Building Support Systems for Women Living With HIV in the 1980s
September 19, 2012
When Patricia Nalls was diagnosed with AIDS in 1987, she thought she was the only woman living with HIV. She also never believed she'd live to see her children grow up, much less see them have children of their own. And yet, despite her doubts and fear about what the future had in store, she was determined to find and reach out to other women like her in her area.
A few years after her diagnosis, she started a phone hotline for women living with HIV, which then became a small support group in her home that flourished into a full-fledged organization called The Women's Collective. Over the years, her organization has influenced policy and delivered vital services of all kinds to women living with HIV in the Washington, D.C., area. In this edition of This Positive Life, Patricia -- now a grandmother -- shares her own story of being a long-term HIV survivor, how stigma impacts women and their families and how everyone living with HIV deserves to be loved.
Can you start by describing how you found out that you were HIV positive?
I found out my HIV status after being married for 10 years. We were living the so-called American dream: My husband and I had bought a home and our children were in private school. But then, I gave birth to my third child who was very sick. No one could figure out what was wrong with her. When she was about two-and-a-half, my husband began to get ill. He went to many, many doctors, and got many misdiagnoses: bleeding ulcer, TB, a list of allergies and things like that. But nothing was getting better. Finally, his blood count was very low and they said, "Well, let's bring you into the hospital."
So he went into the hospital, and they said, "Oh, you have a bleeding ulcer. We're going to take care of it." Well, when they got there they realized there was no bleeding ulcer. Then they started to ask him his history and "Can we test you for HIV?" -- which they did. And it came back positive. He had full-blown AIDS. That was in October of 1986. He died on New Year's Day, Jan. 1, 1987. Of course, it made sense what was wrong with our third child, who was sick. She died six months after my husband, in June 1987. And at the age of 29, I found out that I, too, had AIDS.
I remember being so sick. I was 80 pounds and had no T cells. My doctors told me I had less than two years to live. My two older children, who were 8 and 4 at the time, tested negative.
I had never seen another woman with HIV; I'd always seen guys. So I thought at the time that I was the only woman. So I did what most women (or mothers) do, I stayed isolated for quite a while.
How long did you isolate yourself?
I would say I was isolated from people -- friends, family -- for about a good two years or more. I sought medical attention after I got really ill and my doctor told me, "You have less than two years." At that time, we didn't have AZT [Retrovir, zidovudine]; we had no medicine.
So I went home and did what I was told. I prepared for death. I bought my plot. I got my will made -- who will be taking care of my children, and those type of things -- all in a state of isolation, without people knowing. I eventually told my parents, but I didn't tell friends or other family members because of the shame, the stigma and the guilt. I felt like no one will want to be around me or my children, who were innocent to it all. So it was very hard.
At that time, they would bring the medicine home. It was called pentamidine [NebuPent; used to treat pneumonia]; you had to inhale it. I remember literally hiding in the closet in the home, and doing the medicine, inhaling the pentamidine, because I didn't want to bring any fear to my two children, who had already seen two major people die. I didn't want them to know what was going on with me. So I would get up in the morning, drop them off at school, and come home and be dreadfully ill -- throwing up, diarrhea, the whole thing.
Then get up at 3 o'clock, put my face on, make myself look good, and get in the car and go pick them up, pretending as though nothing was wrong all day. I would prepare their meals, get them ready for school, work with them on homework and just do all of those types of things.
Many women around me were dealing with similar situations. We just didn't know each other. For women with this disease, we are so obsessed with protecting our children and taking care of them that we do it at our own expense. I was the same. I did everything I could to make them feel like everything was normal, as much as I could.
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