Building Support Systems for Women Living With HIV in the 1980s
An Interview With Patricia Nalls -- Part of the Series This Positive Life
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.
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.
Can you tell me about that first conversation that you had? Was that the first time you connected with another woman living with HIV?
The first time the phone rang, it was shocking. I didn't answer it. Then, eventually, I picked it up. It was a woman who had seen the flyer. She was crying hysterically -- she was in crisis. I shared my own story, told her how I've gotten to where I am, which was still very sick. But also told her that we can talk. I remember telling her, "You will be OK."
We also talked about our issues around children. We talked about what kinds of things we can do. "You're having these really bad side effects to this medicine. Here are some of the things that I did that made things better for me." She also wanted services. So I told her which place provides what in her area. "Here is the place that provides services in this area."
How would you describe the quality of the services for women that the agency in your area provided?
So many of us went to the same agency for care, because it was the only shop in town at the time. They were good, but services for women were really nonexistent and they really didn't understand what women needed sometimes.
For example, if you needed food, the agency would give food to a person with AIDS. Well, it was fine for the guys. But for women, what we literally did was take the food and give it to our babies. We didn't eat. There were women, I would say, who died from starvation, and not AIDS, because they would just give the food to their babies because they had no food.
Think about transportation. When they went to these places to get help to get to the doctor, they would be given a token to get on the bus to get to the doctor. Again, it wasn't family-centered. So it didn't work for her. She had children. She had no child care. She couldn't leave the children by themselves. So, what ended up happening: She never made doctors' appointments. She didn't get the care that she needed.
Many of the women in this area are either from farther south, other parts of the U.S. or just other parts of the world. So they didn't have family members close by who could step in to help take care of the children. It didn't happen like that. So their children were then taken and put into the foster care system. No fault of their own; they just got sick.
When they got a little better, they went back: "Now, may I please have my children?" It wasn't that simple. It wasn't that easy. You had a battle to fight to get your children back. And that's hard for women without HIV, but when you add HIV to the list, it was 500 times harder for you to get your children back.
And so did the support group ever become face-to-face?
Yes. I started an actual support group in my home, where we came together as women, and we cried, and we tried to write down what we wanted, how we wanted things to go and who should keep our children. We made things up as we went along. We shared our resources. We shared our food. I shared my food. I shared my transportation. I kept children in my home while their moms were hospitalized, and took them all over, to Maryland, D.C., to different schools -- because we didn't all live in the same neighborhood -- and I was sick myself.
We became this little network of women that started sharing our resources, and helping each other. And that was hard, because we were very, very ill.
What year was this?
The support group started around '92. So that continued for a while. It got really big. Then I went to a church and said, "Can I please use your cafeteria or your basement on a Saturday?" -- because it had outgrown my home. Also, there were women who weren't able to get to my home. We continued there in the church basement until about '97 when we got our first grant to just get a room and hire one person to help me.
At what point did you start calling it The Women's Collective?
What happened was, in 1995, a friend said to me, "You're doing all of this on your own with no money, and you're sick. You should try to get incorporated."
I'm like, "What is that?"
She said, "Well, get your 501(c)(3)." So I raised money from different family members and some friends, and then got a lawyer to do the incorporation paper.
That happened in '95. We created the name, too. We didn't want "HIV" in the name; I didn't want "HIV" in the name. So, I don't know how, just, The Women's Collective -- because it was a collective of women. I sat on it, really, for two years, and still continued to do what I was doing: a support group out of my home and the church basement, not to mention, the cooking, keeping children, taking folks to the doctor and sharing my food.
Then in '97, I realized: I can't do this anymore. So I started trying to get money, apply for money. That was difficult, because many of the places that we talked to kept saying, "We don't need another organization. We need you to work with the organization in place and make them serve women, and do it the right way."
Well, we were very ill. We did not have the energy and strength to go and fight. So it took a lot of begging and a lot of asking, and learning a lot of things. I had never written a grant, but a friend helped me. We submitted it and, low and behold, we got a call for an interview.
We ended up getting the money to hire one person, who is still with us today.
Yeah. So that gave us the money to take the organization out of my home. And we were in a little room on DuPont Circle, just serving women. We had no furniture. We were sitting on the floor, doing support groups.
At that time, I was also on the Ryan White Planning Council, so I was able to really, really push for services to be family-centered, so that it includes women and their children. Some women are taking care of their mother or their father. So we need to make it where it's family-centered care, and not just for the person living with HIV.
So that's where my advocacy started -- to help to make funders change how they were funding. And it's now a full-fledged organization in the District of Columbia. We serve thousands and thousands of women -- and men; we test men. But we serve women every day through many, many programs: counseling and testing; policy and advocacy; case management; youth programs; support groups; and food pantries. We've grown from a staff of two to a staff of 20. And believe me, there's still a lot of work, and we can still use more staff.
We are branching out and hoping to do pregnancy prevention and screening, and domestic violence work, and those types of things. That's the goal for some of the programs that we are growing and adding on to the agency. So it's not just seen as an HIV organization.
You said that when you were first diagnosed you thought you were the only woman and hid for a while because of the shame and the stigma. What factored into your being able to basically overcome that stigma and become an HIV advocate?
Well, I don't think we ever overcome the stigma, to be honest with you. There are still places that I'll probably say, "I don't want to talk. I don't want to go here. I don't want to go there." I know that sounds rather weird, but I still have my own little pockets of places I may not go to.
But getting me past that was really becoming an advocate. Now, remember, I live in Maryland. So coming to D.C. and being on the Ryan White Planning Council, and being in these little closed-in places, was OK for me. They were baby steps. I went there and I made these demands, and tried to get changes to happen that will serve women better.
In terms of women and disclosure, and breaking isolation and things like that, to be frank with you, in the beginning it probably was about ourselves and protecting our children. As you become more empowered and see that you can make a difference and that you have some strength, then you can do baby steps and get where you need to.
But in reality, some women never get there. And I always tell them that that is OK. Because we can't go around forcing people to speak out and be more out there. We have to understand that it is a process. It took me a while to get there. It's going to take other women longer periods, or shorter periods. Some people get tested and they come out loud and bold.
So I think we have to understand that, for women, disclosure is huge. It also includes violence. We don't talk about the intersection of violence and HIV, especially for women. A woman can get beaten because somebody finds out her HIV status, or because she discloses her status to a partner, or she may have become infected because of violence. Most of the women we serve here have experienced violence somewhere along their lifetime. So we have to be extra careful about the gender issues that come into play.
I want to switch gears a bit and talk about your life prior to being diagnosed with HIV. Where are you from? What was your upbringing like?
I'm originally from Guyana, South America, but I grew up in Brooklyn, N.Y. That's where I met my husband and that's where our first child was born. Then we moved here, because the place we were both working at relocated to the District of Columbia. So we moved here in, I think it was, '81 or '82. And here's where my other two children were born.
Is most of your family still in Guyana or here in the U.S.?
Most of my family is still in Guyana, but my immediate family is here: D.C., Jersey, Brooklyn. So, all of my siblings know; my dad passed, but my mom knows. I have other family in Brooklyn who don't.
When I first told my mom it was like, "OK, let's just keep it to ourselves. You don't tell anybody." And so that's what we do.
Once you were able to disclose to your family, did your relationships with them change at all? Did they know about HIV beforehand?
No. They didn't know about HIV at all, until I disclosed my status. If they knew about it, I didn't know. I didn't know about it, really.
They didn't avoid me, or anything like that. They were very supportive. They would bring me meals and food, and those types of things. But no one talks about it. They don't say a word. They don't talk about, you know, "Are you taking the meds? What are you doing?" Everybody is just afraid. Even now, they are not comfortable talking about it.
All of this work that I'm doing, and everywhere that I'm going, my family doesn't talk about it. They just say, "Oh, you're looking good." Whenever I'm going to family events, I have to look a certain way, because I know everybody is looking to see if I'm sick or looking healthy. And there have been times when I was very sick.
Before protease inhibitors came around, I was very sick and very thin. During those times when I was sick and my family would come visit me, they were just so sad. But now, they're just so happy that I'm healthy.
What is your relationship like with your children now?
Wow. So, my daughter, who was 8 at the time, is now 32 years old. Wow. And my son is 29. My daughter is engaged. She has an 18-month-old.
Yes. A little boy, who is now the major love of my life. Never thought I was going to see my children graduate from middle school, high school or even college. I mean, they've done it all. My daughter is a college graduate with an M.B.A. My son graduated from Temple in communications. They're all doing great and fabulous things in their lives. I am super duper proud of them. They could have gone any which way, because they had a hard, hard start in life. But they made the right steps, and they are doing amazing things.
I'm glad to see a grandchild. Glad to see graduations. My daughter is planning her wedding. I'm just thrilled. I never, ever, ever thought that I would see any of that.
Do they live in the area? Are they close by now?
Yes, both of them. My son just moved back from Philly. He went to Temple; so he just moved back; got a job here. They both live about 20 minutes away from me.
When did it start to become clear to you that there was an excellent chance that you were going to survive, and that you were going to see all of these milestones?
I still am amazed that I am seeing all of these milestones, because once you prepare mentally for death, it's hard to undo the mind to come to grips with the fact that you're actually living. I'm not sure that you ever undo that death preparation, for me especially. It's always still a fear in the back of my mind, which is why I'm thankful for every birthday I spend with my kids. I'm thankful for every year and I feel good.
But we all know that, with these medicines, there are always ups and downs. Some may work; some may not. You become resistant to some and you pray that you have another cocktail to try because, especially for long-term survivors, we've used up a lot of options. It's not like we have a huge set of options left to us. So we're always hopeful and praying that new options will come about.
It's still a struggle with all of the issues that come with living long-term with this virus, the side effects to the medicines and just getting older. I'm now diabetic, and I have high cholesterol. I have some kidney stuff, and severe migraines all the time. There are all of these things that are going on. So it's hard, but I keep being hopeful every day. And I feel good today.
I'm glad to hear that. You're a long-term survivor who has been here since the beginning of treatment, even before it was really effective. Do you know how many medication regimens you have been on?
No. I don't keep track of all of the regimens that I've been on because I have been on many. Some worked, and some didn't work. It was always a battle of being 80 pounds, 100 pounds. Trying to gain weight. Trying to lose weight. Having the breast enlargement, the gut -- all of those things.
I'm on a regimen right now that I've been on for maybe about four years. And that's been great. That's been working for me. So I am hopeful.
What do you do in your everyday life? Are you dating anyone? What do you do for fun and what are some other ways that you stay healthy?
I have friends. I am dating. I am in a relationship, which is great. Because you feel good when you feel loved. I remember the days when I didn't think that that would ever happen again for me. I love going to the movies; having dinner with friends; socializing with friends. I enjoy that, and spending time with my children -- especially my grandbaby. It really brings joy to my life.
I do try to exercise. I attempt to do the treadmill every day for a half an hour. I do that fine maybe for month. Then something will happen and I'll stop and have to struggle back to get on it. So, like everybody else, I'm sometimes exercising and sometimes not.
I eat fairly healthy. I'm not overboard, like, you know, being so conscious of what I eat. But I think I eat fairly healthy, and I'm doing well.
How long have you been in the relationship that you're in?
About 12 years. It's a long-term relationship. I like to tell folks that sometimes we put this stigma on ourselves, because we believe no one will want us, will want to be with us, and that they may judge us. Do we tell? Do we not tell?
And, you know, there are going to be people who are going to be afraid. There are going to be people who will walk away. But there are also people who will love you regardless of HIV. We have to take the chance.
I have dated and then I would run. If I feel like this is a time I need to tell somebody, I will cut it off. But I've taken chances and I have disclosed. And it's been OK. So I think we need to be brave, we deserve to be loved and we deserve all of the things like everybody else.
That little voice inside of us will tell us that we're not good enough, but we have to believe. We have to build our self-esteem and feel good about ourselves. Because we are loving and deserving to be in a healthy relationship, just like anyone else, be they HIV infected or not.
What do you think it would take for the HIV community to shift more attention to women and comprehensive services like those that you provide?
We're at a place now where we have waiting lists for people to have medicines. So everyone does not have access to care. We need to realize that and not look at HIV as a thing in the past. People are becoming infected. People who are infected can't get the appropriate care that they need.
For women, that's more than just the medicine and a doctor. You can hand her a prescription. You can say, "Go see this doctor." But when she leaves with that prescription and that medicine in her hand, does she have a place to live? Does she have food to eat? Is she living in a violent situation? Does she have mental health services? Substance abuse services that are available to everyone with HIV?
They're cutting funds for and moving away from the supportive services that people with HIV need. That's very, very damaging and difficult; and it's really going to impact the lives of women more than it will impact the lives of others. Because for women, we come with children and other things on our plate. We're not just dealing with HIV. Women are dealing with cervical cancer, breast cancer and other kinds of illnesses that need to be dealt with as well. And so, when we start to pull away all of those support services that they need, then they're just going to be isolated, and die. You might think that prescription is going to save their life, but it's not.
If someone told you back in 1987 that, 25 years from now, you would be a) alive and b) running this organization that was helping so many other women who were in your situation, what would you have said?
"No way, Jose! I will be dead. I will be buried, and that would be it."
I learned a lot of things on my way to growing an organization and to founding an organization. I came with organizing skills from the job I did before as a community organizer. So I had some of those skills. But in terms of developing and growing an organization, I had to learn those things. I never would have thought that I was even capable. Hence, we are capable of doing a lot more things than we think we are. And we should not let HIV keep us back or stop us, especially as women.
Do you think you'll ever stop doing this work?
Every year, I say, "I can't wait to stop." But I'll probably never stop doing this work. I enjoy sharing, encouraging, being an example for women, and letting them know that they are capable of so many things.
So I'm always going to be an advocate. Even if we find a cure, which I hope we do -- that would be awesome. I think these skills would be transferable to something else that is very women-specific and allow me to work as an activist elsewhere.
Well, Ms. Nalls, thank you so much for speaking with me today. It was a pleasure.
This transcript has been edited for clarity.
Olivia Ford is the community manager for TheBody.com and TheBodyPRO.com.