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HIV/AIDS Blog Central

Stigma: Whose Responsibility?

By Marc Kolman, M.S.P.H.

March 7, 2010

I started writing for TheBody.com to try and address issues of stigma and HIV in the Southern United States. My first blog talked about internal and external stigma. What I mean by external stigma is stigma as a result of actions directed towards individuals or groups through any form of targeted actions taken because of who they are as individuals or the group they belong to. This can be a result of race (racism), class (classism), sexual orientation (homophobia), gender (sexism), or HIV status. When I say internal stigma, it is the result of ongoing treatment that targets individuals in a way that they learn to believe that these messages are real and define who they are. Internal, or felt, stigma is thus the result of external, or enacted, stigma acting over a period of time. Though I think it can be helpful to understand the terminology to get a better understanding of how stigma operates, this is somewhat academic and understanding these terms is not really the topic of this post.

As I've thought more, I realize how critical stigma is in the fight against HIV. Bonnie Goldman, in her farewell message to TheBody.com, says that "stigma and discrimination are still the rule". Regan Hoffman, the editor of POZ, wrote in a recent cover story that stigma "is one of the defining characteristics of the disease (HIV)." She writes, "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." Forty-nine percent of the respondents to a survey conducted at poz.com about stigma said that fear of being stigmatized is worse than the actual stigma and that stigma adversely affects dating, relationships, disclosure, and careers.

Stigma affects us all. Stigma has damaging effects whether we experience discriminatory and stigmatizing acts directed towards us, whether we witness these acts, or even whether we participate knowingly or un-knowingly in discriminatory acts. This may not be news to any of us. The question is, what do we do about stigma?

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Stigma results from people thinking that others are different than them and are somehow deserving of being treated poorly. No one would intentionally treat someone else poorly unless they somehow feel justified in doing so and unless they themselves have been treated poorly as well. Discrimination is sometimes blatant, such as a racist or homophobic remark, but is often more subtle. Can you tell when there is housing discrimination? Employment discrimination? How often does someone need to interrupt you or exclude you from a conversation before you realize it might be caused by stigma or discrimination? Is the intolerable disparity in HIV infections between Whites and Blacks in this country a result of stigma? How about the higher HIV rates in the states in the Deep South (Alabama, Georgia, Louisiana, Mississippi, North Carolina, and South Carolina)?

Stigma hurts. It hurts all of us. Stigma clearly hurts those who are targeted -- those it is directed towards. But when one is hurt, we are all hurt. We all suffer the results of stigma. When one person is targeted, it hurts the rest of us. It therefore stands to reason that addressing stigma is everyone's responsibility. And, in fact, this is true. We can all take responsibility for improving conditions in society that affect everyone, for improving conditions in the world. However, it also often falls on those who are oppressed to take initiative. To help, here are some ideas how individuals can work with stigma.

One key way is to learn how to identify and address the internalized feelings that result from stigma. As challenging as this can feel, it is extremely powerful to know how to identify stigma and its effects. It helps to understand how and when stigma happens, and how it affects you as an individual when it happens. Do you get angry, hurt, withdrawn, depressed, or infuriated? As mentioned earlier, fear of stigma is worse than the actual stigma. Learning to understand stigma, how it operates, and what happens as a result will help to alleviate the fear of stigma. One way to work on this is through sharing stories -- stories of hurts, of successes, of triumphs, and of events in your life that felt discriminatory or stigmatizing. These stories can be about HIV, race, gender, age, class, etc. Laughing, crying, and shaking while you do this helps.

Second is to build allies. Allies are helpers, those who will stand side-by-side with you, taking up the struggle, who always remember you are good and who have confidence in you no matter what. Relationships with effective allies may need to be nurtured, supported, and encouraged, just as they need to nurture, support, and encourage you. To develop allies, think about whom you trust and who you want to have close to you. Then think about what it will take to get them in your life. This, in fact, may be the biggest contradiction to any internalized stigma -- to get people who understand you, who think well about you, and who will stand side-by-side with you as you are challenged by things directed at you that have very little do with you.

A third thing is what a dear friend of mine calls "self care". Be gentle and kind with yourself. Eat well. Exercise. Take care of your body. Do things that you enjoy whether that's dancing, going to the theater, reading, walking in nature, or being with good friends. Of course, be smart about any HIV medications. Self care goes a long way towards maintaining a healthy, productive perspective on life and in gaining an understanding of what is coming at you from outside (external stigma) as compared to what comes from inside of yourself (internalized stigma).

Stigma is a key issue in the struggle against HIV/AIDS. It has resulted from a long history of issues in our culture, none of which have anything to do with the disease itself. Stigma is directed at lots of groups in our society and it gets confusing to know how it operates and whether any stigma is the result of one's HIV status, race, gender, sexual orientation, or something entirely different. Stigma clearly affects everyone and we can also take some responsibility to end stigma, whether we are the recipient of or witness to.

Thanks for reading.

Send Marc an e-mail.

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Reader Comments:

Comment by: Dave (NC) Tue., Nov. 29, 2011 at 4:35 pm EST
Ive noticed the stigma from day one once I was diagnosed and released from the hospital after 3 weeks. I had 2 african american educated women tell me to get my assets down to under 2000 so my hospital bill would be covered by the hospital.. Ive also noticed a general stigma here towards white people from other african americans. Ive noticed they say few words to each other as well, leading me to believe this is a community divided. I was in the marined here in 1983 and came back to raise my son, true, they may have saved my life but now I feel stuck here, Being from a small town in san diego I never in a million years would imagine being in this predicament, the attitude here is Christian and they do not take well to change. In a sense I feel sorry for them, Ive experienced the qorld, lived in japan, Alaska, California and New Mexico. I dont see how someone could not see any culture other than their own. It really is the strangest phoenomena Ive ever seen in my life. I was never racist but I have to tell you this is a weird place and after 5 years have failed to understand it. I came here looking for a new life and ended up in a strange strange environment, regardless of my HV status. So In closing I have to agree with the author and how stigma remains high in a state which acts like they can do no wrong. I guess if you know no better than you know no better or any different. Sad place
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Comment by: Justin (North Carolina) Thu., May. 13, 2010 at 3:12 pm EDT
I agree with solo that there is stigma by medical professionals. When I was first diagnosed I was lucky to have had a sympathetic and caring physician who did everything he could to get information and find out from other doctors in the field of study to help me choose the right meds etc. When he left his practice to move away a few years later, there was no one, absolutey no one in my area who had the same doctor / patient relationship. I went to FIVE different doctors who had no desire to treat me. They don't say it to your face but you can feel it and read all over their bodies. This led me to give up and I hadn't seen a doctor for a few years and stopped taking any meds. During that time my health deteriorated and I developed K.S. But thankfully my partner knowing that I had given up on doctors did his own research and after some debate and reflection we moved to a different city so that I would get the attention and treatment needed. Clearly we all know that having the right doctors and specialists who truly care about their patients health is key. I am taking antiretroviral meds again and finding success with removing the ks lesions. Yes, there is a stigma even by doctors and if it takes having to move away from the place that you love to get help, you have to do what is right for you. And I love my partner for having stuck by me through that difficult and frustrating time.
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Comment by: Kaynan (Honolulu, HI) Thu., May. 13, 2010 at 2:47 pm EDT
Aloha and Mahalo, Marc for your blog on stigma.
I am one of those who fears stigma to the point that I have shunned the thought of ever dating anyone again much less have any physical relationship. It's been 10 years since being infected and although I take care of myself, eat right, exercise and work hard at what I do. I can't break away from the fear of being rejected and the stigma associated with having hiv. It took years for me to finally tell my family and some have accepted me and others want nothing to do with me, and like for many that hurts beyond measure. And I guess because of that rejection, that stigma has reached the very core of me and is difficult to shake free. I have two very close friends, (a gay couple) who I have told my status to and they are like the family that I reach out to when I feel lonely which is most of the time. I appreciate your words so much and is grateful for having found "The Body" and the caring indidviduals who contribute here. Breaking free from the stigma is difficult but I see that it is necessary in order to have a full and rich life that I know I deserve. I want to be loved just like everyone else and now realize that I have to take that leap of faith and open myself up to it. Free the internal and external stigma to meet the person I know is out there for me. I will give it a try, No.... I won't just try... I will succeed.

Thank You, Kaynan
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Comment by: solo (detroit, mi) Mon., Mar. 22, 2010 at 5:24 pm EDT
Please don't forget about medical stigma, that is, when you go to the doctor for example ED and the doctor really does not want treat you because they think you will go out to infect others so its better for you to have ED. Furthermore, when you go to your doctor who blames all your other existing problems on HIV, for ex: kidney problems or diabetes; each doctor blaming your HIV. This may not make sense but we can tell when the doctors just keep passing the buck on your illness because of some underlying belief either moral or religious; but we can tell when doctors treat us basically rather than proactively. Then again I could be wrong! Sorry for the rant.
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Comment by: JIMMY MACK (SOUTHAMPTON, NY) Wed., Mar. 10, 2010 at 8:30 pm EST
I believe the only way to end the stigmatism associated with HIV is to get out there and show people we are no different from any one else. Eleanor Roosevelt said something like: " No one can make you feel inferior without your permission." I am not ashamed that I'm HIV+ or gay or an alcoholic/addict in recovery and I let everyone know this about me and i mean everyone; friends, family, co-workers, strangers, the media and because I do, I don't feel any stigmatism. I have spoken to thousands of student in the Tri-State area through Love Heals and many more peolpe through the blog Bonnie Goldman encouraged me to write on this sight and if you read them, you will see that ever since I went public with my diseases and sexual preference, I have never felt the stigmatism associated with any of them and since I put it out there as a good thing, peolpes reactions to me are overwhelmingly positive, just like me! So, in my refusal to feel inferior, I don't give others permission to see me that way and guess what, they don't!! Goodbye stigmatism!!
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Comment by: stephen Davis (massachusetts) Tue., Mar. 9, 2010 at 8:26 am EST
I thought when I saw, Stigma: Whose Responsibility? I was ready to find another supportive voice; I was somewhat underwhelmed. I was looking for that individual who would confront, either institutions or individuals who espouse these actions. By letting an individual or group know that their actions were unacceptable rather than internalizing it, hopefully will encourage others. The article did give me insight into how others could deal with this issue.
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Marc Kolman, M.S.P.H.

Marc Kolman, M.S.P.H.

Marc Kolman is a long-term public health administrator and advocate. With a passion for social justice, Marc has worked in many settings, including state and local governments and non-profit agencies. Primary interests include HIV and issues affecting the deep south. Marc is currently the executive director of the Piedmont Health Care Consortium which envisions a society in which no one is limited by oppressions, health disparities, or social injustices. Marc lives in Carrboro N.C., is an avid cyclist and is the father of three daughters.


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