Caring for HIV-Negative Kids (and Yourself) in an "HIV Family"
September 19, 2012
What's it like to raise babies as a woman living with HIV? The past 15 years have brought studies that have shown, beyond a shadow of a doubt, just how low mother-to-child HIV transmission risk can go: less than 2 percent with the help of HIV meds and rigorous prenatal care. Despite this miraculous development, there's still abundant stigma directed toward women living with HIV who choose to become biological parents -- and there aren't many avenues for reaching out to other women who've been there.
Enter Angela Davey of southwestern Minnesota; Jessica Mardis of Mobile, Ala.; Rusti Miller-Hill of New York City; and conversation moderator Shana Cozad of Oklahoma. These four moms were all diagnosed with HIV in the 1990s, and each has given birth to (HIV-negative) children both before and after becoming HIV positive. In this conversation, the four women share experiences from after they gave birth -- stories of parenting their kids and taking care of themselves.
This is part two of a two-part conversation. Read part one of the conversation, in which the moms compare notes on where they sought support while pregnant and how they coped with the first uncertain weeks of their infants' lives.
Shana Cozad: Do you feel that, if there was a young woman in your community that was thinking about pregnancy, and she was HIV positive, there's enough of a structure today that would be available to her? Angela, I know you said that you're creating a women's group, and that resource for women.
Jessica Mardis: Honestly, I can't really say 100 percent that I know that, since I'm new to this area. I just moved over to Mobile. I find a lot of my support now with my partner, whom I met two and a half years ago on POZ.com. We're in it together. He's been positive for 20 years. I don't go to a support group. I know that I would personally be here for anybody, if anybody wanted to talk, because I am open about it.
Angela Davey: In our community in southeast Minnesota, like I was saying, we don't even have an HIV support group, period -- much less designed for women. However, what's so contradictory is, if you're on state-funded health care, which some are and some aren't, you have Mayo Clinic. And they do have excellent HIV care within their infectious disease clinic. As far as medical support, it's abundant.
Jessica Mardis: I find that same issue here, in Alabama, or in the Southeast. I don't go to the clinic here that offers ADAP [the AIDS Drug Assistance Program] and free health care; I have insurance. So my doctors are more reserved. There are no brochures sitting around. They don't really advertise that they even see HIV-positive clients. But they are very good at what they do. So it's sort of a separation. If I was getting my medication through ADAP, I would probably be more in tune to the services that are here.
Angela Davey: Mayo Clinic's the same way. I'm working with them to change that. Because within their infectious disease department, where the HIV clinic is held, there's absolutely nothing that would indicate that it's an HIV clinic. Whereas if you go into any other area, they have brochures like you wouldn't believe. Anything for HIV, you have to go and ask them, and they pull it out.
I'm really trying to work with the medical community to approach this differently, and try to get them to see the benefit of treating this as a medical condition, not a moral issue.
Jessica Mardis: Right. The stigma that they're placing on HIV by withholding those resources is clear.
Shana Cozad: We have an HIV clinic with infectious disease doctors, and then we have a couple of doctors that are outside of the infectious disease clinic that are just private. With the private doctors, it's the same issue. It feels very clinical. You don't get the sense that you're part of the HIV community. If you're with a private doctor, you're just dealing with an infection, an HIV infection.
Jessica Mardis: Don't think they can't be good at it; they might be very good at what they do. Because my doctors, I mean, they're some of the best. But you don't have that social support. You just have the medical stuff. And it's so much more than that ... or at least, it should be.
Shana Cozad: Yeah. Even though this disease is only 30 years old, that community was established and is there. We still need it. We absolutely still need it.
Jessica Mardis: Yeah. But it still is a real thing that people are so afraid to come together and talk about HIV. At least, when I was in Mississippi, that was the case. People just don't want to; they just deal with it on their own. And it's so unfortunate, because you can't deal with it on your own. We need that support. Without that support, I don't know where I would be, honestly; I would probably be dead by now. You know? I mean, without people believing in me.
And, honestly, one of the biggest believers in me was Charles King from New York. You probably know him.
Rusti Miller-Hill: Yes!
Jessica Mardis: He instilled things in me that made me go get an education and believe in myself more. It's people like that that inspire people to say, "Hey, you know what? I'm not alone. And even if other people aren't willing to speak out, I'm going to speak out. Because why should I continue to be quiet?"
But one thing I think about, as my son gets older, that's a battle within me, is that you don't want to stigmatize your children. How do y'all deal with that?
Rusti Miller-Hill: It's funny that you brought that up. I've been in the media and on TV. I've made videos about living with HIV. I've been very open about my status from the very beginning, even when I was pregnant with my son. He's grown up seeing me speak out in different places. I used to drag him everywhere I went.
Now he's 17, going on 18, but since he was maybe 15, I've had to really, really reconsider and think about all that. He's dating. He's looking at girls. And we talk about HIV; it's not a secret. Everybody knows Mom's positive, down to the grandkids. But for him, whereas, when he was younger, when I was going out to speak, he'd say, "Ma, can I go with you? I have something to say," now that he's gotten older, he doesn't want to talk about HIV. He doesn't want to be associated [with it], because he understands the stigma and the discrimination. He's still struggling with, "My mom has HIV."
You hear people talk. Just because I openly disclose my status doesn't mean that I walk around with a sign every day: "Hi, I'm HIV!" They meet me, Rusti, the person first. And if they know, they know. And if they don't, I don't bring it up. It's not the topic of conversation. But to hear people who don't know have a conversation around HIV, in general, can sometimes be very disheartening. While I might take that as an opportunity to educate someone, I think my son deals with it like, "Oh, my God. If they knew that that was my mom ..." You know what I'm saying? He still struggles with, "I want to protect my mom, but I hear what my peers are saying. And I don't always want to be the one to educate everybody. So I'd rather stay silent."
So now, when I have an opportunity to speak on TV, or to do a presentation or something in the community, I go home and I ask, "Is it OK with you?" There have been things that I've turned down because his friends might have been there, or people that he knows might have been there, and he's not ready yet. I don't want to push that undue pressure onto him. Because I already pressure him about using a condom, always; and about him having documentation from the CDC that says that he's HIV negative; and that part of his conversation to young ladies that he encounters be: "Have you been tested for HIV?" Because that is the reality of the world that we live in. So he's got a lot already.
So we choose when we disclose, and if it's important enough for us to disclose. I've gotten to be very mindful of that.