HIV-Negative: How the Uninfected Are Affected by AIDS
Copyright © 1995 by William I. Johnston
New York: Insight Books-Plenum Press
ONE THING THAT TROUBLES ME is that I tend to use pornography for behavior control. I know this really sounds awful, but sex for me is something to be managed and controlled, and it's associated with need and disease. It's really hard to deal with. If I can manage my sexuality by watching a video, reading BEAR magazine, or whatever turns me on, I manage it. Phone sex has been like that for me. I used to have really unsafe, bizarre fantasies on the phone. That seemed relatively healthy, as long as it wasn't ever acted upon. I don't do it any more because of the cost.
But what really turns me on is unsafe sex, and the videos I really like are the old ones, where everything goes. It's all this wonderful sex, no holds barred, and at the same time I don't know if I'm being responsible. It's like somehow allowing unsafe sex to happen. It bothers me that that's what I watch.
I've talked to friends and they are struggling with some of the same things. We want Kansas City Trucking. We want the unsafe tapes, so we can live out those fantasies. The problem for me is I think there is a direct relationship between my seeing unsafe pornography and acting unsafely. That's not the only thing that influences my behavior, but there's a direct relationship between what I watch and what I want to do. In some way I'm allowing those images to model my behavior. And that's very disturbing. It does not feel okay.
I don't think it's about being sex-negative. I think it's about not having the appropriate safer-sex-positive images there, so that those can be substituted in some way that feels satisfying. Is there just simply no erotic safer pornography that we can watch? Do I not know about it? Am I aiding and abetting somehow by doing this? Every time I watch, at least once during the session, I have this thought: "I wonder if that's when HIV infection happened?" I know some of the stars are dead now.
It feels at times like a betrayal of the work I do as an HIV educator. I can share it with my closest friends, but it would be hard for me to admit in a work situation that this is true for me.
For me, visual pornography is very powerful. I know I have acted unsafely after looking at pornography. The unsafe behavior I might do is mostly oral sex: letting someone come in my mouth. The funny thing is that I don't even like it. It's very erotically charged for me, but the actual act I find pretty distasteful. It's not logical. Because the risk associated with oral sex isn't so clear, that's the boundary I play with. I haven't had unprotected anal sex in a long time; I think the last time was a few years ago.
In 1986 I took a part-time job in a sexually transmitted disease clinic in New Hampshire that was based in a feminist health center and had a clientele of gay men. Ostensibly I was hired to do STD counseling, but I got trained in HIV counseling and that's all I ever did there.
I didn't feel ready to get tested myself for a few years. The first time I got tested was in 1990. What I said to myself was what I told clients: I had a choice about whether to get tested, and I would make my decision based on my behavior and what I knew about HIV. I had had limited risk behavior at that point.
I don't know if not having been tested made me more neutral as a counselor. Maybe it did. I was not invested in having a client test unless the client wanted to. I was invested in the process for the client -- education, learning, and making a decision -- not so much the end result of the test. I felt that if I had the choice not to test, then so did everybody else.
I did disclose to some clients that I had not had the test. Some would challenge me. They would get angry: "How can you do this if you haven't had the test?" I sometimes disclosed why: "I have a lot of information, so I can make that decision based on my risk. So far I have not felt the need to test."
I would handle that differently now as a counselor. I wouldn't necessarily disclose information about myself, because I'm not sure the client needs to know whether I've tested to make the decision for himself. I would say, "The counseling session is about your decision to test, not about mine. Whether I've tested or not doesn't help you make your decision." I think the focus needs to be on the client's decision.
I had had a relationship of about three months with a man named Rusty who lived in Boston. When the relationship ended, we didn't see each other for a year and a half. I saw him at the beginning of the From All Walks of Life fund-raiser, and he had lost 40 pounds. It was clear that he was sick.
He told me he had AIDS. He had been diagnosed with pneumocystis pneumonia four months after we had broken up. I was very concerned about him. He was a person I loved very much. I had known the relationship couldn't work, but I always had a fondness for him, a special feeling. I also realized that I had put myself at risk with him. It wasn't substantial, but we had had anal sex with each other. I had penetrated him, he had penetrated me, without condoms. Neither of us had come inside each other, but some of the intercourse had been pretty rough, and I remembered him precumming a lot. Given what I know about HIV, he probably had virus in all his body fluids when we had sex. So I realized I was at risk to some degree.
Finding out that Rusty had AIDS was a difficult thing for me. I was not in great shape at work and actually asked to be excused from seeing clients for about two months. Because I was one of the only counselors who knew how to draw blood, I became a phlebotomist for a few months. I had a clinical supervisor, a nurse-psychologist, and was able to talk with her about the issues in my life in relation to the work I was doing. That was helpful. One of the things my clinical supervisor said to me was, "You're really at risk for being unsafe, because you are strongly identified with this fellow. One of the easiest ways for you to be like him is to be infected. I just want you to know that." She was very on-the-ball about that.
Like clockwork, I went out and started having unsafe sex. In July, I had anonymous sex with a man and let him fuck me without a condom. After he pulled out, I realized he had a lesion on his penis. I flipped out. I didn't know what the lesion was. I went to the doctor, got tested for syphilis and everything else. I didn't feel he had come inside me but didn't really know. It was scary. I realized afterwards, "My clinical supervisor was right." I was caught up in my emotions about the loss or potential loss of Rusty. My identification with Rusty was strong, and it was even worse because we couldn't be lovers. I was just sick about him being HIV-positive and having AIDS. I hated it, and all the pathology came down. It wasn't conscious at all. It felt beyond my control.
I got tested in August because it was so in-my-face. I felt, "This is a reason, I guess, to finally do this." I went to a counselor I knew and respected a lot. He had trained me. I knew he was HIV-positive and that he knew Rusty. I went to him because of the familiarity. I tested negative. It wasn't inclusive of the unsafe episode in July, but it answered the questions about Rusty.
When I got a negative result back, I didn't tell anybody for a while. It wasn't like, "Oh boy, I'm negative!" It was more like, "This is an awful process." I wasn't necessarily happy, because I was aware that other people went through the process and got other news. I felt it was a grave process. It's grave whatever your result is. Part of the gravity for me was understanding that I could have heard something different. It gave me more compassion for all of us, whatever the results of our tests. That is part of the responsibility of being negative: to not think of yourself as Other, to see the commonalities along the way. The process of being at risk, and finding out about that, is a brotherhood in itself, regardless of your antibody status. Recognizing that gravity lessened the apartheid between HIV-positive and HIV-negative people for me. I don't feel so separate from HIV-positive men.
Giving someone a positive result years ago, I spent a long time with the client in a posttest counseling session, sometimes with the client's partner present, and tried to help them manage what was happening. There wasn't a lot we could do for people in 1986 and 1987 in terms of treatment, so a lot of it was psychosocial support. People who were testing positive -- mostly gay men -- felt very alone. This was in New Hampshire. It took us about a year to develop a support group for people who were positive.
I'm working now in Boston, where there are a lot more people testing positive. When we see gay men testing positive now, sometimes there's no reaction emotionally at all. It seems they've expected it. They know a lot of people who are positive. They feel there is something they can do, and they want to start right away. On the surface, it seems like less of a crisis. They might cry at home, they might grieve by themselves, but there is a matter-of-factness about it that is shocking. I never thought I'd see this, but counselors now report almost-routine positives.
We used to see negative results as routine. We used to treat them so. They were usually pretty quick; we felt we didn't have to spend much time. My philosophy about that has changed over the past couple of years, partly through the HIV-Negative Support Group, and partly from the literature being published around these issues. Now when I train people, I tell them that a negative result is never routine. I have a protocol for giving clients a negative test result.First of all, we normalize the clients' reactions about the result, whatever they are. We don't assume clients are going to be overjoyed. If their partner is positive, if their best friend just died, if they lost a lover a year ago, we're not going to assume they are going to be happy about this.
It's important to check out whether clients believe the results. I think we sometimes assume that because the results are negative, and because that's "good news," clients will believe the test was right. So we check that out with them.
We discuss the result within the context of their lives. If something significant has happened in relation to HIV infection in a client's life, the test result is going to be seen in that context. I remember one man who tested because his brother was diagnosed with AIDS. He didn't know what to do about it. He knew he wasn't at risk. He needed somebody to talk to about that event in his life. He got some risk-reduction information along the way, but his need was to sort out -- with somebody he could trust -- what to do. That was the context of the HIV test for him.
When I teach people about counseling and testing, we brainstorm a list of 20 or 30 reasons why people test, and most of them are pretty good. They are all reasons that people really bring in: from domestic violence to a new relationship. The list can be pretty long.
I see gay and bisexual men testing to get support around being safe. They often see it as a time when they can check in with somebody about behaviors and ask one more time about what they're worried about. The test may not be the most important piece. Having someone to talk to is. If somebody is reaching out for help, and the test isn't exactly the focus, that's not a problem for me. For the Centers for Disease Control, in terms of funding, that's a problem. But for me as a counselor and supervisor, it's not a problem.
What we try to provide at the hospital HIV-test site I manage is a place where people are not going to be judged about their behaviors. We try to not slap people on the hands and not make them feel bad about themselves. We try to find out what successes they're having and build on that.
I was sitting with a client yesterday. He referred to himself a couple of times as "stupid" because he hadn't been practicing safer sex. Every time he said it, I stopped him and said, "Don't beat yourself up. You're not being stupid. Education doesn't equal behavior change." He needed to hear that many times. He feels he's "too stupid" to practice safer sex, he's "too stupid" to use a condom. Part of the intervention was to get him to see that it was not about being stupid or smart; it was about learning some facts about condoms, understanding that it was a process, and building on the successes he had.
I think it's the same as using fear to scare adolescents about AIDS: fear and shame only raise anxiety, lower self-esteem, and lead to acting out. If people don't feel good about themselves and are shamed by somebody in the community and feel even lousier, what happens is they act out unsafely. You usually do things that make you feel worse. That worries me. I don't think fear and shame work. They've never worked for me. The reality is that the times when I am able to make better decisions come from not feeling punished.
We say to clients that if they take semen into any part of their body, either the mouth, vagina, or rectum, they are at risk for infection. But they are the people who decide what their line is. We can't be the safe-sex police. We can't make people do anything differently by wanting them to. The only thing that is really unacceptable for me is if the behavior isn't consensual.
Sometimes clients will say, "My partner wanted me to be unsafe," or, "My partner asked me not to use a condom and I couldn't say no." Often it's with the steady partner where there is a breakdown. The same man might have anonymous sex with many different partners and be safe every time with those men, but with the steady partner can't say no, can't negotiate that.
There are all kinds of norms. Some people believe it's not safe to have somebody penetrate you wearing a condom and come while they are inside you: you always withdraw, even with a condom. That isn't the norm for other people. I would want to hear what the client felt was safe. I would want the client to tell me what was important to him about the kind of sex he was having.
I don't think you can talk about safer sex without finding the meaning of sex for somebody. If the client says, "I'm not going to use a condom for anal sex, even though I know my partner is positive, and I'm still worried about being infected," the person knows what could happen. The only thing to do is to find out why that person is doing that. What does it mean to that person?
This happens a lot with mixed-status couples: they have intermittent unsafe sex. One thing a counselor can do is to ask, "What's going on when you're unsafe? What are the conditions? What are the feelings? Is it after an argument? What does it have to do with the availability of things to use?"
Unsafe sex might be the only way a person knows how to tell his partner that he loves him: it's an expression of love. For lack of being able to verbalize feelings, people act unsafely, because that seems to be a more profound verbalization. Sometimes people need help figuring out how to say what they want, how to say what they need, and to understand that they don't have to be unsafe. That's longer-term work than just HIV counseling can do, but the HIV counselor can certainly be the person who illuminates that issue for the client. It might be the first time the client hears it spoken about like that. You might be able to get that person to work with a therapist to learn how to express love in ways that are less unsafe.
Sometimes I feel the struggle is how to be a sexual gay man. It's that basic. And if you've tested HIV-negative, it seems more loaded to me: there's more to lose. It's hard for me to know what to do because I don't have a regular partner. What do I do with my sexuality? What do I do with my need to be close to people? Does being gay mean that we have a different kind of sexuality, a different kind of focus on relationships than straight people? I don't know the answer to that. It's compounded by HIV. HIV is just one more thing to worry about.
My professional self is pretty secure, but my gay male identity is not as secure, is subject to everything every other gay man is subject to. The combination feels interesting. I struggle with my own repression around sex. I am not always positive about being sexual. Even though people assume I'm pretty liberal, pretty free, and pretty comfortable -- because I can talk about sex in a very positive, nonjudgmental way -- I'm not comfortable about sex.
Why I like hearing Eric Rofes speak is that he seems to be comfortable with his sexuality. He talks about it in relation to his struggles. It's very easy to see him as a sexual man. It's right up there on stage when I hear him talk. I respect that. I would feel good working with clients if people had a clear view of me as a sexual person, in an appropriate way. A counselor's sexuality should not be part of the session, but if you're comfortable with yourself, it comes through. At times I am comfortable with myself and it probably does come through. At other times I might be separated from it.
I sometimes go to rest areas or other places to cruise, and I run into HIV-test clients there. I handle it by acting matter-of-fact: "Hi. How are you doing? It's okay that we've met here. It's not a problem for me." I'm not sure that it isn't a problem for me in some ways. I think, "What am I going to do? Do I have a right to a sexual identity? Do I have a right to cruise -- to have anonymous sex -- being a health-care worker?" I would probably go to some lengths to avoid that situation, not wanting clients to see me at a place where risks are taken. Certainly it's possible to have safer sex at those places, but I think some risk is inherent in having anonymous sex there. I've watched people having unsafe sex. I wonder, "What's my responsibility here? Should I be handing out condoms? Should I stop people?"
In the absence of a partner, I've really been looking for some way to be sexual that feels safe and connected to people. But it's been hard for me to make room for that. I did a Body Electric weekend last April and I'm going to do another one in October. It involves erotic massage. You're essentially taught how to have a full-body orgasm without ejaculation. You're in contact with many different men. It's very heart-centered and very orgasmic. In a way, it feels like the antidote to some of the struggles I've had.
I don't think the answers are easy. I worry about people continuing to operate with the belief that if you have information about HIV prevention, you're all set, when there's absolutely no evidence that that's true and a lot of evidence to the contrary. It's always hard to work with people long term around changing behavior.
The lie is that everybody is practicing safer sex. That's the lie we have lived with in the gay community. It's simply not true, and the thing that worries me is that people don't know where to go to get help. I don't like community norms that feed into people feeling bad about themselves, not being able to talk about what is really bothering them.
There isn't enough sensitivity in the gay community to people's struggle with being safe. There aren't many places where a person can be honest and not be judged. Often people feel judged by their peers, and then they close up and are not likely to open up again. I don't know how to build maintenance and support for longer-term behavior change into a community.
Just about every gay male friend has told me that they have had at least one episode of unsafe oral sex within the last year. These are guys that know a lot about HIV. If that's so, then in any group of gay men, a lot have been unsafe within the last year, but very few are willing to talk.
There needs to be a different format for AIDS education. It should not be huge halls filled with gay men. In a large group, it's hard for people to feel safe. I don't think it feels safe for people to share something that they feel would be judged, or forbidden, or taboo. I'm hoping that in smaller groups, people will feel safer. Even the HIV-Negative Support Group is too big at times for people to feel they can really share some of the things that are going on for them. There needs to be a sense of confidentiality so people can disclose difficult stuff.
One of the myths about HIV is that people who do this work always practice safer sex, always do everything right, and don't struggle with these issues as much as anybody else. I've had to allow myself to be human and not beat myself up about my own struggles. I hope I don't talk to clients or teach people in such a way that I convey having it all together. When I say to somebody, "Behavior change is a struggle and it takes time," I'm really cutting myself slack. That doesn't invalidate my work.
That whole thing of "practicing what you preach" is probably the rawest form of conflict. I worry that if others knew I was not always practicing safer sex, it would invalidate my work or invalidate me.
A couple of times, a gay colleague has admitted that he and his partner have unprotected sex. They've been together for years. The only contact my colleague has had outside the relationship has been absolutely safe. It was an admission: he was sort of confessing to me that they weren't having safer sex. I found myself thinking, "It's such a novel idea. I wonder what that's like. To do that and not worry. To do that and have it be an expression of the relationship." It's been so long since I've been in a relationship of duration, I haven't experienced that myself: having a partner and being able to make that decision about unprotected sex.
Gay couples are under a microscope in terms of what they do and what they don't do. It's almost like the only way to be good and gay now is to practice safer sex. If we're practicing safer sex, that somehow redeems our sexuality. Somehow we're supposed to do this without questioning it.
A psychologist said something to me once about the belief that if you do this work, you'll be spared. I think many people, including me, still operate from that principle: because I am essential to the fight -- which is bullshit -- somehow I will be spared. I know it's not true logically, but I operate from such principles. It's like insurance against becoming infected myself.
I still find myself assuming that people who do AIDS work are HIV-negative, that somehow they -- if anybody -- should know how to protect themselves. I should know better. Seroconversion could happen to me. It's very clear to me that it could happen.
I've thought about what it would feel like to seroconvert, in relation to my work. I think it would be very difficult for me to worry about judgment: it's the supreme failure as a health educator, in some ways. It's also at the same time a real admission of how hard the struggle is.
When I'm teaching providers HIV counseling, I have an HIV-positive speaker come in to talk. I don't want people to leave the course without some sense of what it feels like or means to test positive for HIV. I thought about what it would mean to teach my course knowing I was HIV-positive. One of the questions I asked myself was, "Would that give me more validity? Would I have more credibility?" I don't know the answer. I don't want to become positive to prove the point.
It's been a while since I've tested. I've had risky sex since then, so I don't know what my status is. But I often think of myself as negative. My last antibody test is a part of my identity. I think my work is tied to that identity. I don't think it's dependent on it, but I think it's tied to it.
I think it's important to talk about an HIV-negative identity, as long as it's not at the expense of the connections we have with HIV-positive people. Whether I'm HIV-positive or HIV-negative as I continue to do this work, I'm still me doing this work, with my sensibilities and my values. That's what's really important, not what my antibody status is.
Maybe there are parallel conditions for people who are infected or not infected that we are not seeing. Some agencies offer services to everyone affected by HIV. They don't separate people into groups by HIV status during their workshops. It's hard to pay attention to common needs if there are polarized needs. HIV-negative people have some needs that are different from HIV-positive people's, but maybe they're not as divergent as we think.
I struggle with staying HIV-negative. That's part of the mission of the HIV-Negative Support Group, and that's partly what we do in posttest counseling sessions with clients who test negative.
Where does wanting to stay negative come from? Does it come from loving yourself? Or does it come from being afraid of HIV? Maybe that is the issue for me personally: it's about fear and my conflicts about sex, not about loving myself and saying, "I deserve to be happy sexually and to be free of infections."
What are you willing to do to stay negative? For some people, that can involve being absolutely crazy, to the point where you're obsessing about it night and day, as some people in the HIV-Negative Support Group seem to do. The way they operate is to not get infected at any cost. I have to fight against wanting to judge men who are paranoid about getting infected and who will do anything to avoid it.
A person getting infected is not the ultimate tragedy. There are many things that are more grievous losses than your antibody status. There are bigger things in life to lose than your HIV negativity: your integrity, your sense of compassion. Part of the trick here is to keep HIV in perspective.
What I'm imagining is this Faustian bargain, where you bargain that you'll never get HIV, but you lose your soul in the process. That's the struggle, to not let that happen. One of the questions you asked is what this book could do: it's somehow to prevent people from becoming zombies.
The gay male community is being ravaged by the epidemic, and there are plenty of people who would like to see us all dead. One way to respond is this: "Love your community enough to feel good about yourselves." In a sense, the survival is in that. If we can't get in touch with the goodness in ourselves, what we end up doing is effecting our own Final Solution. That's real. I don't think that's abstract.
HIV-negative people need to talk about and deal with this, because they are dealing with something they could lose at any moment. Each time you have sex, you are dealing again with the possibility, so there's incredible stress in terms of living with that potential loss. That's not recognized. We focus on the completed loss, not the potential loss. The completed loss of HIV-negative status clearly has terrible stressors involved. But the potential loss does too.
Men are afraid to talk about their HIV-negative status. We've had a lot of descriptions about the lives of people who are positive. I think there is a responsibility for HIV-negative men to talk about the complexity of what it feels like to be HIV-negative, and to articulate it. That's why I'm grateful for the HIV-Negative Support Group, and this book, and the work that Eric Rofes and Walt Odets are doing. We're starting to describe it. It needs to be described. It takes a kind of courage, because people may not want to hear it.
We have a mistaken notion that survivors are not traumatized. We know that's not true. We know that people need to be taken care of if they've been traumatized. If you admit that survivors are traumatized by the experience of survival, they need care. Survivors of concentration camps were scarred in some very profound ways. You couldn't turn back the clock.
We don't often connect survival with transformation. We connect it with escaping from things. We escape the infection. We escape the concentration camp. But it is about transformation. When I train HIV-test counselors, I talk about the psychological aspects of testing positive, what that means in terms of identity change. Transformation probably happens as much for people who are negative. I don't think we talk enough about the subtle identity changes that people who are negative go through.
I hope my definition of survival gets more complex, because oftentimes I do it a disservice. Often when we think of the word "survivor," we think of it as being "successful," or we think of it as meaning "unscathed." That's unrealistic. I can't identify with it when I think about it that way. I can identify with surviving with marks, surviving as a changed person because of the experience.
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Conclusion · Appendix A B C · Notes · Contributors