What follows is an adaptation of my contribution to Silent Tears a project by renowned Photographer Belinda Mason highlighting the plight of women throughout the world who have been subjected to violence, in this instance, Medical Violence. Further information can be found here
In the year 2000 at the age of 37, I was diagnosed 47XXY meaning I have one extra sex chromosome greater than Male 46XY and Female 46XX. Although I was raised male my body did not produce sufficient testosterone that would have allowed it to virilise in line with XY males and in that absence my outward physique developed along female lines, it was something that was obvious to all who knew me, yet having been raised male I had little choice but to put it to one side and hope there were other people like me whom I had yet to meet.
When the Endocrinologist informed me ‘Testosterone would make me a man and bring meaning to my life” I jumped at the opportunity as all I had ever wanted was to fit in 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 albeit a 37-year-old child and felt incapable of looking after another when I could barely look after myself. Testosterone injections were initiated at 200mg every fortnight and within three months I had begun to feel very uncomfortable about what the Endocrinologist had said. My phallus had overtaken my brain and the thoughts of sex and masturbation were constant consuming my every waking moment, my thoughts on sexuality firmly centred on me being a woman in a heterosexual relationship, I honestly felt as though I was losing my mind.
It was from this point forward my life took a turn for the worse and I found myself really confused as to who and what I was, however, I was reasonably certain I was not the male person whom doctors had believed me to be, and from there it seemed inevitable this would send me down an unchartered path of dysphoria.
In desperation and with nowhere to turn I wrote a heartfelt letter to a Gender Clinic and told them of my journey 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, I was surprised to learn he had previous experience with XXY’s and well understood the impact testosterone would have on an individual who wanted no part of it. My eventual diagnoses was that of Gender Dysphoria (Not Otherwise Specified) a classification set aside for people born with Intersex variations who had difficulty adhering to standard treatment of care. His subsequent referral to an Endocrinologist stated that estrogen should only be prescribed for a short time to counter the effect of heightened Anxiety I had experienced. He agreed with the earlier Psychological assessment said, of not displaying the characteristics of Transsexualism. He was intrigued by my rejection of masculinity and more so how I viewed my gender duality, it was an interest that saw him put pen to paper and write several articles published in the Australian & New Zealand Journal of Psychiatry as well as The British Medical Journal.
Such a pity my initial attempt at visiting an Endocrinologist had not been so warm and inviting as this new referral. in keeping with the Psychiatrist, this new doctor shared a mutual understanding of XXY, informing me he 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 for as 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 and life experience in order to achieve it. Looking back,I can quite honestly say I have been to hell and returned and in that process have proven them wrong, that there is a life after testosterone one that’s far more rewarding than anything I could ever have achieved from heeding a doctors advice and staying with the program.
A little over a year ago at The Australian Human Rights Commission’s initiative ‘Resilient Individuals, Sexual Orientation, Gender Identity & Intersex Rights’ I happened upon the Psychiatrist who had listened so intently to my plight and saw to it that I was placed in safe hands that would eventually guide and make sense of who I was, he looked at me and said “you’ve arrived” I told him I could not have achieved it without his support, 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”
Morgan Carpenter Co-Executive Director of Intersex Human Rights Australia was invited by the project to comment on my experience, this is what he had to say.
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