Prologue
I can’t live with this. If this doesn’t kill me, I sure as hell will.
That was what was running through my head at about 9am on Friday, 24 February, 2012. My doctor had just said the words I’ll never forget: ‘I am so sorry, but it looks like you have contracted HIV.’
These words changed everything. I don’t remember much about what happened immediately after, but I do remember saying to my doctor: ‘No, I can’t live with this.’ I absolutely and completely believed that was the truth. In the space of time it took my doctor to say the words, my world had been irreparably altered; nothing was ever going to be the same. I knew in that moment that if this virus wasn’t going to kill me, I sure as hell was going to.
When you think of AIDS and HIV, you might think of a terrifying advertising campaign that launched in 1987. A Grim Reaper figure, complete with scythe in hand, rolls a bowling ball towards a group of innocent people, to the tune of tinny music and a voiceover stating facts such as 50,000 men, women and children now carry the AIDS virus, and if not stopped, it could kill more Australians than World War II.
It’s something more akin to a horror film, totally problematic in our present-day context, and it’s wild to think of an ad like this being approved for television in the new millennium. To see this advertisement was to remember forever – so I guess it left its mark and achieved what it set out to, which was instil fear in Australians. It certainly had an impact on me, at least through my parents and other people who were a little older and could remember it from the time.
On that Friday morning almost a decade ago, I was twenty-three years old, living in Melbourne with friends, studying at university. Right up until my diagnosis, I’d always been fit and healthy. Life was good, and I was generally having a great time.
HIV was certainly not on my radar – it wasn’t something I even talked about with friends. I lived in a bubble of naivety, protection… I genuinely felt as if nothing truly horrible would ever happen to me.
I knew so little about the realities of an HIV diagnosis. In those first moments – even weeks and months – I genuinely believed it was going to make me horribly sick and kill me. And, most importantly, that it was something I should be ashamed of.
HIV stands for Human Immunodeficiency Virus; it can be transmitted via the exchange of bodily fluids, like blood, semen and vaginal secretions. Through unprotected sex, sharing needles, blood transfusions or from parent to child through pregnancy, childbirth or breastfeeding (though parent to child transmission is preventable). HIV cannot be transmitted by casual contact, like by sharing a bathroom, sharing a drink or kissing, nor can it be transmitted sexually from an HIV-positive person who is on antiretroviral therapy and who has an undetectable viral load, known as U=U, or ‘undetectable equals untransmissible’.
HIV attacks a person’s immune system, destroying white blood cells that fight off disease and infection, and it can lead to acquired immune deficiency syndrome, or AIDS, which is the late stage of HIV infection. AIDS occurs when a person’s immune system has been badly damaged by the virus.
There is no cure for HIV, but there is now medication, referred to as antiretroviral therapy, available to treat HIV, which means that most people living with HIV who have access to this medication can live well, and not transmit the virus to their sexual partners.
It’s sad to look back and think about my initial response: the horrific, all-consuming fear.
At the time of my diagnosis, I held some of the same prejudices and misconceptions that so many people do about HIV – prejudices and misconceptions that I suppose you only really have to address when HIV enters your world. I understand now that I felt this way because of a lack of education and understanding.
Of course, I no longer feel that way. I know now that I’m not going to die of HIV or AIDS, and I’m not going to kill myself.
But at that point, that morning, in the doctor’s office, it was the most horrifying, impossible piece of information I could imagine receiving – worse than cancer, worse than anything else I could think of.
In the ten years since my diagnosis, I’ve heard other people’s stories and often think they handled it so much more philosophically and graciously than I did. I wish I had been more accepting and open minded, but that’s now something I’ve achieved with time, as well as support, education and understanding.
Although I sometimes feel as if I could’ve ‘done better’ with my reaction, I also know that I wasn’t alone in the fear, isolation and terror I felt; so many others experience the same feelings after an HIV diagnosis. That’s why I first agreed to share my story and eventually write this book. My initial reaction to my diagnosis was a result of a lack of understanding or appreciation for what living with HIV would actually mean. It took me so long to learn that it was okay, and I was going to be okay.
I would have loved to read a story of someone who had experienced what I was experiencing. I hope that by sharing my story, I can offer that gift to someone else.
I have chosen to structure this book as a series of frequently asked questions about HIV. If you’re someone living with HIV, I’m sure many of the questions will be familiar. Or perhaps, even if you don’t know anyone living with HIV, you might still find them familiar – they might be running through your head right now as you read. I’ve attempted to answer them as best I can in this book.
For the most part, I’ve been happy to answer people’s questions about HIV, and share my experiences. I think it’s wonderful when people want to learn more. However, I would also encourage anyone curious about HIV, or anyone with a family member, friend, lover, or potential lover who is HIV positive, to also educate themselves and do their own research without relying solely on the person living with HIV to do the educating. There are so many great resources available, some of which are noted in the back of this book, offering a great place to start.
In my experience, to live openly with HIV means to be asked questions about it – sometimes crude and harsh, other times more gentle, depending on the tone and context. I understand that people are genuinely curious, and want to learn, but honestly, some of those questions are incredibly personal and can be upsetting to someone living with HIV. People often blurt out questions without thinking, and I believe that we all have a responsibility to consider the consequences and impact on the person we’re asking.
Thank you for reading my story with gentleness and an open mind – we’re all human, doing our best to thrive.
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