They’re the ones that have a problem: living with HIV in a remote communityadmin
They’re the ones that have a problem: living with HIV in a remote community
HIV Australia | Vol. 10 No. 2 | October 2012
David 1 lives and works in a remote town of the Northern Territory, where he has been based for many years. He has been living with HIV since 1985, and commenced antiretroviral treatment earlier this year with the support of two interstate doctors: one based in Sydney (who he has been seeing for over 20 years) and one in Melbourne. David got in touch with HIV Australia to share his story about his experiences of living with HIV in a remote community.
‘Living in a small community – it is quite difficult, so I keep myself private. If for any reason it became public knowledge that I am HIV-positive I would be forced to leave the community and would not be able to work anywhere in the Centre.
‘Out in the community you can’t talk to anybody about [being HIV-positive]. No one else will talk about it either. So I just keep to myself; you’d be excommunicated if anyone found out. There’s still that fear factor out in these communities. And everyone talks, so it’s just not worth it, trying to access services within remote communities … it’s just not worth the risk to your person.’
David says there is a scarcity of HIV services in remote areas, and there is little to no information about HIV available in local clinics. He says he has to travel long distances for appointments, and even then still experiences issues accessing services: ‘I’ve found it pretty difficult living here, because every time I’ve come into town to the HIV clinic there’s been no doctor – and I’ve driven hundreds of kilometres to come in and see somebody.’
‘Like, I wanted to go and see a local doctor this week and I’ve rung up and was told: “Well, we don’t have one available today. There’s someone here on a Tuesday afternoon and that’s it.” This gets very frustrating. It ended up taking me about two or three months to start medication; in the end I found it easier to go to Melbourne to start my treatment with the incredible support of a clinic there.’
David was 21 years old when he was first diagnosed with HIV. ‘I’d actually never had anal sex before … it was like “oh no!”
‘I had a boyfriend. We went and got tested because that’s what everyone was doing. Actually, I’d had a test in Brisbane once before that, and was negative. Then I moved to Sydney and I was [diagnosed] positive within six months.’ ‘I cried for a week … and then just decided: it’s OK. You know what? It’s just like getting a cold, just look after yourself; be aware of it. And that was it. And my Sydney doctor said, “Look, you’re really, really healthy. You’ve got a really positive attitude towards it. Just keep an eye on it.”’
David explains that having a good relationship with your doctor is extremely important. Although he has not been able to disclose his HIV status to anyone in the communities where he lives and works, he says that his longterm treating doctor in Sydney has given him all the support he needs to remain healthy and maintain a positive outlook.
‘I’ve had the same doctor for probably 20 years. And he’s right up to date with HIV medicines. He does a lot of trials. He’s in Sydney … and he’s always been available to me. He told me: “Just look after yourself, keep the right attitude.” So I did. I made sure I didn’t accept the disease as like, “Oh, why me? It’s gonna kill me. Everyone hates me.” I just went: “Nah, I’ve got a cold – it’s fine. Just watch it. Look out for yourself.”’
David has been living with HIV for 27 years and has always been in excellent health. He explains why he only began antiretroviral treatment earlier this year: ‘I went on treatments about six weeks ago. Finally. My T-cell [CD4] count has always been excellent (high 600s) and my viral load was always low, so I was really healthy. But then my viral went up to 110,000 and I was advised by a doctor in Melbourne to go on antiretrovirals.’
David says that he was initially very frightened about starting treatment because of the side-effects he had seen other people experience in the past. ‘I thought, “I’m gonna be sick every day,” because everyone used to get really sick on [treatments]. I think taking that amount of tablets was a constant reminder of “you’re sick, you’re gonna die,” – that’s what was always drummed into you.’
Following conversations with his doctors in Melbourne and Sydney, as well as discussions with staff at Northern Territory AIDS and Hepatitis Council (NTAHC), David was reassured that commencing treatment would be the best thing for him. He is taking a regimen of one pill a day and says is all going fantastically: ‘I just can’t believe it. Within three weeks my viral load had gone down to 460. It’s probably undetectable by now – you know, after six weeks’.
Despite the difficulties David has experienced accessing care in his local area, he says he is able to maintain regular contact with his doctors in Sydney and Melbourne via the internet.
‘I actually have two doctors now who collaborate with each other. And they’re available to me online. So I can ring up and go: “Hey … ”, and they’ve given me websites to go to. If I get prescribed another medication, I can go online and see if it reacts with what I’m already on. I don’t have to divulge all my information in the community that I’m in, so it’s extraordinary. And I don’t have to travel.
‘I haven’t worked out, y’know, what to do if I get really sick. You don’t want to tell the small community that you’re in that you’re HIV [positive] … we haven’t got that far yet. They are bringing in ehealth in the Northern Territory, but I don’t want to go on it because that will divulge my HIV status. I’d go to the clinic and they’d look at it.’
David maintains a very active life, and despite the stigma that forces him to keep his HIV status and sexuality a secret where he lives and works, he maintains an extremely positive outlook:
‘I just don’t see having HIV as a disability, you know? I think I did get depressed at one stage about it, many, many years ago. But it was dealt with. Now I have a full time job, I travel all over. I help people. I’ve always got a big grin on my face! It’s not a problem. Being HIV [positive] is not a disability. It is – but it’s someone else’s disability … not mine. They’re the ones that have a problem.’
1 Identifying details in this article have been changed to protect David’s identity.
Finn O’Keefe is Communications Officer at AFAO and an editor of HIV Australia.