POZ TV : How Stigma Kills - by Regan Hofmann

POZ - Health, Life and HIV
Subscribe to:
POZ magazine
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr MySpace
POZ Personals
Sign In / Join

Back to home » POZ TV » December 2009

Most Popular Links
Most Popular Lessons

The HIV Life Cycle


Herpes Simplex Virus

Syphilis & Neurosyphilis

Treatments for Opportunistic Infections (OIs)

What is AIDS & HIV?

Hepatitis & HIV

20 Years Ago In POZ


Click here for more news


December 1, 2009

How Stigma Kills

by Regan Hofmann

People don’t want us to: Cut their hair, Serve them food, Babysit their children, Marry them 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:

Click here for more World AIDS Day 2009 videos.

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.

Pages: 1 | 2

Search: HPV, amFAR, stigma, gay, black, education, Obama, fear

Scroll down to comment on this story.


(will display; 2-50 characters)


(will NOT display)


(will display; optional)

Comment (500 characters left):

(Note: The POZ team reviews all comments before they are posted. Please do not include either ":" or "@" in your comment. The opinions expressed by people providing comments are theirs alone. They do not necessarily reflect the opinions of Smart + Strong, which is not responsible for the accuracy of any of the information supplied by people providing comments.)

Comments require captcha.
Please enter this number for verification:

| Posting Rules

Hide comments

Previous Comments:

  comments 1 - 15 (of 41 total)     next > >>

Jose, Miami, 2010-01-04 19:01:58
Great article, I have been poz for 3 years. My parents don't know because they will not handle the news well and thats an understatement. My sis, close friends all do know and are VERY supportive. I am very selective who I tell because of the stigma. My coworkers don't know. Reality is the stigma(mainly fear) is still out there alive & well. What's sad is being a gay man the worst discriminators have been other gay men - so much for community.

Rural Loner, Iowa, 2010-01-01 01:40:28
Try living in Iowa with one of the harshest criminal codes for Criminal Transmission of HIV. Conviction requires no infection. Nondisclosure will do it. Then when out of prison... a class B felon, lifetime sex offender with polygraphs every six months indefinitely, GPS bracelet for 2 to 5 years, registry required every three months, multiple rehabilitation classes and psychologist sessions... and a pessimism of one's future... socially, professionally, emotionally, romantically... How's that?

David John, San Francisco, 2009-12-21 21:55:18
I guess I am lucky to live in San Francisco. I have only been poz 2 years, and have not experienced this, but I am selective in whom I tell. So far only a few close friends. I have not told my family because they could not handle it, nor acquaintances because I don't want to be known as the guy with HIV and treated differently. I always tell anyone with whom I may have sex and have been rejected lots of times, but that is OK, because I understand the fear. I was the same until 2 years ago.

Denise, johnstown, 2009-12-19 03:26:25
Well why i have surrendered to always acknowleding that i am positive and it is a great stigma.I did not the mention of the embaressed children who have grown up knowing this lost a lot of people I thought were my freinds .My thing is that i had to not mention as much for the grandchildrens sake they dont understand and neither would their freinds, so whats a Nana to Do??????

Nick Nicholas, Jackson, MS, 2009-12-15 14:38:07
I agree that HIV stigma kills. Being part of a support group helps. But having an ignorant sister-in-law that won't allow me to have any contact with my niece because she's afraid I will give her AIDS does hurt. It makes me angry. The rest of my family has been very supportive though. When I was 1st diagnosed w/AIDS in 2007 my first thought was what it could mean for a LTR of 6 years. He said, "AIDS is something you have. It is not who you are!" We're still together. I want the t-shirt, too!

Blaine, Dallas, 2009-12-03 21:31:37
The only blessing with HIV is that you find out who really cares about you. The ones that drop you never deserved your time, they wasted your time and now just be thankful they are out of your life!

Mary Berry, san jose, 2009-12-03 15:28:30
When I was first diagnosed I didn't think much about who I told. I had about an 85% so called friend drop out rate. Since then I am much more discreet, but I haven't had much luck in relationships. As soon as He is told, He is gone. It has really taken a toll on my self esteem.I don't have much hope in finding a life partner. I smile, and put on a brave face but I would like to believe it possible for falling in love one day. People try to be P.C. but in reality, stigma (ignorance) abounds.

Preciuos, UK, 2009-12-02 11:45:42
When i was diagnosed positive 4years ago, i was devastated and wanted to talk to somebody.I disclosed to my best friend of 23 years friendship, she was like my elder sister, but that was the biggest mistake i made, the news of my status went like wild fire.I started feeling uncomfortable in company of others as i didnot know who knew or not. At the moment i have no friends, feel isolated, i have no courage to disclose to my family.I donot do dating in fear of rejection. Its a lonely life.

Angelo, , 2009-12-01 11:58:00
Changing careers a feww years back, I realized that working in HIV Organizations was not the same living in the outside world. Now I work in public health .. I personal now know the feeling of loneliness and how hard it is to not talk about your statues .. I do know this "We are loved and we have each other" stay strong and never let anyone make you feel bad !

iampoz, nashville, 2009-11-29 20:14:24
I was diagnosed as HIV+ in 2005. I have told my family and a very few close friends. Its sad that my sister & mother dont want me to tell anybody because they're afraid that people in the small town they live in wont want to hang out with THEM...because they have a "positive daughter or sister"!!!!!!! It really hurts my feelings that they feel this way. Shouldnt it be up to me as to whether or not I wanna tell people or not?

loca, , 2009-11-27 10:25:40
pozinpa do not be discouraged . In America you have over 70 million adults and after 20 years of age, each of us has an average of 21900 days to live, with or without hiv. If you were to use each day in the 21900 days to meet each adult in America to ask for their love, you see that you would only meet 21900 adults out of 70 million of them. That is not alot so I encourage you to go out there and search for a partner. Always disclose and wear condom for sex as usual. Catch the love if you can

Jerry, Saint Petersburg FL, 2009-11-24 21:32:29
There is enough stigma between syraight and Gay people. Tere is I know for a fact that there is alot of stigma in the Gay community.Especially if you are stricken with Aids and lipoatrophy/Facial wasting has gotten the attion from gay's and straigts alike.I could talk all night about this.

Dave, Vancouver, 2009-11-24 13:19:47
If I said today that I wouldn't marry some one with hpv it would be because i don't love any one with hpv today, that I know of. How many of us would say today that we'd marry some one with down syndrome, or even be their friend for that matter? Please be carefull when talking about other groups of people. Stats can be twisted in many ways to achieve agendas such as funding, and when you see them compartmentalizing groups of people I ask why the us and them approach?

Dave, Vancouver, 2009-11-24 13:17:19
If I said today that I wouldn't marry some one with hpv it would be because i don't love any one with hpv today, that I know of. How many of us would say today that we'd marry some one with down syndrome, or even be their friend for that matter? Please be carefull when talking about other groups of people. Stats can be twisted in many ways to achieve agendas such as funding, and when you see them compartmentalizing groups of people I ask why the us and them approach?

Frederick Wright, Tampa, 2009-11-23 11:33:08
After 20 years of being HIV positive and hiding in shame for many years I now say to myself get over it, if you can not talk about sex or HIV I am sorry for your closed realty in your life and kiss my ass, if you don't like either. For I going to live, love and have great sex and if your little opinon is shame,shame on me .. Back to you for I am free and no need to hide in shame every day for it is better to fight for honor ,than hold my head down in shame.. No More Shame... NO more Guilt,

comments 1 - 15 (of 41 total)     next > >>

[Go to top]
The Treatment Action Group (TAG) bestows its annual Research in Action Awards (RIAA) in New York City.

Facebook Twitter Google+ MySpace YouTube Tumblr Flickr Pinterest
Tell us what you think
Did you participate in an event for National Black HIV/AIDS Awareness Day 2016?


more surveys
[ about Smart + Strong | about POZ | POZ advisory board | partner links | advertising policy | advertise/contact us | site map]
© 2016 Smart + Strong. All Rights Reserved. Terms of use and Your privacy.
Smart + Strong® is a registered trademark of CDM Publishing, LLC.