We were an item in the early eighties before we were even aware that HIV was circulating among us although we’d heard reports about this mysterious virus, initially called GRID (Gay Related Immune Deficiency) coming from the USA. When the HIV test became available in November 1984 we both made a quick dash to the Sexual Health Clinic to find we were both HIV-positive and then wondered who’d given the virus to the other (when of course, there could have been other sources of the transmission).

To be honest, I wasn’t overly worried then, as the discussion in the press was that maybe only a small percentage of HIV-positive people in the gay male community would end up with AIDS illnesses and pass away. I felt well and was confident I could deal with any health challenge that came my way. A fit man in my early thirties with a good job and a recent house purchase, I figured I was next to invincible.

Of course, all that changed when the grim reality of HIV infection started to show itself over the coming years. Scary stories from overseas and the impact of HIV on gay communities started to get a few of us who knew other positive people to start talking to each other for some peer support. With the help of a counsellor from the then Fairfield Hospital, the major HIV treatment hospital at the time, we set up a peer group called Melbourne Positive Friends to meet in each other’s homes each Thursday night. With the occasional guest speaker talking about treatment options (when they eventually came) I found this group a lifesaver when the community hysteria about HIV started to get out of control. This happened particularly around the time of the Federal Government’s badly thought-through Grim Reaper campaign in 1987—a scary ghost-like harbinger of death thrust onto our TV screens at night, looking just a little too like some of the skeletal frames that some people with AIDS were developing at the time. It started to feel as if society was going to be hostile to people like me when the Government wasn’t doing enough to educate the population about the actual low risks of transmission including from casual contact. It was to be some years before the Government came up with a sensible campaign about how to protect yourself from HIV/AIDS and how to avoid it.

Grief and loss have remained in the background of the lives of me and my peers as we learnt to cope with a never-ending tide of AIDS deaths and morbidity related to the virus.

If I reflect back now, more than forty years later, I can see the difficult path that the AIDS illnesses I experienced meant for me and the awful stigma that society presented us with but I can also see the redeeming value of peer support from fellow HIV-positives and how that helped me to deal with a sometimes-unfriendly world. Melbourne Positive Friends became my rock, the saving grace that kept me from going under with the depressing prognosis that doctors seem to be coming up with as the eighties progressed with no effective treatments being found. I’m sure peer support provided this support to many other people with HIV around the country.

Our group looked to our own internal resources to shore up our spirits while we waited for a more common-sense approach from government towards educating the public about the real (incredibly small) risk of casual transmission of the virus in the community. We arranged weekends away at a group members’ holiday house down the coast.  We organised ourselves to get to the Sydney Mardi Gras Parade in 1993 and to march, very proudly and bravely under the rainbow banner of Melbourne Positive Friends to a sometimes loud supportive response from the crowd. We made a real fuss about everyone’s birthday, knowing it might be their last.

Of course there was the obvious downside to all of this. We started to lose people, sometimes with one or two funerals in a week, some where the family and friends were glad to welcome us, sometimes asking us to leave or to sit down the back of the church or funeral parlour.  Initially we felt we were almost on our own with this grief and that broader society wanted to shun us but as the Federal Government and some state governments stepped up their efforts to educate the public about the real risks of HIV transmission and gave more resources to community campaigns from AIDS Councils and the newly developing HIV-peer organisations (such as NAPWHA) in the late 80s and early 90s, we started to see some change in community attitudes and more support and understanding coming our way.

Even so, the impact on our group of these deaths was profound and alarming. Every loss reminded each one of our 33 members that it could be your turn next and if so, you hoped it would be one of the quick exits and the not the laborious deaths involved with AIDS dementia or one of the nasty cancers such as Non Hodgkin’s Lymphoma (which I did experience in 1996 but maybe luckily at a time when we were seeing better treatments that might have helped me to overcome it). By the mid-nineties a couple of us in the group looked back at our losses, we realised that there were only four of us left from the original 33. An astonishing number to us but just a microcosm of the larger epidemic that was playing out then In Australia and much of the rest of the world. We had no idea why our lives were spared but to me, it seemed to be as much about good luck and maybe good genetics that any treatment protocol I followed. You can be lucky in life sometimes, I guess, but if I had my way I would have shared that luck with so many of the wonderful friends that I met through that group, some of them stronger and fitter (and younger) than me then!

I do understand why some HIV-positive people may find this history hard to read, particularly if they are from the younger generations of HIV+ people who have come along since with a more favourable prognosis and life expectancy. These changes are something to cherish but I would like you, if you are from this cohort, to understand what a massive community effort took place to get us here today, to change Government and society’s attitudes towards us and to bring about efforts to find good HIV treatments and decrease the stigma of  being an HIV-positive person in Australia today.

R.I.P. Stephen