Last year my boyfriend, Hush McDowell, seroconverted. We’d had unsafe sex off and on since we met, so it was a shock, but not a surprise, when 20 months into the relationship he came down with all the flu-like symptoms of HIV infection and then tested positive. The months after that were the most difficult in my life: Hush and I fought over whose fault it was, and I found myself in a deep depression, my first ever. I felt incredibly guilty: I’d cut in half the life of the person I loved most in the world; he would likely take care of me as I got sick and died, only to be left alone to face his own disease. Since that time I have struggled to comprehend my role in our unsafe sex, but many months of discussion in therapy, in my HIV support group and with my friends have brought little clarity. It terrifies me to realize that if I can’t understand why it happened with someone I love as much as Hush, I might not be able to prevent it with other men. And given all the talk of the “second wave” of infections among gay men, I also feel a communal duty to pass along what, if anything, I’ve learned.
Hush and I met in the spring of 1996 on vacation in rural Tennessee, and our attraction was immediate and intense. That night, we had sex for the first time—Hush fucked me. We didn’t disclose status or use condoms. The next morning I told Hush I was HIV positive, and we talked about the unsafe sex we’d had. Since Hush was negative, we made a pact to use condoms from then on. During the next few days we floated in a sexual dreamscape, from one adrenaline-pumped experience to another. Our parting was difficult as we both realized that our moment in paradise was over: He was returning to Washington, DC, and I was heading back to New York City.
We kept in daily contact, writing long, loving letters overflowing with sexual fantasies. A month after our first meeting, Hush visited me for 10 days. It was a time of intense sexual experimentation. We tried out S/M, bondage, fisting, dominance and submission, a whole array of sex toys. We switched sex roles back and forth. We reveled in tasting so many fresh experiences, sampling every sex act we could think of. Coming out of a relationship that had grown sexless, Hush was tapping a geyser of erotic energy and finally sharing the highly sexual side of himself with another person. I spent that time treating my body like a test car: seeing how fast it could pump, how quickly it could switch from one position to another, what tricks it could be made to perform, how long it could be pushed before collapsing.
But the experimentation was more than just sexual. I was also crossing emotional boundaries, striving for a level of honesty I hadn’t had in previous relationships. I felt I could share anything with Hush—no secret was too personal, no sexual desire too kinky or obscene, no emotion too overwhelming. During sex, parts of my personality that I am unable to verbalize become remarkably evident; my curiosity and sense of play shine during these romps. But now with Hush, more difficult feelings took these unguarded opportunities to burst forth, too: like the core of fear knotted deep in my soul and seemingly unrelated to my health or any other event in my life, which can bubble out into a pot of tears. The sex was intense and cathartic, frightening but intoxicating, almost unexplainable. Many sessions were better psychotherapy for me than my expensive shrink. Each new encounter seemed to strip away the outer coatings of my life, and Hush was always there to help me to examine them so that I wouldn’t panic. Overall, it felt like we were trying to blend into oneness, with the sexual exploration acting as the merger point. Pushing boundaries and taking risks were integral to the process. We saw ourselves as sexual pioneers, heading into uncharted territory in a search for fulfillment, but also using the sex to create a new way of relating emotionally.
The relationship proceeded, Hush soon broke up with his lover, and we started living together. I was so enthralled with the idea of our oneness that I immediately opened a joint bank account, added his name to my credit cards, and handed over all management of my finances—commitments I had never made with other lovers, even after many years. I felt secure and settled in the way Hush redesigned our apartment, sorting through decades of accumulated junk and bringing order to my otherwise-hectic life. He did much more for me than any previous boyfriend: It was as if he was reorganizing not just my external things but also my entire life. What I failed to realize at the time was how much he was reorganizing his own life, too, setting aside hobbies, ways of spending time, the friends he had.
Yet those next months were also difficult ones. Hush is highly sexual, and I had problems keeping up. When our relationship was long distance, the newness of the sex had kept me pumped up, but once we started living together, I became less sexual. This is an old pattern: I never manage to maintain my initial sexual level with any boyfriend past a few months. I act like a used-car salesman when impressing a new beau, emphasizing my attractive features and glossing over problems during the initial courtship, only to renege on the promises after the sale is made and things begin to break down. So sex two or three times a day became sex two or three times a week. Hush would try different things to get my libido back to its earlier level. He’d try provoking me into anger, hoping I would channel the rage into S/M scenes. He’d cry or beg. He’d work like crazy re-decorating the apartment, making it beautiful, hoping I would reward him with sex. Nothing worked. Hush couldn’t understand that no amount of harmony at home was going to make me horny.
I was exploring this sexual disconnect in therapy, but it was a deep problem that wasn’t getting fixed quickly enough. And Hush was impatient: He wanted me to flip a switch and suddenly send the sexual energy through my body. He seemed to think he could act as the electrician, tinkering with me till the juice flowed again. I wasn’t intentionally withholding sex or using sex as a way to make demands; I just always hit an intimacy wall where the sex—and the relationship—become too close, and I get scared and pull back. It was a dynamic that literally tortured him. Since Hush’s primary reason for leaving his last relationship was sexual dissatisfaction, he found it maddening to face the same problem again.
It was during this period that I began to fuck Hush without condoms. You’d think I’d remember the first time I crossed such a dangerous line, but I don’t. In fact, I’m not sure how many times I fucked Hush without a condom before he seroconverted. Was it 10? Fifteen? I can say I never came while fucking him—Hush got infected even though he wasn’t exposed to my cum. And I think the times I fucked Hush without a condom were a small fraction of how often he fucked me without one, though Hush disagrees. But one thing is certain: After he seroconverted, we had arguments over whether it was me fucking him or him fucking me that caused the infection. I always felt guiltier when I was the one fucking without a condom than when I was the one getting fucked—more risk means more blame. For some reason, I also thought the top was the one responsible for the sex act—and condom use—so I held myself relatively blameless when Hush fucked me without a condom, even though he was still at risk. Intellectually I knew that keeping Hush negative was a shared responsibility, but it was easy to forget about this mutual obligation when I was just lying back and taking it.
I tried to rationalize that the unsafe sex wasn’t all that risky: Because I wasn’t coming inside him; because I never had much pre-cum; because since I’d started weekly testosterone injections my testicles had shrunk so much that I barely produced much semen even at orgasm. In reality, though, I knew this was bullshit. I recognized that with my outrageously high viral load and multidrug-resistant (MDR) virus, I was the last person in the world who should be having unsafe sex with a negative guy. Even though at the time most scientists dismissed MDR viral transmission as only hypothetical, if it was to happen, getting infected by me would be very bad news.
Or would it? Maybe I had so integrated life with HIV into my sense of self that I could no longer acknowledge how awful AIDS really is. Testing positive when I was 20, I never truly formed an identity as HIV negative; since finding out, I have helped to start half a dozen AIDS organizations, built two successful businesses (including this magazine), gone to graduate school, formed many friendships and traveled all over the world. Having HIV hasn’t slowed me down a bit. Maybe in my crusade to prove that life with HIV can be full, rich and meaningful, I forgot that being HIV negative is still the preferred way of life.
After each occasion of unsafe sex, Hush and I would often have a conversation and vow never to do it again. Our talks contained more guilty confessions than deep analysis from me. Since I’d focus on the act itself without exploring what my need for condomless sex was all about, I’d never solve the problem; I’d only make it go away for a little while through willpower. And so for a month we’d stay safe. This pattern continued for the next year. When we didn’t use a condom, sometimes I would be so caught up in the moment’s magic that I had tunnel vision and saw only the pleasure and excitement of being so close to another person. It was only later that I’d remember the cost. Other times I’d be well aware of the danger while I was penetrating him. In fact, it was almost like I was separated from my body, watching from above in horror, like those people who have near death-experiences. I remember once when fucking him, I suddenly jumped up and started pounding on the bedroom door in anger and frustration, shouting “I don’t want this to happen anymore!” But I never got any pleasure from the thought of infecting him; that always horrified me, even in the moment.
What made things worse was that I was so ashamed of my behavior that I couldn’t seek help from my friends. It seemed too awful to admit to anyone. So I kept the unsafe sex a deep secret, mentioning it only to my therapist. And even with him, I minimized the problem. I knew that if he understood its magnitude, he would force me to confront drives and desires within myself that on a conscious level seemed disgusting.
Yet despite the guilt and shame, there was—and is—something very fulfilling about having sex without a piece of latex separating me and my partner. I remember the time a year and a half before meeting Hush when I barebacked with a positive playmate. I had hooked up with him specifically because I knew he didn’t use condoms with other positive guys, and I wanted the experience of taking another HIV positive guy’s cum, energy and spirit into my body. I was thrilled knowing that a part of him would get incorporated, become me, never leave. It was less a sexual excitement than a spiritual one, and it felt liberating. Afterward I hungered for that sense of ultimate connection again. Yet with Hush, because of the danger, that magical melding didn’t actually happen. While the sex with the positive guy raised my self-esteem—I felt proud to have acted on a fantasy—the sex with Hush made me feel selfish, hedonistic and destructive.
There are other reasons I had problems getting the condom on. Having spent many years as a bottom, I’d never cared much about them: It didn’t feel any different to be fucked with them than without. But as a top with Hush, I found condoms bothersome; there was a huge decrease in sensitivity, enough so that sometimes I couldn’t keep an erection. I started getting anxious about my ability to perform. It was a self-fulfilling prophecy, and I worried myself into impotence often enough that I wanted to give up the condoms. This was pre-Viagra and infinite hard-ons.
In the fall of 1997 I got sick from drug-related side effects. I lost 25 pounds and became dehydrated, anemic and neutropenic. I was fatigued, I lost my appetite for everything but ice cream, and at 157 pounds, I hadn’t weighed so little since I was 15. I had almost no sexual desire, despite my testosterone shots. Hush, already frustrated, now became desperate to boost my sexual appetite. Tempting me with unsafe sex had become a last-ditch approach—at least that was what Hush told me during our fights afterward. I disagree. I don’t think he needed to initiate unsafe sex to get me to respond. But memory is a tricky thing, and maybe I’m in denial. Or perhaps the unsafe sex was my way of punishing him for being so demanding.
January of the new year saw our relationship at an all-time low. I was so sick that I was scared for the first time that I was dying; Hush was just as scared, plus he was mad at how little intimacy we were sharing. And then he seroconverted.
After we discovered he was positive, no level of the self-hating name-calling I did inside my head seemed sufficient: I was evil, a murderer; I should kill myself. But as awful as I felt about Hush’s seroconversion, I was strangely no longer tortured about our sex. We completely gave up condoms—the damage had been done. It was a few weeks after Hush tested positive that I came inside him for the first time. It had been more than a decade since I’d last orgasmed inside someone without a condom, and the moment was a bittersweet mix of exhilaration and shame. I had caused someone I cherished irreparable damage, but I was reaping the rewards of better sex. And so was he. After his initial dismay upon testing positive, we jumped into the bareback scene; I even organized a few parties. I took Hush to a sex club for the first time, and we increased our frequency of threesomes. It was as though Hush’s seroconversion was the final push we needed to enter a world of sexual hedonism we’d both always dreamed of.
I was too wrapped up in my own misery to spend much time comforting him. Also, we were busy arguing about who was to blame for his seroconversion. We’d review and disagree about the facts and the motivations of our behaviors. And while I was a treatment nut and an AIDS activist, Hush had almost no experience in those worlds. A self-employed massage therapist, he had no life insurance and no disability insurance. (Thankfully, we’d gotten him health insurance a year earlier.) I advised him not to see his doctor or create a medical record of his seroconversion until we had time to put a financial plan into effect for him. But I didn’t work hard to do so. Because I’m against early treatment of HIV, I didn’t see a need to get to the doctor quickly. And since I feared that he had been infected with my MDR virus, I doubted that there were any drugs a doctor could prescribe. I believed the best strategy for Hush was to wait five or 10 years for better meds or better strategies for overcoming resistance. So I took a leisurely attitude, not recognizing that as scared as he was, the waiting was driving him crazy. Eventually, he did get hooked up with the Aaron Diamond Research Center. After sophisticated testing, they confirmed that Hush was infected with my supervirus, but thankfully his CD4 cell count was over 800 on his first test and has since risen to over 1,000, while his viral load remains low.
Now, almost two years since I infected Hush, trying to keep our relationship going is a daily struggle, and we both feel defeated by the weight of old patterns. Our fights are still all about sex, or the lack of it. We no longer argue over how he got infected or why. Nor are there any more debates about whether or not he should be on meds. He has a doctor and his benefits are in place. To me, it’s as though he’s been positive since before I met him. The experience certainly hasn’t brought us closer. The idea that “if we were both positive, we wouldn’t feel so different, we’d have the same identity” is just a romantic notion; Hush and I didn’t suddenly share the same outlook on life.
Hush’s seroconversion is one of the few things in my life that I’m deeply ashamed of. In telling this story I don’t mean to deny responsibility—I know what I did was wrong. Yet Hush and I never had the tools to uncover what was happening between us. I may have read 100 brochures on the mechanics of safe sex, but I saw not a single guide exploring the emotional complexities that lead to risk in relationships. I sense that many couples are trapped in a dynamic similar to Hush’s and mine, and many positive people rightly worry that talking about their unsafe sex will get them labeled irresponsible, reckless, even murderous. I wish our community was open to discussing these issues in a nonsensationalistic way and less eager to condemn anyone who admits to unsafe behaviors.
I also wish I could close with an account of how I might have kept Hush safe. But even now, I’m not sure I could have. Certain things might have helped—talking to my therapist or friends, having deeper conversations about sex and what it means with Hush--but I don’t know what would have motivated me to take such steps. In a way, I feel fatalistic about Hush’s seroconversion. After all that’s happened, unsafe sex remains an attraction to me, and it is a regular struggle to use condoms with negative guys.
* * *
Call this the seroconversion of a codependent. I’m writing it because of my sense of frustration with the HIV prevention discussion, and because of how I lost my way. I didn’t feel I could talk to anyone about some frightening tendencies in my relationship. I hope that what I have to say may open up a space for others to deal with their difficulties, and maybe even prevent infections.
Coming out as a gay man after the advent of HIV was, for me, not unlike a terror campaign. For a decade I was sexually very safe, and as I matured that care had consolidated. I always used condoms with anal sex, and rarely had oral sex without one. This extra vigilance made me different from every gay man I knew; it also made sexual negotiation an embarrassing chore. In fact, the entire safer-sex code made me feel desexualized. I was alone and unsatisfied in that safety net.
I met Stephen Gendin at a Radical Faerie gathering in the central Tennessee hills in May 1996. We shared a hammock under the walnut trees, where I fell at once under the amazing sexual spell he casts. We had raw sex within hours of meeting. How this happened is largely a mystery to me to this day. But I can speculate. It seemed that getting screwed bare was what he wanted, and what I wanted desperately was to hold his interest. I couldn’t believe I was with him at all. A mystic fog settled around me, suspending my sense of reality. I reasoned he must have been negative, or else he would have broached the condom subject. The unsafe sex was thrilling in ways so powerful they’re practically beyond description. I felt a remarkable sense of intimacy between us. The trust implied by the physical connection brought with it a bond that we’ve shared ever since.
Hours later he told me he was positive. I felt that moment was all about him. I had no anger at all in that afterglow. My mind raced to cope, and to produce a reaction that supported him and wouldn’t jeopardize the love spell we were weaving. I pushed my fear of infection down, out of sight. I was afraid to fear, really; I didn’t want to screw up a good thing happening all around me. Giving energy toward the care and comfort of people I love is a big part of my self-concept, even to the point of sacrificing providing that care to myself. Perhaps I was driven by a murky sense of guilt at being spared, but certainly by tremendous empathy for the struggle in his life. When I told him I was negative, we agreed that we would always use condoms because our fucking was intense.
Stephen and I began seeing a lot of each other. I’d head up to New York City, or he’d visit me in DC. It was complicated, because I was still living with a man in what had become a sexless companionship. My first fight with Stephen happened after I played with another boy. We had been casual about sex with others, but after two months our feelings were engaged more deeply. I was terrified by his anger, so scared that the incredible momentum built around us was in peril. Stephen communicated strangely in this fight.
I found myself second-guessing, intuiting and projecting. I had never felt so guilty. Suddenly he supplied a solution to all the pain, a suitable punishment, an erotic event that could happen only once: He would give me HIV deliberately. You may think me mad, but I eroticized the fantasy along with him. The idea that I would sacrifice my life for him seemed a profound expression of love. I was already searching hourly for ways to communicate that depth, that desire to surrender and prove my feelings.
I was intensely frustrated that our connection hit this snag. Ironically, the whole scene was happening while he was in Vancouver at the International AIDS Conference. We dialogued by express letter and phone; the insulating time and space made this a riskless fantasy. We both came to our senses quickly, and when next we met, we embarrassingly dismissed the whole concept. I compartmentalized the affair as the natural processing of issues in a fledgling relationship complicated by serocordiscordance. In retrospect, the way we handled this was a big step in the wrong direction. The information that we both felt an erotic power around seroconversion should have set off major alarm bells, but it didn’t.
Soon I moved in with Stephen. My thinking about sex and safety began to change. He educated me about oral risk, providing the available published information, and I relaxed about it after a decade of internal struggle. He became the top in the relationship, and for the first time in my life I was a bottom. We toyed with S/M and fancied ourselves capable of elaborate role-play as master and slave. After years of deprivation it was exhilarating to find myself living in what felt like an authentic kinky sex novel. After work we’d have sex, he’d put me to bed with sex, and he’d wake me again in the night and in the morning with sex. I would occasionally top him—sometimes without a condom, but he put a stop to that. Otherwise we always used condoms. I trusted him implicitly, both as an HIV expert and as a sexual dynamo with knowledge beyond my provincial conception. In fact, I ceded my own authority of self to him in ways I now find shocking. My new home and life in New York City and my identity increasingly centered on Stephen’s approval and happiness. I was deeply in love. I was, more plainly, obsessed. And I was very happy.
Just a few months and the sex novel underwent a massive rewrite. Our sexual activity went from the exotic to the routine. I suppose this is the way of things, but nonetheless I despaired. Stephen communicates most directly in two ways: text and sex. We had courted by mail, and now that we were living together that channel was gone. The only times I felt fully present with him were in the sack. To me, sex was inextricably tied to the health of our relationship. Not to mention that my libido has always been highly active, and my expectations even higher. Stephen had made pretty clear to me early in the relationship that he intended sex to be a major part of our daily life. I tried dreadful manipulations, tried to be his everything, to maneuver him into sex because that was where the possibility of feeling good about us (and myself) existed. All to no avail.
Then I found a new way in, which was the old way after all. When Stephen was particularly aloof, I discovered that if I suggested—usually without a word—that he fuck me bare, he’d respond. Silently in the night, to establish erection, I’d pull him onto me and press his soft penis against my ass. He would literally harden into me. At such moments I felt validated, and reconnected to Stephen. I also felt a thrill in doing the unacceptable all over again. Raised in a culture that says that any gay sexuality is breaking “the rules,” I had learned that sex with men doesn’t feel wrong or disgusting, but right and truthful. I had also learned to question other conventions about gay sex. That self-empowerment came from rebellion and experimentation, but it also eroded my confidence in authorities on the subject.
I was prepared for these developments with rationalizations aplenty: My pre-Stephen sexual self thought first, and so played safe; now I’d learned to act first, analyze later. Stephen made almost no precum, and that only just before climax. The condomless insertion was only to establish a hard-on—he wouldn’t move, just hold in place, and we’d lock eyes, and I’d feel loved—then he’d put on a condom before the “real” fucking would start. Since it was at the beginning of sex, my rectum wasn’t irritated yet and not as easy a vector for the virus. A couple of negative HIV tests later, it was just not a fearful thing anymore. According to the CDC, transmission risk in unsafe anal sex with ejaculation is about 1:120—it was with this armor that I comforted myself. I thought little about Stephen’s supervirus and sky-high viral load; he had mentioned the possibility of multidrug-resistant (MDR) transmission, but at the time scientists considered it a wild conjecture, pure theory, and I took it as such. The threat of simple HIV infection was terrifying enough.
Other forces beyond the relationship were also in play in my serconversion. Having lived with the epidemic all around me, freaking out with each new antibody test, each revelation of someone’s infection, each death, I had developed an expectation that eventually I would get infected. The term survivor’s guilt hardly suits this feeling. It’s more a certainty that this is how gay men die; this is what our lives involve. I felt almost excluded from the tribe at times, and in some dark way that I should be a part of the great tragic story.
In late 1996, Stephen wrote an essay for POZ about how he had barebacked with another positive man (“Riding Bareback,” June 1997). His tone suggested that he felt no guilt or shame about this choice, and that barebacking ought to be considered a matter of sexual freedom. This hurt and confused me. He’d invited my comments as he produced it, and I’d had plenty to offer. I felt the essay to be half-truths amounting to lying since it did not address the raw sex the two of us were having. Our arguments about this moved us further away from the risks that we were placing me in. Everywhere we went for the next few months Stephen was roundly congratulated for his candor and courage, and my feelings of isolation deepened.
By the fall of 1997 we were growing increasingly distant. Stephen’s health was declining. I was in a heavy depression and raised alarms about our drifting apart, but I didn’t feel he heard. He’d broken with so many things he’d agreed to that it seemed he continued the relationship in bad faith. When we did have sex, I just barely felt the renewal of connection that made it so damn important to begin with. I had insomnia to beat the band, and lay awake several hours nightly. I was nearly suicidal, which is right on point. One night in late December 1997, I remember waking abruptly and finding Stephen hard as a steel pipe. There was no need to go condomless for erection’s sake this time, but my need for closeness was stronger than ever. I slid on top of him. He just lay there, not pretending to be asleep, but not participating in the slightest. All I could pick up from him was what seemed to be irritation, and this made me even more determined. At last, frustrated at the one-sided nature of it, I climaxed, and he slept again without a word. I can’t prove it, but I believe this was the moment of my infection.
Around the middle of January, I had flu symptoms, lasting about a week. I was stressed preparing for a massage-license state board examination, a normal time to become ill. But since I’d had a flu shot early in the fall, I was concerned. So I prepared a home-access test. It must have been 10 days later when, lying awake, watching the clock move relentlessly toward morning, I realized my tests results had been available for days. I crept into the dark living room to make the call. I was mildly apprehensive, but hardly more than that. With some 20 tests under my belt, it felt routine. I punched in my code and waited. It was taking too long. I knew from overhearing a conversation of Stephen’s that when your result is negative they don’t waste a human resource—they just give you a recorded blurb saying as much. When that live human voice answered, I hung up. And I wept. After some time, I woke Stephen and asked him to make the call again. It was true. After all these years of sex, safety and risk, I’d seroconverted.
It was true again two weeks later, and again the next month. Luckily I’d started seeing a therapist: She gave me a space to react. This included much of what you’d expect: horror, anxiety, crippling insomnia, anger toward Stephen and a lot of sadness. But I also began to feel relief that the ever-present threat of becoming infected was over, and hope that our relationship would improve. I faced the reality that all along Stephen had preferred raw sex, and I’d acquired the taste, too. Perhaps the sexual distance between us had been coming as a result of our different serostatuses—now, like latex, that no longer needed to come between us. At first that was true, but it wasn’t long before the same patterns returned, and Stephen avoided sex with me again. If anything, the tension from my negative days had been supporting his sex drive for me. Now that excitement could never be renewed for him.
My therapist quickly referred me to a psychiatrist who started me on antidepressants and sleeping meds, and connected me with the Aaron Diamond labs. It has protocols for people who are within the first 90 days of infection and advocates immediate treatment to try to prevent deeper seeding of the virus and possible eventual eradication. This sounded hopeful, and I was short on hope. Stephen advised against it, believing that staying drug naïve was a better long-term strategy. He urged me to have the new drug resistance tests before making any decisions. But the folks at Aaron Diamond refused to provide the tests at first—resistance testing was a new tool, and there had been no documented case of MDR transmission. The whole idea of MDR in the drug naïve didn’t jive with their ideas about the virus. But they were hot to find 90-day candidates like me, and agreed to administer the tests as that window started to close.
I was prepared to learn that I was resistant to a drug or two, perhaps at worst a whole class. But the results were heavier than that: I was highly resistant to most drugs, and slightly reactive to all, including some not yet approved. I had no real treatment options, and wouldn’t in the foreseeable future. The impact of learning that I did indeed have the supervirus was devastating—a complete surprise, coming from a place never thought about.
I couldn’t put off telling my family and close friends about my infection any longer. Many were golden with their responses, but some (especially the straight ones) couldn’t help but ask how it had happened. I lied, claiming total safety and complete ignorance of any possible opportunity for infection. I couldn’t bear the blame at a time when I already felt such guilt over having failed to prevent the preventable and shame around the queer-sex origins of the transmission. Telling my father was the worst moment of my life. His graceful support was the only way I recovered from the “coming out as positive” stage in the whole disaster.
That July, Stephen and I went to the World AIDS conference in Geneva. It was exactly the wrong place for me. There was no reported progress on MDR salvage protocols. The first documented case of supervirus transmission was presented—it was not news to me. I resented the Aaron Diamond researchers for not presenting my case, too—alarming corroboration that wasn’t being shared. When Stephen and I did an interview for The Village Voice about my MDR infection, some prevention advocates and gay media personalities reacted brutally, directing their anger at Stephen, without any apparent awareness that this was my tragedy. Their condemnation of non-monogamous sex blinded them. And their model of monogamy to stop infections wouldn’t have mattered to me anyway.
Becoming infected gave me new sexual confidence, and allowed the blossoming I’d thought would come from life with Stephen. I opened the relationship wide so I could try acts with a high risk of fluid exchange with positive partners that I hadn’t dared before. The availability of such willing men has been a pleasant surprise. Health risks such as STDs seem minor compared to the fait accompli of infection. As a negative person I’d always felt “virtually” infected anyway—I could only confirm my status as of the last antibody test. Now with partners I can be completely safe or not, negotiating sex knowing where I stand.
I regret much about the past four years. I made many of the worst decisions of my life. Sometimes it feels as if it was all inevitable, but I have to accept that it didn’t have to be this way. The process of developing this article has been tangled with the process of resolving the relationship. Stephen and I rarely have sex now, and our relationship is no longer a romantic one. We have become something more like friends and are moving into an apartment with separate bedrooms.
It’s especially hard to tell this story without some kind of happy ending. I would like to say that I’ve learned something about placing undue importance on sex, or about dependence, passion and need. But the best I can do is offer this story, and encourage you to tell your truth, too. More important, ask and listen.
When one lover is HIV positive and the other is HIV negative, the issues that typically challenge any couple become particularly complex and acute. Sadly, it’s common for mixed-status partners to avoid discussing the very aspects of their relationship that are most likely to lead to unsafe sex. Barriers to communication are exacerbated due to the often-overwhelming fear of HIV transmission, illness and loss. Major issues that partners of all genders must wrestle with include: differences in serostatus “identity”; difficulties associated with future planning; fear of HIV transmission; lack of sexual spontaneity and satisfaction; decisions about pregnancy, parenthood and child-rearing; fear of abandonment; fear of increased intimacy in the context of potential loss; fantasies of fleeing; caretaking concerns; and sadness, guilt and rage.
Discussions about mixed-status HIV prevention—at both a personal and a community level—need to evolve with medical advances. Right now there is much hope about health and longevity thanks to better anti-HIV therapies, but these drugs can pit survival against quality of life in poignant ways. Above all, their negative effect on the sex lives of people with HIV and their partners calls for much-needed research. And as Stephen Gendin’s and Hush McDowell’s stories caution, the transmission of MDR strains of virus presents increasingly serious consequences for individuals, couples and the public health.
As painful as it can be, communication is key to preventing HIV transmission in a serodiscordant relationship. Silence and secrets can lead to risky behaviors. What many people realize (though others still don’t understand) is that plenty of couples hate condoms: They are a barrier to intimacy; they are a constant reminder of HIV infection; and they interfere with spontaneity and pleasure. Couples often complain that using condoms is like “bringing death into bed.” And not using them, or en-gaging in risky behaviors, can be perceived as exciting, passionate and a “true” expression of love. Partners need to develop understanding and support for such feelings and help each other to achieve intimacies that do not involve health risks.
Disclosure of HIV status is a very personal matter. Many mixed-status couples feel alone and isolated. They all too often find little validation and much misunderstanding from friends, family and society in general. It’s important that we support these couples as they face their challenges and that we respect efforts they make to publicize their struggle. What they learn from their differences and solidarities can be of value to the entire community.
How Mixed-Status Lovers Can Protect Each Other
by Robert Remien, PhD
Here are specific recommendations—with a focus on sex—to help couples to cope with their mixed-status identity.
1. Talk, talk, talk. And listen to each other about everything that has meaning in your lives. This is the foundation for true intimacy. Discuss the ways in which you are, or can be, close and what a “true” expression of love and commitment means. How can you achieve intimacy while protecting each other from HIV transmission and other kinds of harm?
2. Respect your differences. You are more than a mixed-status couple, but that is an important part of who you are. What do a “positive” identity and a “negative” identity mean to each of you? How does serodiscordance affect your relationship? Your sex life? Your thinking about the future? Your daily activities? Accept the reality that your status is “opposite” and you share that difference. Acknowledge that both experiences deserve respect—neither is more or less valid because of HIV status.
3. Speak of sex. Discuss the “meaning” of safe sex and your beliefs about risk, including the gray areas (like oral sex without condoms). Speak frankly and directly about frequency of sex, specific likes and dislikes, erotic fantasies, desire for pregnancy, and rational and irrational thoughts about risk.
4. Agree on safety. Negotiate acceptable and unacceptable risk behaviors—then commit to them! This may take time, and frequent reevaluation. Without agreement, fears and uncertainties linger and can be a hindrance to sexual pleasure and satisfaction. If necessary, discuss feelings about “nonreciprocal” behaviors (like penetration by the negative partner only).
5. Level about loss. Acknowledge that always using condoms can be a drag, and that not being able to share body fluids, especially cum, is a loss. It’s important to talk about this loss because sexual risk-taking can be an expression of the desire for closeness, an attempt to prove one’s love or anger at the virus (and the loss). Making feelings explicit can diffuse their power.
6. Normalize rubbers, not risk. Make condoms and other strategies a natural part of sex, and an expression of love, commitment and protection.
7. Keep it hot. During sex, be creative about ways to make it passionate and exciting while keeping it safe.
8. Do a reality check. Share your fears and fantasies of transmission. What would it really be like if the negative partner did seroconvert? How would you each feel? Who else in your life would be affected? Examine the consequences. Is there a part of you that wants you both to have HIV? Remind each other what the reality of AIDS is like and of the ways that HIV is not desirable.
9. Learn from mistakes. If you have unsafe sex, challenge yourselves to uncover the meaning of your actions. Were the risks you took deliberate? To please yourself? Your partner? Repeat Step 8. Recommit to protecting each other. Remember that what needs to be in place is a mutual commitment—when one partner feels vulnerable or tempted, the other can serve as a check. If you need to make this concrete, choose an object (ring, ornament, tattoo) that you can point to at vulnerable moments (for example, when high or out of control).
10. Get help. If necessary, work with a couples counselor who has HIV experience. Realize that you are not alone in dealing with these challenges. Seek support from friends and family. Demand that your community acknowledge your struggle.