Janet's Story

[Received Sept 2007]

Prior to discovering that 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.

Shortly before the age of 10, I began taking tablets with hormones in them, which was related to my condition. My parents gave me a brief, truncated explanation of what they were for. The explanation was basically a half-truth smokescreen, and being that I was a trusting, naïve child, I thought no more about it. Then, 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 3 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 that 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, all-consuming, frantic anguish. These tears were joined by the tears of my mother, who also seemed to be taking the impact badly. My parents told me they had been attending the meeting of AISSG-UK that weekend in order to gain more facts to prepare for telling me. My father seemed far more positive about the future and suggested that I get in touch with the support group 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 and bad luck 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 before, became a source of constant irritation to me. 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 sister, who I was not close to, was also told about my condition, and she never mentioned it to me, nor has she ever mentioned it to this day, a fact for which I will never forgive her. Going through your teenage years seeing yourself as some sort of freak is bad enough, but doing it whilst knowing that certain family members don’t care about you is even worse.

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 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 3, 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.

This final announcement hit me hardest. To go 14 years thinking of myself as essentially female, and then having that brought into question with the fact that in terms of chromosomes, I was male, messed up my mind horribly. It still amazes me to think that to this day, the reality of that announcement did not plummet me into complete madness, but it certainly ruined my attitude towards other people, that’s for sure.

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, was perfect scope for various school bullies who gleefully informed me on a daily basis that I was a man. The impact of this, combined with the knowledge that I’d had two testicles removed from my body made my self-esteem plummet. So-called 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, and 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, as a patient with PAIS. Very little has been offered to me in the way of information about my condition, and the so-called experts are so uninformed that they have been unable to give me concrete advice on anything.

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 that I needed to use them in order to have a satisfactory vaginal opening, yet another consultant told me that there was 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 and that there would be 'scarring'.

My entire feeling is that the medical profession as a whole does not give a damn about people with Intersex conditions and instead prefers to treat them with disdain, dismissing them and refusing to acknowledge the seriousness of their condition. Just because people with Intersex conditions are not physically impaired in some way does not mean that they haven't got a hell of a mountain to climb. I think it's a disgrace that the medical profession, at least where I come from, has offered so little assistance. I have now resigned myself to the idea of never having a relationship with another human being because I am so unsure of myself and horrified at my general appearance. The medical professionals do not seem to care that they are dealing with lives, because to them it's just a job. But this is my LIFE which is being lived in constant limbo. I have absolutely no conception of who I am as a human being because of the uncaring way that the medical profession has treated me.

I became angrier and more bitter with every day that passed, horribly depressed. This led me to kick a glass door in my mother’s house to pieces, reducing her to despairing tears and me to an unbearably introverted wreck. Eventually, however, my mother bought her own house, which she decorated beautifully, and 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 friends 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, and besides, people are usually put off by how guarded and stand-offish I am anyway, believing me to be cold and lacking in emotion, never stopping to ponder that there may be a root cause, which people never do. I have difficulty trusting anyone.

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 in my intimate area. He wondered at 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 graduated from University with a journalism degree and failed to get a job. I still have few friends, but in any case, meet so few people that the opportunities for making them just aren’t there.

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.

It is difficult, if not nigh on impossible to make the best of things when born with an intersex condition. The fundamental purpose of human existence is sex/reproduction. One of these is extremely difficult for those with AIS to achieve, the other is impossible. How therefore does an AIS individual 'make the best of things'? Having read the various testimonies from various AIS individuals, I can conclude that few manage to have normally functioning relationships with other people, and fewer still manage to have long-lasting, successful relationships. This is due in part to other people's inability to deal with harsh facts and offer emotional support to those who need it. People would far rather ignore the unpleasant things in life, and I suspect this is why the majority of AIS individuals are destined never to find a lasting relationship.

Revealing their Intersex condition to another human being will mean that the individual concerned will always be at a disadvantage, and therefore there will always be an imbalance in the relationship. Such an imbalance means that it would be naive to believe that any relationship between an AIS individual and another human being could ever have longevity, because either consciously or subconsciously, that other person would always be viewing the AIS individual as a 'victim', and this would come back to haunt them repeatedly.

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.

I feel that it always tends to be the case that conditions which have great psychological implications always tend to be treated dismissively, not only by the medical profession, but by society in general. Depression is very much part and parcel of AIS, even if only if only for a while. For many AIS individuals, depression may be life- long and intermittent. Because it's still taboo, AIS individuals cannot receive the support from people in general that they deserve, because people in general are not aware of AIS. It would be highly productive if this were to change, but I very much doubt that AIS will ever be given proper recognition, out in the open, because anything to do with gender identity is always taboo with most people.

The slightest mention of anything remotely out of the ordinary automatically sparks a moronic, knee-jerk reaction in people, of fear and scorn, because people fear and scorn what they cannot understand.

As for support, we (AIS individuals) have none. Well, not from society anyway. If it's not a physical illness then people usually aren't interested. Leaving aside the risk of osteoporosis, which is alleviated with HRT, and the potential cancer risk, alleviated by 'gonadectomy', there is nothing about AIS which might endanger a person's life, in the eyes of doctors, anyway. So therefore it is dismissed. Of course, those of us who have had to live with AIS know fine and well that the psychological implications of AIS are, and always would be grave. There is no way that depression or at the very least unhappiness can be avoided if a person has AIS. But try explaining that to the masses.

In life in general, I've noticed that people who bleat and moan and self-pity are the very ones who seem to receive most sympathy and support, whereas people like AIS individuals who quietly go on with their lives, desperately trying to make the best of things and keeping relatively quiet about their problems are treated like crud.

I've known various attention-seeking individuals over the years who behave atrociously and actively bring misfortune upon themselves, then bleat and attention-seek, yet people crowd round to help them and listen to their bullshit. I, on the other hand, have kept quiet about my condition for my entire life, along with the various other things that have gone wrong for me. The result is that people have always trodden over me and used me like a doormat, treating me as if my emotions and feelings are of absolutely no importance.

This is a highly illogical world. I can't believe I've done the wrong thing in being brave and strong. I should have been cowardly and weak. Maybe then people might have considered my feelings more.

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