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Facing the Re-Stigmatization of HIV

Spirituality Column #22

April 1997

It's happening again: people who are being diagnosed with HIV today are being stigmatized by their diagnosis. Other people seem to be saying, "We know how to prevent HIV transmission now... how could you do this to yourself?"

Stigma is a stain on our character, which negatively affects the way others see and interact with us. When we are stigmatized, our identity is spoiled by others' negative assumptions.

In the early eighties, before we knew much about HIV or AIDS, people living with AIDS experienced the stigma of suffering with an unknown, deadly disease. The stigma was based in fear... fear of illness, death, and the unknown. There are many stories of how AIDS inspired tremendous fear in the general population, largely due to the unknowns of the epidemic. Today, precisely because we know so much more, people with HIV and AIDS are being stigmatized once again. Nowadays, the stigma seems to be more based in anger, battle fatigue, and apathy.

Because of these attitudes, people are learning to be ashamed of their infection. They fear disclosure. This can lead to living in the HIV closet, which, as it always has, prevents a person from getting the appropriate support and even health care. At the Global Headquarters of the Metropolitan Community Churches, we know that there are many more of our leadership living with HIV than have identified themselves to us. It's difficult for some people to share this information with authority figures for a variety of reasons, but most of these decisions have to do with fear of what it will do to their identity. Stigma is spoiled identity. The potential of stigma can scare people so much that they don't get tested. It can push people into denial about their own ability to infect others.

I know one pastor who has been very open about having sero-converted to HIV-positive in the early nineties. He revealed his antibody status to his congregation, and immediately learned about the re-stigmatization of HIV. Some parishioners were angry with him. Some blamed him. Some left the church because they felt he was no longer a good role model. Others, seeing how he was treated, didn't get tested or stayed in the closet, because they feared the same reaction directed towards them.

But the fact remains that he, and others like him, still need support, encouragement, and a positive attitude. We need to believe in ourselves enough to do the work of staying alive with HIV. How has this pastor done this while some are turning their backs on him?

He speaks out about the injustice of these attitudes. He calls attention to the problem, and confronts the stigma head on. When he perceives that someone is treating him as if he were stigmatized, he names the problem and deals with this person directly. He is secure in his own wholeness and worth as a person.

It's easier to live in the HIV closet now that treatments have improved, and so many are living well with HIV. We just don't see the same numbers of people who look sick. It is easier to "pass" when one is "healthy, fat, and active" on protease inhibitors. In the gay community in the eighties, it was not uncommon to see frail young men, with wheelchairs and walkers and oxygen tanks. Often they were covered with lesions. Back in those days, stigma was easy to lay on persons living with AIDS because oftentimes they looked deathly ill, and those who are dying are stigmatized in our society already, no matter the illness.

I remember how frequently I felt stigmatized when I was very sick with AIDS in the early and mid-eighties. While there were several loving souls who I knew cared, there were also those who abruptly dropped me from their social circle. One circle of friends said it was too depressing to have me around: I was a walking reminder of everything they most feared. One friend, a deacon at church, suddenly avoided me all the time, after I told the church I had KS and lymphoma. I give him a lot of credit that after several months, he shared that he had been avoiding me because he didn't know what to say. I could see the fear all over him still, but at least he began to confront it. He died of AIDS about five years later, having faced a lot of his worst fears. One thing he learned was that stigmatizing others does not protect you from the virus.

Another time in 1984, I was sunning on the gym roof with a few other men. One particularly attractive man was flirting with me, and I flirted back. Before things went too far, I disclosed my diagnosis, and he left the roof without saying another word. About six months later, I met him in line at the County AIDS Clinic. He had recently been diagnosed with KS himself. He told me that he'd had men do to him what he did to me, and now he understood.

I realize now that my coping technique has involved realizing that other people's attitudes do not have to define who I am. I consciously reminded myself in the face of stigma, that God loves me, even if some people didn't. I tried to focus more on the people who obviously cared for me, and were not afraid to show it and act like it. I realized that I cannot control other people's reactions to me. But I don't have to let their negative attitudes define me.

Being stigmatized hurts. People treat you differently, and it's hard not to take it personally. Remaining in the closet is one way to handle the problem. In some ways, the HIV closet is a very safe place to be: there can be no immediate threat to job security or "social" security. Being open about HIV may take strength and courage. There are people today who harbor judgments about persons newly diagnosed with HIV or AIDS. The only way to change that attitude, I believe, is to put a human face on the condition, and challenge the assumptions that people are making through their stigmatization of others. Not everyone can afford to do this. But I have confidence that there will always be some who will remain open and challenge the injustices of stigma.

Where do you stand? Are you basing your attitudes about people living with HIV in fear and anger, or are you acting out of love?

Yes, we know how to prevent the transmission of HIV now. We must do everything we can to protect ourselves from infection or re-infection. But there are so many grey areas: what activities are 100% safe, aside from celibacy? How do we know for sure that a newly diagnosed person has "brought this on themselves"? Accidents happen, even with condoms and spermicide. Even if a person did deliberately get infected with HIV, do they deserve our anger and loathing, or our compassion and caring? I have confidence in God's forgiving love for us. Since I believe that, can I do anything other than try to offer the same to others? It seems to me that this is a good part of what it means to follow Jesus. Jesus didn't stigmatize people: he healed them.

©1997 by the Rev. A. Stephen Pieters

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