HIV for me has always felt simultaneously impossible and inevitable.
Impossible, because like so many of us who are young and privileged with good health, we feel invincible. We are reckless and adventurous with our bodies. We test them again and again, and perhaps come out bruised but none the worse for wear. We take for granted these feats of resilience. Take for granted just how finite and precious good health is. Although we know something could happen, we doubt that it will happen. Especially when you’ve rolled the dice many times before, and you’ve come out fine. This is where impossibility sat, in the arrogance of youth and the privilege of good health. An unspoken confidence that sat uneasily next to my disquiet around HIV and sex. An arrogance that was the foundation of my relationship to safer sex.
When it came to safer sex, I was good but not great. Like so many of my generation, HIV wasn’t a terror, but had instead transformed into an anxiety. A ghost looming in the background, semi-present. Condoms were the ideal and were used when everything was going right. They stopped that feeling of guilt the next day and that inevitable question mark that floated over every cough or cold until the reassurance of your next test result. However, at times they felt like a barrier to things other than infection. It’s hard to pinpoint one thing that inspires not using a condom; egoism and embarrassment about the fragility of alcohol fuelled erections; a shortcut to a feeling of physical and emotional intimacy, a hollow performance of trust too readily given; a submission to the inertia of a lust and in the darker moments, a reckless act of potential self-harm. I’ve been subject to each of these in the past, but they were the exception — especially as I grew older and my sex life become more considered and more confident.
Still a sense of inevitability persisted. It would sit with me in every clinic waiting room. Irrational and persistent. I was outside of Australia for when PrEP was introduced, but I remember reading about the shock regarding the number of gay men that wanted to participate in the trials. I can understand how the demand for PrEP far exceeded expectations. It’s a novel and powerful solution, not only for a spread of HIV, but to this shadow of anxiety. It felt like a revolution upon my return. I’ve spent the last 4 years mostly in Indonesia, a country where access to PrEP is sadly limited by restrictive costs and inert bureaucracy. Coming back there was a sense of liberation in the air. PrEP and U=U had worked in partnership to shake off the ominous lurking feeling that had followed me. I’ve written before about this feeling — how as a gay man HIV shapes your life no matter your status but returning home it seemed like story had reached a new chapter, both for myself and for the wider community.
I returned to Australia from Indonesia just before Christmas. I spent Christmas with my family and then the lead up to new years eve with friends camping on the beach. Returning home after days in the sun I was feeling exhausted and feverish. I woke up on New Year’s Eve with a rash. I spent the countdown to 2019 in bed. I thought that all the emotional and physical exertion of transporting a life was catching up with me. I went to the doctors a few days later. The doctor advised me that it was a reaction to a viral infection and that it should clear up in a few days. I requested a sexual health screen as an afterthought. Normally I only use sexual health clinics, but I didn’t think I had anything to worry about. I was overdue for my 6 monthly check up and I was back in the land of free healthcare. My gut seemed to know what had happened when I got a phone call a week later. The next morning, I sat in a doctor’s office and heard the words I had been so anxious about, one of my HIV tests was reactive.
That was 2 months ago now. I’m HIV positive and it’s a reality I’m still processing. It was a prolonged period of finding out. My results were messy because they caught the infection so early. It took a few weeks to have the confirmed diagnosis. Working for the last decade in sexual health and queer advocacy has meant that conversations about HIV can feel common place and mundane. Receiving my confirmed result from my doctor had all the emotional shape of an office meeting. The support services I received after my diagnosis were great but it’s hard to control what moment will finally take something as mythologised as HIV for a gay man and allow reality to break through. For me, that moment came in sitting in an after-hours hospital pharmacy. It was the first time I was picking up medication. It was quiet. It felt cinematic, a wide shot held on the mundane to force introspection. My name was called, and I was matter-of-factly handed a brown paper bag. That’s when it felt real, permanent. The beginning of a ritual I will repeat into the foreseeable future. I didn’t cry but It felt like hurt. My emotional response was in conflict with my contemporary understanding of what it means to be HIV positive. I stood there, a young educated man, holding a brown paper bag of free, patented medication in one of the worlds leading countries in HIV health care. This shouldn’t feel like hurt. I took a deep breath, reminded myself I was in Australia and then quickly found a beer.
As I mentioned earlier, I have recently returned from Indonesia. In my time there I saw far too many young men die. Many at a distance. Sudden stories of hospitalisation, late diagnosis, complicated co-infections. So often these stories were shared with the hushed tones that allow mythology to grow. Stigma around having HIV is so overwhelming that people speak in codes.
It was a chest infection.
It was TB.
Worse still, people returned to their homes in the small towns of Java, or Sumatra, only for you to hear months later they have passed away. The reason unconfirmed but the possibility lingering over the community. Young men in their 20s. It’s endlessly frustrating and devastating especially as HIV treatment is free in Indonesia. The resources are there for people to live a long life, but this pervasive fear smothers and strangles. For far too many this fear makes them unable to engage with what a life with HIV might possibly look like and so some people choose inaction instead. This is why returning to Sydney felt like stepping into another world. The narrative of HIV, the stories we are told, the stories we tell ourselves are so vital. They shape the entire experience of what it means to live a life with HIV. I moved from a place where the weight of death still hung heavily over the community, to one where people are finally able to show what a live with HIV can be — a life that is long and healthy. Of course, the reality is, these are both the real world. We now have the tools and the knowledge to completely change the story of HIV in every part of the world, but the pace is far too slow, and the distribution far too uneven. Both these narratives are true, with treatment HIV is now a manageable chronic disease, and in 2019 large numbers young people are still dying HIV related deaths.
2 weeks ago, I was seeing an old friend, an ex-lover. We had had dinner, and a few drinks with friends. It had been a few months since we had seen each other, and a lot had happened to both of us in that time. We had both moved cities, moved countries. We knew we should sleep but we were overexcited from seeing each other and were wide awake. Giving up on sleep we softly spoke of our new lives, our visions of the future, our fumbles in the past. Every sense feels heightened in the deep silence just before dawn. He reached out and gave me a hug and then suddenly I couldn’t stop crying. I’ve only been positive for 2 months, but these tears felt like an accumulation of a life time. A shared grief across generations. Tears for the people I knew who had died, and from knowing that people are still dying now, more needlessly than ever. I sobbed, and he held me. Nothing needed to be said. It was the first physical intimacy I had had since my diagnosis. I was starving myself and hadn’t even realised.
I hate that emotions still sneak up on me. The sensation feels like I don’t experience them in live action, but instead they pile up, accumulating in my body. We can’t always know what we need in these circumstances, and I’m lucky to have a strong support network. I’m lucky I live in a country with services available to me like Genesis, to have access to amazing grassroot support networks like TiM. I’ve drawn on them a lot over the last few weeks. Being here, and drawing on these communities has been, and continues to be, so vital for me engaging with and processing my diagnosis. It has also made me realise how much more needs to be done to ensure that these forms of treatment, care and support are available globally, and especially in the Asia Pacific. I’m heartened and inspired to watch young advocates like Acep Gates go viral with a new narrative about HIV in Indonesia, and it’s all our responsibility to make sure that it’s narrative open to everyone.
My HIV still feels like a hurt and I’m not sure if that will change in the future. At times my diagnosis makes me feel hypocritical and stupid. Others, it makes me feel anxious and my body alien. Increasingly, parts of it feel mundane, the boredom and routine of chronic disease. Trying to take this forward, myself forward, I want to speak openly about these mixed feelings, this pain, because I’ve seen the toll of silence. My deepest thanks and my love to those who have been here for me through this and for those who have tread the path before me. As has been the catch cry from those who have supported me from Indonesia — semangat.
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Edited version of this piece can now be found at Archer Magazine