Stephan Lasher, 34, found love on a Florida highway. It was the summer of 1998, and he was hitchhiking in Sarasota, when rock-climbing instructor Giovanni Altare, now 47, pulled over. “Giovanni and I had flirted before,” says Stephan. “But that was just bar talk. When he saw me that day, he took me back to his place.” But on the drive to Giovanni’s home, Stephan froze. How could he disclose that he was HIV positive? Expecting the boot, he took a deep breath. Then, just as they pulled into the driveway, he blurted it out. “I didn’t expect him to still want me,” Stephan says, “but he was OK with it. I never went home.”
At first, Stephan couldn’t shake his disbelief. “The way Giovanni loved me scared me,” he remembers. “I didn’t think I deserved it. I especially didn’t believe I deserved someone who was negative.” But after seven years together, he’s convinced.
For some couples in which at least one partner is HIV positive, that heady first blush of attraction can prove wrenching. But disclosing your status is rarely the last drama. Along with the usual relationship angst, HIV can bring its own baggage—extra fears, struggles with illness—no matter how achingly awesome your love may be. Here’s how to lose that baggage—and float off into the sunset.
you love ME ?
Stephan Lasher’s negative self-image is an HIV staple. According to Nancy Beckerman, DSW, a couples counselor who wrote the book Couples of Mixed HIV Status—Clinical Issues and Interventions, people living with the virus sometimes “tend to emotionally withdraw out of fear they don’t deserve love.”
Meet Bryan Fleury, 39, who tested positive for HIV ten months before his 1992 wedding—then watched the marriage fall apart in just two years. “We were afraid to have sex the whole time,”he says. “I knew if I was to try again, it would have to be with someone who was HIV positive. I couldn’t live with myself if there was a chance of infecting someone else.”
After his divorce, Bryan set his sights on finding the perfect positive woman. But every time he liked someone, he stumbled on his own low self-esteem.
When he met Millie Malave, in New York in 2003, they connected right away—sharing not just a diagnosis but a demoralizing history. Explains Millie, 47, “My first marriage ended partly because my husband couldn’t deal with his HIV or mine. After he left, my biggest fear was that nobody would ever love me again.” Now both Bryan and Millie are finally ready to try anew.
“Each partner needs a place to go to talk about feelings,” says Dr. Beckerman—a maxim that rings doubly true if you’re struggling with a fear of death.
Consider Steve Balfour, 51, and Ron Rosa, 40.They met in 1997—a year after Ron nearly died in a hospice, saved by a nearly protease inhibitor. The couple first laid eyes on each other while volunteering at Atlanta’s AIDS Walk. “Ron walked up to the sign-up table, and that’s where it all began,” recalls Steve, who is also positive. Within three months, they were living together. Explains Ron, “I think we both felt that living with the virus, you can’t wait forever.”
Ron has been in and out of the hospital during his years with Steve. Last year, weak and bedridden, he began talking about selling his car. “I didn’t want to hear it,” Steve says. “He was telling me that he wasn’t going to be around much longer.”
Between health problems and AIDS activism, the two rarely get a break from HIV. “We live in a state of heightened awareness of both,” says Ron. “A normal couple will sit down and make a retirement plan. We make a daily plan—we have our bitchy little ritual of taking our meds every morning.”
Steve Tibbetts, who counsels couples in Minneapolis, warns seroconcordant( poz/poz) partners to beware of stress: “There’s this constant reminder that both people have HIV, especially when you’re on the cocktail. Every time you take your pills, you say, ‘We have HIV.’”
Instead, he suggests, “Call them vitamins. Then you can say, ‘We’re taking these to stay healthy.’ Or try something else to make the ritual more pleasant!”
And like it or not, he says, “A couple needs to talk frankly about death—and both need to come to grips with their fears and emotions about it.”
There’s a difference, however, between having to integrate your health issues and fears into a relationship—and having to nurse your partner through an HIV crisis. Louis Farmer, 39, married Derick Brown, 41, last year in an African-style ceremony in Cleveland. They’ve settled into a four-bedroom home and plan to adopt a child. “We’re perfect together,” Louis jokes, “He was raised Catholic; I was raised Baptist. He’s dark; I’m light. I’m positive; he’s negative.”
Derick happily helps manage the details of Louis’ HIV treatment. “I’m always reminding him of doctor’s appointments, making sure he gets there.” As a professional insurance biller, Derick helps with hubby’s health plan hassles too. And Louis loves the attention. “When I get sick, he makes me soup and tea,” he says. “It’s the ultimate form of making love.”
They have their moments, though. “Keeping up the support for him can be overwhelming,” Derick admits. And Louis can never quite explain things enough. “My biggest fear in the beginning was: Could Derick totally understand someone who’s positive?”
Michael Mancilla, co-author of Love in the Time of HIV—A Gay Man’s Guide to Sex, Dating,and Relationships, says, “HIV positive individuals sometimes find themselves doing reverse caretaking—having to do the explaining, the educating, the reassuring. Disclosure is just the first part of this. To have to do this with your partner can be draining.”
Stephan Lasher knows the dynamic well: “Sometimes I get resentful because there are things that are hard to explain to Giovanni—the depression, the fear that comes with HIV.” And while Ron Rosa admits he’s “the most difficult patient in the world” and has nothing but gratitude for his partner’s bedside care, he recalls, “There was a moment where we both broke down crying, and I told him, ‘I don’t want a superman, I want a lover.’”
Great, say our counselors, who are always goosing their clients to speak up for themselves. “Don’t be the angelic person with AIDS suffering silently and courageously and inspiring everyone around them,” says Christopher Murray, who advises couples at the LGBT Community Center in New York. “Don’t be the strong, silent partner with no complaints.”
Strong,silent nurses aren’t recommended, either. Susan Cornutt, 44, and her negative husband, Drew, 42, live in the Bible Belt, where “you have to be careful who you tell,” she says. But conservative neighbors had nothing to do with Drew’s stress over Susan’s repeated hospitalizations. “I have a hard time talking about my feelings,” he explains.
In 2003, after a week at Susan’s hospital bedside struggling to get her doctors to give her the meds he felt she needed,Drew broke down. “I got thrown out of a hockey game for starting a fight,” he recalls. “I just lost it, started screaming at people.” The incident helped push him into a support group.
Indeed, says counselor Tibbetts, “An emotional support system is sometimes more important for the negative partner.” Mancilla suggests that “the negative partner needs not only to find support—but also know about HIV and what’s going on with their partner.”
In health and in sickness
So what’s the secret to a happy relationship when one or both have HIV? It turns out the language of love is about the same for all couples: Be flexible, be reliable—and don’t let the virus become an excuse not to have fun together. Susan and Drew, for instance, are both serious hockey fans and have grown closer volunteering to fight Georgia ADAP funding cuts.
A big bonus, all agree, is having someone who is involved enough to understand HIV. “The main thing is, he’s there for me,” says Susan about Drew. “When I’m the sickest and the most scared,I can share my deepest fears with him.”
Then there are the relationships that HIV has deepened. Ron explains, “Living with this disease and with Steve has brought me a lot of vision and understanding. Before this relationship, I didn’t know what love was.”
Bryan Fleury & Millie Malave
Seek and you shall find
Bryan and Millie conquered self-doubt—by getting out there and taking chances. Now they’re united by, well, positive thinking.
In February 2003, they met at a Valentine’s Day dance at the Center for Positive Connections in New York. As Bryan recalls it, “She was sitting along the wall, watching the dancers. And the only open chair in the whole place was next to her. It was like something drew me there.” They started talking and that was it. “He got me laughing so hard, I couldn’t believe it,” says Millie. “I said, who is this guy?”
Neither fit the other’s search criteria. Millie counts off the differences:“He’s Irish-American; I’m Puerto Rican. He lives in Springfield; I live in New York. He’s seven years younger than me, too.”
But the two couldn’t be happier. “Sure I’m lucky,” says Bryan, “but it’s also because I worked at it. I really put myself out there–for years. We’re living proof that true love exists, even with HIV. But it’s not going to come knocking at your door.”
Louis Farmer & Derick Brown
I love you; now take your meds
Louis Farmer was at death’s door in 1997, diagnosed with full-blown AIDS and bilateral pneumonia. He says his mother’s prayers and, later, meds brought him back from the brink.
In 2003, Louis met his dream man—the tall, dark Derick Brown—through a personal ad on Blackplanet.com. They were married last summer (wearing these African robes) in a ceremony attended by both their families and about 100 guests. They’re very close and discuss everything—including the status of Louis’ health.
So far so good, but Derick takes issue with Louis’ decision to go off meds in 2003. “I just think it’s better to stay with the treatment,” he says. Louis shoots back, “My blood tests are good—I feel healthy!”
Louis says his husband’s worrying is sometimes too much. “When I’m not feeling well, he says it’s because I’m not on the meds. Then we have the discussion all over again.”
So how do they work it out? With a little chat after each of Louis’ doctor’s visits—and one key ground rule: “In the end, I make the final decisions,” says Louis. Derick concedes, “It’s his body, and I have to respect that.”