'I was treated like a circus sideshow'

Janet (who wishes to remain anonymous) knows how Caster Semenya feels. She describes the trauma of growing up in the medical hinterland between the sexes

Saturday 12 September 2009 00:00

Prior to discovering I had androgen insensitivity syndrome at the age of 10, I was a happy, outgoing, confident child, with a lust for life. I enjoyed speaking to people, I was daunted by no one. Nor did I have any particular inkling that I was in any way different to my peers, apart from the fact that I was slightly taller than average.

When I was 10, my parents sat me down and told me (some aspects of) the truth. I had a condition called "androgen insensitivity syndrome", which had been detected at the age of three when I went into hospital with a suspected hernia. I had no womb or ovaries, a vagina of dubious depth, I would never have children, or a period.

I can still recall to this day the effect this announcement had on me, especially physically. I felt winded, as if I had been punched in the stomach really hard. A sick, nauseous feeling then swept over me, accompanied by burning tears of intense, frantic all-consuming anguish. These tears were joined by those of my mother, who also seemed to be taking the impact badly. My father seemed far more positive about the future and suggested that I get in touch with the Androgen Insensitivity Syndrome Support Group (AISSG-UK) so that I could contact people with my condition. At the time, I was too distressed and full of pity and hatred to even consider this.

My memory of the rest of that day is hazy, except that I lay in bed at night, crying and wondering "why me?", full of sickness at the injustice of it. And thus, the transformation was complete. Almost overnight I became deeply introverted and outrageously bitter towards everybody and everything. My tallness, which had never bothered me, became a source of constant irritation. I hated everything about my appearance, from my height, to my round face, to my big feet, to the puppy fat of my early adolescence.

My parents had not, in fact, given me the whole story, but rather held certain details back for a later date. I don't necessarily blame them for this, since I believe they did what they thought best. Nevertheless, further revelations at various intervals did nothing but upset me and further increase my self-loathing. There was the announcement that I would be on hormone replacement therapy (HRT) for life; the announcement that it was not certain whether my vaginal opening would be satisfactory for intercourse; then finally, and worst of all, at the age of around 14, I was told that my hospital visit at the age of three, with a suspected hernia, had revealed that I had, in place of ovaries, two internal, undeveloped testes, which surgeons subsequently removed. Various childhood hospital visits have given me a lifelong, morbid fear of anaesthetic.

My teenage years brought further turmoil. My parents' marriage, which had always been rocky, disintegrated completely, and my mother and I had to move into a one-bedroomed flat in the dirtiest, most scum-ridden area of town, surrounded by drug dealers. To make matters even worse, I was slightly overweight at the time, and this, combined with my height and a short haircut, provided perfect scope for various school bullies who gleefully informed me that I was a man on a daily basis. The impact of this, combined with the knowledge that I'd had two testicles removed from my body made my self-esteem plummet. Medical care for my condition was also woefully sparse, and this was the very point in my life where a bit of counselling or advice would have benefited me most. I simply did not receive the care and attention I should have.

I have found the attitude of medical professionals to be deeply unsatisfactory. At best, I have been treated with nonchalance, at worst, spoken about as if I am some sort of circus sideshow. The most galling thing is the lack of information and support that so-called consultants have offered me.

Even at the age of 23, I am still completely in the dark about all matters regarding the possibility of me having a sex life. I was handed some dilators by one consultant and told I needed to use them in order to have a satisfactory vaginal opening, yet another consultant told me there was already a satisfactory vaginal opening. And I was supposed to have had a vaginoplasty when I was a child, which apparently hasn't even been of any use. To make matters worse, I have reason to suspect that the external appearance of my genitalia is unusual, that is to say different to the average. But, lo and behold, I have been unable to get a straight answer out of any of the medical professionals about this and have even been told by a surgeon that it was not possible for me to have a clitoral recession [reduction of the clitoris] and that there would be "scarring".

I became angrier and more bitter with every day that passed, horribly depressed. I somehow managed to do consistently well in exams, achieving good grades and excelling in English. At 16, I began a part-time weekend job in a supermarket whilst remaining on at school. By this point, I had no friends at school, having fallen out with everyone I had ever been friendly with.

I did, however, make several friends at work, and began going out with a man named Andy, my first boyfriend. Apparently, someone found me attractive. The most I did with Andy was kiss. Once, on Christmas Day, he visited me at home and we lay on my bed, kissing. Anticipating what would inevitably follow, I bolted up and left the room, making a flimsy excuse about needing the toilet, leaving Andy looking confused and offended. We broke up after about three months and I remained a virgin. The reason for this was that I hated my genital appearance, particularly what I guessed to be a longer than average clitoris. I also envisioned my vagina being too short for intercourse, and a potential partner assuming I was some kind of transsexual.

I went through the rest of school with no friends, but got the grades to go to university, to study journalism. Initially, I made friends at university. But then the people I befriended left, and I was on my own again, making no new friends. To this day, I feel so lacking in confidence that I have trouble making friends.

I did moderately well at university, had a couple of friends in my hometown, and at 20, some four years after my first boyfriend, I began seeing a man called Derek. I slept in a bed with Derek, which led to heavy petting and him touching me intimately. He wondered what my overly large clitoris was, first speculating that it was a cancerous lump, and then hinting that he thought I was transsexual. Needless to say, this killed dead any chance of us having sex, which was probably just as well, as he turned out to be a compulsive liar, a cheat and an alcoholic. I have never been out with a man since, and that was three years ago.

I have been unemployed for a couple of years. My mother and I have yet again had to move into a small, one-bedroomed flat due to lack of money, and I see very little chance of me ever having a relationship with a man again, unless I were able to have a clitoral recession to make me feel better about myself. Although I long ago accepted my inability to have children, my sexual inexperience plagues me, making me bitter and unhappy. I am hostile to men because of this, and find it difficult to make female friends due to my difficulty in trusting people and my self-esteem issues: feeling "different". I have love to give, but am unable to give it to someone and suspect that I may never be able to. The idea of trusting someone enough to make them aware of my background almost seems farcical.

I have good days and bad days. On a bad day, I idly think to myself that I would not particularly mind dying, and envision myself one day committing suicide, when my mother, the only person who ever cared about me, is no longer alive. On a good day, however, I feel confident in my goal of one day being a singer-songwriter, and I feel proud of my lyrics, resolute in my goal of bringing them to the world and singing on stage. This would probably save me. I even sometimes hope that I can one day love someone, and be loved back, more like the vivacious, smiling-faced child I once was.

For more information, see www.aissg.org where a longer version of this story appears.

Explainer: Androgen Insensitivity Syndrome

The controversy surrounding the gender of the world 800-metres champion, Caster Semenya, while humiliating for her, has focused much-needed attention on the plight of those born of indeterminate sex.

The International Association of Athletic Federations confirmed yesterday that "gender verification test results" on Semenya will be examined by medical experts. Reports in the Australian press suggested that though she has the external appearance of a woman, Semenya has no womb or ovaries.

As many as 4 per cent of people are born with neither a clear male nor clear female identity, according to the Gender Trust. Most may be unaware that they are classified as "intersex" and suffer no discomfort or distress as a result. But for others, such as Janet, whose story appears on this page, the implications can be profound.

A diagnosis of intersex is made when a person is genetically, biologically or physically different from the accepted norms. True hermaphrodites, with both sets of genitals, exist only in mythology, and the term is loathed by sufferers, who consider it medically inaccurate and demeaning.

However, some babies are born with ambiguous genitals which leave their sex unclear. They may resemble those of a female with a large clitoris and the labia fused together, or they may look like those of a male with a small penis and an empty scrotum. Surgery may be carried out so the baby can be assigned as either male or female.

Others are born with genetic abnormalities. The sex of a baby is established in the womb according to whether they have an XX chromosome pair (female) or XY (male). The commonest gender disorders are chromosomal abnormalities such as Turner's syndrome (X0, where the second X chromosome is missing), which affects one in 10,000 girls, and Klinefelter's syndrome (XXY or XXXY) affecting one in 1,000 boys.

Girls with Turner's syndrome mostly have normal genitals but the ovaries do not develop and they remain infertile. Boys with Klinefelter's syndrome may have small testes or produce low amounts of testosterone and can develop breasts. They may also have signs of a womb and ovaries.

People with Androgen Insensitivity Syndrome, or AIS (one in 20,000 births) – as described by Janet – are genetically male (with the XY chromosome) but due to a failure to respond to testosterone do not develop male genitals and at birth appear female. They are thus usually raised as girls. They can develop breasts at puberty, but the vagina is small or absent, and they do not menstruate. Some AIS women have had modelling careers because their lack of male hormones means they are unlikely to develop body hair and are less prone to skin conditions like acne. But society is often unkind to people with such disorders.

Jeremy Laurance, Health Editor

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