John, age 68 / Coogee, Australia

GOAP_John

My partner started to show symptoms of AIDS in 1983, and I talked to my doctor, who said, “Look, this is all happening in the United States. It can’t possibly be.” But in fact it was. So over the next two or three years I worried, but without confirmation. He got very sick at the end of 1985, and he died in February of 1986. It was in January 1986 that my diagnosis was finally confirmed, but there’d obviously been two or three years of worry before that.

One of the things that I want to do is to invest my time in trying to make sure that those people who haven’t got access to treatment – in Asia and the Pacific particularly, ‘cause that’s the area in which I live, but generally in the world – DO have access to treatment, because it made all the difference between me being here today and him not.

I think the quality of medical care that I receive is probably as good as you could get anywhere. But the fact of the matter is that as you get older and with the co-morbidities in HIV, what happens is that you need to be referred to other specialists, and what I find is that those other specialist don’t know much about HIV. Quite often the advice or the conclusions to which they come are not necessarily correct. And even, at times, you actually have to educate the specialist about the HIV component. Generally speaking I rely on the net. I also have some extremely close friends who are positive and have tremendous knowledge in the biochemical field, and I talk to them.

People tell me that I will have all of these co-morbidities, there’s a higher incidence of this-that-and-the-other, and you sit here thinking, “Well, like, when’s it gonna happen?” So, that’s a bit depressing.

I mean, I have issues with some side effects – who doesn’t? But sometimes it’s really difficult to differentiate between what is as a result of having HIV infection and what’s a result of being nearly 70?  Difficult to tell, sometimes. There’s been some confusion around what is lipodystrophy, what is HIV inflammation, what is HIV medication, what is old age versus what other options or diagnosis there may be.

If I had nothing to do I think my life would be more difficult. I do voluntary work for three different organizations. That, in a sense, makes my life easier. So it’s a sense of engagement, a sense of involvement.

I find it extremely difficult to balance. So, I got involved with all of this work, and for the last three years I’ve been saying, “In a month, it’ll get better.” And frankly, the AIDS conference hasn’t helped. So, I’d like to get back to writing, I’d like to just get back to walking, to be able to have some exercise, to be able to have a day off where I’m not a slave to e-mails, and I have failed to bring that discipline into my life. It’s a gap. Next month it’ll be easier.