“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.
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 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.
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.
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.
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.
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.
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.
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.
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.
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