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Living with HIV – what it’s actually like to be HIV positive in modern-day Queensland

A photo of Nathan
Nathan, who has lived with HIV his whole life, says he's just a normal guy who happens to have a chronic health condition.

How much do you actually know about HIV and AIDS? If most of what you know comes from movies or news stories from the 1980s and 90s, it might be time to update your information.

Did you know, for example, that modern medicines mean that most people in Australia who contract HIV will never develop AIDS, and can go on to live a very normal life? Or that there’s medication that can protect people from contracting HIV in the first place?

We spoke with Dr Graham Neilsen,a specialist sexual health physician, and Nathan, a young man who has HIV, about what HIV is, how it can be prevented and treated, and what it’s like to live with HIV in modern-day Queensland.

What is HIV?

HIV is a virus – its full name is Human Immunodeficiency Virus. If left untreated, HIV can progress to Acquired Immune Deficiency Syndrome or AIDS. This means that the virus can cause damage to the person’s immune system. Eventually, their body won’t be able to fight off things like infections or cancers, and they can become very sick.

How can you get HIV?

While you may already know that HIV can be transmitted through unprotected sex, there’s actually a number of ways HIV transmission can happen.  HIV is transmitted (spread from one person to another) through blood and other bodily fluids, such as semen, vaginal fluids and breastmilk.

Dr Neilsen says, “HIV is a bloodborne virus, and that means that it's possible to be transmitted through sexual activity without condoms, sharing injecting equipment, from mother to child during pregnancy, at delivery or after delivery through breast milk. And, also, in parts of the world where blood is not screened, through blood transfusions and blood products.”

When someone has HIV, they can be described as being HIV positive. At 26, Nathan has lived with HIV his whole life. He contracted HIV from his mum, who was HIV positive when she was pregnant with him.

“My mum contracted HIV first and then passed it on to my dad,” says Nathan. “They were both very well aware of it; my mum was pretty sick at the time when I was conceived.”

Who gets HIV?

Nathan doesn’t fit the stereotype many people think of when they picture someone with HIV: he’s a young, healthy-looking, heterosexual guy. Dr Neilsen says it’s important Queenslanders know that anyone can get HIV.

“HIV can affect anyone in the community,” Dr Neilsen says. “People of any race, sexual orientation or economic background can contract HIV.”

Some people think that HIV and AIDS are illnesses that only affect gay and bisexual men. But Dr Neilsen says that this belief is incorrect and could put many Queenslanders at risk, with 25% of new HIV diagnoses in Australia resulting from heterosexual sex.

“If anything, over the last few years HIV is becoming less common in men who have sex with men. Over the past 5 years, we’ve seen a small decline in new infections among men having sex with  men in Queensland, although heterosexual transmission has increased slightly in recent years.

There's a belief amongst heterosexual people that HIV is a condition that affects people other than themselves, and that's not true. If people are having unprotected sex, be it straight or gay, there remains a risk of infection with HIV.”

How is HIV treated?

Antiretroviral treatment (ART) is used to treat people with HIV. ART stops the virus from multiplying and reduces a person’s risk of developing AIDS.

While not a cure for HIV, ART treatments are so effective that, if taken properly, they can make the virus undetectable in a person’s system. This means that HIV won’t make the person sick, and that they have virtually no risk of transmitting HIV to other people, even sexual partners.

These treatments have revolutionised the way HIV is treated and drastically changed the prognosis for people diagnosed with HIV. For Nathan, it’s the difference between needing to self-inject medication, to taking just a few pills each day.

“I spent about eight months on the injectable medication when I was only about 16. I was injecting the drugs twice a day in the stomach and having to do that all myself. Comparing that to what I’m doing now, it’s so much easier. Now I'm even talking to my doctor about dropping tablets and going onto one or two tablet regimens.”

Dr Neilsen has been working with patients with HIV for decades. He remembers how dire the disease was for his patients in the 1980s.

“There really has been a transformation in HIV treatment over the last 20 years or more,” he says. “I was working in HIV in the 1980s when things were very grim. We had terrible treatments, and people didn't do very well on them. These days we can successfully treat people and maintain their health indefinitely, sometimes through the use of a single tablet just once a day.”

With modern treatments, it is expected that people with HIV will live normal, healthy lives, and never go on to develop AIDS.

What it’s like to live with HIV

Having lived with HIV his whole life, Nathan has seen a lot of changes in how HIV is treated medically and seen by the broader community. Growing up in the 1990s, Nathan says that other kids were pretty accepting when it came to him having HIV.

“I did a full sort of disclosure in preschool,” he says. “So that way I came out about being HIV positive straight away. We got a lot of support which was fantastic. I experienced a little bit of stigma, but not necessarily from kids. Most kids didn't care, but there were a couple of families who acted differently. Like the parents were a bit more cautious or hesitant about things and that was reflected in some of their actions. It was the 90s, and most people were thinking back to the Grim Reaper campaigns.”

As he got older, Nathan had to consider his HIV in different ways. Learning about relationships and sex are a normal part of adolescence and young adulthood, but for Nathan, he also had to learn to talk about having HIV in a new way.

“At the time, the rule was that I had to disclose that I had HIV to anyone and everyone I wanted to engage in sex, be it protected or unprotected. Just trying to navigate sex as a teenager to begin with is difficult and scary and nerve racking. That was a tricky sort of situation to navigate and it definitely made things a lot more stressful.”

But for Nathan, most people close to him didn’t seem to care about his HIV.

“I had a few girlfriends as a teenager and sexual relationships and things and a lot of them weren't particularly bothered. I think part of that's a generational thing. Nine out of 10 people I told tend to forget. When we're younger, we're all wrapped up in our own sort of stuff.”

It wasn’t until he was older and getting into more serious relationships that Nathan encountered hurtful stigma.

“About two years ago I experienced my first proper sort of stigma from someone,” says Nathan. “It was really shocking. I told her my status and what I live with and to have that person turn around and go, ‘Don't come near me. You're disgusting. That's horrible. Why didn't you tell me sooner?’ that sort of thing… We hadn't even had sex, hadn't even done anything at all. To have that reaction made me think maybe I need to be a bit more careful about who I told. Because up until that point I kind of told everyone and anyone really who I was friends with. Most people in my life knew. And again, that was a big, big shock and it was like hitting a brick wall.”

A photo of a doctor speaking to a patient

Ongoing stigma and discrimination

Dr Neilsen says that Queenslanders who are HIV positive, like Nathan, can face ongoing stigma and discrimination, even if they’re taking medication that means they are not at risk of transmitting HIV to others.

“Unfortunately, the stigma and discrimination still persist,” he says. “In recent years, I've still seen patients newly diagnosed with HIV experience awful discrimination. We still see rejection by family, rejection by their lovers and so on, at a time when that is really unjustified. It's appalling. In that respect, HIV still has the potential to destroy relationships and cause major damage to people's self-esteem.”

Dr Neilsen finds this frustrating, particularly because modern treatments mean that people with HIV who are taking ART and have undetectable HIV viral loads in their blood results, are extremely unlikely to transmit the virus to others.

“These days people are unlikely to get HIV from someone on HIV treatment,” he says. “The modes of transmission are well known, and people do not get HIV through normal social contact. If someone has a friend, family member or partner who is infected with HIV, they should be supportive and encourage them to seek treatment.  People should be respecting and looking after each other as though they were not infected with HIV.”

“We do our very best to reassure people that those terrible days of HIV infection as a death sentence are long behind us now. We try to reassure people who are newly diagnosed that the world is very different now in that we have highly effective and very safe treatments available. But unfortunately, the power of stigma is such that a HIV diagnosis is still strongly believed to be very bad news, and the vast majority of people who are newly diagnosed go through quite a significant grief reaction, with all of the phases that we identify with a grief reaction.”

Nathan says that he feels lucky to not have experienced a lot of discrimination from other people about his condition. Through his work with Queensland Positive People, he’s heard firsthand the impact discrimination can have on people’s lives.

“I've definitely heard about it a lot in my work,” he says. “I have seen a lot of it, not necessarily directly, but through people I've worked with, clients. One of the biggest things that people always talk about is stigma. Stigma can be internal stuff, but also external stuff, like knowing there’s fear around HIV and that it can be really scary for a lot of people.”

He thinks a lot of this discrimination comes from a lack of understanding in the community about what HIV actually is.

“I was at an event recently and I was talking to this guy over lunch and he was like, ‘Wait a minute. You said you had HIV?’ And I was like, ‘Yeah.’ He's says, ‘Wait, what?’ It's that perception; a lot of people still look back to the 80s, the 90s and what they thought HIV was, and that's just not the case.”

Nathan is now in a serious relationship with a woman who has taken the time to understand HIV and helps him to manage his daily medications.

“My partner is a nurse, so she’s really helpful with managing my medications. She's pretty well informed and she's up to date with everything around medication and prevention,” he says. “We still take precautions in the bedroom, but honestly, she's more afraid about having children than getting HIV!”

Nathan wants other Queenslanders to know that people who are HIV positive really are just regular people.

“I am like everyone else,” he says. “I just happen to have a nice little chronic illness.”

Protection and prevention

For those living with HIV, taking ART and having an undetectable HIV viral load means that the chance of you transmitting the virus to others is negligible.

For those who don’t have HIV, you can protect yourself against HIV by always using condoms and water-based lubricant when having sex (vaginal or anal). Approximately 5-10% of Australians living with HIV don’t yet know they have HIV, and you can’t tell by looking at someone if they have it. Condoms also help protect you against other sexually transmissible infections such as chlamydia, syphilis and gonorrhoea.

People who inject drugs should also avoid sharing injecting drug equipment and can access sterile equipment from a needle and syringe program (NSP) – you can find your closest NSP via the needle and syringe program locator guide.

There are medications which can prevent HIV infection, recommended for those who are at higher risk of contracting HIV.

Post-exposure Prophylaxis (PEP)

Post-exposure Prophylaxis or PEP is a medication that can be taken after a person might have been exposed to HIV. It may be effective in stopping the transmission of HIV for up to 72 hours (3 days) after exposure but is best taken as soon as possible after exposure.

PEP is available for free from most public hospitals and from sexual health clinics – you can find a list of services that can administer PEP using the Queensland sexual health and HIV services locator tool. If you think you have been exposed to HIV, it’s really important that you seek medical help as soon as possible.

Pre-exposure Prophylaxis (PrEP)

Pre-exposure Prophylaxis or PrEP is a taken once a day by a person who doesn’t have HIV and can prevent the virus from establishing in their body if they come in contact with the virus.

PrEP is available for Medicare eligible people at a medium to high risk of HIV infection through the Pharmaceutical Benefits Scheme (PBS). You can talk to your GP or sexual health clinic for more information about PrEP.

More information

You can find more information about HIV, support for people who are HIV positive and their partners and family, prevention and protection at these links:

Queensland Government

Queensland Positive People

Queensland AIDS Council

Get PEP

World AIDS Day

Last updated: 3 December 2019