Living With HIV: Are We 'Damaged Goods'?

Todd sat slumped on the sofa in my office. He avoided eye contact and described a particularly painful experience with stigma. He had recently come around the corner at his part-time job and heard several co-workers speaking about him and his HIV positive status. More specifically, they were discussing how he might have acquired the virus by speculating about the nature and frequency of his sexual activities. It was meant as a cheap laugh among themselves, but for Todd it meant much more. Although he made no effort to hide his HIV status and was "out" at the office about being gay, hearing his co-workers making disparaging remarks about his sex life and his health status in such explicit terms felt like a strong punch in his gut. He had a brief flash of anger, telling them to shut up, and then stormed out, pulling inward and automatically falling into the old habit of numbing himself by detaching from the emotional pain.

For Todd, the words of his colleagues echoed hurtful messages he had gotten his entire life. When he came out as a gay man he had alienated some friends and family. After finding out he was HIV positive, his partner left him. He struggled to cope with the psychological adjustments necessary for living with the virus and, although most of the time he had decent self-esteem, such hurtful words consistently pushed him out of emotional balance. Over the years a small part of him began to think they might be true. At work that day he berated himself for not defiantly rejecting their words, but he could not bring himself to speak up. They resonated because at some deep level Todd believed that he was indeed "damaged goods."

He was experiencing one of the great, untreated aspects of the HIV/AIDS epidemic: stigma. And Todd's version was one of the more insidious: internalized or "felt" stigma. Years of living in a society that proclaimed certain behaviors or characteristics to be tainted had left their mark. Like many, Todd had several layers of stigma. He was a gay man and a person living with HIV. Some people have even more layers: gender, race, age, ethnicity, poverty, sexual minority, nationality, immigration status, and almost anything else that can be used to classify and judge. The personal costs are enormous. Years of experiencing such stigma creates a defensive shell into which a person retreats, excessively alert for any sign of judgment, at times flushed with shame, and believing at a deep internal level that they are indeed flawed.

Stigma is often imposed by those who don't share a particular characteristic deemed unfavorable. I remember that in the early days of the HIV epidemic many people declared that there were two kinds of people with HIV: the "innocent victims of AIDS" (those that acquired the virus through transfusion) and the others (the guilty variety) who were infected as a result of their own [read perverse] sexual activity. Yet, stigma can also come from those who could be expected to have more empathy. I've been surprised recently to discover that gay men who are long-term survivors can have strong negative feelings about other gay men who are newly-infected, and as a result can impose a stigma of their own. "How could they get infected these days when so much is known about how it's transmitted? When I was infected we didn't know any better. What's wrong with them?"

Sharing a characteristic, then, doesn't necessarily imply unity or safety from stigma. For example, gay men can be particularly harsh with each other. Personal ads are filled with an emphasis on "masculine only" and abbreviations such as "DDF" (drug and disease free) and UB2 (you be, too). It is true that people have preferences, but these words uncomfortably echo the language of oppression.

Stigma first caught the attention of researchers in the 1960s, when Erving Goffman studied groups of "deviants": prisoners, mental patients, and homosexuals (I guess we have made some progress). He found that those who hold the power in any society define certain characteristics as undesirable and then link those characteristics to certain other groups of people. Those stigmatized groups then become "tainted" and vulnerable to various forms of discrimination (and even criminalization). At the root of stigma, then, is power: those who have it often stigmatize. Recent theorists have taken this one step further. Not only do those in power stigmatize, but the act of stigmatizing certain groups of people may be necessary to actually hanging on to that power.

How does stigma affect HIV? Experiencing stigma increases someone's vulnerability to acquiring the disease in the first place. Fear, poverty and countless other factors reduce a person's willingness or ability to sexually protect themselves. HIV stigma itself prevents many people from getting tested because they worry about the assumptions that others will make about their behavior. Multiple "layers" of stigma can also have an impact. Where I live, for example, the gay and lesbian community center provides free testing. That is the closest testing site for the nearby Haitian community, but very few Haitians get tested at that center (if they are inclined to be tested at all) because of gay-related stigma.

Stigma prevents others from following through on treatment. One study found that 36% of people living with HIV had experienced some form of discrimination from a health care provider. People also worry that if their status becomes known the result will be rejection and an adverse effect on their social support network. Medication adherence can also be impacted. One client of mine routinely missed his medications when he had dinner with his parents, who didn't know his HIV status. Another woman I know wouldn't take her medication at certain times when her children were home because they made her sick for several hours.

There are stigma reduction programs in place, although their effectiveness is difficult to measure. Most focus on interpersonal dynamics such as decreasing a person's fear of being around someone with HIV. They provide the opportunity for healthcare providers, family, and friends to get both information and work through their own feelings of fear or judgment. Studies show that the most effective programs of this variety combine several approaches. For example, a presentation by someone living with HIV is most effective when accompanied by a second type of intervention, such as an exercise to allow people to process their own feelings.

For persons experiencing stigma, interventions mostly focus on cognitive behavioral approaches. These work by changing internalized negative beliefs about oneself and building components of self-esteem and a sense of personal control. Stigma interventions acknowledging the role of power need to be developed. As noted earlier, stigma and discrimination are intertwined with societal power and control. More needs to be done in terms of education, legislation, and advocacy to reduce stigma at this "macro" level.

Familiarity with a member of a stigmatized group can increase empathy and thereby reduce stigma. If I am in a situation where declaring my own status might help reduce stigma, I try to do so. I led a workshop at a recent professional HIV conference and, in the course of my presentation, mentioned my own HIV positive status. Reactions ranged from shocked to indifferent, but, most importantly, several people who were HIV positive approached me afterwards to say how empowering it felt for them to hear a trainer at a crowded conference declare his status.

Can mass media help in reducing HIV-related stigma? There is little objective research, but a clever study recently caught my eye. The American soap opera "The Bold and the Beautiful" apparently followed an HIV-positive character over a two year period. The show is broadcast in a variety of countries, and one researcher tracked changes in HIV-related stigma in, of all places, Botswana. Remarkably, at least in that country, simply being exposed to a HIV-positive character on television increased empathy toward persons living with the virus and reduced stigma. Damaged goods? Definitely not.

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Read David's blog, Riding the Tiger: Life Lessons From an HIV-Positive Therapist.