HIV-Negative: How the Uninfected Are Affected by AIDS
Copyright 1995 by William I. Johnston
New York: Insight Books-Plenum Press

19

Retesting and Seroconversion

A CAT WITH NINE LIVES

"I see a lot of gay men who are just stuck, stuck, stuck on a testing treadmill," said Vernon, a 45-year-old HIV-test counselor who works in an urban health center. "It's like becoming a cat with nine lives: these guys come in thinking they only have so many negative tests in them, and one day they'll just use them all up."

With these metaphors, Vernon captures several important aspects of what being HIV-negative is like for many gay men. The "testing treadmill" attracts men who doubt the validity of their test results as well as those who are not sure about the risks they are taking in their sexual lives.Beyond this, Vernon suggests, some gay men reveal through repeated testing their conviction that becoming infected is inevitable, that it is only a matter of time before they seroconvert.[1]

Retesting and seroconversion are issues of concern primarily to those who test HIV-negative. Of course, many HIV-positive men are concerned that HIV-negative men not become infected. But testing HIV-positive eliminates the need to test repeatedly or worry about seroconverting. Testing HIV-negative, on the other hand, does not eliminate these concerns; it fuels them.

Testing negative sets men up for the possibility that they might test positive after having tested negative, an event with different psychological and social meaning than testing positive on a first test. Testing negative sets men up to view their HIV status as something they have a responsibility to protect. Thus, seroconversion may be interpreted as a failure of responsibility. Indeed, HIV-negative gay men sometimes see seroconversion as a betrayal not only of their own lives but of the gay community as a social entity. It is no wonder, then, that thoughts of retesting and seroconversion occupy HIV-negative gay men.

SITUATIONAL TESTING

Most of the men I interviewed were not on the "testing treadmill" that Vernon described. Nonetheless, many of them had retested at least once, usually because of concerns about the validity of their first test or about risks they had taken after it.

Ross, 37, who in chapter 11 explained his reactions to learning that his partner, John, was HIV-positive, got tested a second time because his first test had been done too soon to rule out HIV infection. "The second time was more stressful than the first," Ross told me. "The first test was done in reaction to the crisis of John testing positive. When I took the second test, I thought to myself, 'Shit, what if in the time period that wasn't covered by the first test I converted?'"

Ross said he would have been angry if he had "made it through ten years" of the epidemic only to seroconvert in the eleventh. "It's like when I was driving down to New Jersey this weekend: I was speeding all the way down, and about a quarter mile from the exit I nearly got pulled over by the cops." The stress of the second testing experience was so great for Ross that he never went back for the results. It was only through a later test that he was able to confirm he was HIV-negative.

Other men told me they had retested because of specific sexual situations they felt might have jeopardized their HIV-negative status. Robert, 40, whose narrative appears in chapter 4, tested after masturbating with an HIV-positive friend in Provincetown. Frank, 40, whose narrative appears in chapter 18, was considering getting tested after having sex with an HIV-positive partner without a condom. For these men, getting retested was not part of a regular pattern, but a response to incidents they deemed risky.

Other men told me they retested from time to time just to reassure themselves, even when they had taken no great risks since their last negative test. "I always practice safe sex," said Harold, 28, "but once in a while I like to be told that I am okay."

REGULAR TESTING

The need to be told that they are "okay" prompts some men to get tested on a regular basis, every six months or every year. Because there are steps to take to protect your health if you learn you are HIV-positive, some men choose regular testing as part of their routine health care. "There's no excuse for a person to not go at least once a year," said Drew, a 30-year-old customer service representative from Pawtucket, Rhode Island. "It's important to know, to catch it early. People who don't know their status are just not committed to their own health. That's what it comes down to for me anyway. I consider it just like going to the doctor once a year for a checkup: HIV testing is part of my regular routine."

When I asked men who tested every six months what was magical about that figure, some told me that it was related to the "window period," the time it generally takes HIV antibodies to show up after infection. It doesn't make sense to me that regular testing should be associated with the window period. If the purpose of regular testing is to identify HIV infection as soon as possible, then why not test every day? Perhaps the six-month figure is chosen because it is practical. Derek, 25, told me that testing twice a year was convenient: "My boyfriend and I got tested on our first anniversary. After that, since our birthdays are six months apart, we get tested on our birthdays -- twice a year. Not because I don't trust my boyfriend, but because I don't trust the tests. It is reassuring to get a twice-a-year report card."

Gloria, 55, an HIV-test counselor, told me that many gay men test regularly because their sexual behavior leaves them feeling vulnerable. Like needle users in recovery who are surrounded by a culture where HIV is present, Gloria said, HIV-negative gay men experience HIV as an everyday presence in their lives. "If you believe that oral sex is a risk," she offered as an example, "then probably every man who has sex with men is in a window period when he gets tested. Some people are going to be in that window period for their whole sexual lives." It may be this feeling of continual vulnerability that leads some men to get tested regularly.

Gloria told me that HIV-negative gay men with HIV-positive partners are also among those who test regularly. Some couples use a significant anniversary date to do this testing every year. Gloria believes such testing often reveals in HIV-negative partners an emotional need to be attended to, rather than anxiety about HIV infection. "Their emotional risk is far higher than their physical risk," she said. "I encourage people whose partners are HIV-positive to come back if they need to. They have found a place where someone pays attention to them and talks about their needs. I think it's a real service. Some have asked, 'Do you think I'm abusing the system?' I don't think so."

CHRONIC TESTING

"I never feel completely clean," said Blake, 33. "I worry that I am a false negative. I have had six tests so far, and each time I have told myself that this one will probably be the positive one even though I have a real benign sex life." All the HIV-test counselors I spoke with had men like Blake among their clients, "chronic testers" who test repeatedly even when there is apparently little reason to do so. Such chronic testing, they told me, often has little to do with HIV.

Vernon told me that many men who repeatedly seek HIV testing are really dealing with "coming-out" issues that have remained unresolved. "I hear gay men say they're thinking about getting married to cure themselves, or they're totally closeted at work and are afraid to tell their families," Vernon said. "It's not about HIV testing. They're dealing with coming-out issues. If they're feeling bad just about being gay, they're likely to have higher levels of anxiety about HIV transmission, even in the absence of risk. It all flip-flops, one thing on top of another, like pancakes building up." Vernon sees his job as trying to unstack a few of those pancakes.

"AIDS and HIV have become the perfect net for displaced sexual anxiety," Vernon said. "Sex was always anxiety-provoking, frightening, mysterious, and confusing, even before HIV. People are not always able to separate their sexual anxiety from their HIV anxiety. They jumble it all together. I try to separate those things out."

Gloria is aware that some chronic testers use HIV testing as a way of seeking "permission" to continue risky behaviors, instead of changing them to reduce their risk for HIV. "Testers invite us into a sort of collusion," she said. "They think, 'You gave me a negative result and that means I'm okay.' What happens is they abdicate their responsibility." Gloria is careful in her counseling to address this permission seeking, making it clear to her clients that testing negative after risky behavior is not a rational basis for making decisions about future risk taking.

Alice, 40, an HIV-test counselor for the Red Cross, was even more outspoken about people not changing their behavior: "People who are being unsafe and after the fact coming in for testing -- those are interesting individuals to talk to. All they are doing is asking, 'Am I infected yet? Am I infected yet?' In the meantime they are not doing anything to make sure that they aren't infected." Chronic testers sometimes even try to disguise the number of times they have tested, Alice told me. "They do all sorts of things," she added, "like sneaking to a different test site, thinking they're not going to see the same counselor. But since we go from site to site, they are often foiled."

Out of frustration, Alice has asked a couple of clients who test chronically if they want to be infected:

With one particular person I said, "Do you want a positive test result? Is that what you want?" He said no, but I don't think he believed it when he said it. One individual actually said, "Yeah, it would be easier if I were infected." Because everyone else was. He wasn't actively trying to get infected -- it wasn't a death wish -- but he just could not deal with getting a negative result. It was really very, very sad.

Alice suggested that anxiety about HIV sometimes masks other issues, such as guilt over sexual infidelity. "By putting everything on HIV," she said, "people don't have to deal with that guilt. They're afraid to test negative, because if they find out they're negative, then they're going to have to deal with their guilt, and they don't want to do that." Perhaps, then, chronic testing -- in search of a positive result -- is a way some people express a desire to be punished for their sexual behavior.

HELPING CHRONIC TESTERS

Gloria tries to refer chronic testers to other mental health resources available in the agency where she works. "I do it rather gently," she said. "I suggest there is much more going on for them than can be resolved by an HIV-antibody test. I don't close the door on HIV testing, but I always encourage them to rethink."

Gloria told me that some men who get HIV testing are struggling with substance abuse. The counseling session is a place to begin addressing this issue. She gave an example of her approach:

Suppose somebody comes in who has been tested before. I say, "Why are you being tested again? What's going on for you?" And he says, "I was bad." I say, "Does that mean you've had risky sex?" And he says, "Yes. I was really stupid."

That's my clue. I say, "Were you drinking or using drugs when this happened?" And he says, "Yes." That gives me an opening to say, "If you're getting drunk or using drugs and having unprotected intercourse, let's start with the alcohol or drugs, because that could happen again tomorrow or the next day for you." Sometimes they hear it.

Alice admitted that chronic testers are draining. "Individuals who are obsessed with HIV and refuse to get any sort of outside counseling are time consuming, frustrating for my staff, and difficult to draw the line with," she said. "I don't say, 'Don't call us anymore.' But in a way I want to say, 'We're done. We can't help you anymore. You really need to get some other kind of help.'" Alice believes individual counseling may be most appropriate for these testers. She recalled an abortive attempt to form a support group for chronic testers:

Someone I know started a group in Boston for repeat testers who were consumed with the belief that they were infected. The group didn't work, because they all wanted individual attention. They didn't want to be in a group. They didn't want their story to compete with anybody else's, because their story was the most important. The leader told me he had to disband it. Everyone just vied for his attention. They all broke down and said, "I want a private counselor." So he just gave up on it. HIV really wasn't the issue.

When counseling gay men who exhibit great anxiety and yet modest risk for HIV, Vernon tries to get them to look at the many ways they have reduced their risk, rather than focusing on their anxieties. "Men beat themselves over the head because they once didn't use a condom," Vernon said. "I say, 'Hey, give yourself more credit. You've been safe 98 percent of the time.' He's not focusing on that. What does that say about his self-esteem?" Vernon believes that feelings of guilt about not always being "perfectly safe" arise from antigay sentiments in our culture, which have been incorporated into AIDS education:

I think what is going on in the heads of some men I talk to is internalized homophobia. I have it too. How could I not? I was raised being made to feel afraid, ashamed, embarrassed, and guilty about the feelings I had for other men. AIDS education for gay men often makes us feel afraid, ashamed, embarrassed, and guilty if we have unsafe sex. It's reinforcing something that does not need reinforcement.

I don't want anybody to get this disease, I really don't. What bothers me is when I see people doing all the right things and still torturing themselves. It tells me what's been done to us gay men from the time we were boys. Internalized homophobia hasn't resolved itself in adulthood, and AIDS has made it worse. Working against that is a monumental task.

The desire to be 100 percent safe is often expressed by chronic testers, yet Vernon must point out to some men that their behavior contradicts this. "If a man is terrified he has HIV infection from having precum in his mouth," said Vernon, "but not terrified enough to use a condom for oral sex, I point out that inconsistency." Vernon encourages men to either change their behavior or recognize that some level of risk is acceptable:

I say, "You can't have it both ways. You can't keep testing, afraid that you've gotten infected through precum in your mouth, but not afraid enough to use a condom for oral sex. Either try to make the change or live with this as your own acceptable risk." People want certainty, but there is none. If you want to be 100 percent safe, be celibate. But you can minimize your risks, and you can minimize them dramatically.

Vernon hopes that men who are not engaging in high-risk behaviors will be able to trust their test results and trust what they are doing to maintain their HIV status. "Sometimes it actually happens," he told me. "Last week, a guy said, 'I'm not going to do this. I've done this seven times.' Another guy who had tested repeatedly said, without my prompting him, 'I thought I was coping with the epidemic by doing all this testing. Now I realize I was hiding behind the testing.'"

THE DESIRE TO SEROCONVERT

Although I suspect that most HIV-negative gay men hope to stay uninfected, there are many forces that work against that hope, and some men actually express the desire to seroconvert. I spoke with Wolf, a 46-year-old writer and AIDS activist, about the many reasons supporting the desire to seroconvert.

"I'm here watching friends around me being carted away, being chosen to get on the cattle cars and be shipped away," said Wolf. He had watched the film Schindler's List the day before I interviewed him. "I was named after my great-grandfather, who was killed by the Nazis when they invaded Poland. I relate what's happening within the gay community right now to what happened with my ancestors in Poland. I feel a strong connection." Wolf suggested that gay men sometimes feel fatalistic in the face of senseless mass destruction, and this fatalism can lead men to want to seroconvert:

Some HIV-negative partners of HIV-infected men have told me, "I want to experience what my lover is experiencing." Or, if their lover has died, "I want to join my lover. It's lonely here without him. I'm going to get infected." I've heard that. Another thing is being fatalistic about survival: "I'm going to get it anyway. I might as well enjoy sex. I'm going to live my life as if HIV didn't influence me."

Wolf believes that repeated loss has taken its toll on gay men, especially AIDS activists. "People are becoming numb to the losses, to the deaths, to the sickness," he said. "A lot of us are walking zombies, dealing with this for so long, not seeing an end. The hope we had in the late eighties is dashed right now, and we don't see the light at the end of the tunnel." The immensity of these losses leaves some activists unable to grieve, damaging both their activism and their health. "Some people need to be in therapy to deal with underlying grief issues or they can't be effective activists," Wolf said. "Instead, they use activism as a way of not dealing with grief. And if you don't grieve, you don't grow. If you don't grieve, then feelings of fatalism, loss, and depression are going to be with you, putting you at greater risk -- consciously or unconsciously -- for infection."

For younger gay men, a different kind of despair may lead to seroconversion, a despair born from growing up in a society that devalues gay youth. "I hear in AIDS prevention circles the term 'passive suicide,'" said Wolf. "It refers to young people growing up in a homophobic, hateful society -- especially young people living at home who have no support in their high schools and colleges -- putting themselves at risk for AIDS as a way to passively kill themselves. They don't want to stick a gun in their mouth and pull the trigger. But because they grew up in a society which taught them to hide and to hate themselves, they are needlessly putting themselves at risk."

Another reason gay men may desire to seroconvert is that being HIV-positive appears fundamentally linked to gay identity. "Some people feel they are not 'gay enough' unless they are infected," said Wolf. "They feel that they are not heard or acknowledged if they're HIV-negative, that they are taken more seriously if they are infected -- especially if they are involved in AIDS activism or the AIDS service industry." Wolf wondered whether some seroconversions could be the result of HIV-negative men seeking the attention they think HIV-positive men get. He offered an analogy from his past work:

I taught disabled children for seven years. I saw parents who gave all their attention to their disabled child at the expense of their children who didn't have disabilities. The children without disabilities resented it. A lot of them acted out for attention. Some ran away as a plea for attention. One child feigned a limp in order to get attention from her mother. Maybe people are putting themselves at risk as a call for help, a call for attention, a call for acknowledgment.

That some gay men might take risks, or even seroconvert, as a call for attention reflects poorly on the gay community's ability to support all its members. We will suffer more losses if we cannot find ways to attend to the HIV-negative as well as the HIV-positive. We must find ways to assert that staying uninfected is valuable and to help HIV-negative gay men envision a future worth staying uninfected for.

THE RESPONSIBILITY TO STAY UNINFECTED

"It's the duty and responsibility of every uninfected gay man not to get AIDS," said Damien, 38. "If gay men keep going on, it shows people that we aren't doomed to die of AIDS, and that is very important." When I asked HIV-negative men what they imagined they would feel if they seroconverted, some told me they would feel they had betrayed themselves. Many more told me they would feel they had betrayed the gay community. They viewed staying uninfected not only as a personal responsibility but as a communal one.

I found this idea explicitly voiced in a 1989 AIDS brochure, which used the language of gay liberation to imply that the choice between sexual safety and danger is also a choice between community survival and suicide:

The modern gay movement has certainly not fought for sexual liberty in the past two decades in order that gays might use that liberty to commit a collective suicide.... Choosing safer sex is thus not only a question of individual survival, but for gay men also a question of the collective survival of the gay community and its accomplishments....

In the era of the menace of AIDS, to "play riskily" -- to refuse to take care of oneself and others -- is a new form of gay self-oppression. Its destructive character includes the unexpressed message that gay men don't deserve a future, and that the struggles of the forces of gay liberation in the past two decades aren't worth preserving, defending, and enjoying.[2]

More recently, psychotherapist Thomas Moon developed this theme in several San Francisco Sentinel articles about gay men's psychology and health."Clearly," Moon wrote in 1991, "the continued survival of the gay male community depends, in part, on as many of us as possible achieving an unambivalent commitment to survival." He added:

HIV-negative men face many challenges -- the challenge of avoiding unsafe sex, of enduring multiple loss, of supporting friends in their struggle against the disease, of struggling to keep the community alive, and of somehow living a quality life in the midst of a disaster. The challenges are daunting. They can be met successfully only by men who are unshakably clear about their commitment to survival.[3]

This theme was again expressed in a 1995 Out magazine article in which Michelangelo Signorile considered the responsibilities he would face upon getting retested after a risky sexual episode. "If I find I am negative," Signorile wrote, "I have a responsibility to keep myself that way, to beat back urges -- no matter what fuels them and no matter how difficult they may be to fight off -- to act in ways that put me at risk."[4]

I support gay men in using whatever motivations they need to remain uninfected, and feelings of social responsibility may serve this purpose for some men. But an emphasis on social responsibility may have drawbacks. Are we implying that if gay men are not sufficiently concerned about their own health then they should at least be concerned about the survival of the gay community? Is this message likely to encourage men to take care of themselves? Or does it merely make men feel ashamed when they have unsafe sex? Norms that support safer sex as a social responsibility may make it easier to practice safer sex, but do they also make it more difficult for gay men to discuss the unsafe sex they are having? Feelings of social responsibility that support rather than undermine gay men's mental and physical health need to be developed.

NIE WIEDER PLAGUE

Feeling continually responsible not only for oneself but also for a community in crisis can be exhausting. Wolf told me he felt he always has to be available to his HIV-positive friends when they need him. He described his commitment and fatigue this way:

I hate coming back to Schindler's List, but I just saw it last night. Schindler had to hold it together until after the war, because if he fell apart all the Jews would die. When the war was declared over, he broke down. At the end, you see him huddled in the snow in a mess. The Jews are coming to comfort him, after he saved them. I think in some ways, some HIV-negative people -- including myself -- feel they have to keep it all together too.

Perhaps HIV-negative gay men -- whose immune systems offer resistance to opportunistic infections -- believe they have no choice but to form a kind of Resistance against AIDS, struggling to ensure that the epidemic not get worse. "Nie wieder Krieg," say Germans who survived World War II, reminding us that wartime atrocities must happen "never again." Likewise, gay men who are uninfected sometimes feel a responsibility to act in ways that say, "Nie wieder plague."

THE LIKELIHOOD OF STAYING UNINFECTED

A 1991 report -- based on Multicenter AIDS Cohort Study data from Baltimore, Chicago, Pittsburgh, and Los Angeles -- estimated rates of seroconversion among gay men and suggested that there is a 30 percent chance that a 20-year-old HIV-negative gay man will seroconvert before age 30, and a 50 percent chance that he will seroconvert before age 55.[5] I am appalled and dismayed by these statistics.

Much as I dislike eliciting feelings of guilt in gay men about seroconverting, I believe it is important to discuss the seroconversion rates that gay men will need to achieve to keep a majority of gay men uninfected.

In my professional life, I edit high-school mathematics textbooks. Calculating the probability of remaining uninfected over time is not difficult if seroconversion rates are known. If the annual rate of seroconversion is r, for example, then the probability of remaining uninfected after one year is (1 - r), and the probability of remaining uninfected after x years is (1 - r)^x. Unfortunately, the compounding effects of exponential functions work against us in this case. Even if the rate of seroconversion is only 2 percent annually, less than half of a group of uninfected 20-year-old gay men will remain uninfected by age 55, because (1 - 0.02)^35is about 0.493.

Suppose seroconversion rates are constant across age groups.[6] The following table shows the age by which half of a group of uninfected 20-year-old gay men will be infected, based on various seroconversion rates.

Seroconversion
rate (%)
Age when half
will be infected
4.037
3.540
3.043
2.548
2.055
1.566
1.089

In order for half of a group of uninfected 20-year-old gay men to remain uninfected up to age 73 -- the life expectancy of an average 20-year-old man in the United States -- we will need an overall annual seroconversion rate of less than 1.3 percent. If we are immodest enough to want more than two thirds of uninfected gay men to stay uninfected up to age 73, then we will need seroconversion rates under 0.76 percent.

How close are we to these rates? It is difficult to know, since a random sample of gay men is hard to establish. But recent studies do not offer an optimistic picture.Preliminary results of studies of men who have anal sex with other men, gathered in 1993 and 1994 for a vaccine-trial feasibility study, indicate annual seroconversion rates of 3.1 percent in San Francisco, and 2.6 percent in Denver and Chicago.[7]

Seroconversion is not inevitable for gay men. But for this to be the case, we need to keep rates of seroconversion extremely low. Otherwise, it will be impossible to keep a majority of gay men uninfected. What rates of seroconversion should we aim for? What rates can we hope to achieve? What rates can we live with? These are questions gay men will have to acknowledge and discuss publicly.

LIVING WITH UNCERTAINTY

Testing HIV-negative leaves gay men with an uncertainty they must find a way to live with: an uncertainty about whether they will become infected. Some men try to handle this uncertainty with repeated HIV testing, even though HIV testing cannot predict the future. Others remove this uncertainty by becoming infected. But seroconversion is certainly not the healthiest way of handling uncertainty about HIV status.

I made a list one day of all the things I would do if I learned that I had seroconverted. Among the items were these: I would exercise more. I would eat better. I would play my violin again. I would finish reading Shakespeare. I would spend more time in Venice.

Looking over the things I had listed, I realized I didn't have to be HIV-positive to do most of them. The last item on my list was this: If I seroconverted I would invite my friends over for a party to celebrate the end of worrying about seroconverting.

Perhaps I can find a better reason to invite my friends over. Maybe we can find other things to celebrate.

Contents · Foreword · Prologue · Introduction
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23
Conclusion · Appendix A B C · Notes · Contributors

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