened my resolve to fight for the rights and visibility of intersex people. It is not hard being intersex. What’s hard is how society treats us. Any mental health struggles I’ve had are because of how society responds to people like me.

Identity is complicated. I’m not just intersex, I’m not just a cancer survivor. None of us are one thing.

There was a time I used to pray 'make me normal.' But now I wouldn’t change a thing about my body, it’s given me so much more than it’s taken away.

Today I'm open with friends, at work, and in love.

I’m sharing my story because I want to end the stigma and work towards a future where we know, we celebrate, and we protect intersex people like me.

Intersex is not rare. It’s 1.7% to 2% of people, that’s what we’re talking about. We’re not unicorns, we’re just invisible.

If you've been affected by any of the issues in this blog, the BBC Action Line website has details of organisations you can contact for information, advice and support.

See more Special Reports from 5 Live