HIV Australia | Vol. 8 No. 3 | October 2010

James May speaks with three people who have lived with HIV for over twenty years about their experiences of living long-term with the virus and their perspectives on the changing social context of the epidemic in Australia.

Ian first tested for HIV in 1984, while living in Sydney, and was diagnosed HIV-positive. He says, aside from some initial fear amongst family and friends, he has never experienced any stigma from being open about his positive status. He says that even his relatives soon adjusted to the news, after a little education.

Since 1992, Ian has lived in northern NSW and believes this is somewhat responsible for his overwhelmingly favourable experiences. ‘It’s a colourful area which celebrates diversity, so it’s easy to be open about my sexuality and HIV status.’ Ian finds people are more aware about HIV these days, seeing it as a chronic, manageable condition.

Ian has never been confronted with the ‘it’s your fault’ scenario and yet he’s always been cautious about disclosure so as to avoid contending with people who might not be so open-minded. Interestingly, he says he gets a stronger reaction from people when disclosing his sexuality than his HIV status. ‘Homosexuality still seems to provoke more fuss than the virus’, he says.

He has always been nervous about disclosing his status to sexual partners, and says he probably always will be. ‘I assume the worst, but 99% of the time I get a favourable response.’ Ian says he always discloses his status during sexual encounters where anal sex is involved, or if he wishes to pursue a connection with someone.

As a highly social person, Ian has gone out of his way to participate in gay support networks and community groups. He has experience of HIV peer support in the Lismore region, where he found people to be isolated due to a lack of social skills and/or previous drug and alcohol issues. He says that staying connected to the community is extremely important in terms of thriving and surviving. ‘Personally, I find it very useful to engage with other people’s stories and avoid being consumed with my own.’

Although Ian is a great believer in Western medicine, in his 26 years spent with HIV he has explored many alternative therapies, including naturopathy, Chinese herbs, vitamins, yoga and massage. He says he did not commence standard HIV therapy for nine years because he never felt sick. ‘I never thought the virus would kill me, although I’d always freak out when I came down with the flu.’

Having a positive attitude and staying active is the most important thing.

Although his health is great, he does have some concerns about the possible correlation between dementia, ageing and the long-term use of antiviral drugs. He is also concerned about cholesterol and cardiac health, although he regularly monitors this with his GP. ‘Having a positive attitude and staying active is the most important thing.’

Ian has just completed a two week kayaking trip through the Great Barrier Reef.

Marianne has been HIV-positive for 21 years and she feels not much has changed in terms of stigma associated with HIV in the heterosexual community. She says, ‘Most guys are shocked when I tell them. They don’t want to use condoms. Also, the thought of having a relationship with someone, who in their mind could die young is too painful [for them] to consider. They say they want to be friends but I never see them again.’

According to Marianne, straight men don’t know how to deal with the emotions that surface during disclosure and won’t make an effort to learn about the realities of the virus.

She has also lost several clients in her work as a beauty therapist after revealing her status. ‘People can’t help but see you as “different” – they’re afraid I might infect them. It makes them feel vulnerable – as though it could’ve been them who was diagnosed with the virus.’

Marianne was recently discriminated against by a senior health specialist at a Melbourne hospital. The doctor agreed to carry out a routine, non-invasive procedure, but then pulled out when she discovered Marianne’s status. ‘She insinuated that I was a drug user and shouldn’t be sexually active.’

According to Marianne, the ‘this can’t happen to me’ mentality is still out there. She knows of people in their forties who have recently seroconverted. ‘Not having used condoms in their youth, many people of this generation are quite ignorant about the safe sex message.’

Marianne believes that people should be educated from an early age, and says that girls need to know that it’s okay to be assertive and carry condoms. ‘People need to know there’s a lot more to sex than penetration; there needs to be more humour in sex education as well.’

Marianne says it’s difficult for positive women to find intimacy with heterosexual men. ‘Some people tell me to become a lesbian, or they try to set me up with someone else who is positive. I don’t want to think that I can only be with a guy who has the virus.’ She says that many positive women don’t bother dating because they can’t deal with the possible consequences of disclosure, like rejection and feeling unworthy of love. ‘I never give up hope of things changing. It helps me weed out the ignorant ones; it’s made me more selective.’

Marianne surrounded herself with gay friends after the diagnosis, but felt isolated in the heterosexual community, despite meeting acquaintances through her fit, active lifestyle. She has always been very open about her diagnosis, leading her to get involved with various public education campaigns. Her first major media exposure was through being part of the Positive Women’s triathlon team at the World Masters Games, in 2002.

HIV has been tough, but it’s made me realise what’s really important – friends, family, health, happiness...

Marianne’s health has remained consistently strong. Complimentary medicines, diet and exercise have all played a pivotal role in this. She survived with a minimal T-cell count and no medication for a long time. It was only in 2005, after a bout of pneumonia, that she needed to commence antiviral therapy. Although the medication is working well, she says she is looking forward to a treatment break.

‘HIV has been tough, but it’s made me realise what’s really important – friends, family, health, happiness – being involved in the world. It’s made me focus on the positive, not the negative. It’s made me aware of the mind-body-spirit connection; the importance of having discipline and never giving up.’

Marianne has just competed in the national power lifting championships and came fourth in a field of women which included world title holders.

Dale has been HIV-positive for 22 years. He says that many guys under 40 are blasé about the virus. ‘The “it won’t happen to me” syndrome is very prevalent and they’re happy to put themselves at risk.’ He says he has usually received great support from health services. The one exception was when a nurse at a major clinic in Melbourne was very condescending about his decision to take a HIV treatment break while undergoing chemotherapy for cancer. ‘I didn’t feel like my body could cope with both treatments at once, and she was very rude when I made the decision to stop antivirals. She didn’t give me credit for knowing what my own body needed.’

Dale says that positive people suffer far less discrimination these days. ‘Many people used to think they could catch it from casual contact [like kissing].’ He doesn’t venture into the gay scene anymore, because he says ‘the gay scene revolves around party drugs like ice and there’s no sense of community.’

His parents were fine about his HIV status, but his brothers were very uncomfortable, and he hasn’t seen them much since the diagnosis. ‘They came to the hospital when I was sick with cancer, but we had no contact after that. I think the family carries a bit of guilt about the whole thing.’

I appreciate each day because you never know what might happen.

Dale was in a serodiscordant relationship for three years, and the virus was never an issue. He is currently enjoying an open relationship with another positive guy. He has always had a healthy sex drive. Even after his initial diagnosis in his twenties, he remained highly sexually active. During that time he usually went to saunas for casual sex because disclosure there was less of an issue. He says that disclosure still doesn’t cause many problems, ‘as soon as I tell people I’ve been going for 22 years they relax’.

Dale has felt isolated living with the virus at times, although he’s always had close friends, as well as an aunt, to confide in. He also maintains contact with peers and support staff at the Positive Living Centre in Melbourne. ‘Tending to my plants and painting with acrylics is a great release as well.’ Dale has also been involved with the Positive Speakers’ Bureau for several years. ‘There’s a need to educate the heterosexual community, as well as young guys who are just coming out’, he says.

He’s had a few rough times with HIV, enduring side effects like diarrhoea and rashes whilst taking AZT during the early nineties. He was diagnosed with anal cancer five years ago and had to undergo three months of chemotherapy and radiotherapy. The cancer is now in remission and the combination of antivirals he is currently on has been working well for three years. ‘It’s given me a bit of a belly, but I feel fine other than that. My other combinations failed because I missed doses – I won’t do that again; it’s not worth the grief.’ He says that laughter is the best medicine. ‘I appreciate each day because you never know what might happen. Who knows? I could wind up immune to these drugs.’

According to the three people interviewed here, the reality of living with HIV in the gay community has become far easier, whereas the situation is still quite difficult for their heterosexual counterparts. The woman I spoke with faces on-going ignorance within the heterosexual community, whereas the gay men generally had more favourable experiences in a social and sexual context. Many young gay men are actually quite blasé about the risk of HIV infection, according to the men I spoke to.

Interestingly, discrimination from health service practitioners was mentioned by two out of the three respondents. These situations left them feeling judged and disempowered.

All three participants stated that social and support networks are extremely important in terms of thriving and surviving and each person has actively sought to avoid being isolated by their diagnosis. Location, lifestyle and social skills play an important role in maintaining these connections and fostering health and well-being.

No-one I interviewed felt as though living with HIV had accelerated their ageing process, although many mentioned concerns about possible side-effects from long-term antiviral use, such as dementia and cardiac health issues. Each person experienced illness, to varying degrees, and has gone on to live active, healthy lives. Antiviral therapy, complimentary medicines, diet, exercise, and a positive outlook have clearly enabled this.

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