HIV/AIDS advocate and her family work to promote testing and fight stigma. ‘I feel like I’m not just existing, that I’m living.’

Eighteen years ago, Chatrivia Kennedy learned she was HIV positive when her partner was hospitalized with an HIV-related illness. She was eight months pregnant.

She suffered in silence for many years, but eventually gained the courage to disclose her status on World AIDS Day 2018 in a video posted on YouTube, 14 years after her diagnoses.

Four years later, the power of going public was on full display Saturday when friends, family and people hoping to learn more gathered at Lawndale’s Jesus Word Center to talk about how the deeply stigmatized disease has touched their lives. Openly sharing about the disease has changed their lives, those gathered said.

Chatavia Stanback, 15, shared that there was a disconnect with her mother because of the secret Kennedy had kept. Kennedy didn’t tell her children about her condition for years, Stanback said.

“It was like I didn’t have access to her,” Stanback said.

Kennedy agreed she was “emotionally detached” from her children before she told them about her HIV status.

When Kennedy finally disclosed her status, Stanback at first wondered if she was safe, but quickly learned that the virus was controllable and she was protected from it.

“The more you know about it, the less it affects you,” Stanback said, adding that sexually active people should regularly get tested for sexually transmitted infections. Hers wasn’t the only family touched by HIV.

Curtis Nugin, pastor of Loving U 4 Life Ministries, thought about his two uncles and a cousin who had HIV as he hosted the event Saturday. One had died of AIDS-related complications, he said.

Kneeshe Parkinson drove from St. Louis to attend. She has lived with HIV for 25 years, the community organizer shared Saturday.

Ron Carson came from Muskegon, Michigan, because he couldn’t pass up the opportunity to talk openly about living with HIV. The 41-year-old felt hopeless when he was diagnosed eight years ago. He faced stigma in his personal life and “built brick walls” to suffer alone, the father said.

But then he found others living with HIV on the internet. He saw people who had contracted the disease before he was even born and are still living happy, healthy lives. A turning point was when he stumbled across Kennedy’s YouTube videos discussing her condition, he said.

“It’s the difference between light and darkness,” Carson said.

He knows all kinds of people — babies, straight people, men and women — can live with HIV, that people with the virus don’t usually look like they have it and that people with HIV are now living longer and healthier lives, he said. “You can’t hide and heal,” Carson said.

The stigma around HIV has sustained misconceptions even as the outlook for the virus has changed, he said. Although he has suffered mentally because of other people’s views of the disease, he has never had any physical issues related to HIV because medicine has kept him healthy, he said.

The Centers for Disease Control and Prevention reported in 2020 that 68% of people living with HIV are virally suppressed, which includes 65% of Black patients, 71% of Hispanic or Latino patients and 68% of white patients.

The goal of the CDC’s Ending the HIV Epidemic in the U.S. initiative is to reach 95% viral suppression by 2030.

In Chicago, Kennedy is doing her part by speaking out.

Since going public four years ago, Kennedy said, “so much has changed in my life.”

“I have done everything I aimed to do. I started a nonprofit and recently became certified in HIV testing and counseling to join the fight against HIV/AIDS,” Kennedy said. “I went from being sad and depressed to living in the light. I thank God for keeping me.”

Before the event Saturday, Kennedy prayed, asking God to guide her in writing a speech.

“It was a progress to the promise God gave me that my pain would become my purpose. HIV was the vehicle to get me to ministry. Love heals you so God can be revealed through you,” she said.

HIV also led the Roseland mother to become an author, recently publishing the book “Divorcing HIV.”

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She is working on publishing other books, including one about dating with HIV, an anthology about domestic abuse written with women from seven states, and “Love Is,” a collection of poetry set to be released on Valentine’s Day.

During the event, Kennedy asked participants to sign a certificate agreeing to join the fight against HIV. As of Monday, four had agreed.

Among the speakers at the event Saturday was Kennedy’s cousin Dannette Salaam. For years, Kennedy felt a lack of support after publicly announcing her HIV status. Early on, she told Salaam, who worked in HIV outreach.

“(Kennedy) looked at it like her life was over. I didn’t want her to feel that,” Salaam said.

But things have changed since Kennedy began talking openly about her condition, Salaam said. “She’s living,” Salaam said.

Now, speaking about her condition gives Kennedy purpose, even as medicine preventing complications allows her to sometimes forget she has HIV, she said.

“It makes me feel alive. I feel like I’m not just existing, that I’m living,” Kennedy said. “I’m not in silence. I’m not sad and quiet and scared. I’m speaking in bold.”