How you felt when you first found out

David

So little was known about HIV when I was diagnosed that many doctors were guessing the prognosis. My doctor, a very clever man, thought I needn’t worry too much as the thinking then was that only one in 10 people would end up with an AIDS-defining illness.

I believed his prediction and went on my merry way, deciding it may prove to be no big deal. I felt very well, had lots of energy, a great job and a good life. But as the eighties unfolded, his prognosis proved to be very wrong.

Large numbers of people started coming down with AIDS and dying.  Only a small number survived that era of no or very inferior treatments. That was until the mid-nineties and the “protease age”.

Beau

I was told by my local GP, who seemed as flustered as I was by the news.  It turned out this was her first experience in diagnosing someone.

Despite my initial shock, it also felt inevitable. Like so many gay men who grew up in the post-AIDS generation, I was finally the type of gay man that culture had spent so long telling me I would become. I wasn’t thinking about the health side of things, but more the social ramifications.

Then I worried about the people I’d had sex with, and which of them might also be positive without realising. I had just returned from Indonesia and was distressed at the thought that one of my former lovers might be negotiating HIV over there.

Who you turned to for support

David

I kept the news to myself for a while, then only told a couple of close friends. Their reactions were very loving and supportive, but I could see the alarm in their faces. The media hype at the time portrayed people with HIV as a “risk to public health” and potential “vectors of transmission”. Some papers even claimed that you might catch HIV just by touching someone.

I shared some of these growing fears with a counsellor I found at Fairfield Hospital. He helped organise an HIV peer support group which we called Melbourne Positive Friends. We met in each other’s homes until well into the nineties. It was a major help to me although I was always shocked when a member of the group died, and I wondered whether I’d be next.

Beau

As soon as I left the clinic I messaged my best friend to tell her. She called me at once and we spoke briefly as I made my way back to work. She was very supportive, and spoke mostly about practical things.

Intellectually, I knew that HIV was now a manageable health condition so I struggled to pinpoint why I felt so emotionally impacted.

I realised that this was something I wasn’t going to be able to process by focusing on the facts alone.  I needed to connect with community to talk through what was causing me to react in the way that I did.

It has taken a lot of time and conversations to unpack the intergenerational trauma and complicated relationship being gay has with HIV. For that reason, I’m glad that I went against my gut instinct and applied for every possible support system I could find in Sydney.

Stigma then versus now

David

I know of so many instances of HIV stigma and discrimination over the years. I have no doubt that it led to some of my friends taking their own lives because of the fear of rejection and serious illness. I, however, feel blessed.

I had intelligent, savvy workmates who treated me no differently and educated themselves on transmission risks. The greatest difficulty was telling potential sex partners. While having sex with casual partners using condoms worked for me, telling someone who you wanted a serious relationship with often led to rejection.

When I started doing media as a spokesperson for HIV organisations, I expected a blowback, but I rarely received it. Perhaps being confident about my status publicly, with the backing of those organisations, protected me a little, but I can’t be sure. Maybe the negative commentary happened behind my back.

I did experience one horrible incident at a gay hotel in Melbourne where a punter asked me to leave because he didn’t want “my type” there. But he backed off when my friends and hotel management defended me.

Beau

As someone who has lived overseas for much of the last decade, my HIV diagnosis had an immediate effect on my ability to be mobile in the world. There are still so many countries, especially in our region, that won’t allow you to work or migrate there if you have HIV. I knew that a lot of my plans were now permanently shifted.

I’m a single queer guy and I try to be open about my status. That said, I know I get more messages on Grindr when I don’t reveal that I’m positive. Some guys at saunas go wide-eyed if I disclose to them. Even in an age that has seen the end of sexual transmission for most of us (with U=U and PrEP), the fear lingers in the community. People naturally avoid discomfort, and someone with HIV still makes many people feel uncomfortable.

Recently, I had the opportunity to donate sperm to help a friend start a family but that was blocked due to my status. IVF clinics are not keeping up with the reality of HIV in 2023.

Attitudes to people with HIV

David

Over the years, I have seen an incredible change in attitudes towards people with HIV, particularly in the gay community. No doubt the main reason has been how effective HIV treatments are at making it virtually impossible to transmit HIV to a sex partner if you have an undetectable viral load.

Undetectable = Untransmittable (U=U) is a breakthrough, and the massive rollout of Pre-Exposure Prophylaxis (PrEP) has enabled HIV-negative people to have sex with partners of unknown status with confidence.

There are some real communication challenges within the heterosexual and multicultural communities that have some HIV prevalence.  Education and health promotion campaigns are not as easily disseminated within these communities; and with statistics growing to almost 40% of new diagnoses, this is an area that needs urgent attention.

Beau

I feel that there is still a lot of silence going in the gay community, and a lot of pressure still put on HIV positive men to hide their status. Despite the popularity of PrEP, there is a disconnect with how PrEP users engage with people open about their HIV status.

I have been in many situations where someone on PrEP will openly reject me when they find out that I am HIV positive. I’m undetectable, so even if they weren’t on PrEP they would be safe, but HIV still makes people anxious.

There seems to be a lot more knowledge about PrEP than about U=U within the HIV negative community. More work needs to be done to make sure that positive people aren’t being left behind in the journey towards ending HIV transmission. We are often left out of discussions about prevention, and U=U is rarely spoken about in prevention spaces despite it being one of the best strategies for ending HIV.

Unless we destigmatise HIV, we will never end HIV.

Photo by Chris Franklin: David Menadue and Beau Newham

Contemplating your future

David

After nearly 40 years, I’ve given up expecting a cure.  And much as I’m grateful for the treatments that are keeping me alive, I’d really like some that have no side-effects. My protruding stomach—which does nothing for my self-esteem—is largely due to the drugs I take every day.

I see five different specialists for the inflammatory damage done to my organs from long term HIV; and my daily pill burden gets bigger all the time.

Several of my doctors have been with me for my entire life with HIV and I worry about them retiring and not being around for the inevitable complications when they arise.

I think about needing care one day and hope it can happen without me going into residential aged care.

But all in all, I’m grateful for the wonderful job clinicians and carers have done to get me this far and for the fantastic HIV organisations that have advocated on my behalf. I thank them all, along with my friends and family who have offered such great support for such a very long time.

Beau

Like many people, I worry about the long-term side effects of treatment.

The immediate ones are negligible, but it’s hard not to worry about ones that may potentially creep up.

Am I putting on weight because of my medication? Or because I’m now 36? Or is it because I lived through too many months of lockdown? It’s these sorts of things that anyone with a chronic health condition can relate to.

I worry about HIV being increasingly treated as a pharmaceutical problem on the verge of being solved.

I worry that there won’t be support to help people navigate the complicated way HIV is interwoven into our histories and cultures.

I worry that Australia will ignore our regional neighbours once we get our transmission levels down and will instead start using our borders to keep HIV positive migrants from being able to visit here.

I worry about my HIV positive friends overseas that can’t access basic viral load testing.

I worry that my HIV status will make finding love harder.

But mostly, I’m thankful for the community of incredible people I can access due to my status. We have had multiple generations work on giving care and support to each other, and it’s a privilege to be able to draw on that and to be part of it all. This is what gives me optimism about the future.

 

In early 2023, David and Beau were featured in the Turbulence series, discussing the importance of intergenerational communities. Turbulence is a series of intergenerational collaborations in which older LGBTI people share stories about the turbulence of ageing and how connection with younger community members has helped to promote their sense of safety, wellbeing and hope. Their stories are documented in 5 short films, which are heart-warming testaments to the transformative power of intergenerational connection within LGBTIQ+ communities.

The Turbulence project is an initiative of Celebrate Ageing’s Centre for Intergenerational Power. The films were produced in collaboration Midsumma Festival and supported by the Victoria State Government, Families, Fairness and Housing, Pride Events and Festivals Fund Grant and Franklin Image. Thanks also to Living Positive Victoria for supporting the production of this film. Read more.

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