Photo by Jelle van Leest

What follows is an adaptation of my contribution to Silent Tears which is a project by world-renowned Photographer Belinda Mason that highlights the plight of women throughout the world who have been subjected to violence which in my case was a Medical Violence. More information on the project can be had by following this link

In the year 2000 at the age of 37, I was diagnosed 47XXY which means I have one extra sex chromosome greater than the binary sexes of Male 46XY or Female 46XX, the concise version of what this entails is my body did not produce sufficient testosterone that would have allowed it to virilise in line with XY peers and in that absence my outward appearance developed along female lines, it was an appearance that was very obvious to all who knew me, including my wife, yet I was raised male and naively believed there were other males like me even though I had never met another.

So in 2000 when the Endocrinologist told me ‘Testosterone would make me a man and bring meaning to my life”  I jumped at that opportunity as all I wanted was to be ‘normal’ and I knew it was something I had never experienced before. Being told I was sterile did not faze me in the slightest, not least because I still felt like a child myself in a 37-year-old frame and was incapable of looking after a child when I could barely look after myself. Testosterone injections were initiated at 200mg every fortnight and within three months I was beginning to feel very uncomfortable about the entire experience. My phallus had overtaken my brain and the thoughts of sex and masturbation were a constant, I fantasised a lot about being a woman with a male partner to the point where I honestly felt as though I was losing my mind.

Upon mentioning this to my GP (General Practitioner) he formed the opinion my dosage should be lessened to 100mg over a seven day period, so basically the same amount but with great frequency. Within six weeks acne throughout my entire body had turned to enormous boils which were extremely sore to touch and bled whilst I slept. My thoughts on sex were now a constant and were only slightly lower than my thoughts on suicide. Upon mentioning this to my Endocrinologist he didn’t see at all fazed and said words to the effect “it was an initiation and within three to four years it would all be over and you will feel better” in reply I remember saying “if this is what my life came down to, then I didn’t want any part of it and that I would eventually find a means to kill myself”. From that revelation, I was referred to a Psychologist whose speciality was counselling Transsexuals and upon my second visit she disclosed I did not display any of the classical signs of being Transsexual, she could, however, see that I was suffering from severe anxiety because of my use of exogenous Testosterone and recommended that it be stopped immediately. When I advised my GP he said “my life would not be worth living without it” to which I replied ” if the only option was to continue with Testosterone, I would not have a life because I would be dead. And so it was that he ‘released’ me from his care saying there was nothing more he could do for me.

It was from this point forward that my life took a turn for the worse and I found myself completely confused as to who and what I was, I was however certain I was not the male person whom my doctors had believed me to be and instead saw myself as a combination of  both Male and Female but, neither one nor the other and because I was unable to pin that down, gender confusion seemed to consume my every waking moment. Without any doubt whatsoever Exogenous Testosterone was the root cause of my Dysphoria, the impact of which was like someone flicking a switch that awakened my inner soul, a soul that wanted no part in virilisation, it was apart of me that would eventually win out and guide me to where I presently am.

In desperation and with nowhere to turn I wrote a letter from the heart to a Gender Clinic and told them of my journey to that point and whilst they never really grasped the seriousness of what I was experiencing they were nonetheless willing to help and following several weeks of counselling I was referred to a Psychiatrist whose speciality was treating people with gender issues, he also had experience with XXY’s and well understood the anxiety caused to those who are administered Testosterone. My eventual diagnoses was Gender Dysphoria (Not Otherwise Specified, this classification was set aside for people who were born with Intersex variations and who had difficulty adhering to standard treatment paradigms). His subsequent referral to an Endocrinologist stated that estrogen should only be prescribed for a short time to counter the effect of the heightened Anxiety I had experienced through my use of Exogenous Testosterone, and in agreeing with the earlier Psychologists assessment said, I did not display the classical signs of being Transsexual. He was intrigued by my rejection of masculinity and more so how I viewed my duality of gender, it was an interest which saw him go on to write several papers on the subject which are published in the Australian & New Zealand Journal of Psychiatry as well as The British Medical Journal.

Such a pity my first attempt at visiting an Endocrinologist had not been warm and inviting as this new referral. in keeping with the Psychiatrist the new doctor had an equal understanding of XXY, he also had several XXY patients who struggled with Testosterone and under his guidance had been administering Estrogen for long periods of time. He paid little heed to the Psychiatrist’s recommendation that Estrogen should only be for a short time and said he was willing to leave me on it so long as it was benefiting me. Ten years on and with his support and guidance, I have finally become the person I had always known myself to be but had lacked the courage, vocabulary skill set and life experience in order to achieve it. Looking back on it all, I can quite honestly say I have been to hell and back and have proven them wrong, in that life does have a meaning and its a more positive one than anything I could possibly have derived from the administration of Testosterone and ‘simply’ being that male person whom they had wanted me to be.

A little over a year ago at The Australian Human Rights Commission Initiative ‘Resilient Individuals, Sexual Orientation, Gender Identity & Intersex Rights’ I happened upon the Psychiatrist who had listened intently to my plight and saw to it that I was placed in safe hands that would guide and make sense of who I was, he took one look at me and said “you’ve arrived”  I told him I could not have achieved it without his support, to which he replied ” I was a tough one to understand yet he was really glad to have experienced ME” to which I replied “so was I”

Candice

What follows is a commentary by Morgan Carpenter who along with myself is a board member of Intersex Human Rights Australia, Morgan is also its Co-Executive Director.

When a concept is new to us we tend to think about it in familiar ways, it’s only when we learn more that we understand differently. It’s only recently that people are beginning to understand the differences between being Gay, Lesbian, or Bisexual, and being Transgender, between people who are same-sex attracted, and people whose gender identity is different from that assigned at birth.

Being Intersex is a new concept for most folks, and so it’s often confused with those other concepts, but here’s the thing, Intersex people can be same-sex attracted, or straight, Transgender, or not. What Intersex people have in common is something different, something physical. Intersex people are born with sex characteristics that don’t meet medical or social norms for Female or Male bodies.

Those differences are stigmatised and so they are medicalised. So we talk about Intersex traits as relating to gonads, hormone response, genital or chromosomes. And we talk about Intersex traits in terms of diagnoses and treatment, of “disorder of sex development”, and medical treatments that don’t meet human rights norms.

Because Intersex is stigmatised, the treatment or even elimination of Intersex traits begins early: through IVF embryo selection, through terminations on grounds of  “serious genetic conditions”. Medical interventions include cosmetic surgeries that are known to lead to poor sexual function and sensation and hormone treatments to make someone “normal” without letting the individual make their own decisions about their body. Institutions from an Australian Senate Committee, to The Council of Europe and the UN body that monitors State actions against the UN Convention against torture, have condemned such medical interventions – but they continue today.

Women typically have XX chromosomes and Men commonly have XY chromosomes, but some people have other chromosomes, XXY is one of those traits where individuals have an extra sex chromosome. XXY is often diagnosed as Klinefelter’s Syndrome but the diagnostic terms presume the individual is male. Exogenous Testosterone is the standard prescription even applied to infants and without the kinds of counselling that can let the individual make their own choices about their identity and treatment. All people with Intersex traits can experience lifelong trauma after coercive treatment, or treatment based on ensuring we fulfil social expectations.

I first met Candice online at “Bodies Like Ours” a support group where we were both trying to come to terms with our bodies, and even more so with the medical treatment, we received. Candice was still trying to survive the effect of having been exposed to exogenous testosterone and I was recovering from the impact of multiple surgeries. Like anything else, some things get easier over time, and some things need to change to make them right.

People with low sex hormones like XXY folk are obliged to take one sex hormone or another for their Physical and Mental health. Both hormones testosterone or estrogen have a dramatical physical and psychological impact. Candice was placed on testosterone in order to make her a real man without any real thought whether it was the best choice for her. No choice was considered. But, when testosterone was causing so much distress and pain, estrogen had to be an option and that meant dealing with what people think it means when you don’t conform to expectations. Not just the expectations of her doctors but also those of society. It’s a curious thing that those doctors included newer ones to check her mental health yet they weren’t considered necessary when starting the previous hormone.

Candice is stronger as a result of her experience, more confident and the happiest I’ve ever seen her. Freed of an inappropriate hormone regime her friendship and company is a joy.

XXY folk and other people with Intersex bodies are able to contribute to society but fear of non-conformity, of benign genetic and physical differences, means that pregnancies where a foetus with XXY are often terminated. Natural human diversity should not be regarded as a pathology something to eliminate when instead, we need to celebrate the richness and breadth of human experience. If we can eliminate fear and stigma then the paths that we tread will be accompanied by far fewer silent tears. “-Morgan Carpenter