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What Does HIV/AIDS Stigma Look Like in Your Life?

November 21, 2011

What Does HIV/AIDS Stigma Look Like in Your Life?

Stigma: It can play a role in the ways people view their relationships, their careers, their health, their lives. Because of the ways it creeps into and clouds judgment on other aspects of the epidemic, many who are living with HIV/AIDS and/or working in the field believe that stigma is the most profound challenge we face in the fight against HIV/AIDS. We asked HIV/AIDS community members from all over the U.S. to tell us about the different forms stigma takes in their lives.

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Evany Turk

Evany Turk, Comer Children's Hospital, Chicago, Ill.; Diagnosed in 2001

HIV stigma looks like a lot of fear and a lot of shame among young girls and young women. They are fearful to talk about it. They're ashamed to get tested because of the stigma around HIV. And ultimately, they're ashamed to come to the doctor with any kind of illnesses. They're afraid to come to the doctor to get tested for HIV, because there is still a lot of shame and fear around the three letters of HIV.

Gil Kudrin

Gil Kudrin, Nightsweats & T-cells, Cleveland, Ohio; HIV Positive Since 1979

In my life, HIV stigma doesn't look like anything. When I go out teaching about HIV (and I do a lot of teaching about HIV to school-aged children, high schools, colleges), I always break it down into real simple terms: Dogs get fleas; humans get viruses. It's always been that way. It always will be that way. I have a virus. You might get the flu this year. That's a virus. It's not dirty; it's just a virus.

So I don't accept the stigma. Never have.

Duane Quintana

Duane Quintana, a.l.p.h.a: Allies Linked for the Prevention of HIV and AIDS, Boise, Idaho; Diagnosed in 1999

I combat stigma every day, just by being out and open about the fact that I am HIV positive. I believe that's how we combat stigma -- by facing it dead on.

Phill Wilson

Phill Wilson, Black AIDS Institute, Los Angeles; Diagnosed in 1985

I'm really lucky, in many ways, in that I have a family, and I have the love and support of my family and friends. And they have been supportive from the very, very beginning. I have access to health care, and what have you. From my lens, HIV stigma looks like the calls that we get at the Black AIDS Institute, you know, in the day and the night. It's the calls we get from young people who just found out that they're HIV positive. And they either didn't know how to protect themselves, or they didn't think their lives were worth protecting.

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Elena Thomas Faulkner

Elena Thomas Faulkner, Denver, Colo.

HIV stigma in my life looks like just general ignorance -- from family members, mostly. There's not a direct HIV impact in our family, so what I'm confronted with is family members who are ignorant about sexuality, generally, and really make all kinds of false assumptions around what HIV means, and what it means to be gay, or to be a community that's impacted by HIV. Frankly, we try to avoid those topics. The reality for me is, I have young kids. When they're exposed to those kinds of attitudes from family members, I feel like I have to combat them. And so I guess what it means for me is just stepping up and starting to talk about it, and offering a different perspective.

Henry Ocampo

Henry Ocampo, HIV/AIDS Capacity Building Specialist, Fremont, Calif.; Diagnosed in 1995

HIV stigma for me means learning how to accept HIV, within myself first, before allowing other people to accept me in their lives. First I had to learn how to live with it on a daily basis, and trust that other people would be accepting of me for having it. I think stigma within myself was the biggest hurdle to begin with. After that, once I kind of figured that out for myself, then it was easier to allow other people in.

Ernesto Dominguez

Ernesto Dominguez, Cascade AIDS Project, Portland, Ore.

HIV stigma in my life looks similar to what it looks like all across the country -- that folks are just so afraid to talk about their bodies and sex, in general. How can you talk about things like HIV and STDs if you're not even willing to say the word "penis" or "vagina"? It can be pretty magical and powerful to just be able to say, like, "My penis feels good," or, "My vagina is healthy." We don't say that very often, and I think we need to.

Michael Everett

Michael Everett, Harm Reduction Coalition, New York City

HIV stigma has shown up a couple of ways in my life. Some of the more discreet ways have been amongst either friends or people who I've heard casually speaking on the bus. They said they would never date anybody who has HIV, or maybe they used another word for HIV. I think that it communicates a clear message that there's something to fear there, and that people are worth fearing, as well.

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Alana Bahe

Alana Bahe, Center for Prevention and Wellness, Salish Kootenai College, Pablo, Montana

When I got into this job and learned a lot more about what HIV was, and how you got it, I started talking to my friends. They were a little put off about it, because it's something that scares people. The fact that they're scared is just because they really don't know what it's about. So it was fun taking that opportunity to kind of capitalize on what I learned, and giving the information back to some people that probably needed it, in certain cases.

Paul

Paul, NYC Department of Health and Mental Hygiene, Condoms and Materials Unit; Brooklyn, N.Y. / Barbados

Right now, HIV stigma to me, personally, looks like a disappearing act. Growing up in the Islands, from a religious background, it was always considered a homosexual disease that was put there because God wanted them to be dead. I grew up with that belief. When I came to this country, and I started working in a methadone maintenance program, I still had that kind of belief. I used to be a little standoffish towards people living with HIV.

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Venessa Laurel

Venessa Laurel, Asian and Pacific Islander American Health Forum, San Francisco, Calif.

Obviously I don't experience stigma the way a lot of other people do, because I'm not HIV positive. But I see what kinds of effects it has on people. Even within the Asian and Pacific Islander community, we don't necessarily talk a lot about these issues -- even in my own family. Something as simple as safe sex: It doesn't really happen.

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Arick Buckles

Arick Buckles, Illinois Alliance for Sound AIDS Policy, Chicago, Ill.

HIV stigma is huge. HIV stigma looks like death, looks like dying. It's a huge barrier to individuals receiving treatment and care. Personally, I've had friends who neglect treatment and care. And they actually die as a result of them not wanting to address their HIV status, and receive treatment and care for HIV.

Tina R. Sigler

Tina R. Sigler, Mujeres Unidas, Inc., San Antonio, Texas

When I think of HIV stigma, it's really such a myriad, a bagful of differences, misunderstandings and miscommunications. I saw this many times in my previous job -- I worked as a liaison between technical and non-technical people -- and I think that's one of the many challenges we have. I hope we can make some better inroads, being a liaison between those who understand and don't understand what HIV is and what we can do about it.

Susan Harrison-Hicks

Susan Harrison-Hicks, Registered Nurse, Quad Cities, Ill.

I live with someone with HIV. What stigma looks like to me in my life is absolute fear. It feels like hiding something from the rest of the world, not being able to share a piece of your life and who you are with even people as close as family at times. It causes a lot of personal difficulties in a lot of different ways.

Felipe Hernandez

Felipe Hernandez, Tucson, Ariz.

I believe that stigma is the worst that is happening in our community, in general. Stigma is preventing us from achieving greater goals and taking the step forward to end the epidemic.

Brian Robert

Brian Robert, AIDS.gov, Fairfax, Va.

Since I'm pretty exclusively working in the Web side of HIV, stigma for us is getting information out there to everyone without alienating anyone. That's been kind of a struggle. The 12 Cities Project is one that's been a struggle for us, just trying to get the information out there that people need without ruffling too many feathers. That's been our biggest hurdle, as far as stigma.

Cora Giddens

Cora Giddens, Southwestern Medical Center, Dallas, Texas

I work with HIV-positve clients, and I see stigma every day. I hear about it. My clients -- men, women, youth -- come in and talk about what happens, and how [they are] affected, and the prejudice that they are faced with in all areas of life.

Helen Miramontes

Helen Miramontes, Retired Nurse, Las Vegas, N.V.

I did feel it some in the early '80s, as a nurse taking care of people with AIDS. There was resistance. People were afraid to even be around me because of the fact that I took care of patients with AIDS. And there were also care providers that wanted to know why I would even consider focusing on taking care of patients with AIDS, when it's just a dead-end job.

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Herman Williams

Herman Williams, Community Education Group, Washington, D.C.

Well, actually, HIV stigma looks like nothing in my life. I don't have any HIV stigma, due to the fact I know people with HIV. I have a close friend that's HIV positive. I was personally there for their journey, and I got a closer look at and another perspective of the virus, and how it affects individuals. So, no stigma here.

Jack Mackenroth

Jack Mackenroth, New York City; Diagnosed in 1989

Personally, I don't feel that much stigma, because I've been out for such a long time. But I feel it in the community, in terms of just the judgment that I know is out there. It's sort of not direct; it's more intangible, I think. But I just know there's a lot of judgment on people.

Kimberly Parker

Kimberly Parker, AIDS Behavioral Researcher, Denton, Texas

Ironically, I think HIV stigma in my life, because HIV is not such a topic that's talked about in a prominent manner, people don't see it as an issue. And then when it is time to talk about it, and we do broach the subject, it's, um, "Well, no, we're not ready. That's not something we need to talk about. They got that because of their behavior." So we're still running the spectrum with stigma. We don't want to address it, and when we do, it's a behavioral, you-got-what-you-deserve type aspect.

Luke Versher

Luke Versher, AIDS Action in Mississippi, Jackson, Miss.; Diagnosed in 1988

In my life? I have seen people die from stigma, actually, because they are ashamed to take their medication, or have their medication be seen by their family. I've seen people have to eat off paper plates and forks, because their family is so fearful. The lack of education is what fuels stigma, to me, in the South.

Marguerite Thorp

Marguerite Thorp, Student Global AIDS Campaign, Boston, Mass.

Well, a lot of the work that I've done on HIV has been global. And so when I come back and talk to people about that work, there's a lot of conceptions about AIDS being out there, and somewhere else; and that you can go visit a place, but you can come home, and that those are separate worlds. So I think a lot of the stigma that I've witnessed has been sort of this imaginary concept that AIDS only affects people out there, and it's not within our own communities.

Scott Schoettes

Scott Schoettes, Chicago, Ill.; Diagnosed in 1999

Because I work within the movement, and I work for an LGBT civil rights organization, I think it maybe looks different in my life, where I don't worry about it in some of the same ways that other people do, in terms of employers, etc. But the place that I see that HIV stigma showing up in my life is really in my social life, in my dating life -- and oftentimes perpetuated by other people within the gay community. People talk about, they want to be with someone who is DDF, right? "Disease- and drug-free." There are a lot of misconceptions about how easily HIV is spread. There's a lot of stigma around engaging in any kind of sexual encounters with people if you're HIV positive.

Ronnie Grace

Ronnie Grace, Community Health Worker, Milwaukee, Wisc.; Diagnosed in 1987

Stigma looks terrible. Yeah. It looks bad. It looks bad. It looks bad.

Mary Elizabeth Marr

Mary Elizabeth Marr, AIDS Action Coalition, Huntsville, Ala.

Even though I'm not positive, I see stigma every day, even when I go in to speak to groups. Sometimes people don't want to even speak to you about the disease.

Mondo Guerra

Mondo Guerra, Project Runway Season 8, Denver, Colo.; Diagnosed in 2001

Stigma for me is feeling uncomfortable to walk into a clinic, and assuming that everybody in the room is HIV positive, and vice versa -- like me, sitting there and having somebody come in and assume that I might be HIV positive. I mean, I am; but that's what stigma is.

Dr. Monique Howard

Dr. Monique Howard, New Jersey Women and AIDS Network, Trenton, N.J.

As a service provider, stigma looks like the prevention of information from moving forward throughout my network -- whether my network is professional or personal. When I send out information, invitations, updates on HIV, they go no further than the person that I send it to, simply because of the stigma that surrounds HIV. And so it's other people's perception of receiving the information, and then passing it on. So it's an absolute roadblock for educating other service providers, educating people in my network -- about HIV, about the programming, about updates, about information.

Oscar Lopez

Oscar Lopez, Capacity Building Specialist, New York City

I'll be honest. With the people that I work with and hang with and live with, there isn't much stigma amongst people my age. But among my friends who are 20 through 25: AIDS stigma usually means that they don't feel safe enough to admit when they've been having unprotected sex, when they've chosen to bareback. There are very few people that they can talk about it with, and so it's all very underground. And the shame is there about what they've done -- not so much about HIV, because they're all supportive of the cause -- but really embarrassed sometimes to talk and say that they've slipped.

Publicisit

Publicist, Living Positive by Design, New York City

I'm not positive, but I've been working on this campaign for four years. You're talking about stigma, and that's what we do. We're out, we're visible. I go to these events around the country -- conferences, AIDS Walks -- I'm going to San Francisco next week -- and I feel stigma in the community. I just feel for everyone. In my family, when I talk to my parents about what I do, it's such a disappointment that they're so uneducated. And that's so close to me. And I'm just like, "No, you're wrong. What are you talking about?"

Public Educator

Public Educator, Washington, D.C.

HIV stigma is the fear and the prejudice and the discrimination on ignorance and, just, fear of catching HIV. People still fear it. People still don't know. It's one thing to actually know to wear a condom and whatnot, but it's another thing to actually truly embrace it.

Social Worker

Social Worker, HIV Clinic, Durham, N.C.

HIV stigma is still pretty prevalent with the people that I work with. What I've seen is, a lot of times once someone finds out that they're HIV positive, they will just completely cut off communication, , especially with family members -- not wanting to have any lack of support. There's this idea that if you have HIV that means you're a bad person, because they attribute it to certain bad behaviors. Because of that, especially in the South, it's increased fear around wanting to disclose or even talk about HIV. It's treated sort of like an elephant in the room.

Analyst

Analyst, Washington, D.C.

Avoidance. People avoid talking about HIV.




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