With dozens of her friends dying by suicide and from complications brought on by HIV and AIDS, Maria Mejia is hoping to inspire others with the infection to embrace life and hold on to hope — coming 30 years after her own diagnosis.
While Mejia kept her diagnosis private for many years, she has since become one of the most prominent voices within the community, especially on social media, where she puts her HIV diagnosis front and center by essentially making it her middle name — “Maria HIV Mejia.”
The 45-year-old from Sunrise, Florida, is the founder of one of the largest support forums on Facebook for people living with HIV and AIDS, and recently participated in an inspirational video project with the Foundation for AIDS Research (amFAR). The series, called EPIC VOICES, features a collection of diverse people who share their experiences HIV, to raise awareness for the infection that has claimed hundreds of thousands of lives in the United States since the 1980s.
Mejia was diagnosed with the infection in 1991, three years after she believes it was passed on to her from a boyfriend — the leader of a neighborhood street gang — who was the only person she had been intimate with at the time.
“When I found out, it was a week after my 18th birthday,” Mejia tells PEOPLE. “So obviously, even in 1991, it was a death sentence, and I felt very alone.”
Because of the stigma around the diagnosis, Mejia was advised by her family to keep the news among themselves.
“The only one that knew was my mother and my little brother,” Mejia recalls, “Though I know she did it to protect me, she said I shouldn’t tell family or friends that I had this, because they would discriminate me.”
The loneliness was only amplified by her not being able to easily find support groups or foundations for help, as this was long before the internet was as accessible as it is today.
“I was in it by myself,” she says. “It was not easy at all, and my mom, my younger brother and I, we decided to go back to my country, Columbia, I decided to go back to die, to stay with my grandparents, so I could be their caregiver.”
While in Columbia, Mejia took the HIV medication that was available in the country at the time, and used much of her free time researching the infection she believed would claim her life.
“I would go to the student medical libraries every day to study, even though I wasn’t studying to be a doctor,” she remembers. “I just wanted to get my hands on every information that I could get as far as this condition.”
This would later prove useful when she became an activist, she says.
She returned to the United States after a decade and was placed on new treatment — just weeks later, the infection was deemed “undetectable” in her body. It does not mean she’s cured, but it’s the best news she could hope to get.
In the years since, Mejia has worked to reach others with HIV and AIDS to show them that there is hope, and to give them the help that she would have liked when she was diagnosed so many years ago.
While there have been improvements to HIV and AIDS treatment and more and more people are surviving long past the expectation two decades ago, becoming a long-term survivor has its own set of difficulties, Mejia says.
“Thirty of my friends died last year alone. You can have survivor’s guilt, anxiety, and PTSD from being a longterm survivor,” she explains. “They describe it as if we’re coming back from a war where we have lost so many people and so many friends.”
From 2010 to 2015, annual HIV infections in the U.S. dropped some 8 percent, the Centers for Disease Control reports. But even with the reduction, there were more than 38,000 new HIV infections in 2015 alone.
With still so many people becoming infected, and many others still living with it, Mejia is continually working to share her story and motivate others.
“Just because you got diagnosed with HIV, especially in these times, it does not mean that your life is over,” she says. “You can live, you can work, you can thrive, you can survive, you can get married.”
“I try to live my life as best that I can. I believe in life, we have choices,” Mejia adds. “You either put yourself on the bed to die, or you continue to choose to fight, and then when you continue to choose to fight, then you fight for others.”