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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 16 - 30 (of 41 total)
pozinpa, Pennsylvania, 2009-11-22 01:06:16
Over the years ive learned that it would have been much easier for me to maintain some resemblance of a life had i never disclosed my status to anybody. Guys run in fear the very SECOND I tell them that Im poz. Its impossible to date when your own community turns you into a pariah. Why bother being honest? Someone lied to me and thats how i got HIV. i wasnt sleeping around. My honesty has done nothing for me except place me into total isolation with no hopes for finding a partner.
Duane, Charlotte, 2009-11-21 20:49:24
It's sad seeing the statistics of those unable to tell the people they care about. I went a whole year before telling my parents as well as my siblings but the freedom that came from telling them enabled me to have the best support group around, everyone needs to be loved unconditionally, I am about to tell my church of over 8,ooo members my story on Dec 6 with the hope of encouraging someone to walk in liberty.
laura, , 2009-11-21 06:13:21
I am walking in highway of discrimination at the moment and its worse than the virus itself. I am more scared of the stigma than Hiv itself.
Claire, Princeton, NJ, 2009-11-20 19:19:51
The reason women with HIV having children ranked lowest in the acceptability poll is that, unlike the other diseases/conditions, HIV can be passed on to children with potentially catastrophic consequences.
But this all goes back to education, education, education. Unfortunately, most people will never hear/listen/learn/understand that HIV positive individuals who are managed closely by their physician have virtually zero risk of passing on the virus and a great chance of a normal lifespan.
IamStone, Mulberry Arkansas, 2009-11-20 16:13:03
Tho I agree that stigma torwards the hiv community is still alive.I cant help but notice within the Poz community there is a bit of stigma between those that are gay and those who are straight.You would think having this common ground we could stop the hateful feelings between gay poz individuals and straight.Why cant we be as blind as the disease we are living with is.Only speaking for myself I have experienced the stigma because of my orientation.Stigma is everywhere.Even in the poz community.
springflower, , 2009-11-20 02:31:22
I read your article and think of what l am going through. I live in kenya and my husband died of hiv six years ago. Since then l have not had any intimate relationdship and cant get myself to date because of what our people think of me. Though l have not disclosed my status my husband did a wk before he died. I have gone thro hell with some telling me l have nine years to live. Others get irritated when you visit or get friendly. Can you imagine what may happen if l disclose my status?
ednardo louis, new york, 2009-11-19 22:41:51
Stigma!!!!!!!!Bad word, bad feeling...I believe the stigma will stop when most of the people will be infected by this disease! Please, dont take me wrong, i been living positive or 5 years now, my family does not know, my closest friends either! I could not resist the stigma in my life, it is enough have to deal with this damn virus!Lucky those, who will find support among friends and family, but that is not my case, i would definitely would be stigmatized, and i dont think i coul survive!
rex schadow, springfield, 2009-11-19 21:49:40
i alwys tell guys up front im hiv poz andmost wontrespond.even other poz guys wont date or keep in touch even in thepoz personals most guys play games, itshar meeting guys or even chatting, once they know yourpoz
James, SF, CA, 2009-11-19 20:46:25
When I was first diagnosed in 1994 I told peopel.I lost a few friends and my family got even weirder around me. I used to date, but got tired of watching them run for their lives in horror. I now don't reveal unless I really know you and I do not date nor do I have any plans to find a partner. When I was neg, I did not ever treat a poz person diferently. I dated a couple of poz guys and didn't get scared about intimacy because I was educated about HIV.
Eric, Fort worth, 2009-11-19 19:11:12
I hae lives with thi disease for 22 yers. I go through this exact samething but me I don't look at it like that. I just look at it like, now I know who my truw friends are. If they were ever your friend then they would'nt have Isolated me like they did. It opens up new doors for me mt & find me good & faithful friends.
Jenn, , 2009-11-19 18:26:12
In the 10 years of being poz I have only encountered stigma once and that was from my own brother. All of my coworkers, bosses, friends and the rest of my family were very supportive. When I found out I was pregnant 6 years ago they supported me then as well. I am glad I didn't let stigma interfere with that since now I have a beautiful healthy negative daughter. While my brother's issue with me hurts I refuse to not be open about my status and educate others as much as I can.
Douglas Dorson, st paul, 2009-11-19 17:31:52
I have lived with this virus for 26 years and I have seen just about everything from extreme hate to extreme compassion. I know of quite a few people that are terrified of disclosing their status. I have always been open about mine and tried to use mine as a learning tool for others. By looking at me you wouldn't know that I have faced death many times and seen it too many times.I wish people the knowledge that we have more to fear from them then they would ever have from us
Douglas Dorson, st paul, 2009-11-19 17:25:43
I have lived with this virus for 26 years and I have seen about everything and it has not really gotten better because among gay men and knowing heterosexual men and women that do not tell people that they are Poz. They fear loneliness and being an outcast from society. I have always been up front about my condition and for the most part have been treated with respect in last few years. I wish more people understood that we have more to fear from them then they would ever have from us.
Trish Steen, Kansas City, MO, 2009-11-19 16:23:05
I've been lucky for the past 20 years being poz. Most folks have been supportive, maybe overly concerned at times when I'd have a cold or the flu...they'd think it was the end for me. I've had a couple of dumbdumb remarks, but most people have been receptive and always want to know more. Each time I disclose I'm given the chance to educate. But it wasn't until I dropped my own fears and shame was I able to easily disclose. And I do so with my head held high. I stand proud, even with HIV.
Mohamed, Toronto, 2009-11-19 16:14:09
comments 16 - 30 (of 41 total)
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