AIDS: The survivor generation still struggling with stigma

Silvia Petretti, survivor and deputy chair of Positively UK.
Silvia Petretti, survivor and deputy chair of Positively UK.
Courtesy: Silvia Petretti,

By 2015, half of the people living with HIV/AIDS in the West will be over 50. Given that the pandemic has claimed over 35 million lives and was recently considered a death sentence, long-term survival on this scale seems miraculous.

“There was a ‘Lazarus effect’ when retrovirals arrived in the 1990s,” says Alice Welbourn, 55, first diagnosed with HIV in 1992. “People were getting up out of wheelchairs and the funerals stopped – it was amazing.”

After diagnosis, it took a support group to stop Welbourn killing herself. Over 20 years later, the British native is fit and healthy with an “undetectable viral load.” She takes daily medication but is in no danger, and dedicates herself to promoting awareness around the condition, and its hidden dangers.

Isolation remains a problem, as people with HIV often struggle with relationships. “Attitudes haven’t changed,” says British-Italian Silvia Petretti, 44, who was diagnosed aged 30 and is perfectly healthy. “If I start a relationship, I have to persuade them a) I’m not going to die, and b) I’m not going to infect them.”

Isolation contributes to around 7 percent of HIV sufferers experiencing mental health problems, according to the HIV and Later Life (HALL) project, the first major study into HIV and aging.

“High levels of anxiety and depression is concerning,” said lead investigator of the study Professor Damien Ridge of the University of Westminster, UK. “Many people said they need to talk about their HIV. But that’s difficult when friends and family don’t know what’s happening due to stigma”.

The study documents widespread rejection from family and friends, who associate the condition with homosexuality and drugs. People with HIV often internalize stigma and shame, says Petretti, who is also deputy chair of charity Positively UK. “Often they feel they deserve to be rejected.”

Petretti believes the current generation “owe their lives” to the first generation of people infected in the 1980s, whose campaigning led to the medical breakthroughs that made survival possible. She is inspired to continue their work.

“Any social movement relies on the people directly affected – as with civil rights or the suffragettes,” she says. “Nothing will happen without us, which is why we need more solidarity.” Petretti works to extend support networks in the harsh climates of countries in Eastern Europe and Africa, where education is suppressed and the epidemic spreads.

Both Petretti and Welbourn describe themselves as a test generation, the guinea pigs for new, unpredictable treatments. They hope that the next generation can beat the prejudice.


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