Real Voices interview: Mia

Meet Mia, a young woman with complete androgen insensitivity syndrome. She talks to Jennifer Trent Staves about finding out about her condition, what gender means to her, and why she is a bit like a flourless chocolate cake

Who are you?

My name is Mia. I’m 26. I studied biology and women’s studies at university and am currently applying to medical school.

What is the condition you’ve been diagnosed with?

I have something called Complete Androgen Insensitivity Syndrome. It’s a genetic condition, which means although I have both an X and a Y chromosome, my body doesn’t recognise any testosterone (often called ‘male hormones’) in my system, so I didn’t develop as a boy.

Some people call this a difference or disorder of sex development (DSD). Others call it an intersex condition. I just call it ‘my condition’ or ‘my AIS.’

What does it mean for you?

My condition means that I'm a girl. I was born a girl and I'm always going to be a girl. I’m a girl through a different pathway. I was born with a vagina and without a uterus. My gonads are more like testes than ovaries, although they are in a sort of a similar place where ovaries might be.

My internal gonads don't produce sperm so I don't have any way to make a baby myself. (That being said, I am so excited to adopt or go through surrogacy to make my family, when the time is right.)

I don’t have a period. I don’t have any of the cramps, or the hormonal aspects of having a period. I don’t grow very much body hair, and I don’t really have any body odour – which is great! I’ve been lucky in that I don’t need to take any hormone therapies and haven’t had any surgeries.

I feel blessed that I’ve had great support and access to recent literature and I’m able to make the most informed decision I can about my body, which is really what I’d like everyone to be able to say.

I think complete AIS is a pretty clear cut example of keeping the gonads being a good idea, whereas others may need to have gonadectomies (removal of gonads like the testes or ovaries).

Some people with other DSDs do choose to have surgeries and need to take hormones, and sometimes that can be difficult.

How did you first discover your condition?

It’s actually kind of funny! I remember when I was young, maybe three years old, that I saw my mother having her period. She told me that when I was older, I would have one, too. I had always wanted to get my ears pierced, so she told me I could get my ears pierced when I started my period.

I was about 15 or 16 and I wondered why I hadn’t gotten my period yet. We went to the doctor and they couldn’t see any reason why. We did a few tests, and I had an ultrasound, and that’s when we all realized I didn’t have a uterus. I will never have a period.

When I found this out, I turned to my parents and said ‘We are getting my ears pierced today’! And we went and did it right after the appointment!

How do you explain your condition to the people you know?

 

I’m like a flourless chocolate cake. I might not have flour, but it doesn't make me any less of an amazing cake.

I share information about me when it feels right. I don't have to talk about it in entirety to relate to people what it means. It depends on who I’m talking to.

I might say to someone: 'I don't have a period.' And I'll share that part about me, because plenty of people don't have periods for many different reasons. Some people take hormones and birth control to suppress periods. Other people have different conditions or don’t get a period because they run a lot and are really, really athletic.

I don't have to go into the specifics of it, necessarily. In the end, if anyone asks me and presses me, I can just say 'I don't have periods, and my doctor says it’s fine.'

And I don't have to share beyond what I'm comfortable. Other times, I may share that I can't have kids to someone if it comes up and it feels right. I don't feel like everyone has to know about it. It doesn't change my first 16 years before we knew, and it doesn't change who I am and how I grew.

Why do you want to use a pseudonym when talking about your condition?

The main reason that I want to use ‘Mia’ is that I want to be part of informing someone myself. I like to be a part of educating someone, laying that groundwork, helping them know what intersex or DSD (differences in sex development) means.

Not even all my family knows about it. I don’t hide it from them but I don’t think it changes who I am. It’s just how my body developed and how I'll make a family. And, it’s not the most important part of who I am. I’d rather “come out” to people as loving cooking, singing, hiking, medicine, school, and warm cuddles! My condition is just a background of how I grew.

I loved my biology classes at school, though part of it was always very challenging for me because some of the textbooks had very limited discussions of DSDs like mine, of conditions like mine. I would read them, and I often found myself wanting more. I didn’t feel satisfied with the limited depiction of what the books said about my condition and how they were talking about it.

So it’s understandable that many people don't really know what it means to have a condition like mine or another DSD. But it’s not the same thing as saying ‘I’m [insert other identity category]’ such as lesbian, gay, bisexual, or transgender. It doesn't really have the same understanding culturally, and it can be a real challenge to figure out how to explain it.

What does the distinction between sex and gender mean to you?

This is actually very important, and a lot of the stigma comes from when people don’t understand the differences. Sex is about the body: how the body grew until birth and after birth, how your body responds to genetic information to develop its internal organs or ‘lower half plumbing’. I personally don't think it matters if you have x chromosomes or y chromosomes. What matters is how your body presents itself and grows.

That connects into gender – which is how someone feels in their body and the deeply held understanding about who they are.

There’s a really cool graphic called ‘The Genderbread Person’ that discusses some of these areas of sexuality, gender and sex.

What would you say to other young people who have either the same condition as you (or another DSD)?

I’d say reach out to others around you! I love that I've met friends from around the world with conditions like ours.

Having friends with these conditions isn't just talking about having a DSD. Sometimes it's about not talking about it – just having it as an underlying or unspoken thing.

Some of us know what it's like to feel left out of discussions about, say, menstrual cramps. We share some of these experiences, sometimes without even having to talk about it. And we can make jokes and let off steam if we need to.

I’d also say to love yourself as you are! I like to think about it in terms of chocolate cake. There are many different ways of making a cake. You've got store bought chocolate cake: a mixture that comes in the box, to which you add eggs, water and oil. You mix it together, put it in the oven and out comes a cake.

Well, I’m a slightly different chocolate cake. I’m like a flourless chocolate cake. I might not have flour, but it doesn't make me any less of an amazing cake. In fact, I would say that I like flourless chocolate cake more than I like standard cake. I really do >I learned the recipe during a visit to France.

So in some ways, my difference is a feature. It's something that's really great about me. It's cool to be different – flourless chocolate cake isn’t any less of a real cake – and I’m no less of a real woman, my body just took a different route to grow.

Further reading

About this resource

This resource was first published in ‘Sex and Gender’ in November 2014.

Topics:
Ecology and environment, Genetics and genomics
Issue:
Sex and Gender
Education levels:
16–19, Continuing professional development