HIV: In the shadow of a secretby Joanna Wane
A middle-aged mother of three from Southland speaks out on the reality of life with HIV.
“My manager was wonderful. The first thing she said was, ‘Is there anything I can do for you?’ But she’d already had some phone calls; she already knew.”
It wasn’t the first or last time Gayle, 53, has felt the sting of whispered gossip in her small community. One man she started dating ended the relationship after he was warned off by a friend, even though she’d been open about her condition from their very first coffee together.
“That hurt. Why can’t they be brave and say it to my face: ‘Have you got Aids?’, rather than talking behind my back?” says Gayle, who’s on medication that’s reduced the viral load in her bloodstream to an undetectable level.
“I can’t give it to anybody. Undetectable means un-infectious. I’m not passing it on. I’m not killing people. I’m not a mass murderer. It’s a medical condition that, left untreated, is infectious. That’s why I’m talking to you.”
In Southland, Gayle knows only two other people who are HIV-positive. She says most go “into the closet” after being diagnosed, and women outside the gay community can feel particularly isolated. But for her, living in the shadow of a secret was worse than living with the disease itself. And despite the risk of a backlash from anxious parents, the centre where she works is right behind her decision to confront the secrecy and stigma head-on.
“At first, I was a recluse. I thought my life was completely ruined and trashed. I struggled. I drank quite a lot. I wrote bad poetry. I got into debt. Every time I bled for any reason, I’d cry and try to scrub it off my body, because I felt so bloody dirty,” she says.
“If you have cancer, there is a lot of goodwill and support within the community. That sounds awful; some beautiful people I know have died of cancer, including my mum. But everyone is right there, rallying around you. With HIV, it’s ‘get away from me’. When you go through the dark times, it is very dark, and very lonely.
“Now my thing is to just be me – and be the best me I can be. It’s made me take stock of who I am and what I’m doing with my life. When people know or find out about my HIV, they don’t see a sick person; they see a healthy, vibrant woman. I’m creative and a little bit crazy. Not a freak, just a normal person.”
Gregarious by nature, Gayle had thrown herself into the single, party lifestyle during six years on teaching contracts in the United Arab Emirates. “Your 40s are the new 20s, right?”
But all it took was a single night of unprotected sex, with someone she’d known since first arriving in the country, to contract HIV. She didn’t know she’d been infected until 2011, when she became so ill during seroconversion (when the body becomes HIV positive) that she checked herself into hospital. The diagnosis was devastating; so was having to tell her three grown-up children.
Initial side effects from the anti-retroviral drugs included bad dreams, mood swings and arthritis pain in her joints. She still suffers from bouts of fatigue but reckons about the only thing she can’t do is box, because it’s a contact sport.
Now in a good relationship with a supportive partner, Gayle believes testing for HIV needs to be normalised within the health system so people are diagnosed as early as possible, and then treated immediately to reduce the risk of transmission.
“HIV is spread by people who don’t know they’ve got it. If you’ve had [unprotected] sex or unsafe experiences with needles, don’t be embarrassed. Just get a friggin’ test.”
This was published in the May 2017 issue of North & South.
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