Love and HIV: Couples forge relationships despite challenges
Kathy Jacobs-McLoyd didn't expect to fall in love with someone with HIV. But when the man she had recently spent time volunteering with in Kenya sent her a six-page love letter, she opened up to the possibilities.
"One day early on, I turned to look at you or say something and my heart just kind of skipped a beat, it fluttered in my chest … and just as quickly rose to my throat leaving me momentarily speechless," Peter McLoyd wrote.
Within six months, they were married. Now, they are among the country's growing number of HIV serodiscordant couples — or, more simply, "magnet couples" who are attracted to each other even though one partner is positive and one is negative.
As the HIV epidemic moves into its third decade, people who are infected with the virus are living longer, healthier lives, public health officials say. As a result, they are dating, falling in love and forming families, sometimes with a partner who does not have the virus.
Their stories underscore the power of love to conquer fear. But such relationships can bring significant emotional challenges.
For the person without HIV, there is constant worry about the health of his or her loved one. For the positive partner, there is the fear of unintentionally passing on the infection. And for both, there is often anxiety about how friends and family will react to the relationship.
Jacobs-McLoyd, 56, was moved by the love letter she received, but it went unanswered for several days. She knew McLoyd had HIV — he became infected as a result of intravenous drug use about 10 years ago — and she wasn't sure she could get involved.
"Did I want to? Could I? What does this mean?" she remembers nervously asking herself.
In the end, she decided not to let a virus get in the way of love. The couple sealed their commitment with a City Hall marriage in 2004, followed the next year by a traditional African ceremony in Kenya.
"I knew him already," she said. "I knew his character; people loved him. I thought he was a good catch. He was good-looking and sexy, and I thought, 'Why not?'"
In some cases, the HIV-negative person goes into the relationship not knowing their partner is infected — either because the information is not disclosed right away or it is not yet known. The eventual disclosure can be an emotional land mine.
During the dating stage, the biggest hurdle for the HIV-positive person is when to tell the prospective partner, said Celeste Watkins-Hayes, an HIV- AIDS researcher and faculty fellow at the Institute for Policy Research at Northwestern University.
Later, as the relationship becomes more committed, couples often worry about whom to trust with the information, she said.
That issue can remain a sticking point until the couple come to an agreement about which family members and friends should be told, said Rae Lewis-Thornton, an HIV-AIDS activist in Chicago who has lived with the virus for 24 years.
"For many people, it is a difficult relationship because it comes with guilt on the infected person's part. There is always this layer of stigma and shame, which is very real in this country, particularly in the black community," said Lewis-Thornton, who was married to an HIV-negative man for four years before divorcing. "That is a barrier that must be overcome before couples get to a really good place and can be comfortable."
Joann Montes, 46, of Chicago, said her boyfriend of eight years doesn't want to tell his family she is infected. As she has become more open about it — she was featured Monday in the Tribune in a story about living with HIV — the public disclosure has put more strain on their relationship.
"We were friends before we dated and he knew about my status, that was never a problem," she said. "The problem came when other people found out we were dating. There were friends who thought it was not a good idea for him to be dating me. They made comments like: 'You can do better than that.'"
The remarks stung, especially because she was trying to come to terms with her HIV, she said.
Such couples also face the challenge of protecting the uninfected partner during sex.
"Couples have to come to an understanding about what safety means in the relationship, and they have to follow it to the letter of the law," Lewis-Thornton said. "That can be harder as you become more comfortable in the relationship. If the condom breaks in the height of sex, do you stop and risk him being angry with you?"
Debbie Rivera's husband, Mike, gets tested regularly for HIV and is uninfected, and the Chicago couple usually practice safe sex. But they agree it is a challenge.
"There are times when we're in the heat of the moment and we don't take precautions," said Debbie Rivera, 31, who tested positive for HIV in 1999. She said that because of antiretroviral medication, the amount of virus in her blood is at undetectable levels.
The chance of transmitting the virus is greatly reduced when antiretroviral drugs have lowered the amount of HIV in the blood to undetectable levels, according to the Centers for Disease Control and Prevention. And for biological reasons, women are less likely to transmit the virus than men. But health experts say the virus can still be transmitted, and they recommend regular condom use.In Illinois, more than 32,000 people are living with HIV or AIDS, according to the latest data from the Illinois Department of Public Health. Chicago's HIV infection prevalence rate of 761 per 100,000 population is about three times greater than the national rate of 275 per 100,000.
"I know more and more people who are choosing HIV-infected partners," said Lora Branch, former director of the division of sexually transmitted infections and HIV at the Chicago Department of Public Health. "It's not that unusual anymore."
It is difficult to determine how many people with HIV are part of serodiscordant couples, because little research has been done, said Dr. Deborah Cohan, associate professor of obstetrics, gynecology and reproductive sciences at the University of California at San Francisco.
"It's a hidden population," she said.
But a study published in 2001 in the journal Family Planning Perspectives found that about half the HIV-positive men and women who were surveyed about their desire to have children reported their spouse or primary partner was HIV-negative, Cohan said.
Branch said she believes gays and heterosexuals make up an equal number of magnet couples, who span the demographic spectrum of race and class.
"The relationships that are most likely to last are ones where the healthy partner goes into it fully knowledgeable about the health risks, the medical challenges and other issues involved with being HIV-positive," said Watkins-Hayes, who is also an associate professor of sociology and African-American studies. "Those who enter these relationships unprepared for what it means are the ones most likely to fail."
The McLoyds, who live in south suburban Matteson, said they decided to be interviewed about their relationship because they wanted to tackle the stigma surrounding HIV. McLoyd is consumer development and advocacy coordinator in prevention and education at the CORE Center. Both have two children from previous relationships.
"We wring our hands about stigma," McLoyd said, speaking about advocates and people with HIV, "but we don't do anything about it. By putting a face to it, you reduce the impact."
Relaxing at home with their Great Dane, D'ogie, the McLoyds are comfortable in their relationship. But Jacobs-McLoyd had not told close family members about her husband's HIV diagnosis before agreeing to participate in this story. The thought of such a conversation caused her to take nervous, deep breaths.
"In the back of my mind, there was this fear they would treat him differently when they found out he was positive because of all the stigma," she said. "I didn't want to make a choice between family and my husband."
Jacobs-McLoyd said she sees she hadn't given her relatives enough credit. "I got really good feedback from those I've told," she said.
The McLoyds say more resources should be available to support couples in their situation, and they want to form a support group.
Jacobs-McLoyd said that although she fights the urge to be overprotective about her husband's health, the couple's relationship is more typical than not."(HIV) doesn't define who we are," Jacobs-McLoyd said. "We are just a married couple like any other couple.