Those who are close to Cindy and Luis also know that the couple's life together is profoundly influenced by another factor: They are a couple of mixed-HIV status, Luis has been HIV-positive for over eight years. He is 41 years old. Cindy, who is 38, is HIV-negative. "Where we live, it's not common to be HIV-positive, and if someone is, it's often kept very quiet. To be a mixed-status couple is even more of an aberration to people around here," Cindy said.
But perhaps the greatest surprise, even to those who know them well, is that the problems HIV raises in their relationship are not necessarily those one might expect. For the most part, the typical themes and concerns about AIDS -- fear of sexual transmission, fear that sex will not be enjoyable, and concern about coping with a serious illness -- are not the ones which have impacted them directly. Cindy remains HIV-negative, and, she says, "we have the same kind of sex life as everybody else: very satisfying, very private. No, I'm not worried; yes, I am well informed." Serious illness has not played a large role in their lives. Luis has been asymptomatic aside from occasional bouts of non-HIV related bronchitis. Cindy's mother and other close family members have been supportive of the relationship, and Luis works hard to maintain long-distance ties with his sixteen-year-old daughter in Colombia.
All of this is not to say that HIV does not present enormous challenges for Cindy and Luis. It's just that these challenges are more subtle, less immediate, and, perhaps, more complex than the stark choices presented by a medical crisis or seroconversion in the uninfected partner. Life with HIV for Cindy and Luis is a balancing act between immersion and isolation.
Both, for instance, work in HIV-related fields and are deeply involved in volunteer activities. "We try to avoid becoming 'poster' people with AIDS. It's really hard to say no around here, but I've been trying to," says Cindy. Similarly, both must attend to the details of a rigorous daily regimen of combination antiviral therapy and supplementary nutritional and holistic health care practices, even while most of those around them on a day-to-day basis have no idea that the couple is dealing with anything out of the ordinary. "We spend a tremendous amount on food, we buy really good vitamins, distilled water," says Cindy. "I think people sometimes wonder why -- even though we're not wealthy -- my husband gets acupuncture. There are odd things that I think people who don't know our status wonder about." So even without particular fears around HIV transmission and without acute health emergencies, Cindy notes, "HIV has an extremely large presence in our lives, even though we both try hard to limit it."
While most couples of mixed HIV status (or in medical terminology, HIV-serodiscordant) face certain similar issues, many also find themselves situated in very different circumstances. For every couple living in Chelsea or Washington Heights where HIV is a well-known fact of life, there may be another couple living in rural Hudson Valley where HIV can seem distant and foreign. For every couple who knows many others in their situation, there are others who feel that they only have each other. And for every couple forced to handle opportunistic infections, there are those for whom illness remains a dim prospect on the horizon. At a time in the epidemic when new combination antiviral therapies are helping many to live longer and healthier lives, it seems likely that more mixed-HIV status couples will spend long periods of their relationships under a hazy cloud of uncertainty about what exactly HIV means for them rather than in a state of "crisis."
"For these couples, it can be a major challenge to live with this sense of uncertainty," says clinical psychologist Dr. Robert Remien. "Yes, it's true that there's mixed HIV-status, but in every other sense, these couples are normal. The uncertainty comes from trying to deal with not only HIV but also all the normal things that a couple has to deal with. HIV is there but in many ways can be invisible, particularly in light of new treatments. They may ask, 'How does this affect us? Is one of us ever going to get sick?' There is the vague threat of illness, but it may not be actualized because there are no symptoms."
"When HIV is invisible, it can also be harder to maintain safer sex. Because couples may feel that nothing has happened yet, it can be so easy to just forget about it," adds Remien, who heads The Couples Project, a research program run by the HIV Center for Clinical and Behavioral Studies at the New York State Psychiatric Institute in collaboration with Body Positive.
Further, Remien noted, "When the positive partner is asymptomatic, it is easier to avoid talking about their feelings about HIV. This can be an obstacle to the development of intimacy and growth as a couple to not address an issue which is so emotionally powerful."
Remien notes that while powerful new combination antiviral therapies offer expanded hope to many living with HIV, they also raise new concerns. "These new treatments can have an impact on couples in terms of issues such as eating times, medication schedules, and socializing. If a couple is avoiding HIV-related topics and not dealing with the demands of one partner needing to take medication, this can be a real problem." Thus, while the old concerns of mixed-HIV status couples about HIV transmission and about caregiving in illness remain critically important for many couples, some also increasingly face problems in less charted territories.
For Becky Trotter and Io Cyrus, the challenge of maintaining open lines of communication without letting AIDS completely overwhelm their lives has been a constant, day-to-day concern, or what Io calls "a constantly shifting ground" throughout their year-and-a-half-long relationship.
Like Cindy and Luis, the couple must balance immersion and isolation. Both women work in AIDS-related fields: Io as Coordinator of GMHC's Lesbian AIDS Project and Becky as Assistant Director of Visual AIDS, an organization which promotes and archives the work of artists with HIV/AIDS. Formerly, Becky worked with the People with AIDS Coalition (PWAC-NY). Both have had many friends and colleagues with HIV and AIDS. Yet, as Io says, being in a lesbian relationship in which one partner has HIV can be "incredibly isolating." "HIV has become more normalized in many gay male and some poor communities. In the more middle-class, lesbian communities, which is where I come from, HIV is seen as being a non-issue for lesbian women."
Thus, while deeply entrenched in AIDS work and with a fully articulated vocabulary to discuss HIV-related concerns, Becky and Io still sometimes run into unexpected problems in communication. "I've noticed that when I'm in bed sick, it's less difficult to communicate because we're verbally dialoguing about the illness, and that seems easier than when nothing's going on," says Becky. "Because when nothing's going on, I don't think Io thinks about HIV because it's not in her body -- but I do. It's constantly on my mind. So it's those times when I'm feeling physically well that I need to be more aware and alert."
For Becky, the times that she's feeling well almost present Catch-22 situations in that she doesn't want to dwell on her illness, but has learned that "if I don't talk about it there's a little bit of a wall between us, and then I start to feel like I'm not as close to her, or I feel resentful, and she has no idea that this is going on, [that I may be] grieving the times that I didn't feel well and anticipating a time that I won't feel well." The only way out of this trap, Becky suggests, is be sure that HIV issues are woven into the everyday fabric of their lives, not dominating but also never slipping into invisibility.
Io agrees. "One of the best things for me that's come out of this relationship is learning how to better communicate with my partner, how to be really open about my feelings. I have a tendency to avoid painful or difficult issues, because the issues are so big they can be overwhelming: issues of death and dying and knowing that this is a progressive illness. Becky and this relationship have taught me how important it is to express feelings. The more I try to repress fear or anger, the more dissociated I get from everything and everybody in my life."
The couple's communication skills have been called upon many times in the two months since Becky began taking protease inhibitors. "I feel like there's a whole new rollercoaster. Am I sometimes feeling well, am I sometimes not; am I failing on some drugs, able to take others? There's Io saying, 'Did you take your drugs?' and my saying 'Gosh, I forgot.' There's her feeling fear, and my feeling like I'm being scolded; my saying, 'I can't take these drugs because they give me neuropathy,' and her saying, 'what do you mean you can't take them, are you sure?' So there are all these layers that aren't about HIV -- but they are. All the energy that we take talking about treatment options is the energy that we use to talk about the core issue -- that I have this thing in my body and that I could die because of it."
Io's approach has been to be empathetic towards Becky but also to be respectful of her partner's autonomy. "I've tried to be cognizant, aware, and supportive of her daily medical regimen. I've tried to remember to call her at 2 o'clock whether she's at home or at work, and no matter where I am to remind her to take her medicine. For the most part, her decisions around her health care are very much her own. I try to be very careful about not taking that on as my full-time responsibility and not undermining her decision-making by questioning her thinking. So I check in with her to see how I can be helpful."
Perhaps the greatest source of uncertainty faced by mixed-HIV status couples is how to face the future. For instance, Io notes that "Becky's been positive for probably over 14 years, so she doesn't think about the future. She's spent a good deal of her life preparing for dying, so she doesn't want to put off until tomorrow what she can do today. I, on the other hand, have always thought about the future: where I'm going with my life, where I want to be in five years."
Uncertainty about the future has been heightened by the introduction of protease inhibitors. As Remien noted, "Even though individuals have always varied in their disease progression, there was often an assumption that said: 'Well, I've got so many years and then I'll start to decline.' Now more people feel like maybe they'll be asymptomatic for the rest of their lives".
"For mixed HIV-status couples who've been together but perhaps haven't been getting along, dealing with normal couple issues unrelated to HIV and the hopefulness around new treatments can be a way for some to raise the issue of why they are a couple. If there's not dependency around illness, they may reevaluate why they're together. If they have a longer-term future, one or both may think 'maybe I can have a better relationship than I have now.' For couples who are functioning well and are happy together, new treatments can also open up new possibilities like 'maybe we do have a long-term future together, so how can we make our relationship even better?'"
Remien encourages couples to keep HIV in its place by working on all the other dimensions of the relationship, not solely on concerns around the virus. He emphasizes that it is crucial to keep in mind the needs of the negative partner as well as the positive partner, and that both have validity. The program headed by Remien, The Couples Project, offers eight-week workshops to male couples of mixed HIV status. It focuses on these issues by fostering skills in effective expressing, active listening, and problem solving designed to help couples to see their situation differently. His research also extends to examining how new treatment options affect couples' perception of risk and their actual risk behavior, as well as how HIV-negative partners can help their spouses maintain adherence to difficult antiviral medication regimens. (See "Simply Medical" for more about adhering to treatment regimens.)
Amidst all these challenges, some may wonder why people bother at all to work so hard to sustain a relationship with someone of opposite HIV status. It's a question for which Becky has a direct answer.
"I feel sometimes that I should just break up with Io," said Becky. "I feel that she shouldn't have to put up with this, that life would be so much easier if she didn't have to struggle with these issues. Who in their right mind would want to? But you can never guess who you're going to fall in love with. I was single and I swore that I was never going to get involved with someone again. It's so much easier to be single. Lonelier, yes, but it is definitely easier being single." Yet, she noted, "It's also easier to give up and die than to struggle. But it's so much more rewarding not to."