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Being a woman with HIV

When people ask 64-year-old Susan Paxton how she was diagnosed with HIV, her answer is plain and simple: “through unprotected sex. It amazes me that people are still so shocked to meet a woman with HIV. People in heterosexual relationships seem to think that HIV could never affect them — but it does,” says Susan.

Susan contracted HIV from her ex-husband, who she thought she was in a trusting relationship with at the time. Both Susan and her ex-husband had tested negative for HIV previously and it wasn’t until after the birth of her son that Susan became sick. It took doctors a few years to make the diagnosis because HIV wasn’t something they’d immediately test for in a woman.

By the time Susan was diagnosed in 1991, she had separated from her partner and was raising their two-year-old son on her own. Susan describes feeling like her “whole world was falling apart”. She was told that her son would be an orphan by the age of five or eight.

Now nearly 30 years on, Susan has a PhD in public health and HIV-related studies, and is a passionate advocate for the rights of women living with HIV around the world. Susan believes that HIV stigma is the number one issue preventing women with HIV from living a long and healthy life.

“Despite the enormous leaps in progress we’ve made in HIV over the last 30 years, there’s still this assumption that HIV only affects gay males, and this simply isn’t true. This ignorance and misunderstanding makes it difficult for women with HIV to get tested, access treatment and speak openly about their HIV-positive status.”

Susan says her health has come a long way in response to new treatments, and resources like the new MyLife+ app provide useful tools for monitoring her health. “We’ve moved into a completely new era of HIV health. The wave of desperation and panic I once had about my HIV has passed, and my focus is now on monitoring my health and making sure everything is on track. The app is great for helping me keep an eye on my progress.”

For 55-year-old Diane Lloyd (pictured), she finds disclosing her HIV-positive status to new partners one of the most challenging parts of living with the virus. Diane was diagnosed with HIV 30 years ago. At the time, she was an injecting drug user and was working in the sex industry. Diane contracted HIV from her ex-partner, and the diagnosis came as a huge shock.

Diane says the hardest thing she’s had to come to terms with was being told that she couldn’t have children 30 years ago. “For me, being told that I couldn’t have children was harder than the diagnosis itself. The fact that we’ve made such incredible advances in science and medicine means women today aren’t faced with the same ultimatum that I was — and I’m truly happy for other HIV-positive women for that.”

Diane is heavily involved in the HIV-positive community, sitting on the board of NAPWHA and Femfatales — the national network of women living with HIV. She finds the new MyLife+ app particularly useful for providing her with “a more rounded view of your health”.

Both Susan and Diane support MyLife+, a new health and wellbeing app for PLHIV.

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