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How Stigma Kills
by Regan Hofmann
People don’t want us to:
Cut their hair,
Serve them food,
Babysit their children,
Or be their friend.*
Why AIDS stigma is as deadly as the virus itself.
Defined as “a mark of shame, disgrace or discredit,” stigma has long plagued HIV/AIDS. It is one of the defining characteristics of the disease, differentiating it from its biologically-parallel-but-socially-altogether-different retroviral kin: hepatitis, herpes and human papillomavirus (HPV). While we can chirpily discuss vaccinating our children against HPV as we choke down our Cheerios, and we can sit comfortably in front of commercials for herpes drugs, the mere whisper of the word “AIDS” often causes all polite conversation to cease.
Watch POZ December 2009 covergirl Nokhwezi Hoboyi
from the Treatment Action Campaign in South Africa
speak about how stigma has affected her life:
We’re not imagining this. In 2007, amfAR, the Foundation for AIDS Research, commissioned Harris Interactive to conduct a study among the general American public seeking their attitudes about women living with HIV/AIDS. The survey showed that the majority of Americans are uncomfortable around people living with the virus. More specifically, the study revealed that 59 percent of Americans are somewhat or not at all comfortable with having an HIV-positive woman providing them with child care; 47 percent of Americans are somewhat or not at all comfortable with having an HIV-positive woman serve them food at a restaurant, and 35 percent of Americans are somewhat or not at all comfortable with having an HIV-positive woman as their hairdresser. This study, which mined attitudes about HIV-positive women, flushes out that it is indeed the virus itself that makes people squirm. In other words, people don’t fear HIV because (as some suggest) they misperceive it to be a gay or a black disease; they fear HIV and the people living with it, period.
The study also revealed that the vast majority of Americans are not comfortable with the idea of having a romantic relationship with an HIV-positive partner. Eighty-seven percent of Americans are somewhat or not at all comfortable dating someone who is HIV positive, and 89 percent of Americans are somewhat or not at all comfortable marrying someone who is HIV positive. One in five Americans said they would not be comfortable with having an HIV-positive woman as a close friend. Ouch.
The results of a recent survey on poz.com about stigma showed that our readers’ perceptions of the general public’s attitude toward people living with HIV are spot-on. Eighty-eight percent of you said that your fear of being stigmatized has made dating/relationships more difficult (remember, 87 percent of the general public said they’re uncomfortable dating you), and 91 percent of you believe AIDS stigma prevents people from getting romantically serious with/getting married to you (89 percent of the general public agreed with you). That’s very close statistical mirroring.
Given that HIV-related stigma is as bad as we perceive it to be, it’s no wonder then that 65 percent of you said that HIV-related stigma has prevented you from disclosing to family members; 71 percent of you said it keeps you from telling coworkers; and 60 percent of you said you don’t tell friends because of fear of being stigmatized.
One statistic we found particularly disturbing in the Harris study was that very few Americans believe that HIV-positive women should have children. In response to the question, Should a woman with any of the following conditions have children?, fifty-nine percent said women with cancer should have a child; 47 percent of people said women with depression should; 37 percent said women with multiple sclerosis should; 20 percent said women with hepatitis C should; 19 percent said women with Down syndrome should; and 17 percent said women with schizophrenia should. Yet, only 14 percent of Americans said they thought women with HIV should have a child.
This points to a root cause of AIDS stigma: lack of education. Too many people still don’t have the correct facts about the disease. For example, women with HIV under proper medical care can usually have a child without passing the virus on and are likely to live long enough to parent the child. Since lack of information breeds fear and fear breeds stigma, one clear prescription for fighting stigma is renewed awareness and better education around the disease.
It would be one thing if stigma stopped with an attitude. If all it meant to be stigmatized was that some people didn’t like us, it would perhaps be manageable, albeit uncomfortable. But when stigma gets in the way of our survival, that’s another thing entirely. Thirty-four percent of you said that fear of stigma has prevented you from seeking care, treatment and support. And 19 percent of you said you don’t disclose to health care professionals because of HIV-related stigma, a fact that certainly compromises the level of care you are receiving. Imagine how many people don’t get tested for HIV because of stigma. It’s estimated that one in five Americans living with the disease is unaware of his or her status. And according to the CDC, it’s estimated that HIV-positive people who are unaware of their infection may account for 54 to 70 percent of all new sexually transmitted HIV infections in the United States. Seems clear to us that stigma is a barrier to individual—and public—health. Not to mention that 48 percent of you said fear of stigma has adversely affected your career. It’s harder to keep a good job and afford medical insurance and prescription drugs if you’re not performing at optimal levels at work.
But while much of the impact of HIV-related stigma is quantifiable, it is, arguably, those aspects of stigma not captured by statistics that prove the most devastating. As we went to press, more than 1,000 of you told us chilling stories of how stigma negatively affects your lives—breaking down your spirit and your will to live.
Only a small group of you spoke of how you fight stigma, standing proud and strong despite society’s desire to keep you down. Some of you have found the inner strength and resolve to rise up in spite of people’s fear and ignorance.
As a community of people living with HIV and as a society in general, we need to do a better job fighting stigma by reopening the dialogue about this disease and dragging the unseen facts and faces into the light. Because it is much easier to fear what we don’t know. (Interestingly, while 85 percent of you said that President Obama and his administration are not doing enough to combat stigma around HIV/AIDS, 78 percent of you said that the HIV/AIDS community itself is not doing enough to combat stigma.)
It's a chicken-and-egg conundrum. Stigma around AIDS will only dissipate when the world is safe enough for people with HIV to no longer fear disclosing. Individually, many of us living with HIV who have disclosed in POZ or in our lives have seen that people can be supportive and kind once they understand the facts around the disease. (Sixty-seven percent of you said that people treated you the same, post disclosure.) But 87 percent of you said that the current anti-discrimination laws do not sufficiently protect HIV-positive people from being stigmatized, which means that things must change before we can afford to show our faces and change the way the world sees people living with HIV—for the better.
Forty-nine percent of you said that HIV-positive people’s fear of being stigmatized is worse than the actual stigma. At POZ, we see repeatedly that this is true. For those who feel they are ready, and can safely come forward, speaking about having HIV can do much to erode the corrosive stigma that keeps us from good health. It bashes stigma when we show the world we have nothing to hide—and are nothing to fear.
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comments 30 - 41 (of 41 total)
Mohamed, Toronto, 2009-11-19 16:14:09
you are right, I am in the same situation a of Immigration, been in Toronto for the last 8 years, and now ended up with Heart problem, I am open with my HIV status form day one. well Stigma KILL'S
blackdb, , 2009-11-19 15:55:59
mine was with my sisters, i had told them, they never said anything to my face. however, one night we all went to a chinese resturant and my neices wanted to try my soup and i let them. i had not taken a bit and they used their own spoons and my sisters and their husbands did not speak for the next hour, it was way into the meal i notice what had happened. I was heart broken, devastated. Overall though, i have been a healthy HIV + person for 17 yrs & plan to out live my siblings & friends
jab515, bronx, ny, 2009-11-19 15:21:51
I only have one thing to say and I hope that some one will benefit from it. As COBRA case manager and a person living with AIDS i belive that when we who are living with this can get past public oppinion and not allow the stigmas limit who and what we are. Then we might be able to open a line of communication. By being brave enough to not worry what people think you can enfact attract people who have HIV/AIDS and those who dont ask you how you do it. Thus opening a line of communication.
Marcelo F. Levy, durham, 2009-11-19 13:02:33
As a long-term survivor (Diagnosed 1985)I have made it my mission to disclose my status to everyone when given the oppurtunity. How do I get the T-shirt?
altadeno, Altadena, CA, 2009-11-19 12:07:22
Response to Thezak, No stigma will help to prevent HIV infection. Stigma discourages testing and encourages misinformation about transmission - both of which lead to more infection. We may not be able to cure AIDS, but sometimes we can cure ignorance.
coherent, Lexington, KY, 2009-11-18 19:57:11
Finding out 8+ years ago that I was HIV Poz changed the course of my life. It turned me around and helped me to see me and my wants. The stigma is everywhere. I tell any potential partner, and they usually run in fear. But I feel that is just GODS way of telling me you dont need them. I dont disclose at work. I feel I must put forth an above an beyond effort to solidify my job. I overwork myself out of fear of the stigma. The stigma has driven me to suceed. I am now on my way to my PHD.
JAEM, Palm Springs, CA, 2009-11-18 10:48:21
I find it very difficult to tell any of my friends or coworkers. I have many family members that haven't spoke to me for 18 years. From the outside It might seem like I have the perfect life. I have been married for more than 20 years and we have good jobs and a beautiful family. They don't want to hear I am HIV+ and frankly I don't want them to stop being my firends. So I don't tell them.
thezak, , 2009-11-18 01:27:52
Does this mean that no stigma will cure AIDS ?...
David, Newport News, VA, 2009-11-17 17:05:09
I was first diagnosed in Florida. I was so scared of disclosing my status because I had heard horror stories all over the place, but to be honest--only my romantic life has taken a hit. I have more friends now than I did before I was out about my status, my doctors and such are all extremely supportive, and my family contacts me far more often than before. In fact--I'd say overall that learning I was positive has had more positive effects than negative.
Melissa Baker, Richmond,VA, 2009-11-17 09:37:43
Thank you for this article!Im a divorced mother of 3.I have been diagnosed HIV positive for 27 months. Was diagnosed during a LTR. In the past year I have disclosed to freinds and family even my preteen daughters. I forwarded this article and the few responses I got encompass my past year "Im glad Im not the narrow minded precentage.You are my friend and always will be.God Bless. Love Always." "Well I am PROUD to say that I have an amazing bestie and the fact she is HI postive doesnt bother me!
shane, salem, 2009-11-17 09:05:54
50/50 as a straight male been poz since1992 i was a roofer in boston area no more construction for me but the system here is good ssi sec. 8 mass health food stamps fuel assistance & yes dental my family & friends are accepting but try to get a date out of the positive community good luck. nobody wants to talk about it (but there ok w/it). p.s. where do i get that red hiv positive shirts to start social conversations.shaneo1970poz personals.thanks
TheGr8Deb8, Atlanta, 2009-11-17 08:17:12
comments 30 - 41 (of 41 total)
After 3 yrs single I met someone I thought was the one. We dated for over 6 months before becoming intimate-rare for two men-afterward we both got tested & I was poz. Bi and semi closeted I worked to educated him, we were intimate once post disclosure. He didn't kiss me and when I woke he was gone, never seen again. I was so hurt, I have not dated seriously since and it's been over 3 years. The trauma of having someone you love, trust completely discard you is more than I can put into words.