Tension is mounting within the close relationship between HIV-positive New Yorker Brenda*, 52, and her HIV-positive daughter, Maria*, 22. Brenda, diagnosed in 1991, didn’t learn she’d passed HIV to Maria perinatally (in the womb) until Maria started high school and was tested. Today, both mother and daughter take HIV meds and are in good health. But lately, Maria’s been doing some public speaking about her status and disclosing to more people in her life. “This has been a good year for me,” Maria says. “I told a lot of my close college friends.” But that’s not cool with Mom, who’s revealed her status to virtually no one beyond her HIV support group. “For [Maria] to disclose automatically brings me out,” says Brenda. “That may be selfish,” she adds, “but I remember when there wasn’t even a name for HIV. I remember the stigma, the taboos.”
In the United States today, fewer families are dealing with perinatal transmission (see “You’ve Come a Long Way, Babies"). The families that do exist face special challenges, says Alice Myerson, NP, of New York’s Montefiore Adolescent AIDS Program, where children who were born HIV positive are now in their teens or early 20s.
Many face scenarios like Brenda and Maria’s, where either parent or child is more “out” about HIV than the other. POZ columnist Shari Margolese, for example, is very publicly positive. She speaks about HIV under her maiden name (Margolese), while her positive 15-year-old son, who goes by his father’s last name, doesn’t want even his closest high school friends to know his status. “He’s afraid someone’s going to figure out [from knowing about me] who he is,” says Margolese. Her son says it’s tough to be “out” only to some close family members, but he doesn’t dwell on it. “Don’t make your whole life based around the fact that you have [HIV],” he says.
That’s basically why Brenda, a workplace manager, hides her status. “I don’t want 70 people reporting to me and knowing about my personal life,” she says. Some of her reluctance about Maria disclosing may, she admits, stem from guilt. “As a parent, you want the best for your children,” she says. “You don’t want to be the one that created a situation for them.” Myerson says it’s common for moms (and some positive dads as well) to feel intense guilt and shame that they passed the virus to their child, even unknowingly.
Now that Maria’s an adult, though, Brenda knows she can’t stop her from disclosing. Maria, meanwhile, says Mom is too set in her ways to talk things through with her in counseling. “Our not talking through it,” Maria concludes, “has helped me decide that I don’t want to hide [my HIV].”
*Not their real names
Alice Myerson, NP, of New York’s Montefiore Adolescent AIDS Program, says talking about parent-child HIV conflicts is key to living in peace, harmony and health. She offers these starting points:
- Express your problems and listen to one another. Don’t bottle up emotions; be honest and recognize each other’s feelings.
- Parents: How you deal with your HIV influences how your child deals with his or hers. An inability to handle guilt gets communicated to the child. When parents are able to manage their health, their kids have a much better chance at doing the same.
- Parents and kids: Consider counseling and support groups to handle difficult issues. Social groups for HIV-positive teens can be especially helpful. But for some people, just getting on with life is how they cope.