Sophie's Story

[Received March 2011]

Writing my story has proved hard but I have persevered in the hope that my story will help others touched by AIS. I was born with AIS of the Partial variety but yet it was many years before I knew the name or full significance of my condition. At birth, there were genital anomalies - mild hypospadias and small, slightly misshaped parts. I was assigned male.

When very young I was admitted to hospital for some procedure (to help me pee properly, I believe). I still remember this vaguely because it was very sore after and I did not like being in a strange place away from my family. I was afraid.

My childhood was an emulsion of happy family times and persistent bullying, especially at junior school. A group of boys living nearby would repeatedly name-call, their favourite being milli-willy [my name] and tell me I looked like a girl. They did not mean it nicely but I was quite pretty as a youngster, naturally feminine in looks and often taken as a girl when a toddler and at school. "Girl" was another nickname. None of this really fazed me so I ignored it. I was a placid, gentle child anyway and not easily provoked. I became deeply introverted.

The older boys were much worse, taking this bullying to higher levels. One summer's day they grappled me to the ground and pulled my shorts off to see what was 'down there' just for their entertainment. That was very humiliating and I did not tell anyone at the time. The taunting continued unabated but I learnt to shut it out. Most times I played happily with my younger sister far away from others and apart from wondering why I was different, I was a settled child. I was very naïve and innocent even for my age and this proved helpful. It protected me.

Ominously, puberty beckoned but after a while it was clear that I was physically developing female. I was acutely self-conscious of this and was torn between two conflicting concerns. I had wondered why I was not born like a normal girl anyway so I was happy that the changes happening were female but I also worried that these changes would not go unnoticed for much longer and that I would have to endure even worse humiliation. I hadn't forgotten that humiliating experience when my genitals were so publicly examined. I lived in trepidation.

It was also about the time when Caroline Cossey aka Tula was exposed as the Bond Girl 'who used to be a boy'. The story was told in a typical British tabloid way, making her out to be man who just felt like having a sex-change and become a woman. You can imagine the insecure reaction of my teenage classmates and how anxious I felt. Caroline had grown up just a few miles from where I later lived and karyotyping subsequently showed her to have Barr-Shaver-Carr Syndrome (XXXY) an aneuploid intersex condition related to Klinefelter Syndrome (XXY), which explains her 36-25-36 figure. She is not male either.

A year or two later and I was distinctly 'hippy' albeit in a tall, slender way. It was embarrassing as boys clothes did not fit properly, making school uniform buying awkward. My parents had never tried to straightjacket me into a fixed gender role anyway which was a relief because although I wasn't exactly über-femme in all ways I was definitely not masculine either. It seems funny on hindsight for me and my family to see how this development went unnoticed for a couple of years but eventually the social inquisition came and it was very unpleasant. Teenage boys are very hormonal, grunting instead of speaking, shaving and worrying over spots, having girlfriends and thinking constantly about sex. They also smell (I had an older brother so I know what they are like). I was skinny-hippy, lacking 'pheromones' and facial hair and also missed out on the exclusively male sexual experiences but confusingly I wasn't properly female either. If at birth I'd had more male development, then puberty was much more female. Neither the girls nor boys quite knew what to make of me. Nor did I.

Although happy at this development, it was so at odds that I reluctantly went to a doctor about this time. It was such a cold, humiliating experience that I didn't go back. I had a basic chromosome test but wasn't told the result. He said I probably would not put on weight until mid-life (I was skin and bone) and always be slim. His attitude was more one of see if it sorts itself out than let's investigate and treat. I wish he had.

Nothing much else happened until my late teens when a little belated virilization occurred. My shoulders filled out and I got some weak hairs up by my ears and on the edge of my lip. My voice still had not broken but dropped just a little at this point. I wondered if I was male after all.

College came as a big shock. People were even less accepting of the girl lookalike in their midst. I had arrived in the binary world of young adults with all their obsessive sexual desires and attendant insecurities and I didn't like it one bit. More accurately, I did not know how to live in it because I was uncomfortable: feeling lost as a male and a fraud as a female. I was wary of males and they were also a bit of a mystery to me. The limited virilization of my late teens had not affected my body much, my brain even less. Now I knew I wasn't male.

People can be so rude when sex or gender is involved, assuming an automatic right to your intimate details and will brazenly expect an answer to their most ignorant questions. I don't know how or why but something changed inside and after yet another 'you look like a girl/you talk like a girl' experience, I decided to live unambiguously as a female. It made sense to me.

The penny had dropped and most times I believe I made the right decision, although I regret my life being set between gender's Scylla and Charybdis in the first place. 'Choice' is not a word I would use to describe that decision, should any mistakenly see it as a lifestyle choice. It was a dilemma.

There were setbacks. Surgery was required and getting a referral through the NHS proved to be too big a headache so, after too much delay, I saw a Consultant from The Middlesex Hospital privately. He initially suspected Klinefelter Syndrome but my genital anomalies, hormones etc. didn't fit with KS. Tests showed I had what is now called Partial AIS but I didn't fully understand at that time (it was called something else then and I did not want to look further into it). Apart from elevated testosterone levels I had quite high oestrogen levels for XY. Maybe that's why I feminized so much during puberty or have a mostly female identity. I don't know. I was fortunate enough to come into contact with a few PAIS women raised male and quite a few Klinefelter women whilst at college as well as one CAIS and one Swyer woman. This really helped me.

My surgeon was pleased with his work and I have been fortunate not to have had many complications. Confidence grew, I even made friends. Still, I had to prove something to myself and I set off for London and visited all the well-known model agencies - I aimed high! In the end I couldn't go through with any jobs because I didn't feel comfortable with my body and I was scared of recognition and publicity. I didn't want to be Tula 2.

Living and working close to my family has been a reluctant game of chicken and occasionally I meet people who remember me from school. On the whole this is innocuous because they know how different I was but occasionally this complication has brought unjustifiable violence into my life. Twice this has been extreme but is in the past now so I don't talk about it. In fact, I've even found that intersex people can't always be accepting or understand that I did not choose to have a female identity or develop mostly female and go untreated until adulthood. I had no such choice.

I'm so grateful for the support and acceptance I've found in AISSG. Meeting so many AIS woman again (first time since college) has benefited me more than words can express. We share much in common such as fertility, bone density, HRT issues and identity crisis but one key difference in that I was raised male. Apart from knowing early on that something was wrong 'down there' (I had no big shock like many AIS women experience), there are consequences of having a birth certificate that says male. This causes major problems, from having to declare the condition when applying for a passport through to being unable to marry and adopt (I would love to do this). Although not clearly stated, the UK Gender Recognition legislation is specifically for those diagnosed with Gender Dysphoria and does not apply to intersex persons. This unintentional discrimination is something I am seeking to address with the aim of gaining access to amended birth certificates. I am hopeful.

I was born in an age where patients were seldom involved in clinical choices. I am not alone; many PAIS people in my generation have been forced to stay in an inappropriate gender and are wrongly viewed as transgender when they assume their rightful role. Sometimes the true nature of their intersex is withheld from them or psychological pressure applied to remain in their assigned sex for the benefit of others. After a childhood of excruciating differentness they are made to feel like gender criminals. Clinical terms such as 'undervirilized male' or 'low-grade PAIS living female' do not help us much either, indicating a failure beyond the physical realm to make it to an inferred manhood (however, I don't know what other terms would be better). My path from adolescence onward has been female and I am glad that those last-century ideas are being superceded by more patient-friendly protocols, including patient disclosure, gender options and delay of surgery wherever possible. This is positive change.

From what I understand of AIS, at birth I was a 'male' grade but puberty was more female than male. No one could have predicted this but intersex is so variable that I just wish it had been investigated . Sometimes I get angry about it making me a woman, sometimes I embrace it, sometimes I am just grateful I don't have to work at being a woman. All of these reactions are diminishing with time as I grow out of introspectiveness and into a confident version of me. I'm more than a condition, more than a woman and more than the sum total of my past. I am myself.

Now I am comfortable in my own skin. I do not blame my parents, I do not blame others, I do not blame my doctors and I've even stopped blaming myself and learnt to live with what I have. This is a gift from God. I realized what is really important in life much earlier than I otherwise would have done because of something called AIS. I have also met many precious, wonderful and inspirational people along the way. I am blessed.

My wish now is that a new generation of AIS affected boys and girls will be treated sensitively and compassionately so that they will not have the added handicap of being raised in the wrong sex, with the life-long consequences that this carries. That is my heartfelt prayer.

Having come through the tempest, Peace has been obtained. May you find it too. Much love, Sophie.

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