Sunday, April 14, 2024

‘Mindsets Are Way Harder To Change Than Science’ A Kiwi Mum Who Was Born With HIV Talks About Trying To Change The Stigma Around It

A new book, The Baby That Changed The World, has just been released to show just what is possible for those living with HIV, as well as highlighting the ground-breaking work being done by Sperm Positive, the first HIV positive sperm bank opened in New Zealand. Capsule talks to Rachel*, who was born with HIV, but thanks to regular medication since she was a child, has been able to live a healthy and regular life with HIV, including having a child.

From a scientific perspective, the reality of living with HIV is a world apart from where it was a few decades ago, in that if those affected have access to medication, they can live completely healthy and regular lives. But from a stigma perspective, a lot of people are still stuck back in the 1980s in terms of what they think of HIV.

“Mindsets are way harder to change than science,” says Rachel*, on the phone from her South Island home. “And that’s really destructive for a lot of people living with HIV. They don’t want to talk about it, they live in fear, they don’t want to start a relationship, they don’t want to have babies. And it’s really sad, because all of that should be a thing of the past by now.”

“They don’t want to talk about it, they live in fear, they don’t want to start a relationship, they don’t want to have babies.”

Rachel was born with HIV but medicated from birth, so it was undetectable and non-transmissible, meaning she can’t pass HIV along. Growing up, her daily medication was a simple fact of life and, to begin with, she was fairly open about why she was taking it. “I was so naive, I didn’t know any of the history and I’d always been healthy. I didn’t know the full extent of the disease,” she says.

“But once I hit 16 and people were having sex, I quickly realised that even young people had ideas about it and were making AIDS jokes. It’s not just the older generation; people get scared and they’ll spread rumours. So, it became really hard when I was a teenager but I let my close friends know and that really helped me with my confidence. And then it became very, very real when I fell pregnant.”

When she was 16, Rachel joined up with Positive Women, a support organisation for families affected by HIV, and attended a camp for HIV+ teenagers in the Gold Coast, where she was able to openly discuss her diagnosis and her hopes and fears with people who were also living through the same journey.

Then, when she was 17, Rachel and her best friend Henry* had a drunken night at a party and she became pregnant. The pair have remained good friends and co-parent their now almost nine-year-old daughter, Emma*. Because of Rachel’s HIV status being non-transmissible, Emma is completely free from HIV and so is Henry. But due to the unexpected nature of their hook-up, Rachel hadn’t told Henry about her HIV status at that stage.

“I did feel a lot of guilt for not telling him before that night – and he understands that we weren’t in a position where it would have been comfortable, and, to be honest, we weren’t really thinking about that at the time,” she says. “Plus, I was undetectable, so I knew I wasn’t a real danger, but it’s still definitely a weight that I carry.”

It’s one of the ongoing challenges for people living with HIV, Rachel says – having to pick your moment to disclose your status to someone you love. “Now that I’m older, I feel more comfortable and confident about having open conversations with people I love, but even with, say, people I work with, I don’t want them to think any differently of me over something that doesn’t have any impact on my life. But changing that stigma is a real challenge.”

“Dad chose to stop taking his medication, because he was depressed, he was angry; he felt guilty that he had passed it onto me and Mum. I haven’t fully made peace with his decision, to be honest.”

The consequences of that stigma go above and beyond misinformation, however. Rachel’s father passed away from an AIDS related illness when she was just 13 years old and he had been sick for several years beforehand.

“I feel like if he had been approached differently or supported in a different way, he might still be here,” she says. “He chose to stop taking his medication, because he was depressed, he was angry; he felt guilty that he had passed it onto me and Mum. I haven’t fully made peace with his decision, to be honest. I just think, ‘If only.’”

Her father was born and raised in Kenya and even to this day, Rachel says, his family don’t know the full picture of why he died. “He was so ashamed; he never spoke about it. He couldn’t believe that he had gotten the virus,” she says. “We think it’s bad here, but we are so lucky that we have access to medication. It’s a very different problem in other countries, where people are refusing medication or dying because of the stigma.”

It’s part of the reason that Rachel’s story is included in a new book The Baby Who Changed The World: how to make a baby while living with HIV. It’s a collaboration between Positive Women and Body Positive, and also features stories from Sperm Positive, the first HIV positive sperm bank that was opened in New Zealand two years ago.

The people included in this book were chosen to help reduce the stigma around HIV; 75% of people with HIV in Aotearoa have experienced discrimination, and only 7% of Kiwis know that with effective treatment, HIV can’t be passed onto sexual partners. It’s all aimed at reducing the shame and also the silence around one of the only health conditions that is still battling a high level of misinformation.

With just two pills a day, Rachel lives a healthy life, with a loving partner, a fulfilling job and a healthy, HIV-free daughter. These are all realities that people diagnosed or living with HIV may think are beyond them, and it’s very important to Rachel that the next generation has more hope and more information than she once did.

“It’s empowering for me… and if we don’t talk about this stuff, then it’s not going to get any better. Because it’s so personal and because I’ve grown up with it as well, I do hope to help be a part of something bigger than myself,” she says.

“You can be part of the problem or you can be part of the solution. And I’m in a position where I can talk in a confident enough way to try and help people understand that it’s not so bad, when you’re on medication.”

*Names have been changed

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