As World AIDS Day is marked globally, three Australians have reflected on living with HIV and the joys and challenges of lifespans they once never dreamed of.
The two men and a woman from Adelaide now are trainers with Positive Life SA, teaching aged care workers the issues they can expect to face looking after older Australians with HIV.
The idea there could be people living long lives after an HIV diagnosis was considered unlikely 40 or so years ago, when contracting the virus almost certainly meant an early death from AIDS.
Adelaide man Steven Dewhirst recalled his doctor’s initial reaction when his HIV was diagnosed.
“The prognosis wasn’t good. When I was first diagnosed I asked the doctor how long I have and he looked at his watch, so it didn’t fill me with a great amount of confidence,” he said.
Another Adelaide man, Geoff Hood, said he too did not expect to live this long.
“I guess that although I didn’t want to think I was going to be dead in a few years’ time, that was my initial thought,” he said.
“That was the general diagnosis back in that period.”
HIV diagnosis coincided with pregnancy
For Adelaide woman Katherine Leane her diagnosis and her pregnancy coincided.
“I don’t think I will ever forget that day … shock, numb, just couldn’t believe it because I found out that I was HIV and pregnant at the same time,” she said.
During the 90s, new treatments changed HIV from an almost-certain death sentence to a chronic manageable illness.
Mr Dewhirst said longevity brought fresh challenges.
“In the early days I spent all of my savings,” he said.
“I spent $120,000 before 1996 on treatments because I had to pay for everything.”
The Pharmaceutical Benefits Scheme now helps him cope, but needing 30 pills per day and living on a pension make it financially tough.
Mr Dewhirst has had 13 bouts of cancer and been told seven times he is going to die.
“I’m living with a colostomy from the last cut-and-paste from where they boned me out and my hips and took my abs through by stomach and rebuilt my bum from that,” he said.
Former school teacher Geoff Hood said his HIV infection was diagnosed much closer to the advent of better treatments and was part of an early trial of the drug AZT.
“I’ve had times where I have felt guilty about the fact that I have kept well,” he said.
“I mean I don’t know why. Whether it is the luck of genetics or what, why I have kept well I don’t know but, yes, guilt is one of the things.
“I had a brother who I lost to bowel cancer several years ago and I went through a terrible period then of feeling why am I still around and he’s been taken from us?”
Ms Leane said she felt it was harder for women than men to reveal their HIV status, because of fears their children would face discrimination.
Neither of her children has the virus, nor her grandchild, and she once had thought she would not live long enough to tell them all about her HIV status.
She said it was something she hid from them for a long time.
“That burden of secrecy just got too much and I decided I was giving the wrong message to my kids, that this is something they either should be ashamed of or they should be embarrassed or they should be resentful or any of those negative emotions,” she said.
“I thought if I want them to know how to deal with the discrimination that goes along with HIV unfortunately then I’d have to show them by example.”
Students hear about lives of those with HIV
A younger generation is getting a more positive message.
Steven Dewhirst was invited to Immanuel College in Adelaide by a pastor to speak with the Year 10 students.
He has been doing that now for more than a decade.
“In the early days no-one knew how HIV was spread so meetings like this wouldn’t have happened,” he told students.
“You kids in a room with me being an HIV person … your parents would have thought if I’d coughed or farted you’d all be HIV.”
The school chaplain, Pastor Paul Fielke, said he considered it a better way to engage with students than previous classes which were taken by a health worker.
“I just felt like the kids weren’t engaging with what was going on and so we thought maybe if we had someone who had HIV-AIDS to talk to them from a personal experience that that may make more of an impact on the kids,” he said.
“When Steven came in the first time we knew straight away that he was a great resource.”
Mr Hood plays his community role by serving lunch each week at the Glandore community centre in Adelaide.
“I am a very strong advocate for people who are HIV being visible in the community,” he said.
“The people who come to the lunch are aware of the fact that I represent Positive Life SA. I think it is much better to do that than be invisible.”
Those living with HIV, who are now developing the wrinkles and curves of their more mature years, think it is better than not surviving into old age.
“There’s something fabulous about it,” Mr Dewhirst said.
“I am happy to get older, I’m 54 now and I don’t feel 54, I feel maybe 20.
“It’s hard going, some days I feel like crap [but] most days but I wouldn’t give it up for anything.”