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Susan's story

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 back then.

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,” she says. “”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. “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.”

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