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Abby was just 23 when she was diagnosed with HIV.

Image: Abby Landy

Abby Landy was diagnosed with HIV when she was 23.

Like many young people, she had no idea what life with the chronic illness would be like – nor did she realise it was a possibility for her.

“It felt like game over, that was the end. I was thinking, ‘When am I going to get sick, when am I going to die?’,” Abby, now 26, says. “As a woman I didn’t even realise I was at risk.”

Despite these initial fears, Abby’s daily life has scarcely changed three years on. Now, she wants other young people in her position to realise that being HIV positive doesn’t have to stop them living a normal life.

Abby, a Sydney-based legal assistant and part-time law student, was diagnosed with HIV in the wake of an abrupt breakup. “I was seeing a guy – it was a short relationship and he was the one who ended up infecting me,” she recalls. “I wasn’t comfortable with some of his [sexual] behaviour, so I ended things.”

Within a few weeks of the relationship ending, symptoms began to present. At first, Abby experienced an outbreak of cold sores - the first ones she'd ever had - which were followed by flu-like symptoms including nausea, aches and pains, rashes and a run-down feeling.

"I didn’t know you could feel that unwell without dying; it was the sickest I’ve ever been," she says.

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Abby visited her GP for a sexual health screening, and decided to contact her ex to ask if he was aware of having any STIs. "Everything else had come back clear but I’d been doing some Googling and had those worst case scenario thoughts. He said he’d been tested and didn’t have any sexually transmitted infections or anything; I did actually bring up HIV and ask if that could be a possibility and he said ‘No way’."

Your cheatsheet to the HIV treatment you didn’t know existed

However, her suspicions were raised when after several attempts to contact her and 'catch up', the man sent Abby a text containing a somewhat ominous message: 'I hope you at least remember me forever.' That's when she realised HIV could be a possibility.

"I went back to the doctor and asked for the test," Abby says. "I was already feeling really unwell so it all just felt like that was a possibility in that moment, which it obviously was."

When Abby approached her GP, she was told an HIV test "probably wasn't necessary" - it's not usually offered or even suggested as part of a general sexual health screening. If Abby hadn’t insisted on it, she wouldn't have been diagnosed.

Eventually, Abby's test results came in - and they were positive. She was devastated.

"I had the same preconceptions of HIV that everyone else did. It felt like a failure and I was ashamed ... I said to [my doctor], 'I don't want to live with this'," she recalls. "I had all of those [scared] thoughts going through my head, and saying, ‘well nobody’s going to want to touch me again when I’ve got this’ - those thoughts you would expect."

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However, Abby's been surprised by how little her life, health and relationships have been changed by her positive status.

Abby's health regimen involves taking two pills every day, which don't cause any side effects; and physically she doesn't feel any noticeable difference. She says once treatment has started, people with HIV can live long and healthy lives - it's when the illness goes undiagnosed that it can impact on a person's health.

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The life expectancy of people living with HIV is close to that of someone without it, while the availability of treatment also means HIV positive women don't have to give up their dream of having children. "It's not an issue – with treatment, you can have a baby and the chance of passing on the virus is miniscule," Abby explains.

"It's not as bad as it once was. It’s not that thing you saw in the '80s, where people get skinny and they get those black splotches all over their body, and a few weeks later they’re dead. That’s just not the reality of HIV in 2014 - it's really well managed."

Physical health aside, you might expect an HIV positive status would make dating more complicated, especially when it comes to telling the other person about the illness. But that hasn't been the case for Abby.

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"I’m obviously really public with my positive status, so anyone that knows me well enough to be getting to a point of having to negotiating sex is going to know that I have HIV," she says. When she has disclosed her status, the response has been positive.

Abby is now an advocate for HIV positive Australians

 

"People have still been interested ... it hasn’t been [a case of them saying] ‘well then, no, I’m done’. If you practise safe sex it’s not an issue. I’m also on treatment and my viral load [the level of HIV in a person's blood] is undetectable, which means I’m much less likely to transmit the virus, even if there was a condom breakage. Also, female to male transmission is also quite rare."

Abby says the most "damaging" aspect of living with HIV is the widespread stigma and misconceptions attached to the illness, including the assumption that it only impacts gay men, sex workers or injecting drug users. The reality is, anyone can contract HIV, and the diagnosis doesn't mean the end of the world.

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"It’s just not the reality. The main way the virus has changed my life is that I’m passionate about talking about it and educating people that they are in fact at risk, but that if they do get that diagnosis that it’s not game over," she explains.

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Abby's concerned that young people aren't receiving adequate education about the risk of STIs or the importance of safe sex.

"The overwhelming message I do hear when I tell my story is, ‘Oh my god, that so easily could have been me’, and then complete ignorance about what it means to live with HIV," she says. "There’s a serious lack of understanding about what the realities are; I think young people are also complacent about their sexual health. There’s an attitude that antibiotics can fix everything, and people just aren’t using protection – you can see that in the rates of the other STIs going up. I think there are gaps."

For Abby, meeting other HIV positive Australians through her advocacy work, and having access to support services, has been invaluable.

"Connecting with other people and being really inspired but what they’re able to do with their lives has been key in getting me to this point where I’m comfortable with discussing my status. There is really valuable support out there for HIV positive people - you just have to look for it."

Abby will feature in the documentary 'Transmission: The Journey from AIDS to HIV', which premieres in cinemas on Wednesday November 19. The film breaks down common misconceptions, such as the idea that the virus only affects gay men, and is being shown in the lead-in to the 20th International AIDS Conference, AIDS 2014.