What It Was Like to Live with HIV During the ‘80s and ‘90s

“People would not see your humanity.”

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Today, people with HIV are able to live relatively normal lives, as long as they get diagnosed and stick to their treatment plan. Antiretrovirals (which prevent HIV from replicating in the blood) have truly been revolutionary. When people are able to keep their HIV levels suppressed, they can live long and generally healthy lives with a low risk of transmitting the virus to others. This is a very different experience compared to those who learned their HIV diagnosis in the 1980s and 1990s.

When HIV/AIDS was first appearing, scientists and doctors didn’t know what it was. That meant they didn’t know what caused it or how to treat it. This kind of mystery tends to lead to fear, myths, and ultimately stigma. For those who were on the receiving end of this stigma, the experience was far from easy.

Living with HIV in the 1980s and ‘90s

Isolated and Ostracized

“I was ashamed and embarrassed to tell people I’m HIV positive. Because of the stigma, your best friends would turn on you. I’ve seen my friends where their family put them out. They would have nothing to do with them. And even the medical field was ignorant. My friends who died—they would take the bed they died in and put it in the backyard and burn it. Everything the HIV person touched, they would burn or throw in the garbage.”

—Jarvis Hall, diagnosed with HIV in 1984-85

Feeling Dispensable

“Ronald Reagan did not mention the word ‘AIDS’ until four or five years into his administration because of the people who were HIV positive. They were people who were either queer or people who were intravenous drug users, so these were people that were ‘dispensable.’ These were the ‘other’ people. They didn’t really care about that. I even internalized it: ‘Oh, I’m dirty. Nobody will want me,’ and this sort of thing.”

—Reginald Brown, diagnosed with HIV in 1986

Ashamed

“That was the [hardest] thing for me, more than the illness: It was just the shame. And because you were human and did a human thing, that you were less than human now, and people would not see your humanity.

“I was a teenager being impacted by all that. [I] didn’t believe that I was ever gonna love someone or have anyone love me, so I just prepared for a life alone.”

—Darnell White, diagnosed with HIV in 1994

Today, society has better information about HIV, what causes it, and how it’s treated. That means there’s less stigma about HIV today than there was in the 1980s during the AIDS epidemic. Still, some myths persist. Learn more here about what to say to people who believe HIV stereotypes, and check out these myths debunked by people with HIV.