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Building Support Systems for Women Living With HIV in the 1980s

An Interview With Patricia Nalls -- Part of the Series This Positive Life

September 19, 2012

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As they got older, did they start to see that something was perhaps not right? Or did you get to a point where you could talk to them about your HIV status?

Well, after a few years of isolation, fear, all of that type of stuff, I eventually started medicine. As AZT came around, I started AZT. The side effects were horrific. We were taking it around the clock, setting a timer.

Two years after my husband died, I told my daughter, who was 10 at the time, what was going on. After I told her, I told her not to tell anybody at school, not to tell anybody on the block, not to tell her brother, who at the time was four years younger than she was. So that was a lot of pressure for this little girl.

When my son became 8, four years later, I disclosed to my son what was going on. Needless to say, they were devastated. They were scared. They were scared of me. My daughter would come in the room and sit, and she would change from one seat to another. She wouldn't sit next to me. She wasn't even doing well in school anymore. I didn't know how to handle it all. I didn't know if she was afraid of me, or what was going on.

I got them counseling. That's when they told me that she was not going to get close to me. It wasn't the stigma. It was more about, "If I get close to her, I can't handle her dying." Eventually, I started reading; giving them information; telling them about HIV.


In terms of myself, I attended a support group that was more of a bereavement group. I was the only HIV-positive woman in the group. The guys were wonderful. They were nice. But they were more talking about how, now that they're HIV positive, they're going to enjoy their fine china, take trips to Europe and enjoy having wonderful expensive meals.

Well, that wasn't my world.

My obsession was what was going to happen with my kids. I couldn't even be in the house with them, because when I looked at them, I just saw orphans. I would run in my room and just break down and cry. Because, for me, that meant that they were going to be alone, and they wouldn't have me. Of course, I knew my family would take care of them. But I'm their mother. And they would be left with no mother and no father.

As I shared that, I realized that the guys would just kind of get dismissive, and went on to, "Well, here's what we're going to do for our lives." They didn't have children; they weren't caregivers. So they didn't understand that. They couldn't relate. So I stopped going to the group.

But I did socialize with the group. I'd have my children around these guys. And so they got comfortable being around other people with HIV. They didn't see just me as HIV.

Can you talk to me about the support group that you started on your own for women? How did that come about?

Sure. So, after I broke out of the isolation, I went to my doctor and said, "Am I the only woman with this disease?"

My doctor said, "No, there are other women. But unfortunately, I can't give you their information."

I then asked, "Can I put a flyer in your office?" He said yes.

So I put a flyer in the office that said, "If you're a woman living with this disease, please call this number." I just wanted to meet some other women with HIV. I ended up putting a secret telephone line in my home, because I couldn't use the phone line that all my family and friends were calling on -- because the message would be a little bizarre for them. Because they didn't know.

Low and behold, the phone started ringing late at night, early in the morning, all day long. And so we just started talking to each other via the phone. None of us wanted to show our faces, so we would just talk on the phone, support each other, share information, cry -- all of those things.

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This article was provided by TheBody.
See Also
More Personal Accounts of Older People With HIV/AIDS

Reader Comments:

Comment by: Selenah (South africa) Fri., Feb. 8, 2013 at 3:47 pm UTC
Hi realy are such a strong woman...i wish everyone knew how far we can live and fight this disease.may God grant u more to live for.
Reply to this comment

Comment by: jimmy (las vegas ) Sun., Nov. 11, 2012 at 2:42 pm UTC
U are on my list of heroes in this world
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Comment by: Anonymous Sun., Oct. 28, 2012 at 6:53 am UTC
Oh dear sori 4 that but just be strong
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Comment by: miriam n (lilongwe/malawi) Thu., Sep. 20, 2012 at 2:29 am UTC
I am happy for you patricia
I am also living with HIV
you are not alone,I am not alone,collective women
Keep well,eat good and avoid stress
I love you
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