This Is The Face Of An HIV Positive Person

I met Abby Landy two months ago, when we were in training to become “positive speakers”. That’s not about walking up to people and talking at them with good humour; it’s when you stand in front of a room full of strangers and tell them you’re HIV positive.

Abby is a 25-year-old woman. She’s heterosexual, she’s white, and she has known she is HIV positive since February last year, when an aggressive ex-lover left her with illness, cold sores, and a text: “At least you’ll remember me forever.”

Abby doesn’t fit the stereotype for HIV positive people in Australia, but that’s her status, and her experience is not uncommon.

Earlier this year, Australia was exposed to its highest increase in HIV infections in over a decade. Of the 25,000 HIV positive people in this country, one in ten are women, compared to 60%+ in other parts of the world. While HIV is predominantly a gay man’s disease here, that doesn’t stop it affecting other people’s lives everyday — nor does it mean heterosexual women and men aren’t at risk.

This Sunday, Abby will be be sharing her story publicly as a keynote speaker for Positive Life NSW’s World AIDS Day event. While most 25-year-olds will be dealing with their hangovers, Abby is outing herself as HIV positive in front of the Health Minister and a room full of TV cameras.

Abby sharing her story is a great start to a new wave of leaders in the HIV community. I asked her what being a PLHIV (Person Living With HIV) meant in 2013.

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Nic Holas: When people think of HIV positive people in Australia, a 20-something woman doesn’t spring to mind. How do people react to your status?

Abby Landy: People react with shock, disbelief and often pity. A lot of the time the responses I receive position me as a victim, but that’s not how I feel.

People tend to be quite inquisitive, too; they’re often interested to hear about how I came to be positive and what it means for my life, because most of my peers know very little about what it means to be living with HIV today.

Take us back to your diagnosis. What were some of the first things you remember doing?

I remember the first thing I said to my doctor when I received the diagnosis: “I don’t want to live with this.” It felt like the worst possible news I could have been given. Shortly after that, I called my aunty, who was working near my doctor’s surgery in Melbourne, and she came and took me back to her house where I spent the next few days. The support I received from my family after diagnosis was amazing; I’m very grateful for it.

When I was diagnosed, I was seroconverting [the early stage, in which the virus begins to replicate in your system] and quite unwell, so the shock of the diagnosis was combined with some pretty severe discomfort, the rash and the aches and pains and nausea that I experienced.

As soon as I got back to my aunty’s from the doctor’s surgery I went straight onto the internet to learn everything I could about HIV. This has not changed from that day to now; I still read everything I can, watch everything I can, and meet as many people I can who are either living with the virus or involved in some way.

It’s great your family was so supportive. How did your friends react?

With sadness. I think every one of my friends that I told cried for me. None of us knew what it meant in the beginning, so we were all very scared. But I was not ostracised by any of my friends, I didn’t experience any negative repercussions as a result of telling them, and they have been an amazing source of support for me in coming to terms with my diagnosis.

The most powerful thing for me in sharing my diagnosis with them is the disbelief and the realisation that I see them come to; so many of my friends have said, “It could have so easily been me.”

With my diagnosis I’ve learned so much about the reality of what it means to live with HIV, and with the knowledge I have gained, my friends have also come to be well-versed. Now they’re not so concerned about my health but rather what it means for me socially, and on a day-to-day basis.

“It could have been me” is such a familiar statement when you disclose your status to friends. How much knowledge did your friends have about HIV? Were any of them in regular STI testing patterns?

My friends had next to no knowledge about HIV, and testing was very sporadic. Since my diagnosis I have spoken to a lot of my friends about their experiences with STI testing and their attitudes towards their sexual health, and a message that I hear loud and clear is that HIV is not something they give much thought to.

I have a number of friends who have spent extended periods travelling, and when they return to Australia they often go to get an STI test — but even then, many of them are not offered HIV tests, or are offered but told it’s unnecessary because the risk for young, heterosexual Australian women contracting HIV is so low. This is very frustrating for me, because I was in the same situation. If I hadn’t insisted on being tested after something that my partner said raised concerns, I would not have been tested, and probably still wouldn’t know my status.

If that awareness is limited at a GP level, and people are walking around not knowing their status, how much safer sex do you think goes on in the straight community?

Despite the increasing rates of all kinds of STIs, many people in the straight community are still blasé about protected sex, as far as I’m aware. There are a lot of things at play when it comes to negotiating for condom use and what you are comfortable doing and not doing in a sexual relationship. That’s why I want to share my experience with other young women, and make them aware that we are all agents of our own sexual health; it is vital that we are assertive when it comes to protecting ourselves.

We are all agents of our own sexual health; it is vital that we are assertive when it comes to protecting ourselves.

Gay men who choose not to use condoms are often branded “irresponsible barebackers” — a term we don’t hear when talking about unprotected straight sex. Why do you think that is?

Despite the leaps and bounds in societal acceptance of the gay community, there’s still an undercurrent of fear and a lack of acceptance from many. HIV is still thought of as a “gay” disease by a lot of people, even though in other parts of the world it’s predominantly a heterosexual condition.

The stigma associated with HIV is in large part a result of fear, prejudice and a lack of understanding. The sad truth is that a lot of the discrimination people face as a result of their positive status is because people think it is an evil condition, for which someone is to blame for spreading. In reality, anyone can come into contact with and contract HIV, but until society at large can understand and accept that, the finger is often pointed at those who they think are responsible.

As a sex positive gay guy, some of the stigma I experience when disclosing my status is, “Well, it had to happen to you eventually.” Is that the same for you as a HIV positive woman?

That’s one thing that I don’t have to face as a positive woman. In fact, it can go the other way: I’m such an unlikely candidate that it can raise questions about what I was doing to put myself in such a position.

I had never even thought about the possibility of me contracting HIV, and I think that’s the case for a lot of other people too. As a positive woman, however, the assumption can be that I was sleeping around, or a ‘slut’ (a term which I completely despise) — but one thing I’ve learned is that positive people are not a type. We are all different, we come from all backgrounds and walks of life, there is not one type of person who is precluded from coming into contact with HIV. When people make assumptions like this they are hard to take seriously; I’ve learned first hand how wrong they are.

There are some people who may question my morals, or call me a slut behind my back, but I really do not give a shit.

There seems to be a strong community of HIV positive women in Australia. Have you felt welcomed by them?

It’s one of the most inclusive clubs I’ve ever had the privilege of being inducted into. The support I get from other positive women is the single most valuable source when it comes to living with HIV. There is so much love and acceptance, and I will be forever grateful for the relationships I have built as a result of contracting this virus.

The one thing I would ask, if I could, is that more HIV positive women get involved with the community. We really are each other’s greatest source of support.

The one thing I would ask, if I could, is that more positive women get involved with the community. It really has been a vital step in my coming to terms with the diagnosis, and other women who are living with HIV are such an invaluable source of information and just a great sounding board when it comes to dealing with the ins and outs of living with HIV.

Women make a small percentage of PLHIV in Australia, but we do exist. As a group, we’re often overlooked, and I think that is part of the reason why a lot of ignorance still exists around the virus.

I hope that by being transparent and public about my status I can encourage other women living with HIV to come forward and connect with other positive women. We really are each other’s greatest source of support.

As HIV jumps the generational line from those who remember the ‘80s/’90s to those who don’t, there’s a lot of talk about the next gen taking over activism and awareness. Do you feel responsible for leading the charge at all?

I do feel a sense of responsibility, purely because of all the people who have contracted and could have contracted this virus; I feel like I’m in a position of privilege to share my story. The reality of living with HIV is that a lot of people are not able to speak about it for fear of repercussion. I am a young, educated woman with access to an amazing health care system and fantastic open-minded family and friends … It would be a shame for me not to take this opportunity to make the future for other positive people brighter.

We are so lucky to have contracted this virus at this stage of its life, when treatment is so effective, and when social movements are mere clicks of a mouse away. I am excited about what I and other young people living with HIV can do to change the face of the virus.

What’s the most important thing people your age need to know about HIV?

The most important thing is that they know they are at risk. People need to be aware that HIV can affect anybody; it is so important that they get tested so it can be identified early. People who know their status are not the ones that pass the virus on; people who are tested regularly and get diagnosed early are able to start treatment, which means they can live near-normal lives without passing the virus on to others.

The other thing they need to know is that HIV doesn’t change who you are as a person; it doesn’t make you poisonous or scary or lesser in any way. It is a chronic medical condition which is now very manageable and treatable, and people can live full lives with families of their own, sexual relationships, health, and love.

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This Sunday, December 1, is World AIDS Day: a time to honour those who passed and remind ourselves that this problem hasn’t gone away. With HIV on the rise, we need new ways to learn about the disease, and who it affects. 

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Nic Holas is a writer who focuses on the contemporary gay experience, and being a person living with HIV. His writing has appeared in Hello Mr Magazine, Star Observer, The Needle Prick Project, and Cosmopolitan. You can find him on Twitter @nicheholas, or in his role as co-founder of HIV social umbrella The Institute of Many.

Feature image via Bobby Goldsmith Foundation