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Love in the time of HIV/AIDS

By Madison Park, CNN
Shawn Decker and Gwenn Barringer have been married for five years. Decker is HIV positive.
Shawn Decker and Gwenn Barringer have been married for five years. Decker is HIV positive.
STORY HIGHLIGHTS
  • HIV/AIDS is no longer a terminal illness, but a chronic disease that is treatable
  • Major issue for people with HIV/AIDS is finding romantic partners
  • Serodiscordant couples can conceive and have children without infecting partner or baby

(CNN) -- From the beginning, it seemed an unlikely match.

Shawn Decker sported blue hair and discount orthopedic shoes. Gwenn Barringer competed in local Virginia beauty pageants and wore sashes and tiaras.

Over movies, ice cream dates and dinners at Applebee's, their friendship gradually blossomed into a romance. Barringer was smitten by Decker's wit and humor. Before meeting him, she never fathomed she'd fall in love with a man who had HIV.

"I didn't think having what I thought was a difficult extra strain on a relationship would be worth it," Barringer, an HIV/AIDS educator said. "Then you meet someone who you really like, and that changes your perspective. I would've never imagined it."

Married for five years, they are a serodiscordant couple, meaning one partner has the virus and the other does not.

"What we're seeing is it's no longer a terminal illness. People survive well with HIV," said Dr. Mark Sauer, director of the Center for Women's Reproductive Care at Columbia University Medical Center. "There's a lot of discordancy. The majority of patients we've treated are males with HIV with partners who are HIV negative and want to stay that way."

According to the Centers for Disease Control and Prevention statistics from 2006, about 1.1 million people in the United States were living with diagnosed or undiagnosed HIV/AIDS,

After overcoming the shock of the diagnosis, people with HIV/AIDS often agonize over relationship issues and the fear of loneliness and rejection. Who will love them with this condition? Can they have a normal, functioning relationship? What about sex?

It's a turning point from previous decades. Life expectancy for a 30-year-old person treated for HIV is 69, said Dr. Charles Hicks, an associate professor of medicine in infectious diseases at Duke University Medical Center in Durham, North Carolina.

"Now, we talk about how you live life, your health in the long term," Hicks said. "Sexuality is an important part. How do you do that ... when one person has HIV and their potential partner does not?"

It's a question Decker asked himself growing up. Decker, who is a hemophiliac, contracted HIV through contaminated blood products when he was a child.

"How was I going to find somebody who could look at me like they look at anybody else," he said.

Complicated by his health and teenage confusion, his early relationships ended badly. At the age of 20, Decker decided he was going to be open about HIV. He started blogging about his life.

"The best decision I ever made was to talk about HIV," he said. "That's how I met my now-wife, Gwenn. She got in touch with the local AIDS service organization and was looking for someone to talk about an educational project and we were put into contact. We became friends and fell in love. It's ironic. I thought HIV would prevent me from finding love."

It's ironic. I thought HIV would prevent me from finding love.
--Shawn Decker
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It wasn't exactly a seamless love story. Barringer had her reservations because she was dating someone else.

"Having feelings for Shawn, I fought them for a while," she said. "I was the barrier in the beginning and hemmed and hawed for a while."

Because of her background in HIV/AIDS work, Barringer said she wasn't too worried about the infection, but she consulted another serodiscordant couple to ask questions.

"When I started to have feelings for Shawn and realized I liked this person, what is this going to entail for me to be in a relationship with someone who is HIV-positive? I was able to go to them and say, 'What's the deal?' That was helpful."

She finally decided, "This person gets me. I had to give it a shot and see where it could go. I felt like I'd regret it if I didn't."

Decker wasn't on any medication and started getting seriously ill when his immune system dramatically weakened.

"A lot of people freak out and run the other way as fast as possible," Decker said. "Our relationship, day-to-day, we got over the hurdle, and it brought us a lot closer than other couples."

Decker wrote about their courtship in his autobiography, "My Pet Virus: The True Story of a Rebel Without a Cure." Nowadays, they travel around the country speaking on college campuses, talking about their relationship and HIV/AIDS and answering all the kinds of questions.

Like: How did Barringer's family react? Not thrilled at first, but her mother gets along well with Decker, and they have the same quirky sense of humor, Barringer said.

And: How do they have sex? They use condoms as their primary prevention strategy, the couple said.

Duke University's Hicks strongly recommends condom use, but said the reality is that couples who have been together for a while don't always use them.

Hicks also noted that evidence shows lowering the viral load through HIV treatments and drugs could decrease risk. But this does not give HIV-couples "free reign to behave irresponsibly."

"We cannot guarantee that the uninfected person will not become infected," said Hicks, but condom use and keeping the viral load low minimizes the risk to nearly zero.

It's also possible for serodiscordant couples to conceive a child without infecting either the partner or the child with the virus. For 12 years Sauer, a professor of obstetrics and gynecology at Columbia University Medical Center, has used a sperm-washing technique that separates the sperm from the semen, which carries the virus. Then the sperm is injected into the egg.

Sauer says he sees at least one serodiscordant couple a week for the procedure. The couple's reason for wanting children is the same as anybody else's, he said.

They tell him: "We love each other. Having a family and children are important. I plan on being here, and I don't plan on dying. I have a good prognosis."

Barringer and Decker say neither really has the parental drive, but recently they've been spending time with their 15-month-old goddaughter.

"It's been interesting," Barringer said. "That's the closest interaction we've had with a baby over an extended amount of time. It's opened our eyes and made us reconsider a little bit, but not enough to run out and do anything about it today."