Sophia's Story

[Received Jan 2004]

Today I was thinking about how far things have progressed for me since joining the [UK] AISSG. I am not sure if this is suitable for the website, but I felt it was perhaps a positive thing for me to reflect on the past few years and how the AISSG has helped me.

Actually I woke Up!

I ask myself "Did I need to write this set of memories?" Well perhaps, if only to draw a distinction between living reality and medical myth, as well as my own misconceptions.

I cannot really give a testimony of my life because there is not that much to discuss other than my transition from being bitter and angry to learning not to be.

In am deficient in an enzyme known as "5-alpha reductase". In plain English this means that while I have XY chromosomes, I was not born with a fully male body. I was born with ambiguous genitalia. Medical myth has it that [with this diagnosis] I would have been born outwardly female and would grow a penis at the onset of puberty. That did not happen! What actually happened was my being surgically "corrected" at the age of 18 months old. This took the form of what was officially described as a "hypospadia repair" (butchery would be a better description).

Later in life, and after many painful complications, I opted for feminising surgery. I have no doubt that some in the wider world would find my actually seeking and consenting to surgery of this kind to be somehow immoral. Well they would I suppose. Society does not like people controlling their own bodies.

If I have anything to say about myself, it would be my inability to accept that the medical profession has the right to intervene in a way that is not helpful, and then to persistently lie about what they have done. You see with me there never were any "gender" issues, as the medical profession would have you believe. The "gender" issues were in their minds, not mine. "Gender" was the excuse that was used to justify answering "no" when I sought to bring the pain that resulted from the "surgery" to an end. So I will be honest. The "Pink for girls, blue for boys" and "Aha, this child is a sociomedical emergency and must be made to fit!" mentality is offensive to me.

Basically the issues are not "gender" or "transgender" or "sexual" with me. No, the issues are far less romantic, and probably more stigmatising in this politically correct age. You see it was being surgically altered as a child, and then lied to, while a lot of people were all hung up on this concept of "gender" that upset me. When at the age of about five I was rolling on the floor in agony, because my bladder was retaining too much fluid and my kidneys were at risk, I vividly remember people talking about "How confusing it must be" and "What toys will they play with". If the notion of playing with either toy guns or barbie dolls while hooked up to a dialysis machine is the "gender" model of "normality" (kidney failure was a big possibility at this time) then something is very wrong with the way medical priorities are set up.

The assumption that I was somehow mentally "disabled" was prevalent at this time too. I remember when, at school, some aspects of my medical history came out I was put into the remedial classes. What my mental abilities have to do with my reproductive tract is beyond my comprehension. But it does raise some obvious questions about the way society perceives the relationship between brains and gonads.

You see that is the sorry story of my life, really. I had and have many abilities, I could have been seen as a "gifted child" were it not for the fact that people associated ambiguous genitalia with mental dysfunction. I never had any interest in toy guns or barbie dolls as a child, I don't describe myself as "androgynous". That is social politics, something I have really felt unhappy about. I describe myself as someone who was the victim of a misinformed medical profession and a conformity obsessed society. The problem is not one of "social interactions" or "sexology". The problem with me was being born with a metabolic condition that has symptoms people were all confused about. I never felt like a "little girl" or a "little boy". It was at an early age I just became numb to such notions. I actually thought the rest of the world was pathologically obsessed. I was sort of living in some nightmare populated by blank eyed zombies who saw nothing other than "sex" and "gender". And let's be honest here, was that the sort of thing a child should have to put up with?

There is a positive side to my little tale however. I despised my parents with a passion, and sadly I still find it hard to forgive them. But my past tendency to regard parents of children like myself with deep suspicion has changed dramatically and for the good. (More on that later).

You see I had to get autonomy from my parents before I could be allowed to decide "what was what "with respect to my body. And my own parents were not exactly enlightened. The endless secrecy, the lies, whispering, the "Oh it is just a small problem" or "Growing pains" when having my bladder drained, did not wash, quite frankly. And the rantings of the gender obsessed in the 1970's - people like Germaine Greer and Janice Raymond - served only to make me more angry toward the notion of "boy" or "girl" as an enforced concept. When I studied the biology at university the whole foundation of the lies fell apart. The "XX makes a girl and XY makes a boy" [statement] was the first thing that was revealed as a complete lie. After studying genetics it became evident that sex determination was dependant on many factors within the genome, or genes within the "autosomes" (the chromosomes other than the 23rd pair). Cynicism was an understatement when describing how I saw "sex" and "gender" as both biological and social entities. To me they were an instrument of control used by big people to control little people. The actual biology was, to my mind, more fluid, evidenced by the circumstances surrounding my birth basically.

Getting told what had actually happened was a bit difficult, well almost impossible really. People would just not talk. If they did, it was the usual superficial rubbish about "gender" and little about what had actually happened. For me the situation was quite simple, not having my parents around meant, to many medics, that I was not to be involved in knowing the big secret. Getting the big secret out of my parents was not an option. I eventually got the diagnosis (or rather the diagnosis [was] finally mentioned) when I had various tests involving my urine. Dyhydrotestosterone DHT levels were very low, while Testosterone levels were a little higher, well considerably higher. This means I did not develop in a masculine way, because it is DHT that makes the real difference [in the development of male external genitalia]. The enzyme that makes DHT from Testosterone is 5-alpha reductase. You would not believe it really, a simple urine test for hormone levels, when done outside the Area Health Authority that initially dealt with my case, provided the opportunity for me to get to the truth. It took over 20 years for me to find out. That is a scandal in my opinion.

Things did take a positive turn in 2001 when I found out about the AISSG. I remember turning up to a meeting after numerous email conversations with _______ [group member]. And her claim that it would "change my outlook" (something at the time I regarded with my usual jaded scepticism) actually turned out to be true.

It was not a case of feeling as if "I suddenly belonged", as most of the women there had CAIS. Basically, 5-alpha is quite rare. But it was the case that I felt as if I had come in from the cold. I was quite dishevelled. I turned up wearing scruffy clothes, had about 6 cartons of cranberry juice, and a few single-use catheters (the surgery I had recently was a long time in healing). My kidneys were playing up as well. Of course I still had all that when I left [the meeting], so I did not walk away from that meeting a reformed character, I was bitter and cynical, in a long term sense. I arrived home on Sunday night still in a mess, still drinking gallons of fluid and still passing acid for urine. I was still very unhappy - I didn't expect anything else.

But something had changed, the fact that I met the parents in the AISSG. One couple in particular sticks in my memory. They were the Mr and Mrs Average I would in other circumstances have felt uncomfortable with. They turned out to be the most caring and kind people I had ever met. I realised I had been a bigot, to be honest. What had happened was that the medics had given them the same mindbending psychobabbling torment that my parents had received. And yet their daughter was so happy and comfortable with her life. Why? Because not all parents were like my parents. Most parents are not the sort of psychologically messed up people my parents were. Believe me, that was a revelation to me, this meant a lot more to me than any of the health issues. I must have spent two hours in the bathroom crying my eyes out, simply because there were people in this world who had children who were diagnosed with something like the condition I had, and who loved and cared for them. I owe that couple a lot, for making me realise something that I needed to realise. You see that was what the AISSG did, there was no softly, softly "Oh you poor thing, have some self pity". Far from it, I had to re-assess a lot of things in my life, my opinions, and my anger. I had to confront issues that really hurt me as a child.

The next time I attended a meeting was again a mental roller coaster. People I had felt scared about, or was nervous talking to, turned out again to be caring human beings, at the centre of this was _______ [group member], telling me about how life is not as bad as I think it is. This is all very emotional for me because up until I actually met people who knew what this was all about, I was completely alone. And people I felt I would regard with suspicion turned out to be people I have the deepest respect for and, I must confess, some gratitude as well. Children who were born like me, or born in such a way as to be stigmatised by the medical profession, had grown into wonderful people, and the parents were the most supportive and understanding people I had met.

Today I have to say that I am still a bit pushy, I still grill medics at conferences, I still argue with medics in consultations, I still harbour a lot of, let's say, scepticism about the notions of "sex" and "gender". My body is still a mess with numerous scars, my mind is also scarred by what happened to me as a child. Something has however changed, for the better. I finally realise that things are improving, not just in my life but in the lives of others. You see the secrecy and the lies, or "non-disclosure" causes so much pain for everyone concerned. I have met, in the past two or three years, people who were all victims of that, who showed me that they could overcome it.

So really I am unable to give any story of my life for any "further understanding" because I have learned it is me, myself who has had to learn a lot about people. Truth is, if I was to say that the AISSG had prevented me from continuing on some self destructive path which would have ended in suicide, quite frankly. This is perhaps the only honest and truthful thing I can say. I know it sounds like some semi religious advert, but sometimes there are people who can make life seem different, and make you realise that life is not all bad. My dignity has been what has mattered to me, and I feel that all the people at the AISSG have given that back to me. That is just how things have happened, and I am thankful that this was the way things worked out.

Sophia