I’m trying to write about my experience of being a trans woman who also happens to be HIV positive; a ‘long term thriver’, I want to add my voice to the many celebrating and marking the celebration of International Women’s Day. I want to speak honestly but positively.
I was diagnosed in the early 90s before I transitioned and whilst HIV and AIDS were still considered to be inevitable bedfellows and bedfellows who would ultimately lead to death. Like grim twins separated by a few minutes. Upon diagnoses I was given a form called a ‘DS1500’ which was essentially the gateway to death benefits, I was not expected to live more than six months. It was fairly standard practice at a time when drug options were thin on the ground and when AIDS defining illnesses were commonplace. At the time of diagnoses my CD4 was almost in single figures and my viral load in the millions. I had thrush covering my throat and beyond, my stomach had virtually stopped working and I was losing weight rapidly. It made sense that I would be dead fairly soon. I felt like I could no longer eat.
Twenty five odd years later I am still here, in fact the older I get the more I thrive and grasp life with both hands. I feel successful, my drug regime has been the same and in place working for the past ten years and for all of those years I have enjoyed having an undetectable viral load.
Unfortunately for women, trans or cis; heterosexual, lesbian or bisexual it doesn’t carry quite the same signified weight. Or doesn’t appear to.
My healthcare over that time as a trans woman has been at best patchy, so often when I have asked for trans specific HIV advice I have been met with, “I honestly don’t know.” It’s scary when someone tells you they don’t know, its isolating to feel like you are a minority within a minority, I have often felt isolated being HIV within the trans community and isolated being trans within the HIV community. So I’m still not entirely sure of what interactions there may be long term between my being trans and my being HIV?
Despite being and feeling like I am a success, I miss, terribly miss, intimacy. Dating and sex as a trans HIV positive woman is a minefield. A minefield I am ashamed to say I think I now avoid.
A minefield I think I have avoided in truth for a few years now.
I work as a Transgender activist and campaigner around education and HIV issues, I constantly talk to people; large groups, small groups, adults and children about being aspirational, about being strong, sure and confident, yet I feel I have accepted a narrative that hurts. I feel I have accepted a narrative that has an implicit sense of ‘fear of rejection’.
A narrative defined by a weakness.
In some senses I suppose my fear of anticipated stigma gets in the way but in my lived experience stigma is still a very real and imposing threat:
The man on a dating site who I told about my status who reacted terribly violently, the plastic surgery clinics (about ten of them) whom I contacted enquiring about breast enlargement (my ‘turned fifty’ treat) all of whom turned me down because of my ‘posing a risk’, the GPs who for ten years laughed at me when I asked if I was able to start the process of gender realignment, the employers who told me never to mention to anyone about my status, the employers whom I never told. The insurance I still panic about trying to get, the dentists who splayed red crosses over my notes and cling film over the surgery and worse the people who say ‘why do I mention it’. .
These were actual events that shaped both my strength and weaknesses, my beliefs and my doubts.
Yes the very real impact of stigma has often made me feel that I live in a sphere beyond intimacy, love and sex. I have received rejection as a trans woman and rejection as an HIV positive woman. The intersection of both just feels like one conversation too many. Certainly, and I am not proud of it, I have too frequently walked away from the possibility of intimacy before the big reveals. There is no way to explain how it feels to be turned down or away because you have a virus
So my resolution this year is to be bolder but I am still a little confused about how to be.
I always felt like and was raised to be honest and upfront. So when I have tried to date I’ve said that I am HIV positive but long term undetectable, I have done this in person and online. And almost always its resulted in the other person saying something along the lines of, ” I admire your bravery and thank you for telling me but I’m not sure I can deal with that emotionally.” Deal with what I wonder as I walk back to the tube/car/bus?
I have been undetectable for ten odd years so I present no risk, I’m emotionally robust and self reliant so nothing to deal with there and I am happy and fulfilled so I don’t need to be saved or rescued by man or woman. I am just looking for a kiss, a hug, a night out, a night in, laughter and yes, intimacy.
In my mind when I tell someone I am HIV positive I secretly hope that they will see me as an all round great catch. A person who is complete and bold enough to carry her truth with dignity and pride. It still hurts when they walk away down the street or one message at a time.
So in order to be bolder to live an aspirational truth should I tell or keep quiet?
I know younger generations have a brilliant sense of an undetectable viral load as real erotic currency but I’m old school, a long term survivor, a long term ‘thriver’ and we had it drummed into us that we must tell first and await the invisible kiss later. Honestly I’d love to know what other people think.
Answers on a postcard please to:
‘Strong but fragile seeks similar for lifelong intimacy or quick, distinct intimate moments.’