Readers are advised that this piece discusses illicit drug use, seroconversion and suicide.

It took me by surprise to find myself fighting oceanic emotions in a fairly dry work planning afternoon with my NAPWHA colleagues. A warm-up exercise had invited us all to put a post-it note marking our entry into the HIV response on a timeline of events from 1981 onwards. I dutifully placed my note on 2003, when I began volunteering for the health promotion team at the Victorian AIDS Council (now known as Thorne Harbour Health). That small act of location triggered memories of the events that led up to and from that decision to put my legal studies on hold and join the community-based response to HIV, and suddenly I was holding my breath to keep from sobbing.

In English, ménage a trois has come to mean ‘a threesome.’ In French, ménage just means an arrangement. In English, ‘arrangement’ sounds like a consciously planned design, but in French it can have a looser sense, the way one might talk about an arrangement of limbs in a bed, in a sparely furnished one-bedroom flat in the suburbs, circa 2000. It was the year after I had graduated high school, found a job and moved out of home. The tangle of limbs includes my boyfriend James (28yo) and our boyfriend Alix (18yo), and we are entangled in so many different respects: we are both lovers and combatants.

James (not his real name) was a very junior lawyer, gym fit, good-looking, Grammar educated, with everything going for him, except that he used MDMA a little too often, never giving himself enough time to recover before dosing again. He was emotionally inconsistent, irascible and an inveterate cheater, but he was my first boyfriend and I was making the best of it. He kept giving me an oropharyngeal STI called neisseria meningitidis, which is very bad news if it gets into your brain, so the treatment is a moderately heavy-duty antibiotic — a proper drag if you have to take it over and over — so I wanted an explanation. James introduced me to Alix.

Alix worked long shifts at Revolver, a dance club near my place in Prahran favoured by people who keep partying until after midday on Mondays. Alix was doing a huge amount of speed, which I think his manager probably sold to him, and working every day of the week; he would stagger from his bed to work and was rarely awake during the opening hours of the STI clinic, so everyone he played with came away with a souvenir.

James moved Alix into my place, which was only a few tram stops down High St from Revolver. Alix would get home and I’d try to shovel some soup and toast or cereal into him before he collapsed on my bed, and then I’d go to uni, and I’d repeat that performance when I got home and he was gearing up for work. (I also dragged him to Melbourne Sexual Health Centre.)

I don’t know who acquired HIV first or how, but in 2001, James and Alix were diagnosed within a few weeks of each other. They both got sick with seroconversion illness while struggling with nasty comedowns. They were both diagnosed in the emergency department at the Alfred. The recriminations began immediately.

Unlike both of them, I had the dumb luck of being raised in a primary school community that broached HIV risk and condom use when we did sex education in year six. I never had problems using condoms, even with regular partners — again, pure dumb luck; I don’t count it as a personal virtue. It kept me from getting HIV, but I still went through the maelstrom of seroconversion and diagnosis with Alix and James.

That was a bad time. James was lashing out and he was almost never around. Alix began using heavily, including downers rather than speed, and over a period of months he began using harder. An episode of use would be 4-5 days followed by 2-3 days being really sick in recovery before using again. I nursed him through it for a while but I was failing my subjects and out of my depth; eventually my self-preservation instinct overcame kindness and I asked him to move out.

Alix died of a heroin overdose in Sydney a couple of years later.

He and James had both moved to Sydney but I don’t know if they were in touch; I don’t know if James made any attempt to care for him. James said he had claimed the ashes and scattered them at Watson’s Bay. I lost touch with James and I can’t now find any trace of him on social media; he may have blocked me, left the country or passed away himself.

At the time, I interpreted Alix’s death as suicide. Now I am not so sure, but I believed that for a long time. I don’t know if he wanted to die, but I do know that he wanted to sleep.

Alix and James were what I call the ‘middle children’ of the HIV epidemic. Diagnosed between 1996 and 2012, during a period where people with new diagnoses were scrutinised and often blamed for getting HIV ‘after we knew better.’ Witnessing what they went through drove me to engage with the community-based HIV response, starting as a volunteer writing articles about sexual racism and HIV stigma for the local gay rag MCV and soon joining the staff of the VAC.

I was 23 years old and the old hands, many of them people living longer with HIV, wasted no time letting me know I knew nothing about HIV — because I hadn’t been there for the bad old days; I hadn’t watched my friends die, or attended the three hundred funerals. It was a difficult time for the VAC as well, which came under intense public scrutiny for what was portrayed as its failure to ‘control’ rising rates of HIV diagnosis, which were blamed on ignorant young people despite having a median age of 37 years (i.e. the same as the Australian population).

The HIV sector at the time was not an emotionally safe work environment. I couldn’t, at the time, speak about what had happened to motivate me to work in the HIV response. It wasn’t my story to tell, and to this day I find it difficult to write about. So I have enormous empathy for those long-term survivors who try to tell their stories, get triggered, and often lash out at the very people they are trying to connect with. But I’ve also been on the other side of the equation, seeing how that anger can scald and scarify its targets.

This is why I support and engage with public narrative projects, like those led by my colleague Beau Newham, while promoting psychological safety and trauma informed practice in the events and training NAPWHA facilitates.

These stories need to be heard, but the telling process needs to be safe for everybody, including those hearing stories for the first time, and those whose stories were for a long time silenced by blame and scrutiny of the reasons and timing for their diagnosis.

The earliest of the ‘middle children’ are now approaching 30 years of living with HIV, and it is time to recognise them as long-term survivors of HIV, listen to their stories and ensure their needs for social connection and services are being met.

This piece is written as a follow-up to ‘The Last of Their Number,’ published in Positive Living magazine two years ago on HIV Long-Term Survivors’ Awareness Day 2023.

If this piece has brought up difficult issues for you, you can contact Lifeline via phone, text or chat. LGBTQA+ readers can also contact QLife, Australia’s national peer support hotline, via phone or chat. Some NAPWHA member organisations offer peer support and may provide counselling.