Sometimes I feel like a bit of an ‘HIV tragic’. I have been involved in HIV organisations and committees related to HIV for more than ten years, over half of my friends are HIV-positive and I spend a good part of every week thinking about the subject in some way or other. I’ve even written for every issue of Positive Living since it became national in 1995.

So I thought it would be interesting to talk to a range of other positive people who I think are a little less attached to the sector than me and who have survived for a long time with HIV, to find out how they have assimilated HIV into their everyday lives, how they cope with issues like treatments and side effects and if they still feel the uncertainty — even fear — that used to be an issue for lots of positive people pre-HAART. Have things changed that much?

Twenty-one years but no celebration

James¹ has had a successful career in finance and, heading towards his mid-fifties, is looking forward to early retirement. He has been with his partner for twenty years and while the relationship is platonic these days, it provides James with a crucial support around the big issues in his life, which, at least twenty-one years after being diagnosed with HIV, are still largely to do with the virus.

On the surface and on most markers in life James has achieved a lot and is relatively content — his health is excellent, and he swims and attends aerobics classes several times a week — but it seems HIV continues to prove a challenge in his everyday life, a negative he could really do without.

“I think about it every day,” he said. “It’s hard not to when you’re shoving pills down your throat three times a day.”

James’s T-cells started to drop in 1996 from a regular 600 mark to 187 and his doctor, who he has been seeing since the mid-eighties, suggested it was time to start treatments. “The treatments have been the only difficulty I’ve had when it comes to the physical problems of living with HIV: the virus has not done anything to make me ill,” he said.

James had enormous respect for his doctor but it was a difficult decision to start treatments because he had survived for so long without them, despite losing numerous friends, and a former lover, along the way.

His health just continued to keep on regardless. “I’m still surprised that no researcher has ever asked to look at people like me who have survived for so long with no AIDS illnesses at all. Because I’d made it so far, I found it hard to admit I needed some assistance. I met another positive guy who had survived a long time too and he was doing it with Chinese herbs and acupuncture and I felt a bit of an idiot. Had I jumped onto the Western medicines bandwagon as soon as there was a sign of trouble?”

Adjusting to an AZT/3TC/indinavir regimen did take some patience as he soon found he experienced flatulence (instantly, as soon as he took an indinavir capsule), diarrhoea, bad breath and a loss of libido. But he persevered for eight years as his markers went back to normal and he had an undetectable virus again. Last year though he was hospitalised with kidney stones (a known side effect of indinavir) and moved over to nevirapine to replace the offending protease.

“It was a painful experience but now I’m back where I was clinically, I’m feeling invincible again.”

Except when it comes to sex. James’s big issue, one he has carried around with him for the whole time he has had the virus, has been transmission and the fear that sexual partners will reject him because of his status.

“I had the worst thing happen at a sauna about five years ago. A guy was starting to give me oral sex and I stopped him saying, ‘Look you need to know before you do that that I’m HIV-positive.’ His reaction was extreme, saying, ‘How could you do this to me? I’m going to report you to the sauna management. People like you shouldn’t be allowed in here.’

“It was so uncomfortable my mind just snapped. I decided I couldn’t keep putting up with that tension every time I was about to have sex. I just decided to be celibate and I’ve remained that way for the past five years. It’s been liberating in a kind of way. I also feel uncomfortable about kissing some casual friends and I also tend not to mention that I’m positive to all but my closest friends, these days.

“I’m coping all right with everything but I’m not so relaxed about the future, really. I’m not certain about my prognosis and think I will be more likely to come down with some nasty kidney or pancreatic cancer related to my treatments, than directly to HIV,” he said.

“But then again of course, I might die from old age.”

The Need for Balance

Joe¹ is very different although he has a similar history with the virus to James. He was diagnosed with HIV in 1987 but has probably had it since the early eighties when he was with an American lover who turned out to be positive as well when the test became available in 1984.

He had excellent health until 2003 when his T-cells started to show a pattern of decline and he started treatments. He said he has absolutely no regrets about the decision to start treating, but it was taken after talking to lots of friends with HIV about the likely side effects he might experience.

“I decided that taking treatments was a positive step towards improving my health. Instead of regarding the drugs as poison, I expected them to work for me,” Joe said. But his patience was tried by his first combination, based on efavirenz which gave him a “fuzzy head” and caused insomnia.

“Even after about eight months I was groggy in the mornings although I’ve now learnt to live with it and my clinical results have been good.”

Like James, Joe thinks having a long-term partner (for 14 years) has been an essential part of why he has done so well. His partner is HIV-negative, something he thinks is a blessing.

“I know some pos guys think it might be stressful having a neg partner but for me it is less stress not having to worry about my partner’s health as well. We have practiced safe sex from day one — it is just the way it is for us sexually and neither of us really wants that to change. We don’t have any fear of transmission. Occasionally I have had unprotected sex with other positive guys which I don’t think is risky as I have regular check-ups for STIs and know that, if superinfection is a reality, I have no resistant virus that I can pass on to them”

On the issue of the place of HIV in his life, Joe thinks it is important to find a balance with the activities you do and the people you mix with regularly.

“I used to work in the HIV sector and was surrounded by HIV issues and lots of other positive people every day. Having a negative partner helped but I also deliberately formed relationships with straight and gay people who had absolutely nothing to do with that part of my life. I’m happy to attend events at PLWHA Victoria or the AIDS Council but I have been careful to not be seen as ‘Joe the positive person’, any more than I want to be known as ‘Joe the Italian guy’ or ‘Joe the bear’.

“I see myself as having multiple identities. To be emotionally healthy I think you have to have balance in your life and that includes not letting some of the negatives associated with HIV overwhelm you.”

Twelve Combinations and Still Searching

Daniel¹ has had a much rougher time with the virus than the other two guys and his story is a salutary reminder that the treatments do not work for everyone when resistance rears its ugly head.

Diagnosed with HIV in 1993, Daniel’s treatment history is somewhat bizarre by today’s standards. When AZT stopped working for him after about a year — an obvious sign of AZT-resistant virus which wasn’t recognised or understood then by many clinicians — Daniel was given an increased dose of the drug, with his doctor arguing that he needed to live with the increased toxicity to get a clinical benefit.

That toxicity led to his first bout of hospitalisation to deal with side effects, followed by problems with liver toxicity after he tried to substitute ddI as his main antiviral.

When HAART came along in 1995, Daniel was offered saquinavir with 3TC, d4T and — amazingly — AZT as well.

In 1997 he tried nevirapine and, sure enough, got the rash and instantly had to go off it. After six months on AZT, d4T, indinavir and ritonavir he was experiencing liver toxicity and neurological side effects — what he describes as “brain burn” where his cognitive ability was so affected by the high dosages of drugs he was on he was having trouble with simple tasks, like crossing the road.

During all this, Daniel says he was lucky to be working in the HIV sector in a job where it was permissible to have a nap late in the afternoon when his morning dose was starting to peak. It was only when therapeutic drug monitoring came in that his doctor realised he was on excessive doses of some drugs and started to lower the amounts.

Resistance testing was also done on his blood to reveal that he was resistant to pretty much all the antivirals available — a consequence of some bad treatment decisions (as we now realise) made early in the piece.

In 2000, Daniel made a big decision. He was faced with the option of going on seven drugs given his resistance patterns. While his T-cells were around the 600 mark, he knew that there was a chance if he took a treatment break that his virus might revert to ‘wild type’ and improve his chances on future regimens.

His doctor was supportive of a break as long as Daniel monitored his results. That was four years ago and he has remained on the break ever since, with surprisingly good clinical markers until recently. He is now in line to join the CCR5 inhibitor trial due to start shortly. He is looking forward to resuming treatment, because going on such a long break has its scary moments: he was never quite certain he was doing the right thing and if he was likely to get sick suddenly.

Daniel made a lifestyle change at the same time as he started his treatment break, moving to a quiet outer suburb of Melbourne and living on a small farm with his partner. It worked well, he found himself a good job but he needed the company of positive peers from time to time. He sought out positive contacts at PLWHA Victoria and in the gay community to share anecdotes about what was the latest on treatments and HIV and to keep things in perspective.

“I’ve needed some support from pos people who understand what I’m going through. Some friends can’t understand that I don’t have the energy to go out some nights — even some positive people who are going well on treatments don’t quite know what my experience is like. HIV is different for everybody and you really can’t generalise about what it’s like for all people with the virus.”

After talking to these three people, I have to agree with Daniel’s point. Living with HIV is a complex and varied experience with no one path that even the majority would seem to follow. It’s true that some of us are still doing it tough but even then, I think most would agree that it’s worth trying to not let it dominate your life too much or to interrupt your achievement of some of the life goals you set yourself. With all the optimistic news on the treatment front just now, we should be enjoying life as if there will be a tomorrow!

¹ Names and other identifying details in this story have been changed.