HIV-Negative: How the Uninfected Are Affected by AIDS
Copyright © 1995 by William I. Johnston
New York: Insight Books-Plenum Press
I was 22 when HIV testing became available in 1985, and I remember that I did not want to learn if I was infected. I did not want to know I had a potentially life-threatening illness. In the summer of that year, I spent a weekend with my parents on Cape Cod, Massachusetts. I had been working long hours at a summer job, so when I arrived in Dennisport, I was rundown. I felt achy, I had a burning sore throat, and the glands at the sides of my neck were swollen.
I knew that swollen glands were one of the common early signs of HIV infection, but I knew too that they could be a sign of many other illnesses. I prayed it was not HIV infection causing my symptoms, but I secretly feared it might be. Although it was unlikely that my past sexual behavior had put me at risk for AIDS, I was not sure. There has always been a degree of uncertainty about the transmission of HIV, so I was uneasy.
My parents were uneasy too. I had come out to them as a gay man a year earlier, and when I did, they told me they were concerned about my health and hoped I was "being safe." That was all they said out loud. They didn't talk about AIDS and neither did I. So when I was with my parents on the Cape that weekend, a silence overwhelmed us. I sat on the beach with my parents, but instead of speaking to them, I gazed out over the water of Nantucket Sound and remained silent.
A seagull hovered over the water, riding a draft of wind that kept him suspended in midair. Several times the gull rose high above the stone jetty that protects the beach, each time carrying a clam in his beak. When he was high enough, the gull would drop the shell onto the rocks below, hoping to break it open and reveal its contents. Sometimes the shell would break; sometimes it would remain fixed shut.
The subject of AIDS hovered over my parents and me that weekend, like the clam carried aloft in the seagull's beak. Even if we had wanted to open that clam and see what was inside, we could not. Nothing would break open against our stony New England reserve. I didn't want to entertain the thought that I might have HIV.
When I went to my childhood pediatrician after returning from the Cape, I did not raise the question of whether my symptoms might be AIDS-related. I didn't tell him I was gay or that I was fearful about AIDS. I didn't discuss with him the possibility of taking an HIV test. He gave me a probable diagnosis of mononucleosis. When I returned home from the doctor's office, my father obliquely referred to AIDS. "I hope you asked all the questions you needed to ask," he said. But of course, I hadn't. The prospect was too frightening.
In 1985, four years after AIDS was first reported, the technology of HIV testing became widely available in the United States, and gay men were unprepared for the profound effects it might have on their lives. When the test arrived, gay men were faced with an ethical and emotional dilemma: To test or not to test?
Opinion was divided. Gloria, a 55-year-old HIV-test counselor, told me that this division was eloquently expressed by an informational flyer printed when HIV testing first became available in Boston. "I still have the broadside," she said. "One side says, 'Take the test' and the other side says, 'Don't take the test.' I think those issues are just as relevant now as they were in 1985." As an experienced HIV-test counselor, Gloria knew that the decision to get tested is a complex one, with many aspects to be carefully weighed.
In chapter 7 I explore the reasons why the gay men I interviewed decided to get tested. In this chapter, conversely, I explore the decision by gay men not to get tested in the early years of the epidemic. Studying the reluctance of gay men to get tested when the test first became available not only offers insight into why some gay men today choose not to get tested but also helps us understand the ways in which remaining untested was valuable for gay men in the early years of the epidemic.
When HIV testing first became available, many gay men were opposed to it. One man I interviewed remembered going for an HIV test during the first week it was publicly available in San Francisco: there were protesters outside the testing site, and he had to struggle to get past them.
A large part of the protest was that there were no medical treatments available if you found you were infected. There were a few therapies for the opportunistic infections that struck people with AIDS, but nothing proven effective for retarding HIV in asymptomatic HIV-positive people. Learning you were infected seemed equivalent to a death sentence, because people with AIDS did not live as long as they do now, and there were few long-term survivors to look to as examples.
To many community activists, it seemed that HIV testing was not intended to help people who were infected but rather was a vehicle for surveillance, discrimination, and possibly even quarantine. Alan, 31, who has performed a show about HIV testing, recalled early attitudes against HIV testing:
Early on, it was a political decision. It sure seemed to me -- and to almost everyone else I knew -- that the agenda of testing was not treatment, because there weren't treatments. The end products being talked about were things like quarantine and isolation, and those hardly seemed something I wanted to be part of. Given the history of the way our government and the medical establishment have treated queers -- or minorities of any kind -- there seemed very little reason to trust that there was anything good about the idea. For a long time, there was no reason to get tested and lots of reasons not to.
Was Alan's distrust of the purpose of HIV testing justified? Recall that in 1985, there were no protections against discrimination for people who were HIV-positive or diagnosed with AIDS. People understandably feared they might lose their jobs, their insurance, or their housing if it became known that they were HIV-positive, because such losses routinely happened to people after HIV-positive test results were disclosed. For these reasons, many community activists and physicians recommended caution about testing.
In addition, there were -- and still are -- no federal protections against discrimination based on sexual orientation, and in the early years of the epidemic, being HIV-positive was viewed as an almost surefire indicator of homosexuality. Gay men already had decades of experience with witch-hunts based on sexual orientation, so the prospect of witch-hunts based on HIV status -- as a surrogate for sexual orientation -- was not welcome.
Fear of discrimination from outside the gay community was mirrored also by a personal fear of discrimination from within the gay community. If you found out you were HIV-positive, you might feel obliged to tell sexual partners, which could result in rejection. After all, the reasoning went, who would want an HIV-positive partner?
Behind the reasons publicly put forth by community activists when testing was discouraged early on -- lack of medical treatments and fear of discrimination -- lay other more personal fears: the fears of illness, of stigma, and of death, and the fear of learning you might have infected others or were capable of infecting others.
These fears kept me from getting tested when testing first became available. I did not want to learn I was ill, I did not want others to shun me because of my HIV status, I did not want to die, and I did not want to accept the emotional burden of finding out that I had infected someone else or was capable of doing so. Such fears are human responses to the awareness of mortality and are part of the character of life in times of sexually transmitted plague.
Austin, a 36-year-old medical professional, captured some of my own feelings when he described why he did not get tested. "Not getting tested was the most comfortable place for me to be, because I didn't know what I was going to do with the information once I found out," Austin said. "I thought, 'God, if it comes back positive, am I going to be like a time bomb waiting to go off?'"
Austin was not alone. Surveys in the 1990s asking why gay men had not gotten tested revealed that the lack of medical treatments and fear of discrimination were less often reported than more psychological reasons, such as "I don't think I'm at risk," "I'm afraid of the results," and "I'm not sure I could handle a positive test result." If similar surveys had been done when testing first became available, I suspect these psychological reasons would have appeared as well.
In the face of the bleak prospects for the infected early in the epidemic, some gay men voiced the intention to kill themselves if they found out they were HIV-positive. Those in drug treatment expected their sobriety would be threatened by learning they were HIV-positive: they would have little reason to pursue treatment for addictions if they believed they were already "doomed" to die. A positive test result could thus lead to anxiety, despair, self-destructive substance use, or even attempted suicide.
All of the above concerns make it easy to understand why gay men who suspected they were HIV-positive might not have wanted to take a test to find out. But what about gay men who suspected they were HIV-negative? Surely they would want to know they weren't infected, wouldn't they?
It may sound strange that gay men who believed they were uninfected would not immediately want to learn they were HIV-negative, but this was so in the early years of the epidemic. Although fear of a positive result probably accounts for most of the reluctance among gay men to get tested, fear of a negative result cannot be entirely discounted.
I believe several factors fueled gay men's reluctance to learn they were HIV-negative. These factors have not often been acknowledged, and I mention them because they help us understand why some gay men chose -- and still choose -- not to get tested, and why others have reacted -- and still sometimes react -- with disappointment, confusion, or despair when they learn they are HIV-negative, reactions which I explore further in chapter 9.
One reason some gay men did not want to learn they were HIV-negative was they feared this knowledge might lead them to feel immune to HIV and therefore to take greater risks. HIV-test counselors were aware early that some people misinterpreted the HIV test as indicating susceptibility to infection rather than infection itself. Test counselors therefore frequently cautioned people not to assume that a negative result meant they were invulnerable to HIV infection. Nowadays, ignorance about the scope of the test is less common, but there is another way in which this idea persists. Some HIV-negative gay men use HIV testing as a way of justifying continued unsafe sexual behavior, with the reasoning that if they repeatedly test HIV-negative, then whatever risks they are taking must not be truly dangerous.
Another way in which finding out they were HIV-negative was undesirable for many gay men was that it took away one of the important motivations to practice safer sex: the fear that they might infect a sexual partner with HIV. For some gay men, uncertainty about their own HIV status helped them to maintain safer sex consistently. As long as they did not know they were uninfected, it was easy to imagine being infected, and this strengthened the ethical resolve to practice safer sex. If protecting other people from infection is a moral imperative more compelling even than protecting oneself from infection, then remaining ignorant of one's lack of infectiousness might be desirable.
In practice, it is not clear whether these two beliefs -- that one is uninfectable, and that one is uninfectious -- actually result in unsafe behavior. Studies exploring the link between learning one's HIV status and subsequent sexual behavior have been inconclusive. Some have suggested that there is no correlation between learning one's HIV status and subsequent risk reduction. Other studies have suggested there may actually be a negative correlation between learning one is HIV-negative and subsequent risk reduction. Therefore, the fear that learning you are uninfected might lead you to unsafe sex may indeed have operated to make some gay men reluctant to test.
Finally, learning you were uninfected meant that you might become infected in the future and therefore would bear a responsibility to stay uninfected. Seroconversion -- the event of moving from being HIV-negative to being HIV-positive -- is a possibility much feared by HIV-negative men because of the blame that it entails. Not getting tested in the first place allowed men a unique comfort: if they did not know for sure that they were uninfected, then they did not have to feel responsible for staying that way. If they later found out they were infected, they could not be blamed or blame themselves for "knowing better." Staying untested thus allowed some men to escape the burden of feeling they had to remain uninfected.
Another reason gay men were reluctant to learn they were HIV-negative was the fear that it might establish a distance between them and their HIV-positive peers. Some men didn't want to learn they were HIV-negative because of its impact on current or prospective relationships.
Kevin, a 46-year-old child-development specialist, told me that he decided not to get tested as long as his lover with AIDS was still alive. "I was very sure I did not want to know before he died," Kevin said, "because if I found out I was negative, that would have created a barrier between us. It was clear there was a difference between us: he was getting sicker and sicker; I wasn't. I did not want something more that might separate us. It would be like saying, 'You are really sick, and I am not.' I didn't feel comfortable holding that up to him."
Some men looking for relationships found that learning they were HIV-negative made them feel as if they were in a different social category, an issue I explore in chapter 11. "There are some incredibly hot men in Rochester who are HIV-positive. Two of them work out at my gym," said Cal, a 42-year-old software training specialist from Rochester, New York. "I'd like to roll in the sack with them, but they are difficult to get close to. It's not that I'm unattractive or anything, but they seem to prefer being around other HIV-positive men or guys who have lost lovers to AIDS. It's like a private club. I resent their attitude at times."
The idea that HIV-negative gay men might feel resentful at not being part of the "HIV-positive club" strikes some HIV-positive gay men as odd. "I'd be glad to trade places with you any day" is a common response. It is hard for HIV-positive gay men who are blinded by their own feelings of being excluded to see that HIV-negative gay men can also feel excluded. Yet being HIV-negative in the 1980s was in some ways a kind of disenfranchisement from the gay community, because so much of the community's identity at that time was wrapped up in AIDS.
Staying untested allowed gay men to maintain a solidarity with HIV-positive friends and peers in the community. Just as people who believed they were positive anticipated rejection, people who believed they were negative feared that verifying this might place them beyond the borders of the gay community, which was rapidly becoming redefined in the popular imagination as an AIDS community. Not getting tested, then, was for some a deliberate strategy to not distance themselves from the HIV-positive.
In a related way, I remember not wanting to test because I was afraid it might influence my commitment to doing volunteer work in AIDS education. I feared that if I learned I was uninfected, I might not feel that the issue was important. By staying untested, I was able to identify with the HIV-infected community. It was easier for me to imagine that I too might be HIV-infected, that I too might suffer discrimination, that I too might need HIV-related services. Part of my motivation in working at the AIDS hot line in Massachusetts was to be part of the services for people with HIV, so that one day if I needed such services, they would be in place. Staying untested felt for me like a way of linking myself to a besieged community. As long as I did not know that I was HIV-negative, then there was a way in which I was "like" people with HIV or AIDS.
Before HIV testing, the absence of differentiation by HIV status created a kind of unity in the gay community: we were all threatened by HIV equally. The "universal precautions" approach to safer sex developed at this time supported this unity. The same rules applied to everyone. There were no differences in the actions that the uninfected and the infected should take. This unity was threatened when HIV testing became available.
HIV testing appeared to have the power to divide gay men into two camps: the HIV-positive and the HIV-negative. That there might be adverse social or sexual consequences to learning about HIV status raised the ugly issue of whether a kind of "AIDS apartheid" might develop in the gay community.
By not getting tested, gay men were able to maintain the fiction that there were essentially no differences between HIV-positive and HIV-negative gay men that needed to be addressed. If no one knew his HIV status, then everyone would have to behave in the same way, and no apartheid could be established. It was a way of securing cohesion in a community threatened by division.
This reluctance to acknowledge division or difference within the gay community was politically motivated in part. Community cohesion has often been important to gay men because of our socialization as members of an oppressed minority. Already under attack by the mainstream culture for being different because of our sexual orientation, we did not want to splinter ourselves further into factions based on differences in HIV status. For if we did, we reasoned, what could we accomplish? How could we develop and maintain a cohesive community identity?
The need for community cohesion was especially apparent to gay men in the face of the epidemic, because we recognized that governmental indifference and neglect were forcing us to create and sustain most of the AIDS care and prevention efforts in our communities. Gay men were caring for each other, whether we were infected or uninfected. We were all in it together. In addition, as a community, we wanted to remind people that all of us were at risk, and that cordoning off some people because of HIV status was wrong. If HIV status became a source of division within our own community, we would be enacting precisely what we feared from outside our community: the shunning of some people by others based solely on HIV status.
It is precisely the desire for unity within the gay community, the desire to maintain an undifferentiated community, that early in the epidemic inhibited gay men from getting tested. Later, this same desire for unity made it difficult for gay men who were HIV-negative to admit that they had unique mental-health needs that needed to be addressed if they were to survive the epidemic. We still do not always want to admit difference.
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Conclusion · Appendix A B C · Notes · Contributors