For Many, the Stigma of HIV Is Harder to Live with than the Disease

WASHINGTON (Nov. 19) -- Before Olivia reveals her deepest secret to those she feels she can trust, she first likes to play a game of “What If.”

“What if I had one leg?” she asks.  “Would you still be my friend?”

“What if I was missing all of my teeth,” she continues cautiously.

“What if I never combed my hair?”

And finally, she pauses for a moment and then asks the one question that is always on her mind.

“What if I had AIDS? Would you still be my friend?”

Olivia, not her real name, and millions of others with HIV/AIDS struggle with that question and the stigma around their disease daily.  They hear people, including friends and sometimes family, utter the hurtful comments and stereotypical remarks associated with those who have the disease.  They are particularly hard for teenagers who are trying so desperately to fit in.

This issue and more will be addressed at the Third Annual International Conference on Stigma on Friday, Nov. 30, in Blackburn Center at Howard University.

The free, all-day conference will feature speakers from university hospitals in the Washington area, representatives from the Centers for Disease Control, as well as international speakers from Uganda and Peru. Topics include stigma in public policy and the community, challenges for faith-based organizations regarding HIV and stigma in immigrant populations. 

The keynote speaker will be Jeanne White Ginder, the mother of Ryan White, the teenage boy who first brought HIV stigma to national attention in 1984 when he was expelled from his middle school for being HIV positive.  White passed away in 1990.  His mother has been a prominent advocate for HIV education and awareness.

Olivia, now 21, has experienced the shame and rejection since she was 8 years old.  She is HIV positive and contracted the disease from her mother at birth. That fact, however, does not shield her from the cautious looks, blatant stares and negative judgments that are associated with her condition. The assumption that she is sexually promiscuous or a drug addict is often the first thought that creeps into someone’s mind when they hear her status, she said.

In addition to her virus, she battles the stigma associated with it every single day.  Olivia said dealing with the stigma is often more difficult than living with the virus.

“It’s like living with two different personalities all the time,” Olivia said. “And once it’s out there, there is no taking it back.”

As a child, Olivia was told to hide her condition, but she did not know why. It was not until she began taking sexual education classes in middle school that she truly became aware of why she had to keep her secret.

“It was very difficult,” Olivia said. “I tried to live with it without associating myself with it.”

Olivia said there is always the chance that close friends will abandon her and boys will reject her if they know she is HIV-positive.   People automatically assume she is a prostitute, she says, no matter how she actually contracted the disease.  They are constantly wary of being around her, sharing her food, even borrowing her earrings.

“People see HIV in red letters,” Olivia said. “But they don’t really know what it is. I have to explain to them that it is not AIDS.”

As a teenager, her HIV status often made relationships difficult with friends and potential boyfriends. Although Olivia first told her best friend about her status in the fourth grade, she says it is still difficult to have that conversation with friends today.  Her trick is to let people get to know her first, so she can determine who she can trust with her secret. The first reaction is usually shock, then silence, then a lot of questions, she said. Sometimes, her revelation is automatically followed by rejection.

“People you really thought were cool will surprise you,” Olivia said.  She recalled an incident at the mall with her friends when one of them jokingly mentioned that out of the four, she would probably be the one to have HIV.

“It was a hard moment.”

Olivia has a friend that refuses to tell their status to anyone. One friend always takes her pills in a bathroom stall, facing the wall, so that no one will see her face through the crack in the stall door.

“People don’t realize how much it consumes your life,” she said.

In addition to the effects of stigma, Olivia also deals with the everyday realities of her condition.

“The medication itself is a burden,” she said. “I have been taking them since I was 8 years old, and I’m still not used to it. It is a reminder every single day that I am sick.”

Still, Olivia does not let her status keep her from fully enjoying life. She is studying criminal justice at a local university.  She works part-time at a D.C. hospital and also at a clothing store at Pentagon City Mall. After she graduates she wants to become a paralegal and eventually a judge.

“At the end of the day people are going to think what they want, so you just have to live your life.” Olivia said. “I don’t want to live in fear. I don’t want to have to hide.”
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