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HIV/AIDS Blog Central

The Problem of Stigma

By Rae Lewis-Thornton

February 7, 2012

This piece originally appeared in Rae's blog, Diva Living With AIDS.

National Black HIV/AIDS Awareness Day

Today is National Black HIV/AIDS Awareness Day and for me that's bittersweet. Let me explain. I'm happy that African Americans are coming together across the country to bring awareness to HIV/AIDS, but sad that it seems, no matter how hard we work, the number of HIV cases continue to rise.

The CDC says that Black folks are 44% of all new cases of HIV in the United States and nearly half of all cases of HIV in this country. It seems the more things change for the better around HIV/AIDS, the worst it gets in the Black community.

There is so much good news around HIV/AIDS. Treatment is so much better than that single treatment of AZT I started taking in 1992. Testing for HIV is a swab in the mouth with test results in 20 minutes. There are socially conscious condom companies like B Condoms promoting prevention and responsible sex. There are more Black organizations tackling HIV/AIDS than ever and even large numbers of Black churches are doing their part.

Yet the numbers of cases continue to rise. So what is the freaking problem? Now, I don't have all the answers, just some insights to this complicated issue. First off, there is still a lot of stigma and shame surrounding HIV/AIDS. This problem didn't start in the Black community, it started in American society as a whole. I remember the days of fear, when nurses refused to touch people who were dying of AIDS, funeral directors refused to bury and pastors refused to perform funerals and mothers and fathers left their dying child to die alone.

Those early days of AIDS set the barometer for AIDS. I remember Jeanne White, the mother of Ryan White told me one day that a rumor was going around in her small town that Ryan, who was a hemophiliac, contracted HIV because she was a nasty homemaker and didn't keep a clean house, rather than blood products he received for his condition. For Real, I couldn't make this shit up if I tried. I have countless stories that are just as mad as this.

The stigma around HIV created an enormous amount of shame for people living with HIV/AIDS and their family. This stigma is embedded in American culture. In the 21st century it's become politically incorrect to talk negatively about HIV and people living with HIV openly, but the whispers float in our society just like the air we breathe. I can understand at one level the Black community saying, "Not Me!" I mean who wants to admit that HIV is rampant in their community. Shoot, I kept my infection a secret for seven years because I was afraid that people would judge me. Still today, I get nasty tweets about my dating and sex life, but I tackle it head on.

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Stigma for the most part drives this disease in many ways. Let me explain. People are afraid of going to get tested for fear that they will be judged. Many private doctors will ask their patient, "Why do you think you need an HIV test?" And by doing so, their behavior has been called into question. While other doctors have gone as far as to say, "You don't need a test, you're in a monogamous relationship" or "you're married." When in fact, everyone -- including the doctor -- needs an HIV test. Other options for testing are in a HIV clinic or at a Department of Public Health and many people are afraid of being "spotted" in one of these places.

Now let's take that as our baseline: Fear of getting tested for HIV because of being judged. Now, the CDC says that 38% of newly infected people are infected by people who didn't know they were infected. And contrary to belief, statistics show that most people with HIV don't want to deliberately infect someone. So, it stands to reason if more people knew their HIV status, less people would be infected.

That's why testing is important. Lets' take it a step further. New data shows that if an infected person is in proper treatment then the chances of them infecting their partner is minimal. So, knowing your HIV status is key.

Now let's take treatment. Many people are afraid of being seen in the AIDS clinic so they don't keep their appointments and some forgo treatment altogether, rather than being spotted. I can't make this stuff up. I have a friend in her early days of being told her HIV status who scooted down in the seat of her car in the clinic parking lot, because she saw someone she knew in the lot. I have yet another friend, who stopped being my friend because other friends of hers kept asking how did she and I become friends. And yet another friend, a doctor nonetheless, who wouldn't take her medication because she didn't want her colleagues to catch her taking it.

Another issue closely related to proper treatment and testing is disclosure. People live in fear; If they know their HIV status, how will people treat me and if I tell, will they still love me? There are many family members who instead of providing support, just simply gossip. Then there are other family members who never discuss it. If HIV is not a welcomed topic in a family, it isolates the infected person. Isolation leads to depression, and depression leads to noncompliance. When people are depressed they have no will or desire to take medication or make doctor appointments and for that matter disclose their HIV status to future partners for fear of rejection. I mean if I'm being rejected overtly or covertly in my family, why would I believe anyone else would want me.

I hope you get the point, it's a tangled web we weave with stigma and it helps to fuel the new cases of HIV in the Black community. But I believe we can change this with personal responsibility that starts with you and trickles down to the community. One that says HIV/AIDS is a medical condition and not knowing my HIV status is not taking the best care of myself.

At some point, we have to take ownership of this disease. The African proverb, "He who conceals his disease cannot expect to be cured," it true. If we don't own it, we can do nothing about it.

Taking ownership fuels personal responsibility and challenges stigma. Have a conversation with your boyfriend and girlfriend about condom use and testing. If you care enough about each other to lay in bed together, then you should care enough to go get tested together and honestly use condoms without judgments about what he/she may or may not be doing behind your back. Just understand that in the 21st century, shit happens and you need to be as prepared as you can be.

If we take ownership we challenge stigma. Sisters and brothers should go get tested together. Taking ownership is having that conversation within the family. If you have an infected family member, call them and have that conversation about how you can honestly support them. People with HIV/AIDS need more than prayer.

Take ownership, have educational programs in our churches, ask your pastor. What harm could that do? He/she may surprise you. All of our organizations should be talking about HIV/AIDS on a regular basis. The more we talk, the more we put to shame stigma. Black folks have never been this small. The things that affect our community, we have tackled them head on. We cannot allow the history of stigma in this country to fuel how we address this issue. To do so is condemning a generation of people to death. We are better and greater than HIV/AIDS and we can show that by fighting stigma at its core. I Am My Brothers/Sisters Keeper! Change will only come because we decide to make it so!

Post Script! Follow National Black AIDS Day on Twitter @NatBlackAIDSDay and their website is www.nationalblackaidsday.org. Like their Facebook Fan Page.

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See Also
What Does HIV/AIDS Stigma Look Like in Your Life?
More on Stigma and HIV/AIDS

Reader Comments:

Comment by: Winston (Virginia) Wed., Sep. 17, 2014 at 8:33 pm EDT
You cite "personal responsibility" in the article several times. When does that apply to the actual choice to engage in sexual behavior? The premise is that the actual means of transmission is automatically excluded from the realm of personal responsibility. That only applies to how we handle the "epidemic" not to how to stem the tide of new infections. Heaven forbid we should expect people to be temperate in their behavior.
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Comment by: D. Robert (Mtn Home, AR) Sun., Nov. 18, 2012 at 12:43 pm EST
HIV testing should be standard medical practice whenever blood is drawn regardless of the reason.
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Comment by: stumped2 (Little Rock, AR) Sun., Nov. 18, 2012 at 12:39 pm EST
If stigma for getting tested is the biggest problem and getting tested is important for everyone, the medical community should simply make it a common practice to HIV test EVERYTIME blood is drawn regardless of the reason,e.g. annual physical etc. Make testing for HIV a normal standard medical practice for everyone except those who are known positive.
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Comment by: Anonymous Mon., Apr. 30, 2012 at 12:31 pm EDT
What a fantastic article.
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Comment by: Cliffwms44 (Philadelphia, Pa.) Fri., Mar. 16, 2012 at 11:11 pm EDT
I agree stigma is both inward and outwardly imposed,when person's like myself feel ashamed of being positive or hold on to the fear of others finding out our status. Stigma is fear of being infected or to the unimpaired it is the lack of information on how the virus can be transmitted. Unprotected sex,the transference of bodily fluids. Blood Semen pre-cum vaginal fluids and Breast milk. Today what I tell people is that the rules of engagement have changed when we factor in STI's into the cross-hairs with HIV. In my days of being an addict the risk I took,while having sex (unprotected) with females, I perceived I was having a good time. Hindsight has me in prayer because all I ended up with was HIV. But I did not contract the virus from my risky behavior, I decided I wanted to get married. I married a woman who was HIV+ I loved her very much,that even when she disclosed her status after a while into the relationship I told her "well now I'll never leave you". We married for nine years, she later passed away from lung cancer and HIV related illness. So the one thing,is as a people we need not fear rejection just because of being positive. For three years taking test I kept coming up negative,our relationship took a turn,we separated, I continued taking test. This time I tested positive,finding out on my Birthday. So in 30+ years we are up against Stigma bread by myth and misinformation on how this virus is contracted or transmitted. AIDS education is a must for everyone,because condoms are not 100% up against certain STI's like Herpes, Syphilis or HPV. Be unafraid to open a dialogue in our homes schools churches and social groups. We the people can erase stigma by steping out of the shadows and sharing our stories,so others can see themselves in the risk they take. Because it is a two person desision most of the time when,we have intercourse? So both partners must take the blame,especially if a condom is not used with every partner everytime. Better choices.:)
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Comment by: L. Muvhu (Zimbabwe) Mon., Feb. 13, 2012 at 6:04 am EST
Dear All
What you are saying about stigma is very correct and us a organisation we a trying to cube this changellge by engage youth to discuss issues of HIV and AIDS freely and try to correct the misconception around the issues of HIV and AIDS, I am working With the organisation called Society For Pre and Post Natal Services. We are targeting the young reproductive age group between 11-30 years.
I am much interested to reduce this challenge of stigma especially in disadvatge communities.We can chat on my facebook - L. Muvhu
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Comment by: Patrice (West Philadelphia, pa) Thu., Feb. 9, 2012 at 6:16 pm EST
Poetry works for me, everybody seem to listen
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Comment by: Ginger Hill (EastCoast) Thu., Feb. 9, 2012 at 4:13 am EST
I am poz for about 16 years . I can not dwell on Who, What Where When or Why .I contacted it That is not the issue anymore. I live a very good life I look and feel great everyday . I am not angry or Mad.We cannot always blame people for what happens to ourselves.Stop dwelling in the past Protect yourself And stop blaming others for what happens in your lives. Live Laugh Love
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Comment by: So So Sad (Somewhere, FL ) Wed., Feb. 8, 2012 at 3:02 pm EST
Unfortunately, the FEAR still prevails & the "It won't happen to me" is the big factor. Let's not forget the Bug Chasers & "Gift Givers" epidemic. ~ http://narth.com/docs/chaser.html

Sadly, some people just don't care still in 2012. We are still being careless!

So So Sad
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Rae Lewis-Thornton

Rae Lewis-Thornton

Rae Lewis-Thornton is an Emmy Award-winning AIDS activist who rose to national acclaim when she told her story of living with AIDS in a cover story for Essence Magazine. She has lived with HIV for 27 years and AIDS for 19. Rae travels the country speaking and challenging stereotypes and myths about HIV/AIDS. She has a Master of Divinity degree and is currently working on her Ph.D. in Church History. Rae has been featured on Nightline, Dateline NBC, BET and The Oprah Winfrey Show, as well as in countless magazines and newspapers, including Emerge, Glamour, O, the Oprah Winfrey Magazine, Jet, Ebony, the Washington Post and the Chicago Tribune, to name a few. She earned the coveted Emmy Award for a first-person series on living With AIDS for Chicago's CBS News.

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