One's positive, the other's negative, but the relationship has an identity of its own
Opposites attract. This axiom of romance predates AIDS. When two people have different HIV statuses, the dangers and difficulties love has to conquer are especially poignant.
Protease inhibitors offer hope to many. When once death seemed imminent, now the new drug combinations promise a future not just brighter, but real. The sense of sudden possibilities has dramatically altered the lives of many people with HIV-and many relationships. "The hope and health is happening not only to each person but to the relationship," says Dr. Robert Remien, a psychologist at the New York State Psychiatric Institute. "Some couples can now imagine years together instead of months." This allows a focus on other aspects of the relationship in addition to the disease, Remien notes. "The fears of illness and death are not removed, but for some they are put on the back burner."
Vulnerability is a hallmark of mixed-status relationships. Negotiating safe sex in order to protect the negative partner is only one of many essential issues. The HIV positive partner may fear getting sick, becoming a burden or being abandoned, while the negative partner worries about being left alone when his or her lover dies. Serodiscordant couples have to address how and when to disclose that one of the two has the virus. Doubts may be raised about the partnership, and support withheld, causing the couple a particular sense of isolation. Communication is critical but complicated: Partners may wish to avoid such hard questions as the effect of illness progression on sex.
"My family couldn't understand why I would marry a woman with AIDS," said Sean McKay, a 37-year-old Chicago musician. "They were upset. They just assumed I would get the virus and die. And the only thing I was worried about was that Kelly might die-the new drugs might not give us enough time to build a life together." Kelly Williams, 33 and HIV positive for five years when she met McKay in 1994, has other concerns. "I worry about how we will deal with other people, what happens if we want kids, how we'll cope if I get sick. The drugs give you hope, but the fear remains. I know I could still die-that never really goes away."
Ironically, the promised gleaned from protease drugs can make mixed-status partnerships even more dicey. Until recently, the positive partner may have known how limited his or her time was, while the negative partner may have known caregiving wouldn't go on indefinitely. Now PWAs can be brought back from the brink of death and live for years.
"It adds a new element of uncertainty," notes Bill Collier, a 31-year-old former high school teacher who has been with his lover, Diego Rohas, for seven years. "We spent months preparing for my death, saying goodbye. The new drugs were an adjustment for both of us-suddenly I was going to live. Although I'm better, I'm not able to work. So it's still a struggle."
Remien's ongoing research into serodiscordant gay male couples indicates that even with the new combination therapies, HIV remains a major issue. Most believe that getting HIV is still serious, but view the protease inhibitors as a significant advance. More than half say the treatments make them more likely to stay in the relationship. Indeed, most couples hoped they would have more time together. And while better than half believe that the drugs may reduce risk of HIV, nearly all say this doesn't lead to greater risks in sex.
But for other, less committed couples, says Remien, the protease era offers other alternatives. "The new hopefulness may facilitate the breakup of couples who are having trouble anyway," he explains. "The positive person feels he now may have a longer future-and therefore time to find a better relationship. The negative person can leave because his partner isn't likely to need a caregiver in the near future. There's a re-evaluation."
Advice for serodiscordant couples? Talk, talk and talk-to each other as well as to others in the same situation. But while most AIDS service organizations offer an array of support for individuals, workshops specifically for mixed-status couples are harder to find. Remien and other experts say the effort is worth it.
Until there's a cure though, coping with the conflicts and constraints is vital to maintaining balance. But as McKay says: "Trite as it sounds, 'in sickness and in health' is in the marriage ceremony for a reason. All we can hope for is as much time as there is."