When Lillibeth Gonzalez learned she had HIV in 1992, she felt like her life was over. “The nurse came in, threw a chart on the desk, and said, ‘You tested positive.’ I didn’t know what to do. My whole body turned cold.”
Her case quickly turned into AIDS. Gonzalez’s T-cell count dropped to zero, and she was in and out of the hospital four times with pneumocystis pneumonia (PCP), plus tuberculosis and other opportunistic infections. At one point, she weighed only 90 pounds and had to be carried down the stairs. “I was on 22 pills a day, starting with AZT–but my doctor did not give up hope for me,” she said.
Gonzalez said GMHC helped her survive in those early years. “I was lost–there was no research and no treatment,” she said. “Thankfully, the gay community embraced me at GMHC. They became my chosen family.”
AIDS killed her two brothers–but Gonzalez was determined to live. “I was not going to allow HIV to take me away from my son,” she said. “Chris was my biggest inspiration–and still is today.”
At 66, Gonzalez is anticipating the birth of her first grandchild as she celebrates her 29th year of surviving and thriving with HIV. People aging with HIV now make up the fastest-growing HIV demographic and have become a substantial part of the GMHC community. Of more than 107,650 New Yorkers living with HIV, 56% are age 50 or older.
Gonzalez first came to GMHC as a client, and then in 2006 joined the staff as a community health educator. Most recently, she’s created and facilitates a support group, “Thriving at 50 and Beyond,” on HIV and aging. Along the way, she has won six awards for her work and been featured on the cover of POZ magazine, as well as CBS New York.
“GMHC saved my life. Everyone there accepts you as you are,” she said. Gonzalez does the same with her own clients. “I meet them where they’re at. I help them see the abilities they have, so they don’t feel like they’re less than. I don’t want anyone to feel like that.”
Gonzalez remembers the terrible stigma around HIV and AIDS early on. “In those days, if you were HIV positive and a woman, people thought you were either a prostitute or an IV-drug user.”
But she contracted HIV from her husband. When they started dating, he didn’t tell Gonzalez he had it. “I was so angry at myself for not being aware and informed–and using protection,” she said. “Nobody told heterosexual women that we were at risk too.”
In the first years after her diagnosis, she stayed in her room alone. “I didn’t want anyone to know. I was so gray and skinny and lifeless. People would say, ‘Oh, she has the monster,’” Gonzalez said. “I went from someone who used to model, with a full, active life, to someone who couldn’t do anything.”
Through support groups at GMHC, Gonzalez said, “I started learning about HIV and how to take care of myself. Life came back to me. I was in a community where we were all dealing with the same thing and helping each other.”
Gonzalez’s son was nine when she was diagnosed with HIV, but it took her a few years to tell him. He encouraged her to help others as a way of coping, she said, and she started volunteering at GMHC. “Something lit up inside me.”
“My goal is to end new HIV and AIDS infections,” Gonzalez said. Even with the major advances in HIV/AIDS treatment, she said, stigma and denial still prevent people from getting tested, treated and staying in treatment.
She is dedicated to ending HIV stigma in the Latino community. In New York, the rate of new HIV diagnoses is 6.3 times higher for Latinos than whites. “In the Latino community, people don’t want their neighbors to learn they’re getting tested or going for treatment,” she said. “I can really connect with them.”
Part of her mission is emboldening women to take control of their sexual health. Until the Covid-19 pandemic, Gonzalez had been visiting hair salons in the Latino community for over a decade, handing out pussy packs with lube, condoms, finger cots and dental dams.
Gonzalez also talks to the gay youth she’s taken under wing about HIV prevention and treatment. “They call me Fierce Motha,” she said. “If they’re newly diagnosed, I tell them: “You can survive this and live a full healthy life–but you’ve got to take your medication every day.’”
Gonzalez’s own viral load is at the undetectable level, so it’s untransmittable. “But you can’t skip a dose,” she said. “I’ve lived with this and survived for 29 years–and I’m still doing it. It’s been a struggle–something always comes up!–but I’m doing great.”
Photo (top): Lillibeth Gonzalez today.