HIV-Negative: How the Uninfected Are Affected by AIDS
Copyright © 1995 by William I. Johnston
New York: Insight Books-Plenum Press
"Shit," thought Stuart, a 37-year-old software engineer, when he found out he was HIV-negative. "I've got to go to work tomorrow after all."
Gay men spend a lot of time and energy during the HIV testing process anticipating a positive test result. When considering testing and during pretest counseling, they commonly imagine how their lives might change if they learn they are HIV-positive. Test counselors often ask potential testers, "How will learning you are HIV-positive affect your mental health? How will it affect your sexual behavior? Who will you tell? What reactions do you anticipate?" These hypothetical questions help testers assess whether they are ready to learn they are HIV-positive.
Test counselors might just as well ask these questions about testing HIV-negative, yet few do. In fact, gay men spend much less time and energy during the testing process anticipating a negative result and considering its significance. Perhaps this is because they tacitly assume that being HIV-negative is desirable and that learning about being uninfected is a good thing. Gay men frequently assume they will be relieved and happy when they hear they are uninfected. They expect that testing negative will somehow resolve all their issues, will magically "take care of AIDS."
Yet this is not the case. The individual who tests HIV-negative, although "reprieved" for a time, must continue to live in a world where the threat of HIV infection continues to exist, and where more gay men become infected each day. The individual who is HIV-negative still must contend with the fear of becoming infected and cope with the illness and deaths of others. Yet the belief that a negative test result will somehow magically "fix" everything is common. Perhaps the distress and uncertainty of not knowing about HIV status leads us to assume that testing negative will take care of things.
Few people consider in advance the complicated emotional reactions that sometimes follow a negative test result. Some of these reactions are expressed immediately during the posttest counseling session. These include relief, elation, feeling lucky, disbelief, and doubt. Other reactions may follow later, surfacing days, weeks, or even months after a negative result. These include survivor's guilt, reluctance to disclose negative results, isolation, disappointment, despair, depression, and -- not least important -- acceptance.
I hope this chapter helps gay men who test HIV-negative see that they are not alone when they have complex emotional reactions to a negative result. I hope too that it will encourage HIV-test counselors to look carefully at the messages they convey. Do counselors unconsciously suggest that a positive test result is more "important" than a negative test result -- that being infected is better than being uninfected -- when they spend most of the counseling session discussing the consequences of a positive test result? If counselors do not wish to give this impression, perhaps they should not focus exclusively on preparing their clients for positive test results.
Relief is understandably the most common immediate reaction to testing HIV-negative. "I breathed a sigh of relief," said Derek, a 25-year-old graduate student from Muncie, Indiana, about his negative test result. "For once I was glad I failed a test," Derek added, referring to the irony that a negative result was a positive outcome.
What is a negative test result a "relief" from? It can be relief from the anxiety of not knowing whether you have a life-threatening illness. It can be relief from the stigma of being HIV-positive in our society. It can be relief from concern about whether your past sexual encounters infected you or your partners with HIV.
These various anxieties and concerns are sometimes so repressed from conscious thought that relief is expressed by bursting into tears. This unmediated emotional response is one way of expressing the degree to which anxieties and concerns have been pent up. Joshua, a 52-year-old hospital worker, recalled, "I just cried for about an hour. It was such relief. I don't think I have ever known that kind of relief. And then I realized how scared I had been."
Edward, 39, who in chapter 3 discussed being afraid his nieces and nephews might become ill from spending time around him, told me this:
I remember feeling an enormous sense of relief when my test came back negative, like a huge weight had been lifted off my shoulders. I didn't know what to do with those feelings, because I didn't realize where that weight was coming from. I had never really known I was carrying it around to that degree.
Men frequently used this metaphor of a burden suddenly being lifted from their shoulders to describe their relief, expressing the degree to which anxieties and pressures were bearing down on them.
Relief is sometimes followed by a kind of elation. Todd, 26, the composer who fainted during his HIV test, described the concert he performed the day he learned of his negative test result:
I was absolutely euphoric when I found out I was negative. I had a concert that evening and I played blithely. It really was like I was celebrating something: I was celebrating life. I felt I had a second chance. I speak like someone who had had a great deal of unsafe sex. Now that I think back, it seems terribly irrational, because I hadn't really done anything very risky.
Elation upon learning about being HIV-negative can have drawbacks, however. When I learned I was HIV-negative in 1989, I sailed out of the testing site, elated at my good fortune in having escaped HIV. I walked right past an AIDS hot line coworker in the waiting area -- with whom I had worked weekly for three years. He had gone for HIV testing the same day I had, without telling me, and had returned to get his result the same day I did. I did not see him or hear him call out my name. I wish my elation hadn't preoccupied me, because if I had heard him, I could have been nearby when he learned his test result. Instead, I walked on. He found out he was HIV-positive that day. He didn't tell me until six months later.
Another drawback of elation in response to a negative test result was mentioned to me by a couple of the men I interviewed. They reported going out and having unsafe sex after they learned they were HIV-negative. Perhaps the test result gave them a kind of permission to do this because it removed the fear that they might infect someone. Or perhaps this behavior reflects a more complex psychological discomfort about being HIV-negative, a kind of unwillingness to be a survivor. Then again it may simply have been a way to express elation and "celebrate" some good news. The irony is that this variety of celebration might have undermined the very HIV-negative status being celebrated.
HIV-negative gay men who had unprotected sex before the concept of "safe sex" arose often wonder why they were "lucky" enough to avoid HIV when their friends were not. This "feeling lucky" is common among men with high-risk pasts, who wonder at the capriciousness of fate that left them uninfected.
One of the tasks that survivors of traumatic events frequently undertake is to explain why they have survived. In trying to explain why they remained uninfected while peers with similar sexual histories became infected, some gay men toy with the idea that there is something unique about their immune systems that makes them less likely to become infected. Some men feel "charmed" when they get a negative result, believing it is a sign that they cannot become infected. I suspect, however, that most gay men recognize they are not invulnerable to HIV just because they have tested negative.
Others have tried to read a larger meaning into their good fortune. Jimmy, a 47-year-old psychology doctoral student from Kentucky, said testing negative had influenced his decision to change careers: "I do not believe in coincidences. I took it as a sign that I was meant to do something with my life. I chose AIDS-related work when I changed careers, and some part of that process has been my own negative status. I feel a responsibility to those who have not been so lucky. Luck had everything to do with my being negative. It is up to us, the healthy, to care for those who were not so fortunate. There, but for luck and perhaps a little education, go we."
The British writer Simon Watney, noting that luck played a large role in who became infected and who did not in the early years of the epidemic, argues in an essay about AIDS and gay identity that the uninfected have a responsibility to their infected peers.
...I believe that the single, central factor of greatest significance for all gay men should be the recognition that the current HIV-antibody status of everyone who had unprotected sex in the long years before the virus was discovered is a matter of sheer coincidence.... Every gay man who had the good fortune to remain uninfected in the decade or so before the emergence of safer sex should meditate most profoundly on the whim of fate that spared him, but not others. This is why HIV disease is, and will always remain, an issue for all gay men, regardless of our known or perceived antibody status. Those of us who chance to be sero-negative have an absolute and unconditional responsibility for the welfare of sero-positive gay men.
Watney makes this statement to argue that the uninfected must not judge themselves superior to the infected nor dismiss AIDS as an issue of concern only to the infected. His assertion that being HIV-negative was a matter of luck for many gay men is undeniable. But his claim that all HIV-negative gay men have an unconditional responsibility for the welfare of HIV-positive gay men -- though morally compelling -- does not follow logically. To me, Watney's sweeping conclusion sounds like a variation on the theme of "survivor's responsibility" described by Jimmy above. Must we atone for being HIV-negative by committing ourselves unsparingly to AIDS work and the welfare of the infected as a way of recognizing that our being uninfected is an unearned privilege?
I agree with Watney that some HIV-positive and HIV-negative men are not responsible for their HIV status, largely because of the caprice of fate. Certainly it is important to recognize the degree to which chance is responsible for HIV negativity. But we must not discount the ways in which gay men have consciously reduced their risks when they learned how to do so.
In the passage quoted above, Watney does not address those gay men who grew up and became sexually active in the age of AIDS. For them, being HIV-negative is not simply the result of luck but is often the result of deliberate decisions to stay uninfected by careful behavior. When these younger men voice "luck" as the reason they are uninfected -- and they often do -- are they not discounting their own activities, dismissing their own safer behavior, even though such behavior might well have saved them from HIV infection? If gay men believe the principal reason they have survived is that they are "lucky," might they also believe that one day their "luck" will run out? Attributing survival to "fate" -- although attractive to older men seeking to explain their HIV negativity -- has some drawbacks. Might it discourage some people from practicing safer sex? Could it lead them to imagine they have no agency in staying uninfected?
Another common reaction to a negative test is disbelief. Some men honestly cannot believe that their negative result is correct. This is especially true of partners of HIV-positive men. They may express surprise or confusion at a negative result because they anticipated a positive result. Sandro, 23, whose narrative appears in chapter 2, expressed his disbelief by returning to the testing site to look at the paper on which his result was recorded. When he told me this, I remembered getting my own test result. Even though I had not to my knowledge had an HIV-positive sexual partner before I got tested, I too needed to see the result myself, as if viewing it printed on a piece of paper would somehow convince me of its accuracy.
Some men are doubtful about their test results for good reasons. They may have had very risky experiences in the past and be completely surprised at their negative results. Or they may have gotten tested too soon after an exposure to HIV to be certain about interpreting the result.
Other men express doubt about their test results even when there is little reason to. They may ask to be tested repeatedly before they can accept the results. Even then, they may insist that there is some error in their test results, or they may conclude that they do not create antibodies in response to HIV infection and so reconcile their belief about being infected with their negative results to the tests currently in use. Claude, 34, whose narrative appears in chapter 8, provides an example of this doubt. Unable to shake the conviction that he was infected, he wondered if he would "become positive" in his sleep.
For some people, expressing doubt about their test results is not related to an irrational conviction about being infected; rather, it is a way of ascertaining how to behave in the future. I frequently got calls on the AIDS hot line in Massachusetts from people who had recently tested negative wondering if they could trust their results. They sometimes expressed this by asking, "How accurate is the test?" Usually this was because they wanted to know if they could "throw away the condoms" and have sex without the fear of infecting a partner. Because I am not prescient, I was unable to assure HIV-negative callers that their test results were an indication of their actual HIV status at that moment. This often left callers frustrated and disappointed.
For HIV-negative gay men in particular, disbelief or doubt about negative test results may be an expression of the difficulty they have in accepting that they have been spared when so many of their peers were not. By maintaining that they have not really "escaped" HIV, gay men who disbelieve their HIV-test results are able to cement a link between themselves and the HIV-positive, returning to what I described in chapter 5 as the sometimes more comfortable position of being undifferentiated from HIV-positive peers.
Among those who believe their test results, relief and elation at getting a negative test result are often quickly curbed by a sobering realization that the result might have "gone the other way." Many men told me that they did not immediately tell others about their negative test result. In the face of the immense suffering and loss caused by AIDS, celebrating one's HIV-negative status is seen as crass. I believe this is a manifestation of a kind of survivor's guilt.
The term "survivor's guilt" was first used in the literature about survivors of the Nazi Holocaust, and it was later applied to veterans who returned from Vietnam. Nowadays the term is used in a wide variety of situations to recognize that anyone who has lived through trauma is likely to grapple with existential questions about having survived: "Why me? Why was I spared?" Similar questions confront many HIV-negative gay men: "Why was I spared from HIV when so many of my friends were not? Why should I be uninfected when I exposed myself to the same risks that infected others? Do I deserve to be uninfected?"
Like Holocaust survivors or Vietnam veterans, HIV-negative gay men sometimes have difficulty coming to terms with having survived. Often they attempt to explain why they have survived, attributing their survival to simple luck or natural immunity to HIV. Still others, troubled at having survived, take on an unrelenting commitment to AIDS work as a way of atoning for their survival, or of punishing themselves for having survived. Finally, many men seek to tell stories about the epidemic's impact on their lives as a way of "witnessing the epidemic." I suspect that one of the principal reasons men were eager to be interviewed for this book was that it offered them an opportunity for this kind of "sense-making" about surviving.
When gay men wonder if they "deserve" to be uninfected, I believe they are expressing ambivalence not only about surviving, but about being gay. Some gay men feel unworthy of surviving because they believe their past sexual behavior deserves punishment. During the Holocaust, Jews naturally wondered why they were being persecuted unjustly, and some of them could not help feeling that there must be some reason for the persecution. Gay men too sometimes internalize society's persecution of them and imagine that they must somehow "deserve" HIV. In this way, sexual guilt and internalized homophobia are linked to survivor's guilt.
Survivors feel that they must explain why they have escaped persecution or horror, why they have not experienced it fully. Jews who survived the Holocaust sometimes wondered why they were not killed. Was being killed a mark of the true Jew? Are those who survived somehow less than fully Jewish? These questions sound ridiculous, and yet many gay men feel that by being HIV-negative, they are not "truly gay," they have not experienced the complete gay identity.
Damien, a 38-year-old journalist, spoke about the complex identification between gayness and AIDS:
I think people who are HIV-negative feel that we are left out, that our gayness is lessened. The gay community has adopted AIDS, for obvious reasons, as its cause. For the past few years, AIDS has overshadowed every other aspect of the gay community. It seems as though AIDS is such a big thing that if you don't have AIDS, or you don't have a lover that has died of AIDS, you are not part of the dominant factor.
A great danger in identifying with a persecuted minority is that you are tempted to equate yourself with being persecuted, and then to experience shame or guilt if persecution is not carried out to fatal extremes. Could this shame or guilt ever be so great as to encourage someone to become infected with HIV in order to "belong"? In chapter 8, Claude speculated about this; in chapter 18, Frank discusses it explicitly.
Not all the men I interviewed felt guilty about being HIV-negative. Some of those who attributed their HIV negativity to luck told me that they did not feel "guilty" about being HIV-negative because they could not honestly claim responsibility for it. Others did not feel "guilty" that some men were HIV-positive because they did not do anything to cause that to happen. They did not think they had abandoned their HIV-positive peers simply by not being infected. As a result, they did not feel a need to atone for being HIV-negative, or that being HIV-negative was shameful. Finally, some men refused to discuss "survivor's guilt" at all, because the AIDS crisis is not over and they were not sure that they would survive the epidemic.
Discussions about disclosing HIV-test results usually focus on disclosing HIV-positive results. Because being HIV-positive is seen as a stigma, and because it raises the possibility of irrational fear, avoidance, and discrimination, disclosing one's HIV-positive status to family, friends, lovers, and colleagues is fraught with danger. The difficulties in disclosing HIV-negative status are rarely discussed. And yet, surprising as it may seem, many HIV-negative men are reluctant to tell others around them that they are uninfected, as if they are ashamed of being HIV-negative.
This reluctance is based on many factors. In the first place, the act of getting tested for HIV is for many a very private decision. Fearing that the result might be positive, some men get tested without telling anyone because they are afraid that seeking support from friends would mean they would have to announce their results to those friends. When the result comes back negative, it may be difficult to announce because of the lack of preparation.
It is also hard to talk about the fear and anxiety of the testing process with friends and family when the test result comes back negative. Listeners often dismiss the tester's agonizing experience of getting tested, concentrating instead on the test result, especially when the result is "good." They expect the person who has tested negative to be happy and may be perplexed or impatient if he is not.
It is perhaps most awkward to talk about being HIV-negative with HIV-positive friends. Some men are reticent about their negative status because they do not want to appear smug, boastful, or condescending. Underlying this reticence may be a belief that it is insensitive to speak of one's HIV-negative status with those who are HIV-positive. In fact, many HIV-positive men rejoice on hearing of others' negative status because it seems to offer proof that the epidemic will not take all gay men. Other HIV-positive men, occupied with their own issues, find it difficult to muster much enthusiasm about someone having tested negative. It may not seem a compelling topic.
The reluctance to tell others around them that they are uninfected leads to feelings of isolation in many HIV-negative gay men. Aaron, a 46-year-old management consultant, said this:
I would like to know what other people are feeling who are HIV-negative, what other people's experiences are. It's something I don't talk about much with my close friends. Maybe going to a support group would help me feel less isolated. It sounds strange: I am caught in the epicenter of the epidemic and yet I feel isolated.
Some men I interviewed felt they were in a minority because they had tested negative. In reality, the majority of people who get tested in the United States test negative, and the majority of people in the world -- both tested and untested -- are uninfected. So being HIV-negative does not mean being in a statistical minority. Men who talk of isolation are describing instead a kind of psychic minority status that is based on the prominence of AIDS in urban gay communities.
It may be that this psychic minority status is related to the visibility of services and support for HIV-positive people and the lack of services and support for the HIV-negative. In urban centers in the United States with well-developed gay communities, when a gay man learns he is HIV-positive he knows he is not alone. He knows there are support groups, social events, and medical services that he can take advantage of. He knows there are community activists, social workers, and medical professionals who can help him. A kind of culture has developed around being HIV-positive, a culture based on grassroots organizing, advocacy by people with AIDS, and the dedication of health-care providers, clergy, and volunteers. Is there a way in which this culture unwittingly tells uninfected men that in order to be taken care of they need to be infected?
People with AIDS formed the acronym PWA to describe themselves, but -- to put it bluntly -- there is no such thing as a Pw/oA. When a gay man learns he is HIV-negative, there is no culture in place to support him in staying HIV-negative and in coming to terms with being a survivor. Only in a handful of cities in the United States are there support groups for people to discuss the psychological impact of the epidemic. In most cities, even proposing that such support groups be formed is met with accusations that this would funnel scarce resources away from already underfunded services for the HIV-positive. In December 1994, for example, a man who identified himself only as an "HIV victim" disrupted a meeting of the Boston HIV-Negative Support Group and handed out leaflets criticizing two AIDS service organizations for funding the group. The leaflets featured a drawing of a house with rain outside and an open umbrella inside.
Curiously, it is not the HIV-positive who most frequently object to the provision of support services for the HIV-negative, but the HIV-negative themselves. Perhaps because of survivor's guilt, HIV-negative men are often ashamed to admit that they have concerns, fears, or needs regarding the epidemic. An HIV-negative support group leader in San Diego told me, for example, that even in 1994 none of the men in his group had told their friends that they were attending a support group.
I am convinced that this shame among the HIV-negative is one of the reasons that creating support services for HIV-negative gay men has been so difficult. We do not want to prioritize our concerns over those of the HIV-positive, which we deem more important. We are ready to disregard our own mental-health needs in the face of the challenges that HIV infection poses to our friends and lovers who are infected. We justify neglecting ourselves by believing we are unworthy of attention.
Accustomed as we are to viewing being HIV-negative as a good thing, it may be difficult at first to understand why some people are not happy when they receive a negative test result.
One man I spoke with talked about a kind of disappointment, related to his expectations about testing: "I was convinced that I was HIV-positive," he said. "When I got my result back and it was negative, I expected to be euphoric, but there was really no such change in my life. Why don't I feel different because of this gift?" Not only was he "disappointed" by not being positive as he had expected, but he was disappointed that he did not experience a feeling of elation as a result of learning he was not infected.
Walt Odets, a psychotherapist in Berkeley, California, reports this story of a 37-year-old client whose reaction to a negative result perplexed a test counselor:
When I went in, I knew I was positive, and I'd psyched myself up for two weeks about how I was going to deal with it.... But when the nurse gave me the [negative] results, I was really shocked -- I had just not even given this possibility a thought. And for a minute I just didn't react, and then I thought to myself, "Oh my God, what am I going to tell all my positive friends? They're going to be very mad at me.... I have no right to be negative because I've done all the things they did." All of this went through my mind ... and I started crying and the nurse kept saying, "I don't think you understand -- negative is good." She just kept saying that over and over again, and I just kept crying.
Disappointment can be acute in HIV-negative gay men who are in relationships with HIV-positive partners. Peter, a 26-year-old teacher from Toronto, told me that he was "not happy" when he learned he was HIV-negative. He had mixed feelings: he felt guilty for being spared, relieved at not being infected, and apprehensive about what would become of his relationship with an HIV-positive partner. It is common for such men to feel confused by learning they are HIV-negative, and to wonder if difference in HIV status will be a form of distance.
For some men, a negative result means that they are likely to observe more deaths as the epidemic rages on. Having to watch peers die is horrible, and anticipating having to do this for the remainder of one's life can lead to despair. David, 35, a software writer from San Francisco, wrote to me about the despair and depression he experienced shortly after his initial euphoria upon learning he was HIV-negative:
More difficult to explain is the depression that followed, a darkness that has proven, if less dense than my old fears, even more pervasive. A friend explained it as similar to the depression that a survivor of a plane crash experiences, that it is impossible to be in such close proximity to catastrophe and not be a part of it, even if you are left standing once the catastrophe passes.
The analogy my friend made was not quite correct. My situation is more like that of a person on a plane doomed to crash, with the knowledge that many of those around him will perish but that he will likely survive.
After one of the big jet disasters, I heard that dying in a jet crash is not instantaneous. You have about 45 seconds from the time the plane goes out of control to impact, lots of time to realize what is happening while being thrown around inside the spinning aircraft. In my mind's eye I see the gay community spinning in the 45 seconds of chaos, out of control, the final wreck to happen at some future moment, a tangle of bodies and lives I will likely live to see.
In extreme cases, despair and depression can lead to self-destructive actions. Marshall Forstein, in an essay about suicide and HIV, discusses a case example of a 24-year-old man, Mr. B, who had lost four friends and lovers in a short period of time and was convinced that he was HIV-positive:
After the death of his last friend, Mr. B went to his physician for HIV testing so that he could find out his CD4 count and begin to prepare for his own illness and death. When his test came back negative, he assumed it was wrong and proceeded to be retested several times, always with the same result. Increasingly distraught, Mr. B became convinced that the whole medical system was intent on keeping the truth from him. When he finally allowed for the possibility that he had indeed escaped infection, he became profoundly angry and depressed, as he had had the same risk factors as his dead friends. In the midst of his own grief and despair that he would remain alive, he overdosed on a potentially lethal medication. Waking up in the intensive care unit, he was enraged that he had survived.
Not everyone is as overwhelmed by the news of their negative HIV status as Mr. B was, luckily. No discussion of the reactions to testing negative would be complete without acknowledging that many gay men are able to accept their HIV-negative test results and move on.
Some men easily accept the news about being HIV-negative because they did not have great anxiety before the test. Whether because they had been tested previously or their sexual behavior had not been highly risky, some men told me that a negative test result was often merely a confirmation of what they had suspected. Arthur, a 30-year-old bisexual computer programmer from Evanston, Illinois, said, "It was what I had hoped for but wasn't sure of. I was saying to myself, rationally, 'That's about what I expected,' at the same time as I was saying to myself, emotionally, 'What great news!'"
For others, the acceptance of the test result is a celebration, in a way, that safer-sex precautions really work. Alan, 31, who spoke about shifting attitudes toward HIV testing in chapters 5 and 7, was involved with an HIV-positive man when he went for his first test. "I felt really lucky and happy about my test results," he said. "I felt great. I had put a lot of energy into changing my sex life to prevent transmission either to me or from me, and it was good to know that it hadn't been in vain, especially considering that my partner was positive. It was good to know that what I was doing was working."
For Edward, 39, accepting that he was HIV-negative caused him to make a commitment to protecting himself, a commitment that he felt had not been as strong before he knew his HIV status:
I had always been careful of someone else's risk. I never would put someone else at risk. But in terms of my own risk, particularly in terms of getting fucked, I was more willing to play with that before I got tested. There were times when I had the temptation to throw caution to the wind, going on the assumption that I was already infected and what difference would it make?
Testing negative made me feel more committed to safe sex, to be honest. Safe sex was not something I was doing just because I had to do it. I was doing it out of self-preservation: there was something in it for me.
Austin, 36, who in chapter 5 described not knowing his HIV status as like being a time bomb, told me that when he tested negative he didn't share the disappointment or confusion that he saw among some members of the Boston HIV-Negative Support Group:
Some people in the support group have been tested several times and their reactions were, "Yeah, so, I got my results and I still have no zest for life. I thought this was going to make some change, but there's no thrill in finding out." My perspective is different. My reaction to testing negative was, "Yes! Yes!" I felt like a minority.
I asked Austin what it was that helped him maintain his optimistic attitude. "I realize I have an incredible network of people who support me and things I'm involved in, that keep me motivated," he said. My question was not a new one for him. "People ask me, 'How did you get where you are? How do you maintain it?'" Austin continued, "I had to find a balance. I had to work to find it. It's a journey, always getting there. But it can be done."
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Conclusion · Appendix A B C · Notes · Contributors