HIV-Negative: How the Uninfected Are Affected by AIDS
Copyright © 1995 by William I. Johnston
New York: Insight Books-Plenum Press
"I didn't know what caused it. There was a time when I thought just being gay would be enough," said Tucker, a 31-year-old receptionist, when I asked him about the early years of the AIDS epidemic. "I knew it was happening in gay men. Could it have been excessive masturbation? There goes my hobby."
Tucker told me that his early religious upbringing had been Catholic. "Then my parents became Fundamentalist," he said. "They went through everything they could find, from Bible-thumping Baptist to Tammy Faye and Christian Cosmetics. So I had all sorts of imaginable guilt. The mentality of the southern ministers on television -- that AIDS is some sort of retribution for being gay -- is prevalent throughout a good deal of the country. When I first started hearing about AIDS, something in the back of my mind said, 'Jesus Christ. What if they're right?' I was 21. I have never really known sexual life without the grim reaper standing next to the bed."
It was not only religious Fundamentalists who equated being gay with getting AIDS in the early years of the epidemic. Tucker recalled the reaction of a former sweetheart when he told her he was gay: "She cried and said she had always loved me and had always wanted me to be the one to share her life. She was a nurse. She said, 'I will love you anyway, even if I can only touch you with rubber gloves.'"
Tucker's recollections reminded me of an episode from my college years. Sitting on the dock of the crew boathouse at school in 1983, I overheard one rower ask another, "Do you know what G-A-Y stands for?" The answer was, "Got AIDS Yet?" I sat silently on the dock with heat rising in my face, ashamed that I was not out of the closet enough to confront them. I was hurt and confused. Did people really think that being gay meant you were destined to get AIDS? Did I think that too?
I knew homosexuality had been associated with illness, contagion, contamination, and death for centuries. Gay men, for example, were believed to "recruit" or "corrupt" others by having sex with them, as if homosexuality itself were a kind of sexually transmitted disease. The fact that gay male relationships were not biologically procreative linked them metaphorically with death, and religious scriptures were interpreted as invoking death penalties against gay men. The arrival of a plague that appeared to selectively strike gay men reinforced these old models of viewing homosexuality. Despite my growing awareness of the prejudices implicit in these models, I found it hard to banish them from my thinking, and they poisoned my estimation of myself as a young gay man.
It's not surprising that the equation of being gay with getting AIDS was made. In 1981 the available evidence revealed only that many gay men in New York and San Francisco were dying of opportunistic infections because of severely compromised immune systems. We did not know what was causing the epidemic, which for a time was referred to as GRID, an acronym for gay-related immunodeficiency. Later, when similar illnesses were recognized among intravenous drug users and blood transfusion recipients, the name was changed to AIDS -- acquired immunodeficiency syndrome -- to reflect that the immune deficiency was an acquired trait, not a characteristic of some people.
What is surprising is that gay men sometimes continue to equate being gay with getting AIDS. Gay men who test HIV-negative often wonder why they are not infected. For some men this is an expression of simple disbelief that they have escaped infection. But for others it reveals a more complex identification with AIDS, often tied to a lingering dread of being infected or an expectation that becoming infected is inevitable. This is an unfortunate example of how early reactions to an epidemic can persist for years.
It is worth reflecting on gay men's experiences before HIV testing was available, because our responses to the epidemic were shaped in that time when no one knew who might be infected. This chapter explores some of our early experiences with the epidemic and points out how they continue to influence our thinking today. We cannot understand how profoundly HIV testing has affected gay men unless we first recall the position we were in before testing.
Scientists studying the epidemic, which was first reported in the United States in 1981, suspected a transmissible agent might be responsible. It wasn't until 1984 that Robert Gallo and Luc Montagnier identified the agent believed to be responsible for AIDS -- then named HTLV-III or LAV, now referred to as HIV, for human immunodeficiency virus. HIV testing was developed in 1984, but it became widely available only when it was licensed by the United States Food and Drug Administration in 1985. Before then, the only way to learn you were infected was to become sick. All you could do was wait.
In the absence of a test for HIV infection, many gay men began searching for early symptoms of illness. People were being disfigured by Kaposi's sarcoma, a rare form of skin cancer, so we began inspecting our bodies for the slightest sign of lesions, the visible stigmata of AIDS. People were dying from Pneumocystis carinii pneumonia, so we began watching for signs of shortness of breath. Chronic lymphadenopathy was a common early sign of infection, so we began palpating the glands under our jaws. Of course, we found the symptoms we were looking for. The fact that so many of the symptoms were nonspecific did not deter us from diagnosing ourselves and inundating our doctors with our concerns. It was easy to imagine being infected.
Many of the people I interviewed recalled finding what they feared might be HIV-related symptoms in the years before they took an HIV test. When I asked what it was like not to know their HIV status, the men I interviewed commonly responded by submitting a list of symptoms that made life miserable.
"I could not have a cold, only an experience with death," said David, a 35-year-old software writer from San Francisco. "Every infection was another notch on some viral gunslinger's belt, every cough another sign of immunity breaking down. I knew the cold feeling in my spirit every time I bruised or tired, the slightly faster heartbeat when I thought of it, like my body was preparing to fight or flee. Of course, there was nothing wrong with me that I knew of, but that's the key: 'that I knew of.'"
Scott, a 24-year-old graduate student from Newark, Delaware, recalled constantly monitoring his health. "The slightest hint of a cold or flu sent all kinds of fears into me," he said. At the age of 16, he said, "I was always looking in my mouth in a mirror to see if I had thrush, or at my legs to see if I had Kaposi's sarcoma. I once had a small boil on my leg and immediately rushed to the doctor. Then there was the time a pen in my jeans pocket broke, and when I saw the black stain on my skin I was sure I was a goner."
The dread of being the next one to succumb loomed large in the early years of the epidemic, and fear about one's own health was sometimes accompanied by another more excruciating fear: the fear of having infected a lover unknowingly. Lewis, a 44-year-old travel agent, remembered watching a television program in which people with AIDS talked about symptoms. "All of a sudden I realized I had this little spot right here," said Lewis, pointing to his ankle. "It was similar to what they had talked about. I had an absolute freak-out. I was convinced that I had AIDS, because I saw this spot. And not only did I have AIDS but I had infected my lover of seven years. It was devastating."
Lewis immediately got up, turned off the television, and walked out of his house wearing no coat. "It was only five degrees above zero. I was in such a state of shock I did not feel the weather. In a daze, I walked to a park. I just sat under a tree and broke down crying. I was horrified. All of a sudden the AIDS epidemic lived in my home. I was dying and my lover was dying too."
When Lewis went to a doctor a few days later, he learned that the spot on his ankle was a harmless blemish. "I see nothing wrong with you anywhere," his doctor told him. "There is nothing to worry about." Was his doctor right? I think not. Lewis's anxiety about the spot on his ankle revealed not only concern about his own health but a sense of responsibility for the health of his lover as well.
Men who were partners of people with AIDS sometimes developed symptoms, just as the sympathetic strings in an old violin vibrate with the strings the bow touches, even though they remain untouched themselves. Sandro, 23, whose narrative appears in chapter 2, remembered that his lover with AIDS was always itchy, sometimes scratching his skin until it was raw. "On his hands he had little welts," Sandro said, "and he would scratch them so much that they would get bloody. You know what's funny? At the time I was with him, I would scratch myself, too. There was really nothing there, but I would itch. When we broke up, I didn't itch at all anymore. It was only when we were together." This kind of imaginative link to an ill partner is found among spouses of cancer patients who believe they too have cancer, and among husbands who gain weight during wives' pregnancies.
Searching for symptoms was not confined to the years before HIV testing was available. It continues today among people who experience AIDS anxiety. When I worked on an AIDS hot line in Massachusetts between 1987 and 1993, nearly every week I heard callers convinced that they were experiencing symptoms of HIV infection. Even when the possibility of HIV infection was remote, AIDS was so frightening to these callers that they did not discuss their concerns with their health-care providers. Fearful of having acquired HIV and fearful of learning this truth through HIV testing, they preferred to agonize over the telephone with an AIDS hot-line worker.
Hypochondria is nothing new, of course, and HIV provides a useful hook for the hypochondriac. The earliest symptoms of HIV infection are so nonspecific that it is easy for hypochondriacs to invoke them by autosuggestion. Alice, a 40-year-old HIV-test coordinator for the Red Cross in Massachusetts, discussed how anxiety about HIV was related to the symptoms people present when they come in for HIV testing. "Many people seem to have waited several years before making the decision to get tested," she said. "Their anxiety in many cases goes to the point where the stress manifests itself in physical problems, like diarrhea, loss of appetite, chest pains, and rashes. A little digging finds out that these are things people were prone to before. Now the stress is just causing symptoms to come back."
"One problem," Alice added, "is that people look at the list of symptoms, tell themselves they have a symptom -- such as swollen lymph glands -- then palpate their glands so much that they bruise and say, 'Well, now I do have them.' People who are really far gone just make things up."
Even before we learned that AIDS was caused by a virus, gay men invented the practice of "safe sex" -- later renamed "safer sex" -- to deter the epidemic. At first, safer sex was defined as limiting the number of partners you had, and avoiding ejaculation in the body. In Boston, AIDS educators passed out buttons with the slogan "On me, not in me," a message that was interpreted to mean that withdrawal before ejaculation was a safer practice. Later, when epidemiologists found that insertive as well as receptive partners could be susceptible to infection, the use of latex condoms was recommended to protect both partners during intercourse. When HIV was identified in 1984, many gay men had already begun to adopt safer sexual behaviors.
Before HIV testing existed, no one knew who was infected and who was not. In the absence of information about HIV status, it was useful to believe either that you were infected and your sexual partner was not, or that you were not infected but your partner was. If you believed you were infected, safer sex was an ethical responsibility to avoid infecting others. If you believed you were not infected, safer sex was a pragmatic method of avoiding infection. You could justify safer sex either as an altruistic gesture to protect others or as a self-serving device to protect yourself.
Curiously, some people justified safer sex both ways at once. Some men I interviewed mentioned that they simultaneously held beliefs of being both infected and not infected, of being both infectious and capable of becoming infected. "There was a way in which I assumed I was positive and a way in which I assumed I was negative," said Alan, a 31-year-old editor at a university publishing house. "I tried to look at each day as if I were positive and it was my last healthy day, and to look at the future as if I were negative and I was going to be there forever. I was trying to get the best of both worlds: Live today like it's the last good day, but there's going to be a million tomorrows anyway."
Early efforts at preventive AIDS education encouraged people to practice safer sex "with every partner, every time," stressing that it was impossible to know just by looking whether someone was infected. These guidelines were analogous to the universal precautions adopted in health-care settings, which required health workers to assume that every incoming patient might be infectious, and to take precautions accordingly. Conveniently, the behavior to adopt whether you believed you were infected or not was the same: using a condom during intercourse protected an uninfected partner, whether insertive or receptive.
Rudy, a 47-year-old teacher, described this universal approach to sexual encounters. "Everybody that you have sex with, you have to have in mind that they are infected and treat it that way," Rudy said. "When you don't know for sure, you treat everybody as if they have it. And you do what you would do with somebody if they were infected."
The "universal precautions" approach to safer sex helps explain why many gay men found it ethically acceptable to avoid HIV testing when it first became available: you did not have to get tested if you practiced safer sex. It was ethical not to learn your status as long as you behaved as if you or your sexual partner were infected.
Given the stigma attached to AIDS, the assumption of being infected led to unwelcome feelings about being "tainted" by HIV. When it became evident that HIV was infectious, many gay men created new attitudes toward their own bodies and the fluids coursing through them, because of the risk they might pose to others.
The mystery surrounding the infectiousness of HIV led some men I spoke with to worry about whether they might be putting loved ones at risk. "I remember having irrational worries about being around my very young nieces and nephews," said Edward, a 39-year-old faculty development specialist at a music college. "I knew my worries were irrational, because I knew it was difficult to catch AIDS. Now they seem silly, but that was an issue for me. Not that I would breathe anything, or that I would cut myself. I don't know what. I feared that somehow or other these children -- who I had very strong feelings for -- would become ill as the result of their gay uncle spending time with them. I felt a little dangerous around them, and I was careful around them."
Although saliva is not generally considered an infectious fluid with respect to HIV, uncertainty about its infectiousness in the early years of the epidemic led some men to worry about whether kissing might transmit HIV. Sam, 30, whose narrative appears in chapter 10, told me that his worries intensified when someone he had sex with in 1983 was diagnosed with AIDS in 1984. "When my friend became sick, I didn't want to kiss anyone, family members or partners. I didn't kiss anybody because I was convinced that I was infected and I was going to pass it on to someone and that I shouldn't do that. When I would visit home, I would kiss people on the forehead."
Quite early in the epidemic, scientists hypothesized that HIV was transmitted by blood, because the pattern of infection was similar to that of hepatitis, and because cases were found among intravenous drug users. That HIV can be present in and transmitted through blood evokes an enormous number of cultural resonances. Blood has been revered as a life-giving force and yet feared as a taboo substance. The idea that their blood might be "bad" because of the possible presence of HIV had a powerful psychological influence on gay men. Many people already viewed homosexuality as evidence of sickness; now there was a physical correlate to this view.
One of the few helpful things that gay men could do to limit the epidemic before HIV testing was available was to refrain from donating blood. Preserving the safety of the national blood supply was an important priority. Even before HIV testing, members of what were called "risk groups" -- gay men, hemophiliacs, Haitians, intravenous drug users, and blood transfusion recipients -- were asked to voluntarily remove themselves from the donor pool. Membership in one of these stigmatized groups was seen as evidence that you were more likely to be infected.
I remember the impact that the new regulations about donating blood had on me. Donating blood was something I had viewed as an act of generous altruism. Suddenly altruism was defined in opposite terms, in terms of withholding rather than giving. As a gay man, I was being asked to help others by not donating my blood. Guidelines about blood collection do not permit any man who has "had sex with" another man since 1977 to donate blood, regardless of the kind of sexual behavior and regardless of his HIV test results. I obliged, and I continue to refrain from donating blood, even though I have tested HIV-negative. By following the recommendation not to donate, have I in some ways acquiesced in a definition of myself as "tainted"?
Through the regulations surrounding blood donation, the concept of "risk groups" became officially institutionalized. Later campaigns that emphasized that "it's not who you are, it's what you do" that puts you at risk for HIV infection have done something to discredit the reactionary concept of "risk groups." And yet blood-collection regulations continue to encourage the uninfected to imagine they are infected, equating gay sex of any kind with the risk of HIV infection. Even if this is done with the goal of keeping the blood supply as free of HIV as possible, it reinforces the equation of being gay with getting AIDS.
What is it like to imagine that your blood is HIV-infected? It is to wonder every time you floss your teeth if kissing a loved one could lead to his death, or your own. It is to wonder every time you nick yourself shaving if HIV is there on your chin. It is to wonder when you have hemorrhoids if you should let someone come near your ass. Even if you assume you are not HIV-infected, the sting of bleeding is made sharper by ruminations about HIV, because bleeding makes you more vulnerable to infection. Blood is supposed to sustain life, not be the initiator of death.
Semen also has life-affirming connotations that are at odds with the presence of HIV. When I was a teenager, I looked at my own semen through a toy microscope and was amazed to actually see spermatozoa swimming around, the seeds of life. Now when I look at a pool of semen in my hand, I sometimes wonder, "Does it contain HIV?" If I repeated my childhood experiment, I would not be able to tell. HIV is too small.
For many gay men, semen is important. Ejaculating semen into a partner's body and taking a partner's semen into one's own body are an important part of sex. In heterosexual couples, semen represents the possibility of generating a new life. In gay male couples, even though conception is not an issue, semen has important life-affirming characteristics. That semen has become entwined with death is deeply troublesome for gay men. Psychologically, the affiliation of HIV with semen is even more problematic than its affiliation with blood, because whereas the appearance of blood is associated with injury and pain, the appearance of semen is associated with ecstasy and pleasure.
"I am pissed I have to do it," said Blake, a 33-year-old library clerk from Portland, Oregon, referring to safer sex. "Sex is a pretty intimate thing to me. I feel that it is a sharing, and I feel that body fluids are part of that sharing. Physically a person does become part of you; you become 'one.'" Jeremy, a 27-year-old graduate student from Lexington, Kentucky, said, "When I've been in a long-term relationship, I begin to care for a person and in some way want to exchange fluids as an almost spiritual need to share part of that person. Sounds sort of weird, but I know of two other men who have said the same thing."
It saddens me that Jeremy describes his desire to exchange fluids as "weird." Because our culture does not approve of homosexuality, the celebration of semen exchange is not something widely supported. And now that HIV is with us, that celebration is muted even among gay men. Jeremy's language reveals that what gay men used to consider "ordinary sex" is now problematic as a result of having to consider semen dangerous.
We have yet to fully appreciate the complex psychological damage that occurs in people who believe they are HIV-infected, who imagine that their body fluids are dangerous when they may not be. Even though such beliefs may have helped encourage the development and practice of safer sex in the early years of the epidemic, it has been at great cost to gay men's attitudes toward their bodies and their sexual behavior in general.
Unfortunately, beliefs about being infectious continue to influence our attitudes toward sexual behaviors and our definitions of safer sex even after we find out we are not infectious. These attitudes, which developed very early in the epidemic, restrict us from adapting our early definitions of safer sex to take into account knowledge of HIV status.
The invention of safer sex before HIV testing involved a simultaneous invention of unsafe sex, the categorization of certain behaviors as being "high risk." The earliest risk-reduction campaigns used our limited early knowledge about the mechanisms of HIV transmission, largely based on case histories, to place sexual behaviors along a rough spectrum of "riskiness," labeling anal sex "high risk," oral sex "possibly risky," and masturbation "low risk" based on the unspoken assumption that the two people involved in sex were of different HIV status.
The drawback of this kind of risk analysis was that gay men began to identify their body fluids as dangerous, and to define certain sexual behaviors, such as anal sex or oral sex, as unsafe in and of themselves, without regard to whether one of the people involved had HIV and the other did not. In the early years of the epidemic, before HIV testing was available, this kind of risk analysis was unavoidable and prudent, since it was impossible to know if someone was infected with HIV. Now that HIV testing is available, however, such risk analysis is somewhat outmoded. Gay men nowadays do take their own and their partner's HIV status into consideration -- even though it is difficult to know whether someone is truly uninfected -- when deciding what kinds of sex to engage in.
But the categorization of certain sexual behaviors as "risky" persists even after people have begun to learn about HIV status. Gay men in the United States persist in calling anal sex without a condom "unsafe" without regard to whether one of the people involved has HIV and the other does not. It is common for gay men now to say that anal sex is "unsafe" even when practiced by two HIV-negative people. Does this merely reiterate our mainstream culture's proscription of same-sex behavior, under the guise of public health? Or is it perhaps evidence of the durability of our early definition of safer sex, developed before HIV testing, which was predicated on a belief that every sexual encounter was potentially between two people of different HIV status and therefore a site of possible new infection?
Although it is tempting to think of the time "before the test" as something that ended when HIV testing became available in 1985, the truth is that those who have never been tested are in a sense standing "before the test" even now. And those of us who have tested HIV-negative sometimes find ourselves standing "before the test" as well. We may find ourselves uncertain about our HIV status, wondering if we can be confident about it, especially if we have had sex that puts that status into question. This is not the case for those who learn they are HIV-positive.
Wondering about HIV status, then, can be a recurring concern for those of us who test HIV-negative. Because becoming infected with HIV remains a possibility, it is easy to find ourselves returning to a position we thought we had left behind, vulnerable once again to the search for symptoms, the simultaneous belief that we are infected and uninfected, and a reconsideration of how to define safer and unsafe sex. HIV testing has not entirely done away with the psychological and social issues we experienced before its existence.
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Conclusion · Appendix A B C · Notes · Contributors