HIV-Negative: How the Uninfected Are Affected by AIDS
Copyright © 1995 by William I. Johnston
New York: Insight Books-Plenum Press
When I mentioned this book to an HIV-positive friend with an HIV-negative partner, he was curious to know what term I would use to describe the kind of couple he was in. "Ralph and Alice Kramden of The Honeymooners are a discordant couple," he said. "My partner and I are not."
My friend objected to the use of the term "discordant" by social scientists to describe relationships between people of mixed HIV status. He felt the term implies that such couples are incompatible. The related term for relationships between people of identical HIV status -- "concordant" -- suggests that those couples are naturally harmonious. Is there not an ideological bias in these terms, he suggested, one that encourages people to develop same-status relationships and avoid opposite-status ones?
Researchers wishing to avoid these connotations sometimes use the unwieldy terms "serodiscordant" and "seroconcordant" instead, focusing on the fact that disagreement exists in the couple's blood, not in their temperaments. Another term I have heard used to describe couples with mixed HIV status is "magnetic." This reverses the polarity of "discordant," turning the partners' difference in HIV status into an asset, since "magnetic" describes something attractive. Yet this term overstates the case in the other direction, suggesting that such couples are likely to bond naturally, as the positive and negative poles of magnets cling to one another. It also suggests that couples with identical HIV status are unlikely to bond in this way. What term would we use for those couples? Repellent? Repulsive? I shudder at the thought.
I use the term "positive-negative" to describe couples of mixed HIV status, not only because it is neutral, but because it allows me to use the related terms "negative-negative" and "positive-positive" to describe other couples.
If HIV status is capable of dividing gay men in many ways, as I suggested in chapter 11, then positive-negative couples are one of the places where such division is bridged. If we use the term "apartheid" to describe relations between the HIV-positive and the HIV-negative, then this term certainly fails when we apply it to positive-negative couples. They combat such simplistic terminology by their very existence, challenging us to reexamine the relationship between the HIV-positive and HIV-negative in intimate terms.
One of the fears in couples who go for HIV testing is that their results may be different. The shock and surprise that this yields can throw a couple into a precarious position.
Keith, a 40-year-old dividends specialist for an insurance company, spoke to me about getting tested with Mark, his partner of nearly 14 years. Mark was in recovery from drug addiction when he decided he wanted to get tested. "In the first year, your concentration is on being drug-free," said Keith. "When Mark celebrated his first year of being clean, I thought, 'Gee, everything's going good. He's been clean a year.' He decided to get tested, because when he was using drugs he was also promiscuous."
Keith and Mark began to get nervous when they called to learn whether their test results were in:
When I called, I was told that my results were in. Mark called the same day and was told his results weren't in yet, which got him worried. He said, "I'm positive." I said, "They could have done mine as the last test of the day and yours the first test of the next day. Yours may be in tomorrow." His results were in the next day.
When we went in, the counselor said, "Who wants to go first?" I gave him my blue slip with my number and he looked it up and said, "Okay, you're negative." Mark gave him his blue slip, and he looked at me, looked at the result, looked at Mark, and said, "You're positive." Then he left the room. Mark was stunned.
I started crying, immediate tears. I had Mark dead and buried and myself in black. Then the counselor came back. He said, "Let me double-check those numbers. I want to make sure I didn't get them mixed up. It could be the other way around." He did double-check the numbers, but it stayed the same: I was negative and Mark was positive.
Keith was emotionally overcome by the news. "For about two weeks after that, even at the gay pride parade, I would break out in tears at the slightest thing," he said. "I couldn't concentrate at work. The fact that I was negative bothered me a lot because Mark and I were finally at the stage where we thought our relationship was going to work right."
Ross, 37, who in chapter 11 discussed being alienated from his partner, John, because of the difference in their HIV status, told me about the conflicting emotions he felt when he tested negative after John tested positive:
I had mixed feelings about testing negative. I was definitely happy I wasn't positive, but I felt almost disappointed. I expected I was going to be positive, because John had tested positive and I had been sexual with him for six years. I didn't get fucked that much, but I swallowed a lot. I think we assumed that we would both be positive and that we would deal with it together as positive guys. Then it turned out that one of us was positive and one was negative.
I felt bad for John. I felt good for me. I felt anger about John's test. When I met John, I wanted to be in a relationship, and I would have been monogamous. There was an angry part of me thinking, "If you had done that, then you could have avoided this."
Learning about mixed HIV status is not always unwelcome, especially to a partner who knows he is positive. Dudley, a 42-year-old public relations marketer, told me that his lover Michael was relieved when Dudley tested negative. "I think he was relieved he hadn't infected me," Dudley said. Because Michael's former partner had died of AIDS, Michael was also relieved that he could count on Dudley. "He felt good: at least I would be around to take care of him if he needed it," Dudley said. "Michael didn't want somebody to get sick on him again. He wanted to work very hard to keep my status negative."
When Keith learned that his partner, Mark, was infected, he was unsure whom to tell. "I didn't want to come out and tell anybody about it," he said. "Eventually I did start telling my family, because I've always been honest with my brothers and sisters. They know I'm gay. They know that Mark and I are lovers." When Keith told his family, everything went well. Encouraged by this, he was able to tell others. "Little by little I started telling certain friends, and from there it just got easier to tell other people."
Dudley faced the question of telling his young son, Alex, about Michael's illness. Before Michael's diagnosis, Dudley had talked with Alex about AIDS, but only abstractly. They had gone to see the NAMES quilt, and Alex knew that Michael's former partner had died of AIDS. "A couple of years ago, when Alex was in fourth grade, he had to do a science project. He picked HIV and AIDS as his project. We asked, 'Why did you pick this?' He said, 'Because nobody else in my school will, and I know you know all the answers, so I'll be able to do a good job.' So we talked about it then, but it was an abstract discussion. I don't think we told Alex at that time that Michael was positive."
It was not until a few years later, while Alex was at summer camp, that Michael experienced his first AIDS-related hospitalization. "When he became hospitalized," Dudley said, "Michael went from 'being HIV-positive' to 'having AIDS,' because he got pneumocystis pneumonia. We decided to tell Alex on the way home from camp. By then, Michael was out of the hospital. So we did, and Alex was upset and cried. We certainly told him at that time that I was negative. We talked about transmission. We told him we don't do anything that would cause me to become positive." Since then, Alex has not talked much about AIDS, but when I interviewed Dudley, the family had recently been thinking about it again. "A few weeks ago, our church had a healing service dedicated to AIDS," Dudley said, "and Alex and Michael and Michael's family attended. The whole thing was about AIDS, so Alex was sitting there, thinking about it again."
For some negative partners in positive-negative couples, the decision to tell family members is a complicated one. Cathy, a 27-year-old social work graduate student who had done a lot of volunteer work in AIDS service organizations, was unsure how much to tell her family about Louie, her partner with AIDS. "I met Louie in August," she said. "I didn't tell a lot of people about it until October. Christmas was coming up and I was going home to Texas to visit my family. The big question among my friends and Louie was, 'What do I tell my parents?' My parents knew I was seeing him. They knew something about his history, meaning jail and his drug and alcohol use. The question was, 'Do I tell them his HIV status? Do I tell them he has AIDS?'"
Some of Cathy's friends urged her not to tell her parents, especially not at Christmas. "You can tell them if and when it's necessary," they advised. But Cathy spoke with her mother every week on the phone, so she figured her mother should know:
I figured I might as well tell them. They came to pick me up at the Dallas-Fort Worth airport, and we were driving out of the airport. I was sitting in the back seat. My mother looked at me in the rearview mirror and asked, "Does he have AIDS?" My mouth dropped. We were just getting over the "Gosh, it's hot here." We hadn't even hit the tollbooth where you give the parking ticket. I was hoping we'd at least make it home.
I didn't say anything, and she said, "Well, I'll take that as an affirmative." I don't remember talking about Louie's health that much. Maybe she put two and two together.
Cathy's mother was concerned about Louie's health and Cathy's health. She hoped they were "being safe," but she didn't ask specific questions. Her mother was also concerned about Cathy's psychological health, wondering if she would be able to handle having a partner with AIDS. She knew that Cathy had a supportive group of friends, and that she had already lived through the AIDS-related deaths of a "buddy" and a neighbor. "I think my mother was okay with it by the time I left," Cathy said. Her father, though, didn't say much. "My father doesn't say much in general," she added.
Cathy's situation was particularly dramatic because Louie was her first sexual partner. Her younger sister had difficulty accepting Cathy's decision. "My sister was really upset," Cathy said. "She was upset about the whole concept of me being in love with -- having sex with -- someone who has AIDS. She was very concerned about the health side, even though she's way more sexually active than I am. Was I just going to call home one day and say that I had AIDS? Why was I doing this? Of anyone in the world, why would I choose somebody with AIDS? Why didn't I just find somebody who didn't have AIDS?"
When I asked HIV-negative partners in positive-negative couples about their sexual behavior, I got a wide range of responses. Some do not have sex with their partners, some have sex that does not involve penetration, and some have sex with penetration using condoms.
In chapter 11, Charles Barber suggested that some positive-negative couples completely shut down their sexual lives, and I found this to be the case with one of the men I interviewed. Keith told me that when he tries to have sex with Mark, both of them have problems maintaining erections. "I think it's his fear of transmitting the disease to me, and my fear of getting the disease from him," Keith said. "It's in the back of our heads and it kills the whole mood. We still consider ourselves lovers, but our sex life has died totally."
Complicating Keith's situation is the fact that Mark doesn't sleep in the same bed with him. "He hasn't slept in the same bed with me since he found out he was positive. He has slept with me a few times, but he doesn't stay in the bed all night." Keith could not attribute Mark's behavior solely to a fear of being intimate. "Mark doesn't even sleep in his own bed," Keith said. "He has slept on the couch for the past year and a half. I don't know why. He doesn't know why. I've asked him. He doesn't have an answer." Clearly, learning he was HIV-positive disturbed Mark in complex ways.
Many men with HIV-positive partners have sex that does not involve penetration. Edward, 39, who in chapter 9 discussed how testing HIV-negative encouraged him to practice safer sex out of self-interest, told me that he remembered "the old days of unprotected screwing" and missed them, but that other forms of sexual play were just as satisfying. He described sex with a former lover, Chuck, who was HIV-positive:
Chuck and I always kissed very deeply. For us, jerking off was very satisfying, and we were both totally involved in each other's nipples. I used to be able to play his body like an instrument. That's what it felt like to me. He would ripple under my touch. As I got to know him, sex just kept getting better and better. It was just fine.
Seth, a 35-year-old engineer, found nonpenetrative sex appealing even before he met his HIV-positive partner, Jerry. "I was never attracted to activities that would be potentially unsafe, even before HIV," Seth said. "I didn't find them to be within my realm of sexual tastes. It so happens that Jerry has a similar set of tastes and sexual behaviors. It's a matter of preference, just as there are certain foods we don't like."
Because Seth and Jerry are compatible in this way, they did not have to make major changes in their sexual repertoire. "There is simply no sharing of bodily fluids between us at all: no anal penetration, no oral sex, no deep kissing," Seth said. "We have a very vanilla sort of sexual life, but it's very satisfying for us."
Among those whose sexual activity includes penetrative sex, using condoms -- and also withdrawal -- is prevalent. "The 'safer sex' stuff is just always there," said Cathy. "I was a virgin until I met Louie, so I've never had sex without a condom. He's never come in me. We don't do oral sex without a condom, which is a big bummer." Dudley told me that practicing safer sex was not a problem for him and Michael. "I'm convinced that the virus is hard to get, that the only real transmission is through semen or blood contact, and that is pretty easy to prevent," Dudley said. "For the most part, when we have anal intercourse, we seldom come in each other, even though we use a rubber. It has happened, but rarely. And with other partners -- because we're not monogamous -- we do the same thing."
One of the unexpected things I learned from HIV-negative partners of HIV-positive men is that they sometimes feel safer with an HIV-positive partner than with an HIV-negative partner. Because the risk of HIV infection is clear in a positive-negative couple, it may be easier to adopt and maintain safer-sex practices with an HIV-positive partner than with an HIV-negative partner. But this is not usually what the men were talking about. Rather, they revealed that there is something uniquely comforting about the certainty of an HIV-positive partner's status that makes intimacy easier. The uncertainty of an HIV-negative partner's status, on the other hand, raises issues of trust that do not plague positive-negative couples.
Matthew reflected upon this feeling of safety in chapter 12, when he mentioned that there was "more risk not knowing" a sexual partner's HIV status. For him, an HIV-negative partner would be difficult to trust, but an HIV-positive partner would not. Seth also spoke to me about this idea. "Interestingly enough," Seth said, "in some ways I feel safer with a positive person than a negative person. I know up front what I am dealing with, whereas with a negative person there would always be a sense of not being sure, first of all, that he was telling the truth, and second of all, whether his status had changed since the last time he had taken the test." Seth emphasized that he did not think having an HIV-negative partner would encourage him to discard safer sex practices, but rather that it would simply make him more anxious:
My sexual behavior would be the same, but my anxiety level would be different. Even if my behavior were relatively safe, my anxiety would be greater with a negative person than a positive person because I wouldn't know what I was dealing with. It's the uncertainty of not knowing what the status of the person is, of assuming the person is negative but potentially positive. The actual risk is greater with a positive partner, but the anxiety is less.
Alan, 31, who in chapter 9 said that testing negative reassured him that safer sex actually worked, told me that the comfort he feels about sex with his HIV-positive partner, George, arises from the fact that George knows him well and therefore respects his decisions about safer sex. With an anonymous partner, whether HIV-positive or HIV-negative, Alan feels less secure:
With someone I know and trust, I know that if I give some signal, some cue -- "No, this is not what I want to be doing" -- there's an immediate reaction. When I'm having an anonymous encounter, I don't know if people are going to get it when I try to get across to them that I don't want to do something. I make it sound so technical, but in the big picture it's true in a million little ways.
I am more adventuresome with George, who I know is HIV-positive, than I am with a stranger. I know what's going to happen when I'm having sex with George. I know that I have two people's judgment working full force. He's not going to do anything that's going to be dangerous for me or for him. We're taking care of each other. It sounds so sweet.
It surprised me that being in a couple where HIV is known to be present in one partner could be more comfortable than being in one where it is not. But as the above remarks demonstrate, psychological comfort about sexual behavior in a couple may depend less on the actual risk of HIV transmission than on levels of trust and intimacy. This idea is developed further in chapter 15, where I explore the ways in which sex in negative-negative couples is not always easy, even when the risk of HIV transmission is low.
When I spoke with Keith about the reasons that uninfected men have unsafe sex, he mentioned that in the back of some men's minds may be an unconscious desire to become HIV-positive. "Maybe subconsciously they want to catch it," he said. "There was a point after Mark found out he was positive when I was contemplating having unsafe sex with Mark to get myself infected," Keith admitted. "I thought it would make things between us easier if we were both positive. But after a little bit of rational thinking, that idea changed very quickly."
Cathy had also thought about seroconversion. "I don't want to be positive," she said emphatically. "Louie doesn't want me to be positive. It's sort of set. I'd love to be closer to him, but there's no way I'd want to be positive. That does not compute." Because she was on the board of directors of an AIDS service organization, Cathy found herself morbidly imagining what she might do if she seroconverted: "We were talking about what we were lacking on the board. I was imagining calling the director and saying, 'Guess what? You do have a positive woman on your board.'"
Cathy told me she would feel extremely guilty if she seroconverted: "I would feel judged. I would feel it was my fault. It's not like I got it during the seventies or eighties when nobody knew anything. As many times as I have told people that AIDS is not punishment, I think I'd probably feel that way. That goes back to what my sister was saying: 'How can you knowingly put yourself at risk? How would you explain it to us if you did test positive?' Those are big questions that we're starting to have to deal with."
To combat feelings of helplessness, HIV-negative partners of HIV-positive people sometimes adopt a "caretaker" role, becoming advocates for their loved ones in health-care settings, and seeking to "manage" their partners' therapeutic regimens.
Edward told me that finding out Chuck was HIV-positive had "forced" him to make a commitment to their relationship that he later felt was premature. They had known each other for only four months, but Edward soon found himself ready to make a commitment like a marriage: "in sickness and in health, until death us do part." Edward described the way he sought to help Chuck:
I went into my shepherd-caretaker mode. I know how to work systems. I know how to network. I lined up practically free health care for him, taking advantage of a program for HIV-positive people in which the federal government reimbursed 90 percent of his health costs. It was a great program for a while; it has since ended. He got on that. I freaked out, worried about him, so I did that stuff. I also worried that I was getting a little overbearing, not letting him deal with it, making it out to be a bigger deal than he wanted it to be.
Cathy too told me that she worries about being overbearing in caring for Louie. Although she supports Louie's regimen of alternative therapies -- Chinese herbs, acupuncture, tai chi, and candle magic -- she also wants him to seek traditional medical care. "When Louie's ears are ringing and it hurts," she said, "I want him to go to the doctor. He doesn't believe in doctors. He thinks the medical profession is out to make money and kill people. I want him to do it my way. I find it difficult for him not to have his disease the way I want him to have it. I'm finding it really hard to step back."
Cathy's urge to be a caretaker sometimes leads to misunderstandings. One night, for instance, Louie was sore and achy, and she sat on the couch with him rubbing his feet. He told her to stop. "I was feeling bad because nothing I was doing was right," Cathy said. "Every time I touched him, I hurt him. And so I jokingly said, 'Okay, I won't touch you.' He flipped. That's the one thing he's always feared: that people won't touch him." In this instance, Cathy's desire to be helpful backfired.
In professional chess games, two clocks in a single case tick off the time allotted to the players. If the players take different amounts of time to make their moves, the two clocks get out of synchronization. One player ends up with less time left than the other. As a result, the pace of his later moves must be quickened. Positive-negative couples can be like those chess players. Time ticks away for both partners at equal rates, but the significance of the time that remains for each is different.
HIV-negative men I spoke with told me that their HIV-positive partners live with an energy and urgency that arise from not knowing how much time they have left. Their example sometimes influences HIV-negative partners to live at the same pace, just as the speedy moves by a chess player with less time on his clock may cause an opponent to quicken his pace. Keith, for instance, told me that one thing he has learned from living with Mark is to live one day at a time. "I've learned to just live for today," he said. "That is the best way to live. You don't know what's going to happen down the road. You can still have your future goals and dreams, but don't put so much emphasis on them. Concentrate on the present."
The sense of urgency felt by an HIV-positive partner can destroy a relationship with an HIV-negative partner. Edward told me that his partner, Chuck, evaluated his life goals as a visual artist when he learned he was HIV-positive and became more committed to his creative work than to his relationship with Edward:
He started figuring out what his priorities were, what he wanted to do with his work, and what role -- if any -- I had in that picture. What I saw was an intense commitment to getting as much of his work out as possible and a seriousness about his work as an artist that wasn't there before. Which, of course, is a very healthy response.
As a result of his soul-searching, Chuck left Edward and moved to Paris, so that he could prepare work for a show and then return to establish himself in New York. Chuck's commitment to his work shut Edward out emotionally. "Instead of seeing the relationship as something that enhanced his ability to do his work," Edward said, "he felt that it was a drain on his emotional energy, and that if he was going to get his work done, he needed to not have me in his life. I think it ultimately led to our breakup." When Chuck returned to the United States after a successful display of a new series of works, he settled in New York on his own and distanced himself from Edward. Edward tried to see him several times, but Chuck avoided him. Musing about the dissolution of their relationship, Edward said, "I presume I take an emotional toll on him I just don't understand."
Sometimes the dramatically altered expectations about life that characterize an HIV-positive person's first reactions to his HIV status change over time, as he realizes that he may be healthy for a long time. Dudley told me that when he first met Michael, Michael believed he was going to die soon. Michael's belief was strengthened by the fact that his former lover had died within 18 months of finding out he was HIV-positive. "Michael got quite depressed and didn't foresee much longevity," Dudley said. With very little advance planning, Michael went on a trip to China, spending about $15,000. "After a while, he realized that life was going to go on. He wasn't symptomatic, so he really didn't have AIDS. He was just HIV-positive."
Since then, Michael and Dudley have been more optimistic about the future. "What we always do is plan, so there's something to look forward to. We're going to Palm Springs for Thanksgiving. That's not so far in the future," Dudley said. "The major difficulty in planning is the uncertainty, because the disease is progressive and you don't know how fast it progresses. But it's no more uncertain, I suppose, than any type of terminal illness."
In the face of this uncertainty, Dudley's approach is pragmatic: he is ready to handle crises as they occur, but he doesn't spend time anticipating them. When a loved one becomes ill or needs to be hospitalized, Dudley said, at that point your life becomes different: "You stop what you're doing, your normal routine, and you rise to the crisis, whatever the crisis may be. It's like knowing your kid is fine until he falls off his bike and breaks his leg. Then you leave work and take him to the hospital. Your life changes when you have a crisis, but you can't live in a crisis. So we don't live in a crisis."
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Conclusion · Appendix A B C · Notes · Contributors