Happy World AIDS Day! I came across this inspiring article today.
To celebrate World AIDS Day, SameSame has been speaking to a range of people currently living with HIV, as way of celebrating the progress already made and highlight the distance we’ve yet to travel in removing associated stigma.
For 64-year-old Susan Paxton, who was diagnosed with HIV back in 1991, the stigma faced was multiplied as a bisexual woman.
“Sadly I think the stigma around HIV still exists,” she tells me. “In the early days, everyone was terrified, it was seen as a certain death sentence. People were openly discriminated against. It wasn’t so much the overt stigma from public, it was more the stigma within the healthcare sector, the non HIV healthcare professionals.”
Susan recalls the numerous occasions where non-HIV healthcare professionals appeared confused by her diagnosis, asking, ‘how did you contract this?’
“I don’t think that would happen today,” she admits. “But absolutely, it’s a different experience for women, particularly gay and bisexual women, as there’s a frowned-up connotation that you’ve either done drugs or had heterosexual sex.”
“In the public eye, HIV/AIDS remains a gay male problem, people are still to this day often shocked to learn a woman has HIV. It still surprises me, the level of ignorance and lack of understanding.”
Susan separated from her partner when her son was only one year old and describes feeling as though her ‘whole life fell apart’ after being told her son would be an orphan by five or eight. Despite defying the odds and coming out as living with HIV in 1999, Susan admits that she was terrified, particularly of any possible implications it would have on her son.
“But it had no impact on him,” she says. “I had been carrying this burden of secrecy and the burden was suddenly gone – the worry was gone.”
Since going on antiretroviral therapy, Susan says HIV hasn’t affected her life much. But despite notable progress in the field of HIV treatment, she suspects the emotional journey for those being diagnosed remains pretty similar.
“Anyone diagnosed before 1996 were told they were going to die,” she tells me. “I still think people hold onto that fear, despite HIV now being a very manageable condition. You really can lead a normal life now, but I don’t think that message has gotten through.”
For 22-year-old Thomas Kearney, who grew up in a conservative pocket of Tasmania, revealing his positive status in June this year “felt like coming out a second time”.
“I was pretty upset, to say the least,” he tells me. “I couldn’t think clearly, I was worried about how I was going to tell my family and friends. There was a lot of initial panic, which was why I wanted to take the time to learn the facts.”
“When I was diagnosed, they told me it wasn’t a death sentence,” Kearney says. “They reiterated that it was manageable, which helped reduce the panic. I calmed down reasonably quickly after that.”
“It’s been totally fine. I posted a status about it online, as I didn’t want to repeat the conversation with everyone I knew. I got some lovely responses. People were supportive and seemed to understand the realities of it.”
“I haven’t had the chance to date yet, but I can see it affecting the way I approach it,” Thomas admits, laughing at the suggestion that his status could act as a filter for those with poor character.
“There are definitely silver linings,” he says. “I’m more on top of my health than most people. I like to see the bright side to it all. From the get go, health care professionals have provided me with all the information I need, monitoring my health without judgement.”
In a far-cry from Susan’s experience 25 years earlier, Thomas says he hasn’t needed to worry too much about people thinking negative things. “Everyone has been absolutely fantastic, I can’t even imagine what it would’ve been like years ago.”
Kearney admits that he’s benefited greatly from modern resources, such as the MyLife+ app, which is the world’s first comprehensive health and wellness phone app specifically designed for people living with HIV.
“I’ve been using My Life Plus and find it to be a really helpful resource for managing my day-to-day medication and health,” he says. “It provides some good information which I don’t think is so readily available otherwise.”
With the help of MyLife+, the 22-year-old call-centre worker says life has gone on as usual.
“My day to day life has changed in a couple of ways, but not in massive ways,” he tells me. “I’ve been focusing more on my physical fitness, I’m more conscious of what I eat and my general wellbeing, but I don’t notice negativities. My attitude has always been to focus on the good things to come out of it.”
And his advice to those being diagnosed? “Don’t let it define you, and don’t let it hold you back.”
You can download the MyLife+ wellbeing app for PLHIV here.