Home
Reflections on Sex during COVID-19, HIV+ Perspectives

Reflections on Sex during COVID-19, HIV+ Perspectives

Sex can be a difficult topic to discuss at the best of times, given it speaks to highly personal and intimate feelings we have about ourselves and others. But in COVID, with uncertainty about risk factors for transmission of the virus, it is extremely hard to get most people to open up about the issues it raises. Here some thoughtful HIV-positive people — some in lockdown states, some not — have put their perspectives down to help us to get our head around what having sex (or choosing not to) involves at the moment.

Sarah

Sex is not on the top of the list of priorities for a lot of the positive people I talk to, particularly women with families. Their concerns are mainly around material things like getting enough for their family to eat, homeschooling, and money.

This is especially hard for those that are not eligible for government assistance. Mind you, for many HIV-positive women who are single, the whole dating scene can be fraught anyway. The average heterosexual male is living in an era twenty years ago when it comes to understanding the risks of having sex in a time of Undetectable=Untransmissible. They just don’t get it, and the absence of education campaigns to the broader community hasn’t helped allay those fears.

Positive gay friends of mine find it easier to get HIV-negative partners, particularly in the world of PrEP and a greater understanding of U=U in the gay community, but even they are a little wary of what to do during COVID-19. If you are prepared to have sex in the first place, most of us realise the wisdom of limiting your number of partners and that some degree of negotiation around sex is a good idea before you start. I also understand that some HIV+ people living with co-morbidities feel the risk of contracting the virus is too great to have sex at all at the moment.

Showering beforehand and using hand sanitiser and condoms are some basic prevention methods. Developing a trusting sexual arrangement with one or two others, even testing for COVID if you think it helps, could help you to feel more relaxed about having sex during this difficult time.

David

Some might say that, at 67, I’m past my “sexual prime”. And there’d be some truth to that for me even though I have loads of friends my age and older who are having an excellent time, sexually, thank you very much. We all know there are sexual aids that can help performance in remarkable ways and if the urge is there, there is usually a way to reach the desired outcome. For me though, in the midst of a Melbourne lockdown with no visitors allowed, I found my declining interest in hook-up apps and most forms of online eroticism (apart from some sexy movie leads) fitted in with the more celibate times.

“What I am missing though is intimacy. No hugging or touching, no human contact. We humans have craved that since birth, and it is quite unnatural to have that suddenly taken away.”

A social chat on the phone, over Zoom or even in a physically-distanced space on a park bench can help a lot but some of us homo sapiens think a hug or a peck on the cheek is a natural part of everyday interaction.
Miraculously, I have a boyfriend but he’s locked away in an Asian country because of his country’s and our border closures, even though he is COVID-negative like me. Cuddles and emotional support over Skype aren’t quite the same. As for a number of my friends, relationships (and sex) are on hold because of this blasted virus.

Those of us who have finally managed to get a partner who is not fussed about our status and is willing to have sex with us but not able to live with us, well, we can be just a bit cheesed off with the current state of affairs. But if we’ve survived this long with HIV, we can knock this one on the head too … I hope.

Richard Keane

For most of my adult life, I’ve had others telling me how to have sex and with whom and under what circumstances. Sometimes this was done with little compassion and under a framework of potential criminalisation. Coming from a harm reduction perspective, I chose for many years to sero-sort and only have sex with other positive guys.

With the bio-medical revolution of U=U and PrEP, I felt I could finally let go of the weight of being seen as a vector of transmission and finally attain the healthy sexual life that I so richly deserved. Now this? I was triggered and my initial reaction was emotional and quite visceral.

I had to gather myself and remember that we are all in this together and that behaviour must be adapted to deal with the impacts of our second pandemic. There is no escaping the fact that individual behaviour can have unintended impacts on others. Even so, we must remain a community that supports each other rather than tearing each other apart.

Up until stage 4 here in Victoria, apps like Squirt were showing a huge amount of traffic at beats and parks after the closure of sex on premises venues. At the end of this lockdown, a broader conversation must be had that avoids driving men who have sex with men underground, back to beats and towards potential criminalisation.

To reduce potential transmission via contact with multiple partners. “Lockdown buddies” with a commitment to one exclusive sexual partner have become very popular in app land.

Bill O’Loughlin

What can I write about sex and COVID and being positive? It has been a constant barrage of shock, bewilderment, despair, and loss, slamming into me since March. As a gay man, I’ve always found immense pleasure in sex. It’s a core part of who I am and what I do. And, yes, as a single man who has a lot of hook up sex, there is always the quiet hope that one day I shall stumble across ‘the one’ [and central to his attractiveness would be unconcern about monogamy].

Now, with the likelihood of a vaccine being either far off or, in worse predictions, uncertain, I find myself lost, frightened and angry. My response to the daily news about the virus’ spread occurs on two levels. I am disturbed by its dreadful impact on our society, economy, and health and wellbeing, but I simultaneously analyse each development for its meaning on my ability to have sex. When coronavirus first hit, I, like most gay men, avoided sex for some weeks during the shutdown. Then, around Easter, when it appeared to be contained in Melbourne, I was amongst the many who surged back onto the apps and resumed hooking up. There was an eagerness and intensity as men compensated for the time lost in abstinence.

“However, when the pandemic took off again in late June-early July, the apps were noticeably slower in dying down. Were men reluctant to go once more back into that awful experience of going without sex? It is one thing to give up going to the movies or out to dinner, but not being able to have sex is in another dimension. We did it once and hated it, the prospect of going back into it is another matter.”

What are my options? Well, thankfully there is plentiful free porn, but that has its flip side of reinforcing the solitary loneliness of the viewer – not to mention the irony of perving on others having a great time. The proposal to agree with one or a few men to form exclusive and negotiated sexual arrangements isn’t easy because not everyone has such blokes up their sleeves [or anywhere else for that matter…]. I have discussed this with one root but he, like me, is letting things wait to see how the current spate of community transmission plays out.

The suggestion that, on the apps, we discuss details regarding experience of isolation and degrees of exposure in order to determine levels of risk associated with meeting for a root is a tough one, not to mention the associated and critical factor of requiring honesty and trust [Umm… with a bloke you’ve either simply rooted a few times or possibly never met…]. It goes against the whole way the apps operate i.e. fast, decisive, and oriented around the key questions: ‘what r u into?’, ‘dick pic?’ and ‘free now?’

So, where does this leave me? As I wrote at the beginning: shocked, bewildered, despairing and grieving. I live alone, so experience blocks of days where I don’t see anyone, where I don’t get to hug or kiss a friend. I am fortunate to have wonderful friends and spend much time on calls and zooms. I talk freely with some of them about how sex has become a dreadful, uncertain, and disappearing feature of our lives, and there is some consolation from knowing we are all struggling. But that only helps a bit.

Overall, we are in a bloody awful unprecedented world and, within that, we are each having to cope with the reality that hook-up sex for gay men has been thrown wildly into a new and uncertain dimension, and we don’t know what the fuck to do about it.

Paul

I am browsing one of the gay hook-up apps when this profile catches my eye and I start laughing. ‘I need to be bread,’ this profile says. No pic. Just like my profile. And then I think about it. I need to be ‘bread’ too. Pummelled and pounded and stroked. I need to be kneaded. But responsibly and safely.

But this is not happening now.

It’s Lockdown 2.0 so there is no going out between the hours of 8 pm and 5 am and no visits to the sauna where one eagerly entered the ‘moist breath zone’ to savour the anonymous delights of the flesh. Now I can’t even enjoy my undetectable status and at 65, having lived through the dark days of the last virus, this is a bit of a blow.

Instead, it’s a lockdown wank in my live-alone apartment. Lockdown for many people is a real libido dampener as it is for me. More like libidon’t.

Now I walk most of my sexual energy off and as I pace down St Kilda Road, empty trams pass me by with reminders of the road not travelled. The Melbourne International Comedy Festival signs on their sides taunt us with the laughter that we won’t be experiencing in a live theatre for a long time it seems. And cruising is out. Who knew that we needed so much of our faces to make that connection? But now there is no connection when ‘he’ passes by. With the compulsory face masks, it is just the eyes and they definitely don’t have it.

Still I know all of this is for the greater good. COVID-19 is spread by sex and I can wear that. I get annoyed at those guys still wanting to hook up during this time. Even the hook-up apps are now telling us not to. Yes, I’ve been tempted. Very. But I jump on that, so why can’t they?

If it wasn’t for my friends and mindfulness meditation, I know I would go bonkers. (Check out Jon Kabat Zinn’s meditations on YouTube. They are great.) Phone calls every day from my nearest and dearest to ‘only connect’ are now essential. Walks with my friend in the chilly air are also greatly appreciated. He tells me that you lose more weight walking in the cold than in the heat. So, we walk faster to burn off our ‘Corona curves’ hopefully towards a summer where the numbers have come down and we’ll be released from all of this.

Jay

In June, an article published on a local NSW gay magazine praised gay men for reducing casual sex and protecting our community during COVID lockdown, with at least 90% of the respondents of a study reporting so. I am not the 10%, in fact, I am not included in that study at all. I belong to what academia describes as the “hard to reach” group. We are gay men who use drugs, some of us are also HIV positive, unemployed, homeless, sex workers, migrants, English as second language speakers, people who have criminal records or other “hard to reach” characteristics. And we NEVER stopped fucking. But before you judge me and shame me, let me bring you back to March when Sydney first went into lockdown.

I have been in the chemsex/PNP scene for more than a decade now, and I tend to think I have been to both ends of this phenomenon. It used to help me escape from my reality and insecurity, but it also destroyed my life completely on a few occasions.

Over the years, I’ve learnt a lot of skills to manage my drug use. I found a circle of friends who care about me outside the bedroom, a job that fulfils my heart, a busy schedule with lots of social activities, a life routine that helps me to stay balanced. When COVID hit, my boss told us that we must stay home indefinitely, and everything changed. I know this applied to everyone globally; but what it meant to me is everything I have learnt and built over the years to prevent my next life-threatening overdose was taken away by COVID lockdown. So, I kept getting high and hooking up with others who decided to do the same. The frequency of my drug use increased from once every 3 months to 5 days a week.

“I read that article I mentioned earlier a few days after I was in an 8-hour coma and I felt ashamed. I remember thinking either I am a morally corrupt, selfish, promiscuous gay man who is alone in this world… or maybe other people in that situation are just not talking about what we are going through.”

I feel privileged to have those people who cared about me and offered their support in my dark times during COVID, and eventually with their help I figured out new ways to find stability in a time full of uncertainty.

Steve

Being sex positive and being COVID-safe really can be perfect bedfellows – ‘gloryhole’ is one word on everybody’s lips when talking about harm minimisation during the COVID-19 pandemic, for example. But beyond state-sanctioned sex (which changes depending on where you live, based on the severity of the outbreak where you are) I have seen people explore novel ways to have some form of sexual interaction that reduces or removes the risk of transmission. Whether it’s solo play with toys, adhering to a ‘sex bubble’ approach where you strictly limit and control the group of people you have sex with, or even just simply not having sex (I don’t blame you, a respiratory pandemic is one of the few kinks I do not have).

We are also seeing some PLHIV gain new income streams whilst getting off through online pay-to-watch platforms – entrepreneurship and adaptation are key in this environment.

We’ve seen sex-on-premises venues open in some jurisdictions, and private play parties being run with strict control and COVID-safe plans, and where the outbreak is negligible, these activities can be relatively safe.

But it is up to you the degree of risk you are willing to accept in this environment. Regulations and rules exist for very good reasons. You control what you choose to do; so just because your friends have started going to the sauna on Saturdays doesn’t mean you have to as well.

Personally, my toe-tapping isn’t under any bathroom stalls. It’s usually tapping with impatience for my mac and cheese to get ready in the microwave. Being in a monogamous relationship with the person I live with brings its own challenges, but I have nothing to complain about, really. It has been really important to chisel-out private time for ourselves. Both of us are working from home and it’s just a small one-bedroom apartment in Kings Cross. I have had to put in the effort to make intimate time with my partner but just as importantly to make time to be intimate with myself. When you’re living on top of someone all day every day, you need to prioritise your private time.

HIV-positive people are very health-literate, and I have noticed that many of us have been the educators on this new pandemic whether we like it or not. We are blessed to have access to well-informed and proactive community organisations like NAPWHA that help us lead and navigate at the same time.

As HIV-positive people we are well aware of the harm and ineffectiveness of words like ‘responsible.’ While it can be tempting to shame those that are doing things that let down the rest of us who are doing the ‘right thing’ it’s good to take a moment and put ourselves in their shoes and try to understand why people are doing things we perceive as ‘wrong’ during this pandemic. We understand the power of bringing people on board to make the best decisions for themselves., While there will always be outliers that make riskier choices, we should be very proud of the way our PLHIV community has come together during this time and the compassion and patience we have all shown.

“Always remember there is no right way to do this thing called sex during a pandemic outside of what we need to be doing to reduce the risk of transmission. We are all doing our very best.”

**Please note: if you are currently experiencing a COVID lockdown, it is important that you observe all your jurisdiction’s rules regarding visitors to your home in the interests of public health safety.**

U=U in a sero-discordant relationship

U=U in a sero-discordant relationship

Being a recently diagnosed person living with HIV (PLHIV) is like living in a weird place of limbo. You still remember vividly what it was like ‘before,’ and you are still learning what it’s like in your new normal. There are moments that carry you a couple of steps forward in your understanding and there are moments that take you back.

U=U

I constantly look, with great admiration, at my peers who have been living with HIV for far longer than I have. It is the shared experiences that make us strong. This is where the resilience of HIV positive people comes from.

We have entered a completely different era of HIV prevention with the proliferation of undetectable equals untransmittable (U=U) and the wildly successful uptake of pre-exposure prophylaxis (PrEP). However, with such huge changes we need to understand their true impacts on communities.

These changes are not uniform across the population. U=U and PrEP largely impact the queer male community – which has historically been most impacted by HIV. U=U is different for women and other communities and this is important to also analyse.

U=U has helped to build a movement for HIV positive people. It has given me the strength and confidence to walk this world as a person living with HIV without fear. Similarly, PrEP helps HIV negative people live without fear. But, herein lies the difference – only one of these groups is highly stigmatised.

In late-2020, The Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine (ASHM) affirmed the importance of maintaining an undetectable viral load in their new guidance for healthcare professionals. In health terms, it is undeniable – we remain healthy and cannot pass the virus on sexually.

In my short time living with HIV I have encountered stigma and discrimination in healthcare settings. So, these clinical guidelines will help us take further leaps forward in this country.

But how effective has U=U been in combatting stigma within the community? We cannot end HIV without ending HIV stigma, and we cannot combat that stigma unless we understand how it changes over time.

From the top-down we are seeing strides being taken by our peak bodies and medical organisations to advocate the U=U message. We also have grassroots movements and communities leading the way. However, effective advocacy starts with the individual’s embodiment of the idea, and the belief that personal actions can be revolutionary.

So this leads me to ask, what does it mean to embody U=U?

By exploring how my HIV status exists in my relationship with my HIV negative partner, I have come to learn more about myself not just a healthy and happy person living with HIV, but as a person capable and deserving of love. In the almost two years since my diagnosis there have been many personal milestones.

I still get a tingly feeling when I think back to first seeing my partner at a local bar. He was handsome. He had a gorgeous smile. He was brave enough to come over and introduce himself. Early on, I chose to disclose my HIV status; he had a very nonchalant response, which was comforting. What started as just casual sex, blossomed into something a little more serious. But I still had my guard up.

He knew I was undetectable. I knew he was on PrEP. We were good to go. I felt so lucky to have met someone who treated my HIV as a non-issue but at the exact same time acknowledged how important it was to me and how large a part it played in my life, especially being in the first few months after my HIV diagnosis. He was full of compassion and defended me fiercely when I encountered very intense bullying after my public disclosure, and we were falling in love.

Fast-forward a few months into our relationship and the time came for him to renew his PrEP prescription. Without batting an eyelid he said he was going to stop taking PrEP because I’m undetectable, and being monogamous he had no reason to stay on the medication, but only if it was okay with me.

Why would an HIV -negative person ask their HIV-positive partner for consent to go off PrEP?

The message behind PrEP is one of individual empowerment and personal freedom, so it should be his decision to make and not mine, right? Well, the science is very clear. The latest ASHM guidelines state that PrEP use is unnecessary when the partner is undetectable. This confirms what HIV positive people have always thought, and we are seeing HIV negative people begin to understand this as well.

I asked him why my opinion on his PrEP use mattered. He acknowledged the burden that HIV positive people carry to stop the spread of HIV, and that it shouldn’t just be up to me if I didn’t want it to be. I was amazed – here was this HIV negative guy who had never been with an HIV positive person before me, but he had quietly been educating himself about what PLHIV go through. And importantly he educated himself on the effectiveness of U=U and he wasn’t dogmatic about PrEP. He knew that U=U was all we needed, so it was a no-brainer.

This conversation was the moment where I truly felt like I was able to embody U=U with my partner. That after the tumultuous early months post-diagnosis I was not a threat and that we were actively participating in the most effective HIV preventative; it’s not condoms, it’s not PrEP, it is U=U.

To be trusted in this way flipped my own HIV status quo and showed me that the juncture where PrEP and U=U meet can be empowering for PLHIV, something I wasn’t sure was possible after many problematic experiences with PrEP users.

Serodiscordant (or sero-different) relationships are very rarely shown in popular culture, so there’s not really much to compare your own experiences with. I have found it is really important to connect with HIV peers to talk about relationships so I spoke with local HIV advocate and living legend, Sarah, about her experiences in different types of relationships.

As an HIV positive queer woman, I have experienced highs and lows of telling people about my HIV status across genders and sexualities. I was diagnosed in 2008, pre-U=U, but sadly I haven’t seen a huge shift in the broader community’s understanding of HIV transmission. Personally, U=U has lifted my own internalised fears of transmitting the virus, giving me the freedom to enjoy sex, tell people my status (if I choose to) with more confidence than I ever had before.

But negative reactions are still happening post-U=U. Six months ago, a casual partner found out Sarah’s status.

“He is a heterosexual man. We always used condoms and it was explicitly clear that it was just sex. So, I didn’t think it would be appropriate to tell him about my private life, health, any of it. It was purely physical, and by the law in Victoria I was taking reasonable precautions to protect him. There was zero risk of transmission. Anyway, I get a call at three in the morning, a booty call I thought, so I let him in and jump into bed, ready for some play and he loses it! He starts screaming at me, what a b*tch I am, saying that he has kids! How could I do this to him…then he stated saying I forced him to have sex with me, I made him go down on me! I was freaked! I tried to explain to him I would never put anyone at risk and what we did was safe… so I sent him U=U information. A few months later we ran into each other, we sat and talked about what happened and he understands now. But his reaction was of total fear! And it scared me.”

“Going back three months ago, I met this amazing woman who is in a polyamorous relationship. We would go for walks during Melbourne’s lockdown and it was an instant connection. I mentioned to her that I worked in the HIV sector – a good way to suss her out. She came straight out saying there is no way she would date someone with HIV. I instantly said, ‘well I am HIV-positive’. Then a literal storm blew in — tree branches falling, the park we were sitting in turned as fast as our budding relationship. So, we split up running to our homes with HIV lingering in the air.”

“A couple of weeks later I get a message to catch up. We are back in the park, much calmer now, and I ask her if she has changed her mind about dating a HIV+ person. She sealed that answer with a kiss and we are still dating now. She chose to educate herself. She checked in with her other partners, who now are also educated. She chose to see me, be an ally and look past the invisible barrier of HIV.”

Sarah’s experiences illuminate how different parts of the positive community face different challenges, but we can all find similarity and solidarity with each other. HIV stigma does a disservice to both HIV-negative people and HIV-positive people. It stains the whole community but the pain is inflicted on people living with HIV.

We shouldn’t be surprised that HIV negative people are self-limiting in their embrace of U=U. If HIV treatment and prevention are siloed, we will see this within our community. As long as entire sections of the population aren’t targeted by HIV education we will encounter ignorance.

The whole community shouldn’t simply be embracing U=U, they should be embodying it, too. I’m not just talking about going out there and having sex with HIV-positive people — that’s only a small part of what it means. I mean go out there and love HIV positive people, be our allies, educate your families and friends about what it means to live with HIV in the 21st Century.

I’m not asking anyone to do anything they are uncomfortable with, but I am asking people to challenge their own HIV status quo and challenge the preconceptions and stigmas they may have.

I have come to learn that as a person living with HIV with an undetectable viral load, I embody U=U every single day. I have also learnt through hearing other peoples’ stories and through my own relationship that everyone has their own important journey with the empowerment that U=U brings. Radical acts like having sex with my HIV negative partner and not wearing a condom and him not taking PrEP are really just simple expressions of love.

Just as they should be and just as the science says.

Video: See Steve Spencer sharing his story in the HIV is: Just a Part of Me campaign

Positive Responses to ‘It’s a Sin’

Positive Responses to ‘It’s a Sin’

Everyone has been talking about It’s A Sin, the television series that throws us back to the 1980s, to the fear and panic of AIDS and the people it touched the most.

Four positive writers share their thoughts on watching this compelling series, currently screening on Stan.

Nick:

It has taken me a while to crystalise my thoughts and feelings about It’s A Sin. Firstly, just watch it. However, if you find you are enjoying it because of the music, reliving your clubbing days, the fashion of the 80s, or you are not crying by Episode 3, then you have completely missed the point.

This show is gruelling and traumatic for older gay men who survived the shit that was the 1980s. It is about our lived experience and just how vilified some of us were by our families (not mine thankfully), the governments of the day, our friends both gay and straight, and the media – in particular, News Limited tabloids.

Some of my family members are mystified as to why I still can’t read the Courier Mail. Our local Brisbane paper was particularly vicious with its headlines of the day.
HIV continues to be demonised. While technically not the death sentence it used to be, HIV is still not talked about. It is still not a socially acceptable disease.

“We congratulate our brave and strong friends for fighting and surviving socially acceptable diseases like cancer But do we congratulate our friends for milestones such as surviving 30 years of HIV? Why not? Because they don’t tell you.”

This is not to minimise the lived experience of other diseases and cancers. Hard is hard. My point is that YOU get to talk about your illness, HIV positive people do not.

This show is also a reminder that society still isn’t ‘good with the gays’.

Less than four years ago, we had a national non-binding vote to decide whether we could have the same legal recognition of our relationships. About 12 months ago, Queensland finally outlawed gay conversion therapy. Victoria finally voted the same way only the other night. This evil practice is still allowed in most other jurisdictions in the country.

But let’s not forget what is happening in many countries around the world. Stuff that is much, much worse.

And just a reminder, this show, while amazing, is still a completely sanitised version of what really happened back then.

So, if you haven’t seen it, go watch it and report back.

Heather Ellis:

I had heard nothing about It’s A Sin until I read Nick’s submission for Positive Living.

For many heterosexual women like myself, this television series by Russell T Davies about the dawn of HIV/AIDS in the UK has probably gone unnoticed. And this is, well … a sin.

I watched the five-part series over two nights. On both nights I got little sleep. I kept reliving the emotionally charged scenes as a group of young gay men and one woman come face to face with fear, loss, rejection and death from AIDS.

For those of you, like myself, who were detached from the world of HIV, we were oblivious to it all. I lived in London from 1983 to 1985 and never heard or saw those three little letters: HIV. I read nothing in newspapers, there were no public health messages on the Underground or in pubs and clubs and other places I frequented with my newfound friends.

Or maybe the messages were there but I just didn’t see them?

My liaison with HIV didn’t occur until ten years later in 1995. I was also in London when I was diagnosed. Still, there was nothing seen or spoken about HIV unless you visited an HIV clinic. As the only woman in the waiting room of the HIV Clinic at the Chelsea Westminster Hospital, I will never forget the emaciated bodies of so many young men who sat alone in their fear and sadness for their young lives lost. The virus hadn’t yet taken hold of me. That would take another two years.

The characters and scenes from It’s A Sin depict a time in humanity’s history of ignorance, fuelled by fear that resulted in lack of care, rejection by families, and loss of human rights.

And this was where It’s A Sin had the most heart-wrenching impact on me. It was just a few short lines by Oscar Babatunde (Delroy Brown), the Nigerian father of one of the lead characters, Rosco Babatunde (Omari Douglas). Oscar had rejected his son for being gay, but when he returned to Nigeria for a short trip, Oscar was horrified by what he had witnessed of the impact of AIDS.
He described how people, including women and children were locked in a room to die.

“Millions of people, men, women and children have died from HIV over the past 40 years. Yes, this year, 2021 marks forty years since the HIV pandemic was proclaimed in 1981. And forty years later, for many nothing has really changed.”

Millions of people still have no access to the HIV medications that keep us alive. And millions more continue to be horribly mistreated, rejected, live in fear of being found out, all because HIV stigma is still here.

We need more television series like It’s A Sin. Let’s hope that some of the millions who tune it to watch it come away with open minds and open hearts to what it is like to live in our world.

David Menadue:

Russell T Davies received some criticism for not including much about HIV in his previous series: Queer as Folk, produced in the early 2000s. He said he was still processing what he and other friends had gone through in the crisis years of the epidemic.

What he has delivered with It’s a Sin certainly makes up for it. This is full-on immersion into the lives of twenty-something gay men (and one woman) living in a group house, not surprisingly called “The Pink Palace” in 1980s London.

While I have seen HIV handled well in other dramas such as Angels in America, Tales of the City, and in Australia with Holding the Man, It’s a Sin has affected me the most. As someone who lived through the awful uncertainty of the early eighties and was diagnosed as positive in 1984, so much of this series rings true.

There’s the eighties soundtrack: the Pet Shop Boys song which give the series its title, Do you Want to Funk with Me, Kids in America, and so on. It is a trip down memory lane for someone like me who lived that disco-inspired lifestyle, with lots of parties, sex and living in group households.

The central character, Ritchie (Ollie Alexander) is one of those gay men who didn’t want to acknowledge the potential threat of the virus and practiced denial until it was too late. Others, like me, picked up the virus in the early days when we didn’t know how it was transmitted.

This show touches on so many sensitivities. The homophobia of Britain under Maggie Thatcher and her oppressive Clause 28. Service providers refusing help to people with AIDS. Incredible ignorance about transmission risks, heartbreaking rejections by families, the lack of support for people dying of AIDS in isolated wards away from their friends or at home with no supports at all.

The other central character, Jill (Lydia West) gives an amazing performance as everyone’s carer, emotional support and source of the latest HIV information. Colin (Callum Scott Howells) plays the heart-wrenching role of the innocent novice to the gay world who picks up the virus despite having very little sex. All the acting is engaging and believable, with Don (Ash Mukherjee), Roscoe (Omari Douglas) and Valerie Tozer (Keeley Hawkes) also worthy of special mention.

It’s A Sin is a very emotional experience — or it was for me– and I think long term survivors or people who lost friends from this period will find it challenging viewing because it pulls no punches.

“It shows the mortality, the grief and loss, and the huge toll the virus took on the gay community. I found it cathartic and cried when characters I had become very fond of died.”

The final episode was shocking with an over-the-top performance from Keeley Hawkes as Ritchie’s mother. And still reeling in my head, is the clash between her and Jill in the final scene about who is to blame for gay men’s guilt about their sexuality.

Be warned. It is intense but really worth the effort.

Charlie Tredway

I had to rally myself before diving into It’s a Sin.

As a 37-year-old, there were very few years of my life prior to HIV and AIDS eviscerating communities around the world. For many of my generation, myself included, the realities of that time can be an abstract concept.

“Finding your tribe and sexual liberation at a time of wide-spread public vilification of queerness (and all forms of ‘otherness’) only to have the rug pulled out from under you. Watching your lovers and friends contract and die from a mysterious illness.”

I loved watching Ritchie, Don, Roscoe, Jill and Colin navigate their lives together. Seeing the joy and vibrancy of this chosen family was both euphoric and heartbreaking for me as someone who had to find my own substitute family at 17, and then had my own HIV journey to contend with a few years later.

I watched it unfold around me. I was continuously coiled and tense knowing exactly what was waiting in the wings. Watching the people I had seen myself in and grown to love.

I shouldn’t have experienced an AIDS-defining illness or known what it felt like to waste away but seeing Colin’s skeletal frame in a hospital bed gave me a flashback to my own body down to 44kgs in a hospital gown. I felt horrified. And grateful.

How close I got and how far I have come. How far we have all come with treatments, perception and health outcomes.

It’s a Sin gave me an opportunity to see and feel everything more clearly. My own experiences. The lives of those amazing people before me, many of whom I am grateful to count as friends and loved ones, who continue to inspire me today.

And through seeing the character of Jill, who I viewed as the true heart of this series, I was able to see my own mother more clearly. A woman who in the late 80s and early 90s took toddler me to AIDS Walk for Life protests and volunteered as a Buddy for people dying of AIDS. Because she couldn’t and wouldn’t turn away from the injustice and the need and the grief.

Maybe it’s not such an abstract concept after all.

Laaa.

We are always interested in quality writing here at Positive Living. We can’t promise to use them all but if you’re interested in submitting your work email your contributions to: charlie@napwha.org.au (Please limit submissions to 1000 words.)

40 Years of HIV in Australia – 1980s-1990s

40 Years of HIV in Australia – 1980s-1990s

Attendees at the third National Conference on HIV/AIDS in Hobart in August 1988 took to the stage to openly declare their positive status and protest the invisibility of the positive community. This marked the first public time that a ‘coming out’ statement was made by people living with AIDS.

1980s

David Menadue:

David Menadue, aged 43, in 1993 speaking at the opening of Victoria’s first Positive Living Centre in St Kilda. “I was diagnosed in 1984 but this is one of the first photos of me looking presentable after a few rough years with AIDS-defining illnesses.”

Two months after the 1982 Mardi Gras, I developed swollen lymph glands in my groin and under my arms. I didn’t attach much importance to them because when I showed them to my doctor at the time, he said it was probably a transitory infection and not to worry too much.

Two years later, they were still there, and we also had more information about a mysterious “gay cancer virus” which had claimed lives in US cities since 1981. So, I attended the Melbourne Sexual Health Centre just in case there was some connection to my symptoms.

I was lucky to meet a switched-on doctor there, David Bradford who arranged for me to take a new test (then called the Human T-cell leukemia 3 test, the forerunner of the HIV test) which came back positive.

David said that the conventional medical wisdom was that only one in 10 people would go on to develop AIDS.

I felt reassured. I was feeling healthy and strong, had a secure job and a great life, and could live with those odds. As the eighties unfolded however, the experts started to say that maybe close to 100% of people might develop AIDS-related conditions and many would die.

Tragically, this is what happened to so many of my friends for the next two decades — and which began my own challenges to keep well and stay alive.

“There were no HIV treatments until 1988 when the experimental drug AZT came out which I jumped at the chance to take. It’s a wonder the drug itself didn’t kill me because it was later found to be given at four times the required dose and was causing massive muscle wasting to people’s arms, legs and faces. The virus was also doing this and by the end of the decade people like me were looking like scarecrows from the damage to our bodies.”

So, the Federal Government’s 1987 Grim Reaper advertising campaign—with a scarecrow image coming into people’s lounge-rooms for three weeks—couldn’t have been worse timing for those of us trying to live with the stigma that the virus had already brought into our lives.

In 1984, several babies had been transfused with HIV-infected blood in Queensland and even though the accused gay men had donated not knowing they were infected, the media had a field day and we positive people became the subject of a hate campaign by some.

David Menadue – 2021

It’s been a rough ride for me and my peers—the few of us lucky enough to still be here. I can’t explain why I have survived, but I do credit my family and some wonderful friends for sticking by me when things were ugly.

I thank my HIV activist friends who together established PLHIV organisations around the country, including our peak organisation NAPWHA. Through these organisations, we were able to educate HIV+ people about how they could protect others from catching the virus, get better treatments and learn how to live well with it.

And thankfully, now with today’s life-saving treatments, we cannot pass it on to our sexual partners.

Anth McCarthy:

Anth aged 10 years old – 1984. In his own words: “Act 1, scene 1. Enter HIV”

Some memories remain crystal clear: the name and face of the newsreader, the imposing AIDS acronym in uppercase. But the year? Was it ’83 or ‘84? That would make me nine or 10. Seeing that story and noticing it had something to do with me. The arrival of HIV would get very personal. And now, I can’t begin to imagine how my life would look without it.

My sero-conversion took place in those years or earlier, but I have no memory of it. Nor can I recall being tested or told that I had acquired HIV. I do remember how it felt to hear people, especially adults, joke about AIDS. The hollow feeling of laughing along with them, to reveal nothing, and how their language suggested a fate worse than dying. How would they react to knowing HIV was so close? As close as me?

“Forward seven or eight years, mid-final year high school, and time to commence treatment. AZT three times a day meant swallowing pills at school. Not easy without being seen but I managed to hide that act obsessively. And I decided: if I was going to die, I would make a statement in defiance of HIV. I would pass my High School Certificate.”

But would I have time? When would the beginning of the end arrive? But I didn’t fall ill. I just kept going. And the pills did their job.

Several treatment regimens later—well before the current era—lipodystrophy set in. What a drag. The medications were supposedly better but they gradually and permanently sucked the fullness from my cheeks and moved the fat from my limbs to my belly. I still grieve that loss.

But hey, youthful beauty is fleeting, anyway. I now try to wear my body’s battle wounds with pride. They reflect where I’ve been and who I am. My partner jokes that I have a tiny bum. Lucky for both of us, she likes it.

For years, I worried about running out of treatment options. It’s not that long since I gave myself permission to accept that I might actually grow old.

The arrival of the concept: “treatment as prevention” worked wonders for me. And more recently, U=U in its glittering brilliance.

I couldn’t vocalise the words “AIDS” or “HIV” until 1994; when at 20, I squeezed them out as I forced myself to tell my siblings. That was perhaps the best single thing I could have done for myself at the time.

Something shifted, allowing the fear, stigma, and shame inside me, to start to dissolve, clearing the way for healing. Slowly, over a long period of time, I more freely and frequently entrusted others with my secret, and each time I shared, my fear shrunk a little.

But it was connecting with others living with HIV, that really inspired and revealed to me the way I wanted to be. Peers became heroes and champions, and I learned from them how I could dictate the terms of my life with HIV. This led me to discard the shackles of secrecy and celebrate who I really am, by sharing my story publicly in 2016.

Anth McCarthy – 2020

It amazes me and fills me with joy and hope, that something I hid for so long and regarded with such shame, can now be connected to feelings of pride and personal worth. And the meaning, satisfaction, and belonging I derive from working alongside others living with HIV.

This virus has taken a lot from me.  But it has given me a lot, too. And the balance is in my favour.

Bev Greet:

Bev Greet – Positive Women Australia, 1980-1990

Positive Women Victoria was founded in 1988 by me and Deborah Gillies because of the isolation we both felt following our HIV diagnoses. The late, great, and very funny Sonja Ristov, and many other women living with HIV, were also an inspiration during this period.

From 1992, when positive women finally got funding, we had a board that was made up of all positive women. I served as chairperson for ten years when there was no limit of tenure.

It was a time of urgency and grief as women were getting sick and dying as there were no combination treatments then.

“Most of the women on the board were not out as HIV positive because of the stigma and discrimination they faced. Consequently, there was only one or two of us who would talk to the media. Sometimes under a different name. Sometimes in shadow for confidentiality reasons.”

We had annual retreats and at each one, we didn’t know who would be alive the following year. It was scary times. Funerals were commonplace. Who would be next?

We were brave women and yet we still tried to help others.

Bev Greet

1990s

Adrian Ogier:

Adrian Ogier – Queenstown NZ, 1991.

The night before receiving my diagnosis was the last time I read my own Tarot cards. No matter how I dealt them, the cards kept giving me the same message: “Worse fears realised.”

I suppose I knew anyway. I felt sick. My throat was so sore it was agony to swallow. I had a strange rash on my torso.

It was 1991 and my partner at the time was positive. We always played safe. Except for one time two weeks prior. We didn’t know about viral loads back then. Oral sex was still bandied about as “pretty safe”. But in our case, that time, it clearly wasn’t.

“I had been working in the sector for a couple of years. And the shame I felt for succumbing to a virus I thought I understood was overwhelming.”

My doctor reassured me that more treatments were on the way; that seroconverting now was better than if I had five years ago. I asked for valium and lived on them.  I saw a psychiatrist and spent our entire first session in tears.

I went on AZT immediately as part of a seroconversion trial. But the side effects of high dose AZT on top of everything else was too much.

And at some point I stopped taking them.

People around me were dying but I was determined not to.  d4T came and I took it. Then 3TC and Saquinavir. At one point I was on a concoction of all of them.

Huge handfuls of pills that made me so sick I spent most of the time in bed. Or on the toilet.

I practiced yoga and took Chinese herbs, partied, and played with drag. I decorated boxes with sequins and got a dog.

Those years are a blur. I find it hard to put things in sequence. But at some point, I started to feel better. Perhaps this was around the time when combination treatments started to work.

Or perhaps it was when I returned to work in the sector in peer support.

I certainly remember telling someone who was distressed about his own seroconversion that things do get better.

And yes, I know that’s not recommended.

Adrian Ogier – 2020

But it was true for me.

And I believe it helped him, too.

Heather Ellis:

Heather Ellis on her motorcycle ready to leave London for the Silk Road in 1996.

I was diagnosed with HIV in London on 14 September 1995. No one ever forgets their date.
I wasn’t sick or even feeling a little unwell at the time. I had the test as a requirement for a three-month Russian visa. I’d enrolled to study Russian at the Moscow University over the winter of 1995/1996.

It was all part of my world motorcycle journey with Russia and the Silk Road the second leg, following my ride through Africa.

HIV was a death sentence back then, so my HIV diagnosis came as a complete shock. It was a year before the discovery of protease inhibitors. Yes, I’d had one moment of unprotected sex with a gorgeous man in Mali, North Africa. And I didn’t have condoms and neither did he.

The elderly doctor at a GP clinic in outer London near where I lived, told me I had five years to live but added ‘scientists are finding new treatments all the time’. He advised I return to Australia to my parents and that our healthcare system had more money than the NHS. He also gave me a brochure for a support group for women with HIV.

I was definitely not going to tell my parents. I feared their rejection (this is internalised HIV stigma), but more than that, I did not want to hurt my mother. This was my fight.

I didn’t believe the result and had a second test at a HIV clinic at London’s Chelsea Westminster Hospital. I remember waiting at the HIV clinic, which was packed with emaciated young men, their eyes filled with fear and sadness for their young lives lost. I was the only woman.

When I was given the positive result again, the doctor advised, because I was still healthy, not to take AZT. I’d read AZT would kill me faster than HIV. Instead, I went on a journey searching for hope in alternative therapies. I spent a small fortune on ozone therapy, energised water, crystal therapy, and bucket loads of vitamins, minerals, and herbs.

I also went on a journey down the rabbit hole of recreational drugs in search of answers, too. This was London.

It was not until I went to a Positive Women’s support group, where I met several women who had been positive for five years or more and looked fabulous, that I knew I had a chance. I packed my motorcycle and headed across Europe, Central Asia, and China. But before leaving, I went back to the HIV clinic to find out what the HIV was doing and when I would get sick.

“It was November 1996 and while protease inhibitors were saving many people with AIDS, no one told me.”

I was left without hope and with no access to information that we have today via the internet. I had no way of finding out for myself. Instead, the HIV clinic doctor told me about a new test called a viral load test, but I had to pay for it. The test cost £80. He also gave me a good supply of Bactrim, an antibiotic used as a prophylactic for PCP (pneumocystis pneumonia) saying if I got PCP it could be fatal. And despite having a bright red face for many months (which I covered with tinted sunblock), the Bactrim saved me during that journey along the Silk Road.

However, by the time I reached Vietnam, I had AIDS. I knew I had to get to a hospital, so after storing my motorcycle in Hanoi, I took the next flight to Cairns in Queensland. I was so very lucky to have Dr David Bradford as my treating doctor at the Cairns Base Hospital. It was late 1997 and protease inhibitors as combination therapy had by now saved thousands of lives. Within ten days, these meds had saved mine too.

I was out of hospital on Christmas Eve, just in time for a surprise visit to my parents who were none the wiser. It was another two years before they found out. I was in the second year of my journalism degree at the time. They were devastated until they realised I was not going to die.

They were also devastated I did not tell them and allow them to support and love me at this time of my greatest need.

Heather Ellis

Today, I am a mother of three teenage boys, and the author of two published books (Ubuntu and Timeless On The Silk Road). I am also the new Communications and Engagement Coordinator with Positive Women Victoria.

I am loved. I am happy and healthy. And when my boys are old enough and I can leave home, I look forward to embarking on the third leg of my world motorcycle journey from South to North America and beyond.

 


We are always interested in quality writing here at Positive Living. We can’t promise to use them all but if you’re interested in submitting your work email your contributions to: charlie@napwha.org.au (Please limit submissions to 1000 words.)

40 years of HIV in Australia – 2000-2021

40 years of HIV in Australia – 2000-2021

The Institute of Many (TIM) celebrating the power of U=U at the 2019 Mardi Gras Parade

2000s

Charlie Tredway:

Charlie attending his first International AIDS Conference, in Durban South Africa- 2016

“You can do anything you like with no judgment; just please promise me you won’t get HIV.”

These were the words my Mum said to me before I got on a plane to move to Sydney; a woman who volunteered as a buddy for people who were nearing the end of their journey with AIDS-defining illnesses, stigma, loss, and isolation.

After a childhood spent marching with her in the AIDS Walk for Life, having open and frank discussions about sex, sexuality, and safety, and surrounded by many loving and open honorary Uncles who were living with HIV, I really thought that that would be an easy promise to keep as I started my new life as a party queen in the big city.

In November 2005 I had just sent out my birthday invitations with a zesty “Catch 22- don’t worry you can’t catch it twice” theme written out in glitter, wholly unprepared for the cosmic punchline of heinous seroconversion symptoms and an HIV diagnosis the week before I turned 22.

I was diagnosed in a busy city clinic in Sydney and I remember the experience being the equivalent of a revolving door. There was no linkage into care, support, or community, and the information I was given about my new life as an HIV-positive person completely washed over me. All I took from the discussion was that this wasn’t the HIV from the experiences of my childhood, to hold off starting treatment until it was absolutely necessary and that HIV was no barrier to leading a ‘normal’ life.

Even with my upbringing I was woefully unprepared and misinformed about the realities of what it meant to live with HIV; important things like how to manage my health, and what I would face when I first told people, and how utterly devastating it would feel having people spread my status around Oxford St and use it as a weapon against me.

“Stigma and Shame were without a doubt the bitterest pills to swallow as a person living with HIV. It rocked my self-worth, my confidence, my ambition, and my joy.
An unshakeable sense of failure and fear ate away at me and being open and vulnerable was unthinkable. So my coping strategy was to avoid everything real, and fill the void however I could and in the most unhealthy and excessive ways.”

Out of sight and literally out of my mind.

It took seven years for that precarious denial to crash down around me. My health was now unavoidable. By the time I finally saw a specialist and started treatment the damage of my evasion was both inescapable and outwardly evident. I was skeletal, 44 kgs to be exact, my viral load was obscene and my immune system was non-existent with a CD4 count in the single digits and all that entails.

I was admitted into the hospital with just about every single opportunistic infection you could possibly have without any of what we class as AIDS-defining illnesses here in Australia. My luck didn’t hold, and I eventually got diagnosed with one that piggybacked in and took advantage of my weakened state while my body fought off other infections.

I was told in no uncertain terms that if I had carried on with my denial and my bullshit that he doubted I would have made it to 30yrs. Even though it didn’t feel like it with the parade of hospital stays, I was and am incredibly lucky.

I fled back to rural NZ to continue my fight for my health, with my mum bringing the same compassion and love I saw her harness in the 90s.

I didn’t find my peers and a way forward until 2014 when I by luck stumbled across an article about The Institute of Many, a peer-run, grassroots movement for People Living with HIV. Without any hyperbole, it and the connection to community, knowledge, shared experience, and support saved my life and gave me the safety net and inspiration to dive wholeheartedly into a new brighter one.

One where I am unequivocally open about who I am and my status, and entirely devoid of shame about it.

At the 2018 International AIDS Conference in Amsterdam.

 

Sarah Feagan:

I was diagnosed with HIV in 2008, just after my 21st birthday.

This was a time of effective treatment when people with HIV were celebrating good health. Sadly, that wasn’t my experience.

“I had a lot of trouble accepting my diagnosis … and how it changed me from an independent, successful, and sexy person … into one who felt dangerous, untouchable, and unworthy. “

The health messaging for people like me wasn’t there, even in 2008. And my first response to my diagnosis was an attempt at suicide. I was luckily found in time and taken to hospital. But while I was unconscious, the nurse asked my parents if they thought this was related to my recent diagnosis … effectively outing me.

It could have gone terribly wrong … as it does for many people that have disclosure taken out of their hands.

I count myself very lucky to be born to beautiful parents. And when I woke up, they were by my side, offering all their love and support. My sister, some close friends, and even my grandmother showed up to wrap me in their love and compassion.

So, with their help, I became determined to move forward and get on with living.

But outside this bubble of care and kindness, the experiences of stigma and discrimination started. I was physically assaulted and told to die. I had children removed from my arms … and even from my vicinity.

As a queer woman, I was told I was trying to give the lesbian community AIDS. To the heterosexual community, I was feared and not to be trusted. Being open about my status impacted my employment and ability to work.

Stigma and discrimination were literally everywhere I turned, and these experiences at the time made it seem pointless to adhere to my medication and care for myself.

I was basically a car crash waiting to happen, and with my hands off the steering wheel, I crashed hard.

In my early 20s, I developed an AIDS-defining illness and was palliated. But because of my mother’s interventions and care, I was moved off the palliative ward and into ICU.

I ended up in a coma for 3 months. I was in a critical condition the whole time. My parents were told to plan my funeral.

But I woke up. I was emaciated, I couldn’t breathe, I couldn’t walk, but I started living for those who cared enough to carry me through those months in hospital.

Fast forward a year. I had met and connected with the HIV community, not just in Australia but around the world.

From these peers, I learned about my privilege as a white cis woman: my health access and the knowledge that I may not want to live with HIV, but I can… and that I owe a lot to those HIV activists who have gone before me that made these treatments, and my ability to find my way back to good health, possible.

After this eye-opening course in HIV history and privilege, the option to do nothing just wasn’t an option.

I had learned and seen too much.

It had lit a fire in me.

2010s

Steve Spencer:

Featured in DNA Magazine’s World AIDS Day article. Photo by Christian Scott

I must have dropped my umbrella at least five times in the 400m between the clinic and my front door. Once in, I dropped myself to the floor and screamed for what felt like an hour. My housemates ran to me and held me as I said something I never ever thought I would actually say, something I barely thought possible let alone would happen to me; “I am HIV positive.”

This day would set off a chain of events that I am still living through daily.

Much like the Big Bang, there was the initial heat, the cooling-off, and the formation of something new.

“It was easy for me to think in these grandiose and conceptual terms at the time, it felt like the Universe was having a big old joke with me – a prominent PrEP advocate and user that helped thousands of people get onto PrEP and avoid HIV transmission getting HIV himself?”

For a lot of people, my diagnosis defied belief. I would come to find myself in the middle of dozens of conspiracies, theories, gossip, none of which have ever explained to me how I actually ended up with HIV.

But this happens to all of us, we wonder what happened, other people gossip about what they think happened, it’s a tale as old as the epidemic.

Since my diagnosis in late 2018, and especially in the early days of speaking to other PLHIV, I came to realise that all of this internal theorizing is just noise.

They showed me that what happened to me is not special; most of us living with HIV don’t know how we got it, none of us wanted it to happen, it just happened and what happens next is most important.

What truly matters now to me is how I get to walk this planet – it was a fork in the road; do I dwell on the ‘what if’ and the ‘how’ and the ‘why me?’ and go down that dark road or do I do what millions of other PLHIV have done before me and chose to build resilience and keep on living?

I choose to keep on living. And I’ll tell everyone that comes after me to do the same.

I had come out as bisexual only a couple of months before I was diagnosed, and so my mind also went to how I was going to live fully and proudly as a bi man living with HIV – I knew how gay men talked about HIV because I had lived as a gay man for many years, but outside of that well-resourced community, what was it going to be like?

It was scary and it threw me back into the closet in many ways. I had to focus on my health, focus on keeping myself afloat, and as a consequence, my development as a person had to take a pause, and that can be incredibly detrimental.

“Now, let’s get to the good news – and it is great news really. Being diagnosed in 2018, in the era of PrEP and U=U, meant I got to benefit from decades of medical and social advances, by all measures the outcomes for people being diagnosed today are better than they have ever been.”

I left the doctor’s clinic (after they took what felt like a litre of blood from me!) and went straight downstairs to the pharmacy with my script, I filled it and I started my treatment immediately.

I achieved an undetectable viral load within six weeks – which meant that sex was back on the menu for the end of summer, yay! It felt like a miracle, but it was just science, it was just being in the right place and the right time, and I feel so lucky for this.

Yes, I dropped the umbrella, yes, I screamed a lot, but I knew that I would be okay.

I am so appreciative that I have access to incredible treatments and support services – something many, many people don’t have access to, right across Australia.

Unfortunately, it was the same doctors that empowered me to take control of my health proactively that also subjected me to some of the worst HIV stigma I have ever come across.

Mind you, while this is all happening my story is everywhere in the media, my inboxes are full of thousands of messages of support (albeit heavily peppered with messages of hate and HIV stigma).

I was sent screenshots of people threatening to physically assault me, people were giving out my personal details including my address, people were abusing my partner, people had set up fake dating profiles with private images of myself and telling people I wanted to “infect” them.

Whether it is one person, a handful of people, or a hundred people talking about your HIV diagnosis behind your back when you are trying to process it yourself, it makes it so much more difficult.

Even something as simple as leaving the house became a challenge. I don’t know if the fear was real or not (do online trolls really follow through?) but I wasn’t willing to stick my neck out to find out.

Through all of this, I maintained that none of this vitriol or stigma was really real unless it was right there in front of me rearing its ugly face. That face, I came to learn, was sitting at a doctor’s desk and I’ll never understand why.

Why when I came to my doctors, fearful about the bullying I was receiving, their recommendation was that I move out of Sydney. I was accused of being dishonest about my situation, while they lied about sharing my private medical details with other patients. I was told that my PrEP advocacy was dangerous and that I would be to blame for other people getting HIV.
You couldn’t make this stuff up.

HIV stigma in healthcare settings is not just common, it is particularly harmful because we should feel safe, we should feel validated and trusted, and it is the biggest betrayal when healthcare providers stigmatise you – it stings so bad.

My story here, again, is not that special – the same things have been said to people living with HIV for the last 40 years, the details are just a little different. We are told we are dangerous, we are liars, the onus is on us to deal with other people’s ignorance and cruelty.

So where to now?

The Big Bang of my diagnosis and what followed it have finally cooled down and I am able to focus on my passions again. I am able to give back and am able to be an active part of that rich history of positive people moving the dial towards a better society.

Not long after my diagnosis I fell in love with a caring and compassionate HIV-negative guy, one who not just accepts my HIV status and bisexuality, but actively praises and promotes it. I am lucky and incredibly grateful. I don’t think I would have had that belief in myself if it wasn’t for the people around me who supported me after my diagnosis – I describe it like being wrapped in cotton wool by my HIV-positive siblings, they kept a close eye on me and always made sure I was alright.

I’m feeling more whole as a person as well – it would be bold to say I am complete, but I’m certainly feeling pretty full. None of my fears around the intersection of my HIV status and bisexuality really came to pass, in fact, I found incredible support and allyship within the bi+ community.

Despite all we go through, there is still plenty of wonder and beauty in life and no matter what. I know I have the positive community, the bi+ community, my partner, my friends, and my family, right there with me. And I’m right there with you all too.

Vicky Saputra:

Living in Australia is my lifelong dream. I am still fighting for it today.
After studying in Melbourne for two years, I finally completed my master’s degree. I was on track to permanent residency and actively applying for a job to advance my career.

Six months later, I hit rock bottom.

I will remember this day for the rest of my life. It was August 22nd, 2019, and I had just found out two things. First, that I was HIV positive. The second was that my dad in Indonesia had suffered a stroke.

“I felt like all my dreams were crushed and my life was falling apart. I didn’t think I would survive that night alone, so I told my mum, sister, and best friend back in Indonesia. Their unconditional love helped me to get through that night.”

I made up my mind to seek professional help. I met a counsellor at my sexual health clinic, who provided me with a safe place to talk about my anxieties about HIV.

My nurse and doctor there also introduced me to living with HIV. This was the first time that I had heard about antiretroviral medicine. I learned that by taking one tablet a day, I could suppress the level of virus in my body so much that I am able to live a healthy, normal life without the risk of transmitting the virus to anyone.

During the first two months of my diagnosis, I still felt that I was losing control of my life. I was worried about my future here in Australia and anxious about my dad’s condition in Indonesia. I suffered a lot of panic and anxiety attacks. Sometimes I could forget about HIV for a moment when I buried myself in work. But when I was by myself in my room at night or walking alone to the station or the car park, panic attacks came knocking on my door and I couldn’t breathe.

I knew that being HIV positive would limit my options to apply for permanent residency in Australia. I couldn’t bear thinking about going back to Indonesia. Life is difficult enough as a gay man, let alone being HIV positive. LGBTIQ+ and HIV-positive people in Indonesia face a lot of discrimination, homophobia, stigma, rejection, and backlash from society. Same-sex marriage is not legal, and in some areas, homosexuality is criminalized and punishable by prison or fines.

Later that year, I joined Living Positive Victoria’s Phoenix workshop for people recently diagnosed with HIV. I learned about HIV in more detail, other STIs, and disclosure. I met other people living with HIV and shared my HIV experience with them as well.

Another thing that plays an important role in maintaining my mental health is volunteering. My first volunteer experience with Thorne Harbour Health was during World AIDS Day, promoting the U=U campaign. I was handing out red ribbons and wearing a white t-shirt with a powerful message “HIV still Matters” in the middle of Melbourne’s CBD. It was an inspiring and amazing experience for me. I also volunteer at Acceptance Melbourne LGBTIQ+ Catholics, the Victorian Pride Centre, and the Positive Asian Network Australia.

Through volunteering, finally, I knew that this community is where I belong and I can give something back, no matter how small it is. I also get a chance to witness the work of a lot of amazing and inspirational people.

One big step on my HIV journey was participating in a workshop run by the Positive Leadership Development Institute.

“The most important thing I learnt was that I could make a difference in the community by finding my voice as a person living with HIV.”

This led me to become a speaker at the Positive Speakers Bureau. Apart from taking a leap of faith, the main reason I joined was to put a human face to HIV. By sharing my story, I am hoping to inspire people and reduce fear, stigma, and discrimination against people living with HIV.

Being diagnosed with HIV has taught me important lessons. It has made me question who I want to become, and what kind of people and community I want to be surrounded with. It taught me the true meaning of resilience.  How to live in the present, doing my best in life as much as I possibly can, and embracing the future by letting go of the things that I cannot control.

My experience of living with HIV has shaped me into who I am today and if I were to be given the chance, I wouldn’t change it even for a bit. I am happy and proud of who I am today.

I wanted to write about my hopes for the future as a person living with HIV. Of course, I hope that someday we will find a cure. Apart from that, I hope all people living with HIV could have equal access to HIV medication, more people get educated about HIV, which could reduce transmission, stigma, and discrimination.

Ultimately, we need more opportunities to empower people living with HIV across the world so that they can reach their full potential.

 

This piece by Vicky Saputra was originally featured in POSLINK Issue 96, Spring 2021, and is featured here through the generosity of Living Positive Victoria.


We are always interested in quality writing here at Positive Living. We can’t promise to use them all, but if you’re interested in submitting your work email your contributions to: charlie@napwha.org.au

(Please limit submissions to 1000 words.)