A lot of times when people test positive for HIV, they think it’s a death sentence—I know I did for the first couple of weeks after my diagnosis. But dying wasn’t my greatest fear. I was most afraid of telling my mom.
I come from a family of six girls, and the two oldest passed away six months apart from AIDS-related complications. I didn’t want to tell my mom that half of her girls—three out of the six—had contracted HIV. So I waited for a year. And it turns out that was a pretty smart way to go about it; it allowed my mom to see that I’d been living with the virus for a year and was perfectly healthy.
In fact, shortly after starting my anti-retroviral regimen, my Cluster of Differentiation 4 (CD4) T cell count, which measures how well my immune system is working, went back up to over 1,000. When I first tested positive, my CD4 cell count was at 236. When the CD4 cell count gets below 200, you’re at a serious risk of developing an opportunistic infection.
At the time of my diagnosis, my long-term boyfriend must have had a pretty low CD4 count, because he developed pneumocystis (PCP) pneumonia, and that’s when I started to suspect that he, and I because of my relationship with him, might be HIV positive. Because of my sisters, I knew that PCP pneumonia was one of the common opportunistic infections in people with HIV/AIDS. But according to my boyfriend, he had not been tested for HIV or herpes and refused to get “that stupid man-made test.” But I knew I needed to be tested.
I had to wait two weeks for the results—the longest two weeks of my life.
When the test came back positive for HIV and I told my boyfriend, he still wouldn’t go to the doctor. It turns out he’d already had the test five years prior, knew he was HIV positive, and either refused to believe it or refused to disclose it. About the time I worked up the courage to tell my mom about my HIV positive status, I worked up the courage to leave this man behind.
That’s when I started working in the HIV/AIDS field, too, so that I could share my story, which is this: I have been living with HIV for nearly 14 years. And I do mean living. I don’t mean just scraping by, in and out of the hospital with infections. I’m a mother to four, a grandmother to seven, and a peer counselor to countless individuals newly diagnosed with HIV. I’ve stuck with my treatment every day since I started it, and I have a healthy CD4 count and a viral load that’s undetectable.
I am living proof that testing positive for HIV is not a death sentence, and I will shout it from the rooftops. I share my story every chance I get—in campaigns, on radio commercials, on billboards. I would share it sitting on a brick outside the corner store—wherever it’s needed. My message is this: know your status. Don’t be afraid to get tested, because not knowing your status is far scarier than learning you are HIV positive and getting treatment.
Freda Jones, 46, lives in Atlanta, GA and has been living with HIV for 14 years. For the past eight years, she’s served as a peer specialist for newly diagnosed individuals with HIV.
