Antionettea Etienne
New York City
Diagnosed in 1997
The craziest, most outlandish myth that I've heard about HIV is about a Hispanic person going to a santera to take the virus out of their body:
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The smoke of cigars being blown on them and chicken blood being splattered on them and them lighting candles and stuff.
But I understand why a person of Latino descent would do so, because that is also part of my culture. They felt that brujerķa -- which is like witchcraft -- would help them get rid of HIV, but being a knowledgeable person in this field, I know that that would not work.
Unfortunately, because of that person's strong belief, that person died in the Bronx about seven or eight years ago, splashing some oil on candles and stuff: The candles caught on fire, and she got trapped off and was killed.
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Eli Dancy
Black AIDS Institute
Brooklyn, N.Y.
One of the most outlandish myths I heard about HIV: Can I talk about the Magic Johnson thing -- the myth that he's cured?
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I think that would be the most outlandish thing that I've heard: Magic Johnson went to Africa and he's found the cure for AIDS, and they're not telling any of us over here. It was said that they have it over there and they hand it out to rich people!
There are a lot of people nowadays who will argue that Magic Johnson is cured! [Laughs] But he still has HIV, and that's the bottom line. There's no cure right now, and that's the bottom line.
Oh, I've got a great myth that I've heard. I actually did an interview one time before -- it was for a radio show in California. They told me that HIV did not exist, period. People were not dying of HIV/AIDS, and the only way people were getting whatever disease that was killing them that they were saying was HIV was by taking the HIV test.
So the test would infect them?
Yes. They were saying that there is no HIV. It doesn't exist! There's no AIDS -- it's not a disease. People are dying from other complications of something mysterious they couldn't actually name. The show's host had a whole panel of people that were telling me that by me telling people to get tested for HIV, I was actually making people get infected with this mysterious disease that people thought was HIV.
Why do you think people want to believe things like this that are so ridiculous?
Everybody has their individual reasons. It could possibly be to make them feel better about the irresponsible things that they're doing in their lives. It could be to fill a gap for things that they don't understand.
Some people just always want to have an answer for something. The fact that HIV has no cure and there is no answer to where it has come from and how to get rid of it, people just figure it's something that they're going to make up the answer for. You say something, you get a couple of people to believe it, it starts to become a reality to you. You have people backing you up and saying, "You know what? You're right! There's no such thing as HIV! I had it and I'm cured now." They're not really cured, but they say, "I had it and I drank some orange juice and I'm cured now," or something like that.
You can get a group of people to stand up for anything, right down to the cults that get people to kill themselves by drinking Power Punch. I just think they have their own personal reasons, but it's more to fulfill a personal need versus trying to educate people on the real situation.
At the end of the day, people are dying. For somebody to come and say it doesn't exist -- what about all the hundreds of thousands of people, millions of people who have died already, or the families that have been touched and hurt by HIV?
I think that was definitely one of the craziest myths that I've heard. They were really passionate about that.
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Jorge Zepeda
San Francisco AIDS Foundation
San Francisco, Calif.
"If I take a contraceptive pill, I'm not going to get HIV" -- that's one.
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The other one is a guy saying to a woman: "You don't menstruate anymore, so I don't have to use a condom."
We don't have an integrated reproductive health education package [in the U.S.]. We dissect HIV and then we have other STDs and then we have reproductive health. We don't put an integrated message out there.
You want to avoid HIV? You need to use condoms. But there are some other people who don't listen to the messages. They manufacture their own truths.
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Christopher Roby
My Brother's Keeper, Inc.
Ridgeland, Miss.
The most crazy, outlandish myth I ever heard about HIV has to be that you can get HIV from sitting on a toilet seat.
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In the field that we work in, with African-American MSMs [men who have sex with men], one of our projects deals with myths and misconceptions around HIV facts, so that's probably the worst one I've ever heard.
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Jack Mackenroth
New York City
Diagnosed in 1990
The craziest, most outlandish myths I've ever heard about HIV are probably the misconceptions about how it's contracted.
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I still think, even with all the education out there, there are people who think you can get HIV by kissing, and think you can get it by drinking out of the same cup as someone with HIV. Even in the gay community -- it's obviously not a gay disease, but you would think that gay men would be really educated on the subject matter, and I'm still, every once in a while, surprised at the things that people say.
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Yolanda Diaz
New York City
Diagnosed in 1989
The craziest myth that I've heard about HIV is that you can have "full-blown AIDS" -- like, if you're "full-blown pregnant"!
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Either you have HIV or you have AIDS.
Also, the myths of: "Oh, I got HIV." "You're gonna die!" I think that now, in the year 2008, people are really living with the virus because of medication, herbs, acupuncture, reiki, meditation, and I could go on. So many things that are out there -- I can see that people are just living with the virus instead of freaking dying with it, you know?
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Gloria Smith
Social Worker
Connecticut
Talking about myths, I think the greatest one I've heard about AIDS, being from Africa, is that AIDS is Western propaganda: It's not real, it's a myth.
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Why do people say that?
I think because of lack of education and lack of awareness and ignorance.
Why would they think people in the West would want to spread this propaganda?
For political gain. For monetary gain. For control.
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Kizmet Cleveland
Americorps VISTA Member
Cleveland, Miss.
What is the most outlandish myth I've heard about HIV? It's that you can get it from spit or mosquitoes ...
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... even toilet seats, or touching someone. I think that's one myth that I've heard a lot: that you can get HIV by just hugging or touching somebody.
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Emilie Byron
New York City
I've heard people believe that if you already have HIV and your partner has HIV, then you don't have to worry about the virus if you both have it. You can have unprotected sex because you already have the virus.
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Bethsheba Johnson
Nurse Practitioner
Chicago, Ill.
Two myths about HIV were really mind-blowing to me.
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One was that the government is putting HIV into condoms to infect black people. Trying to kill everybody -- genocide.
The second one was if you have HIV and you have sex with a virgin, then that would get rid of your HIV -- that would cure it.
I've heard it quite a bit through the years, both in the United States and outside the United States.
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Ingrid Floyd
Iris House
New York City
One that we hear often from a lot of the teens that we work with that is always kind of baffling to us is that you can't get HIV through oral or anal sex.
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It's because in their mind they relate it to getting pregnant. Because you can't get pregnant from oral sex or anal sex, you can't get HIV or you can't get STDs [sexually transmitted diseases] from those methods.
It's kind of shattering the myths that exist in their minds about what sex is and what types of sexual acts you can get HIV or STDs from.
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Kenyon Farrow
Queers for Economic Justice
New York City
There are of course the AIDS denialist rumors that continue to float around the Internet.
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I have had several people e-mail me -- or post comments to my blog when I blog about HIV stuff -- that HIV may not cause AIDS and all of these sorts of things that float around the world. I think that's one of the biggest myths.
The second big myth is that men on the down-low are this missing link between why there are high rates of HIV among black gay men and high rates of HIV among black women. That is a huge myth that continues to float on radio shows in the black community and even in the popular press. There are studies and data that show that that's not true.
The third myth related to that is that men in prison -- men who are locked up in prison -- contract HIV in prison and then bring it home to their wives and girlfriends as another major purveyor of HIV infections among black women. That also is not true. Ninety percent of people who have HIV in prison were positive when they came to prison. It's actually over 90 percent -- it's about 94 percent.
Those myths float around and, particular to the prison question, actually prevent us from being able to focus on the impact of mass imprisonment in and of itself as a driver of HIV infection.
I think those are three of the biggest myths out there that we need to work very hard to dispel.
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