Sarah Graham: My intersex experience

In an open letter to the South African athlete, Sarah Graham, who was born intersex, offers advice and encouragement for the years to come

Caster Semenya was expected to race on the 24 June (Getty)

You are a very special woman: an extraordinary athlete and an inspiration to your South African nation. That has not changed and nothing the International Association of Athletics Federations tests find under their microscope will ever take that away from you.

Whatever happens in these next few weeks, whatever the truth behind all the rumours, media leaks and gossip, I promise you will discover the truth that most human beings are kind-hearted and that the human heart is by far the most important human organ; it has no gender and it's not interested in your sex.

When I was 25 I found out suddenly that I am an intersex XY woman. I have a very rare condition called androgen insensitivity syndrome (AIS). This shocking revelation, after years of lies from my doctors, nearly killed me.

We have had very different lives and, of course, I can't imagine what it feels like to have soared so high, winning your 800m gold medal in such a spectacular fashion, and then having that great achievement pushed aside as the world's media descended on you, ignoring your feelings, confidentiality and basic humanity, and going in for the kill.

But just like you, Caster, I had never doubted my female sex – I have a female birth certificate and was raised as a girl and had no reason to question my biology. As an adult, I went into shock when my sex was suddenly questioned. And I couldn't cope with, nor accept, the news that my ovaries were in fact undescended testes. I left the gynaecologist's surgery feeling very alone in the world – a freak. My shame, self-hatred and sense of failure for being infertile ate at my already fragile self-esteem, driving me to self-harming behaviours: with alcohol and drugs, destructive relationships and putting myself in increasingly risky situations – tempting fate to destroy me.

The papers say you are now on suicide watch. Horrible though that is, as a counsellor, I'm glad to hear this. It's terribly sad, but up to 30 per cent of young intersex people do attempt to kill themselves. Even where there is good support in place – an endocrinologist, gynaecologist and psychologist working together in clinic is best practice – most intersex people and their families go through a very difficult adjustment period. Now 15 years on, and with the excellent support of Dr Conway and his team at UCL's Middlesex Centre, I am very happy, well-adjusted, recently married and I have turned my pain into my work – I'm a "wounded healer", helping others overcome painful challenges and be happy with who they are. Caster, I implore you, hang in there. It will get better.

I don't know your culture well but some people handle intersex much more sensitively than uptight White Europeans. Native American tribes call intersex "two-spirits" and revere us for being the best warriors and healers. Your South African sports minister, the Reverend Makhenkesi Stofile, made you a promise: "Caster is a woman, she remains our heroine. We must protect her." The world will hold him to his words.

Since you hit the headlines, every intersex person (that's about 4 per cent of the population) has been exposed to outdated, inaccurate, offensive words such as hermaphrodite. Self-appointed "medical experts", who often aren't working in this area of medicine, keep popping up to peddle prejudices and dangerous myths. Such as AIS XY women must have their testes removed straightaway. Wrong! We can keep them. It should be our choice, not that of doctors or fearful, ashamed parents. It means a slightly-increased risk of cancer, which can be monitored. But it's far better to produce your own hormones naturally rather than have a lifetime of HRT. I take a daily oestrogen pill and a small amount of testosterone gel. I'm a guinea pig. No-one knows what the future holds.

If you are a woman with testes, do not let the doctors, the IAAF, or embarrassed family members rush you into the operating theatre. You are lucky because you can choose to remain a woman with balls! One day you may even be able to laugh at this and enjoy the double meaning. But it will take a long time.

I didn't get given any choices. My doctors even lied to my parents and, aged seven, my "ovaries" were removed. We were told that if they weren't, I would "get cancer as a teenager and die". I am still traumatised by what happened in hospital 32 years ago: being treated like a fascinating "special little girl"/lab rat, prodded and poked by an army of medical students; held down and given an enema. And I can still picture the bloody scars on my little-girl body, and trace the start of the chilling loneliness; the only child in the Chelsea Hospital for Women.

Intersex is part of all creation and has an important place in the order of things. Operating on intersex children's bodies to "normalise them" is often damaging to future sexual responsiveness and sometimes fertility. It's not about what's best for the child or adult – it's politically driven, to make society feel safer and reinforce the gender boxes: male/female, pink/blue.

But the person most likely to pose a serious threat to and reject you – is you, Caster. If, in your hiding place, you can bring yourself to read and watch what people are saying, you'll find they are being kind. They are supporting you and sending you love.

Your head may be telling you that I'm wrong. And these next few weeks are going to be really tough as you wait for the IAAF Council to complete their examination of the "facts" and make their "final decision on this case".

One day you will understand you were made this way for a reason and you have more than one extraordinary gift to give to the world.

In love and in solidarity,

Sarah

Sarah Graham Solutions: sarahgrahamsolutions.com

Androgen Insensitivity Syndrome Support Group: www.aissg.org

The Intersex Society of North America: www.isna.org

The Middlesex Centre, UCL: www.uclh.nhs.uk/ middlesexcentre