One Woman's Story of Living With HIV

How HIV Changed One Life Forever

Learn about one woman's mission to educate people about HIV and fight the stigma of AIDS.

By Madeline Vann, MPH

Medically reviewed by Lindsey Marcellin, MD, MPH

When Gina Brown got the call letting her know something was wrong with her prenatal blood work and was asked to come back to the clinic to discuss the results, she thought her friends were playing a joke.

It was April Fool’s Day, 1994, and the 28-year-old expectant mother was sure that if she went to the clinic, her friends would be there to tell her she was having twins or something equally “foolish.” But the news she received when she arrived at the clinic three days later as requested was anything but funny. One of the blood tests had come back positive — for HIV.

“I kind of knew something was up because the lady wouldn’t look at me,” she says, and then she heard the news that changed her life: “You have AIDS and you’re going to die.”

“I can remember I fell into a chair, because I was standing up,” she says. The days that followed were blurred with tears and fear. “It was the most shocking thing I could have heard at that time. I didn’t know a lot about HIV, all I knew was what I saw in the ‘80s, which was a lot of men who got sick and died. It was just amazing that the message still wasn’t there for us women, even in the ‘90s when people knew it was happening to women. A lot of us still thought it was a homosexual disease,” she says.

In addition to planning her funeral and crying in the tub every night, Brown immediately signed up for a clinical trial testing the use of AZT, or Retrovir (azidothymidine), to reduce the transmission of HIV from mother to child. Her daughter has been HIV-negative since birth. 

Brown contracted HIV through extramarital heterosexual contact during the years before she entered recovery for substance abuse. Her husband, murdered in 1997, never tested positive for HIV and her oldest child, a son, is also HIV negative . 

Life With HIV: Telling Her Story

“I thought I was the first woman in the world. I knew no other women. There were no women standing up saying, ‘I am HIV positive.’ I thought I was going to be on the news, because it was such a rare thing,” says Brown, who is now a medical case manager for homeless people with HIV at the NO/AIDS Taskforce, a nonprofit organization serving people with HIV and AIDS in New Orleans.

Brown says it took her many years to become comfortable telling people about her HIV status.

“I remember the first person I told was my mother. I can remember the look on her face like, oh my God, my child is going to die,” she says. For years her mother, sisters, and her children’s father were the only ones who knew. As she began to accept HIV in her life, she told more people, including her son and her father. Gradually, she came to believe that telling her story was important for women with HIV to know they were not alone, and so that people in her community could become educated about HIV risk.

“[HIV/AIDS] can’t be pages in a history book; it has to be known that this is real, this is how it looks, it can affect anybody. I’m a mother, I’m a college student, I work full time. Looking at me, you wouldn’t believe the life I once lived,” she says. 

Taking Care of Herself

One of the reasons Brown is doing so well is that she has been in medical care since the day she received her diagnosis. Over the 15 years of her life with HIV, Brown has personally experienced many changes in HIV treatment.

“There was a time when I thought the medications would kill me,” she says. Now she takes three pills once a day and says she doesn’t have any side effects.

“When I first came into this thing, there was only a handful of things that you could take. I can remember when they asked me to participate in a study, I jumped at the chance because it was like, we have to change something. Then you saw people living longer; you saw quality of life change.”

Brown says she takes care of herself and has come to a point in her life where she takes things less seriously, prays a lot, and laughs more. This can be challenging, because she cares about her community and especially her clients, many of whom lead chaotic lives that make it difficult to keep up with the HIV/AIDS care that they need.

“I don’t worry about every little thing, because I cannot fix the world. I went through that period where I thought I could fix everybody, but now I know I can’t. I meet my clients where they are in life,” she says.

Learning Her Lessons

But still, sometimes she worries. Not so much about herself, but about her daughter and other young women who may not feel enough self worth to wait to have sex or negotiate condom use.

“We have to teach them how to love themselves,” she says. “Most of the time when you find young ladies who are having sex with more than one person, something is lacking, there is no love there, no respect for self. As parents, we have to teach them by example — we can’t say save yourself for marriage and then have men coming in and out of our bedrooms.”

And she worries about married women who do not know what their HIV status is or what their partner’s HIV status is. The reality, which she and her husband painfully learned, is that your spouse may have relationships outside of marriage that can affect your health. Get tested for HIV, she advises, and take care of yourself.

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