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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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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 and

Copyright © 2012 Remedy Health Media, LLC. All rights reserved.

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


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