Life is pretty normal these days for 26-year-old Brenda Emily. The central Pennsylvania resident and her boyfriend became parents to a baby girl, Emmy, in late 2022, whom Emily breastfeeds—something her pediatric team didn’t want her to do. “They said to me, ‘You can’t do that—we’ll call child services on you,’” she says. “I told them it was safe because I’m on HIV medications and undetectable. Then, I got a new pediatric team.”
Emily is living with HIV as well as moderate cerebral palsy. But unlike most people under 30 with the virus, she contracted it not via sex but in the womb. Her biological mother and father died of AIDS-related illness. She was raised by adoptive parents who, upon her biological dad’s death when she was 6, finally explained what he had died of and why she had to take meds. “After that, I wasn’t allowed to talk about it,” she says. “I was told to hide it and never bring it up.”
However, once a family member leaked the news in town, Emily suffered yet more stigma as a schoolkid. “I had a few supportive friends, but there were also bullies who would mock me.” Plus, the HIV meds Emily took as a child—which are now outmoded—caused hollowness in her face and limbs. “Not only did many people know I had HIV, but I actually looked like I was dying.”
All that made coming of age tough. “Sexuality didn’t exist for me,” she says. “I was convinced that if they touched me, I’d kill them—or that they wouldn’t want me anyway.”
Then, at age 21, she joined a support group for folks with HIV. She was the only woman among gay men, but the group motivated her to disclose her status, which she did on Facebook in 2015. “I felt free,” she says. “Like I could breathe.”
Around then, she learned about Undetectable Equals Untransmittable (or U=U, the fact that people with undetectable viral loads don’t transmit HIV to sexual partners). She also entered a clinical trial for cosmetic facial fillers and finally got on an easy-to-take HIV regimen—all of which were healing. And she plunged into activism. She has done numerous interviews about growing up with HIV and is involved with the Boston-based young adult group Next Step.
“My life felt controlled by HIV for so long,” she says. “Today, I’m starting to get to know my whole self. I’m strong and determined.” Enough to tell those on her pediatric team that they were wrong about breastfeeding. And she was right. Recently, the Centers for Disease Control and Prevention announced that even though the chance of a mother on meds passing HIV to her child via breastfeeding is not technically zero (it’s less than 1%), pediatric care teams should support mothers who choose to do so.
“I’ve learned that everyone matters, but no one matters more than you,” she says. “And I mean that in the most humble way!”