May 1, 2011
Welcome to This Positive Life! We have with us Lolisa Gibson. When Lolisa got tested for HIV in 2004, she was certain that she was HIV negative. So when her results came back positive, she was utterly shocked. It was a lot for a 17-year-old to take in, but the more she learned about HIV, the more she didn't let her diagnosis stop her from living. Lolisa, a proud mother of a baby boy, talks to us about coping with her diagnosis, becoming an HIV educator/public speaker, and being in a mixed-status relationship with a man.
This is Olivia Ford reporting for TheBody.com. Welcome, Lolisa, to This Positive Life.
You're very welcome. Can you start by describing how you found out you were HIV positive?
When I found out I was HIV positive, it was because I had been getting sick and my doctor had asked me to get tested.
How old were you at the time?
I was 17.
How long had you been getting sick for?
Before I got tested, I had two different sicknesses within two months period of time. So it started when I was 16 and moved onto when I was 17.
So when the doctor told you, what did you think and how did you feel when you first heard?
When he told me to get tested or when he told me I was positive?
Let's start with when he told you to get tested. What did you think when he told you maybe you should get an HIV test?
When he told me to get tested, I didn't think anything of it. I didn't know anything about HIV, so I just knew that I didn't have it. So it wasn't a big deal for me to get tested.
And why were you so sure that you didn't have it, at the time?
At the time, because I didn't know anything about HIV. I just knew that there was a certain look to HIV. I knew that I didn't use drugs, I didn't sleep around, so I knew that I wasn't putting myself at risk to get HIV.
So when you got the results, was anybody with you?
Yes, he actually gave me my results over the phone and my mom was on the other phone at the time.
Oh wow. Do you know why he gave you the results over the phone as opposed to in person?
That day, he had kept calling while I was at school. It was a Tuesday in January 2004. He kept calling. When I came home from school, my mom told me that the doctor had kept calling that day and wanted me to come in. But by this time, it was about 6:30 to 7:00 at night. So coming into the doctor's office this late where you have to take a bus, it would have been like a half an hour bus ride, so I just wasn't feeling it, so he called again after I got home. My mom had called me to the phone and said he was on the phone. Once I picked up the phone, he told me he had the results to the test. And he asked me if it was OK to tell me over the phone. I didn't think much of it, so I just said, "Yeah." And my mom stayed on the other phone and we both heard at the same time.
So what did you think when you first heard?
When I first heard, my mind just went blank. My whole childhood, I've been in love with Bow Wow. My only goal was just to marry him when I grew up. So when he told me, the first thing I thought was, "I'm never going to marry Bow Wow." I still didn't know what HIV was but I thought Bow Wow was never going to marry me. And I thought I was going to die right that very second.
So now how did you first start to learn about HIV? For instance, was it around that time you realized how you got HIV?
Actually, my doctor he, it was so urgent for me to come in that day, because he had set up an appointment for the following day with a specialist of a different clinic for children. So he wanted me to come in because he had already made me an appointment for the next day. So since he told us over the phone, he also told us about the appointment for the next day. So me and my mom went there. The specialist, he told us that my viral load was greater than 100,000 and that I had 115 T cells, which was really bad. He asked me about my past and things I had done. I hadn't done anything except for having sex and use condoms. He started asking my mom about her past, and most of the things, she didn't do.
He started saying, with my viral load being so high, he thought I could have had it for longer than 10 years without knowing. He was saying there was no way I could have gotten it within two years of having sex with condoms and it would be that bad. So that's when I started getting educated. When I left the doctor's office that day, I still didn't know anything about HIV. I just knew that now I had it. That means I had to take this medicine. But I didn't know what HIV was.
So now backing up a little bit, it sounds as if you had had it for a long time, so was there talk about there was a chance that you had gotten it from your mom or that you had had it basically your whole life? How was that introduced?
The doctor told my mom to come in. He told my mom to get tested. He told her to bring my two younger brothers for them to get tested as well. My brothers came back negative, but my mom came back positive. So we just came to the conclusion that I was born with it because even the guy I was having sex with, he didn't have it. So it was like process of elimination, that's how I got it.
Now did you and your mom talk about it at all around that time? You both got this diagnosis basically around the same time.
We really didn't talk about it. She told me not to tell anyone, so for three years we just lived like that, just me and her and the doctors. So I went to school researching information about HIV on the computer. I'd print out everything I read and bring it home to her and she would read it. If someone would come, she would hide it under the mattress. And that's how we lived for a long time. She went with me to my doctor's appointments for just a month and then I decided I could go by myself. We just lived like that for a while.
So I started educating the people about it because some of the statistics that I found out, like one of the main age groups is 13-24. That was everyone in my circle, so I was like, OK, this is unacceptable. We need to know about this. We never talked about this before. So that's what made me want to get more involved, educate more people about it.
So at the time that you started to educate people about it, were you still not open about your own HIV status? You knew you had this knowledge because you yourself had HIV, but you didn't tell anybody else?
How was that? How were people responding now that you were starting to talk about HIV with your friends?
I just came out of the blue and just started to talk about it. And people were like, "OK," and they would listen, but halfway listen, I guess. Like, "OK, when are we going to the mall?" Like they would listen, and I could only push it so far down their throat. But no one really asked me, "Why are you talking about this all of a sudden?" I would get a random person, like, "What? You got it? You keep talking about it." And I would just say, "Oh no, my aunt died from it last year." I would just always use that as my escape to get out of the other question part. But my aunt did die from it, but I didn't care when she died from it.
Was she not somebody --
I was close to my aunt, but when we knew she was sick, we knew she was going to die. I knew she had HIV, but I didn't know what HIV was. So at the time, I just didn't care. I had other things I was worried about besides HIV. I felt bad for her. But at the same, I remember my mom was like, "Well she did things that she shouldn't have done and now she's paying for it." But that was just my ignorance and being selfish.
I hear you. So now you're talking to your friends about HIV. You're getting into the end of the first couple of years, what were the first things that you did to actually come to terms with the fact that you had HIV?
One of the first things that I did was I told my social worker that I wanted to get more involved, because I thought I was the only one in the world with it. And when I read on the internet that I wasn't, then I just wanted to meet more people that I could talk to, that could relate to what I was going through. Because, my mom, I could only talk to her for so much. So they introduced me to other girls that came to the clinic that were born with it, that have been going there since birth. So I was 17.
Most of these girls were like 14, 15. They were younger than me, but they had been there forever, so they kind of knew what was going on but they didn't really understand. They were still young. So no one sat down, just like no one sat down with me and explained it, no one sat down with them and explained it. So I was the one to sit down with them and tell them, "Well, this is what this means. This is why you have to take your blood. This is why you have to take the medicine," and stuff like that. After a while, the girls just started taking their medicine. The doctors were praising me, like, "What did you say to them? We've been with these kids since they were 2. They never took their medicine. Now they're taking it, undetectable."
So after I realized I could reach them, I just wanted to reach more people. I started volunteering at different AIDS services organizations in Delaware. I still wasn't telling that many people I had it, just like a handful of people probably knew, people I worked with mostly.
So just folks who also worked in the HIV field?
Yeah, so still no one in my family knew.
Well, sounds like you were a natural peer educator. That's amazing.
I always wanted to be a social worker. So I just tweaked it a little bit, I guess.
Exactly. You're basically like a volunteer social worker. But when did you start to tell people that were outside of the HIV circle that you were positive?
This was 2007, World AIDS Day. One of the girls that I met at the clinic, she was like 15, but she went to a special school in Delaware where they have a special school for kids who go through K-12, kids that have different illnesses, so they can't be in regular school. Some of them had cancer. Some of them had HIV. They all had different things, but she wanted to talk for World AIDS Day about HIV. She wanted me to talk with her, but I was like, "No, I can't do that. I have to ask my mom." But I was like 19 at the time and I had my own apartment and everything.
She was like, "You say you're grown. You still have to ask your mom." At this time, I was working at an AIDS service organization fulltime, doing HIV testing, needle exchange, everything, but I still had to ask my mom if I could do that. I asked my mom. She said no. But I realized it was something that I did want to do and I couldn't be telling this little girl no. Because she was small. I'm small, but she was way smaller than me, but her voice was so big and so loud.
I was like, "OK, I got to do it." So I did it and that was the first time I ever told anybody outside of the HIV community that I was positive. Actually, a social worker and a nurse from our clinic came to watch us. But it was really good. The kids, they were a lot younger than me, but they all listened. Their parents were there too, so they listened. They asked questions. And it was great. After I did that, I was happy. I was like, "OK, I could do this."
So wow, that's a pretty public way to be your first time coming out as positive. How did your mom react?
I was happy. I got home and I called my mom and she was like, "That's stupid. Why did you do that? You shouldn't have done that." I was like, "OK, Mom, you're messing up my moment because I'm happy right now and you're ruining my moment." So I just hung up on her. And I just went on about living my life.
Sounds like it because you continue to be very public about your HIV status. What inspires you to keep on doing interviews like this basically and continuing to be public about your status?
Well, after my mom said that was stupid, that was in December, so around like a year later, I decided that's when I wanted to go tell my family. This was right either before Christmas or after Christmas in 2008. I told -- this was 2007 -- maybe it was that same year, I don't remember. But anyway, I just started with my family, I told like a few of my close cousins and my sister, because my sister didn't even know. My sister, she was 14 years older than me. So she was over, staying the weekend, and I told her. They cried. They were upset because I didn't tell them. But in the long run, they didn't treat me any different.
So afterwards, I decided to move to New York, just to get more involved. In Delaware, there's a limit to how far you can go. There's the stigma that's still there and I've done everything, I've worked every job that I could with HIV. That was when I was more feeling like I was limited. In an office all day, you can only reach so many people, but going out speaking, you can reach more people. So I felt that was what I wanted to do.
Wow, now did you come to New York for a specific job or thing or organization? Or did you just come and say, "Hey, New York, here I am"?
I came because I was in a relationship with someone. And I came to be closer to them, but once I got here, the relationship kind of went out of control as soon as I got here. But I had the choice to either go back home or stay here, so I just said, "Well, I know God didn't make me leave everything that I knew just to come here just to go back, so I just decided to stay here."
What kinds of work and what kinds of different activities and speaking and things have you done since you've here in New York?
I moved here in 2008, in May, and when I first got here, I did a little thing for POZ Focus and I did something else for POZ. And I did something for The FADER magazine. I've been doing condom stuff since I've been here. I've been in a PSA for MTV. So I've been doing a lot of stuff.
Cool. So now going back a little to the disclosure piece. Now that you're open about your status, how do you decide with people in your personal life whether to tell them or not?
Well, everyone in my personal life already knows. When I met Daryl, who's my fiancé now, I told him the second day that I met him, just to get it out of the way. I told him. As far as everyone else in my family, they pretty much already know. My friends, they all know. Anyone else, they're just strangers. It's easier to tell a stranger than it is to tell someone you're close to.
That's a good point. Do you find that when you meet new people, you do tell them upfront because they are strangers?
Actually, I don't really meet new people. Since I've been in New York, I just stay in the house and it's terrible. I don't have any friends here, so I'm just in the house all the time. If I leave, I'm going to my mom's house, because when I got pregnant, my mom, she moved to New York too. So if I go out, it's either to my mom's house or to the doctor's. I'm in the house unless I'm going out of town to speak. I don't get out enough. So hopefully, when it gets warmer, I'll get out more.
Yeah, I hear you. And you got a little baby too.
Got to get out with him. My mom has him in her lap though.
Does she live nearby? She lives near here?
She lives like 20 minutes by car, probably 45 minutes by train. She lives in East New York.
Gotcha. But you haven't gotten involved in any volunteering or anything like that because sometimes that's a good way to --
When I first got here, I was working at the New York City AIDS Housing Network. I worked for them for a while until I got pregnant. And then I just wanted to be a lazy person, stay home and be pregnant. So I stopped working. Then after I had the baby, that's when I realized I don't want to limit myself to an office, so I realized I'm not doing that anymore. So that's when I started speaking fulltime.
Wow. So now tell me about your relationship. When did you and Daryl meet and tell me a little bit about how you decided to become parents as well.
Me and Daryl met in, I moved here in May, we met in July 2008. We actually met at a party. One of my friends that I know from the first Youth Action Institute that I went to -- that was a big part too, when I first found out, to go back a little bit. My social worker in Delaware, she told me about the Youth Action Institute, she told me to apply. And I applied for that and I actually got accepted to go. And I went to Chicago and that was actually the first time I was around a lot of people with HIV, a lot of people that were my age, younger and older and doing a lot of great things from different places. And I was like, "Wow, these people aren't even scared. They're just talking about it." And that took me to another place, just to see people that were talking about and comfortable talking about it. It changed my life. I actually met people that I gained lifelong relationships with. And Johnny was one of them.
Who's Johnny now? Just for our viewers.
Johnny, he lives in New York. He works for an organization called Housing Works. At the time, he was on the planning committee for the Youth Action Institute. But after each year at the Youth Action Institute, we have conference calls, the people who stay on the conference calls all year long, we kind of gain really good bonds with each other. Once they found out that I was moving to New York, of course they offered any help that they could to me. So once I got to New York, Johnny, he invited me to his job, they were having a party. And this week, my mom and my brother had just come to visit me and I just moved into my apartment. They came and they cleaned the apartment and set everything up. But as soon as they left, I got a bad, a real bad cold, I think I caught it from my mom.
Anyway, that whole week, I was at work, just sweating and cold and just a mess. But I didn't have anyone to come save me. I just went into work anyway, so I wouldn't have to be by myself. That Friday, Johnny, he told me to come to his job for this party. It was an all-white party and I was like, "No," I'm just starting to feel better. I want to stay in the house. But he begged me to come, so I just got out of bed, went and got dressed and came to the party. Also, the party was a dressing contest, but I wasn't really worried about winning the contest. I was just like, "OK, I'll just get out of the house for a while."
So I got on a dress and went to the party. He was working, so of course he was like back and forth. But I was just sitting down and the organization that he works at, there's a lot of older people there, like people that were on drugs that are trying to get off, not necessarily anyone I would hang with on a regular basis. So I just sat in the corner, probably just drank some lemon juice and watched everybody. I noticed this boy come in and he was like perfect. Everybody else just disappeared when I saw him. He had on all white and he just looked like an angel.
I told Johnny, "Who is that?" He was like, "I don't know. Go talk to him." I was like, "No, I'm not going to talk to him." I wasn't bold enough without any friends next to me. I wasn't going to talk to him, so I just sat there for like hours just staring him down. Eventually, when the party was almost over, I had stood up and some older guy that I knew that like lived at the organization, he was a client there, I knew him from visiting the organization off and on, he tried to dance with me. And the guy that I was staring at, he just reached his hand out of nowhere, like, "Here, dance with him." So I just started dancing with him. We danced for the rest of the night. He was there because of his cousin, who worked there as well.
So they asked, like, "If you think you're best dressed," to walk down. We looked at each other and we just did it, just to be spontaneous, but to our surprise, we both won best dressed. Everybody just started saying stuff, like, "Who is she? Where is she coming from? She looks a mess. How did she win?" But the only thing we won was a $15 gift card for Target. So it wasn't that serious, but whatever, we won. So after that, we just talked and talked and we never stopped talking after that.
But I told him the next day after the party. He came to my house because I had to wash clothes. I had to wash since I moved to New York, so once I moved to my apartment, he came to help me do laundry and we just built a relationship. But I told him from that day that I had HIV.
And how did he react to that?
To my surprise, he was OK with that. He was just like, "OK, so what's next?" But he was already educated about it. He has family members that also have HIV, so he knew a lot about it already.
Right, and his cousin worked at Housing Works.
OK, that's good. And you're still together.
Yeah, we're still together now. We have a son who's 18 months now. So they're both HIV negative.
Beautiful. What's your son's name?
His name is Daryl.
Aw, Junior. That's beautiful. Now was there a lot of discussion before you decided to become parents? Was it kind of a surprise? How did you handle the sort of medical piece around it?
I never really wanted kids. That was even before the HIV. I just didn't want kids. But once I started traveling a lot with the HIV stuff, I just didn't think I had time. I thought maybe when I was like 27 or something, I would have a kid. But Daryl, he had different plans. He wanted to have kids. And actually, in December or October of 2008, I went to England for a tour across the UK for two months, so when I came back, we met again. Since that night, he just never left. So I didn't want kids, but we were having sex and the condom actually broke several times in one night. So I think that's the night I got pregnant.
And once we found out I was pregnant, I still didn't want kids as much, but he did. So I was just like, "How am I going to tell?" I was never worried about the baby having HIV because of the technology that I know is out there. But I was like, "How am I going to tell my child that I have HIV?" He was like, "Well, you'll just tell him the same way you tell everyone else." So I was like, "OK." And my mom, when I told her I was pregnant, we found out in January, by February, she had already left everything she owned and moved to New York. So it was set from there.
So now had you been taking HIV meds since you were diagnosed or did you sort of wait?
Yeah, I was taking meds since I was diagnosed. Because when I found out, my viral was so high and my T cells were so low, I had to get on medication right away. I've been taking medication since I found out and during pregnancy had to take the medicine. It was harder during the pregnancy because one of the pills that I had to take would just not stay down. I'm talking about Norvir (ritonavir). The gel cap, every time I just went to hold it, I would just throw up. It was terrible. But we got through it.
That's good. Are you still taking the same regimen that you were when you pregnant and did you change at all when you were pregnant?
I changed it after I had the baby.
OK, gotcha. Do you want to share which meds you're on now? If you'd rather not, you don't have to.
I don't think that matters to someone who's not positive.
Well, most of the people who are going to be watching this and who come to our site are positive. So often times, people are like, "Oh, I wonder what meds she's taking?" Sometimes people don't want to share because they're like, A, "It's personal," and B, they're like, "I don't want somebody to think that she looks good and she's taking this and so let me go to take this." And of course everybody knows you got to take what's right for you, but if you'd rather not you don't have to.
The new Norvir, it comes in a tablet, so it's not the gel cap anymore.
I hear you. So now how do you access your meds? Do you have private insurance? Are you on ADAP? Do you have Medicaid?
I have Medicaid.
And it covers everything? That's another question that's always good to have an answer to because folks are out there because especially if they're just diagnosed, saying, "How am I going to this? What are the different ways that I can access my treatment and my care?" So thank you for sharing that.
I remember one time in Delaware, they cut my Medicaid off because they said I made too much money. And that was crazy. I can't pay for that medicine. I don't care how much money I make. But my social worker, she worked her magic and she got it back on.
Oh that's good. So now do you have one doctor now or do you see different doctors?
I have one doctor.
Do you feel like you have a good relationship with your doctor?
Yeah, I have a good relationship with him. I've been seeing him since I moved to New York. But actually, I'm about to be 25, so I have to change doctors.
You see like a youth doctor?
Yeah. So I'll be changing from him soon, in like a couple months.
Now back to your mom, is she still pretty not so open about being HIV positive? Or has she gotten a little more comfortable watching you and the way that you live your life? How's that changed?
She's comfortable now. She'll see us going to the photo shoots, maybe even involved. There's been photo shoots that me, Daryl and the baby have been in together. And if I'm going to try out for a photo shoot, she's like, "I want to come. Can I try out to?" She wants to travel now. She wants to do all the stuff that I do too. So she's grown a lot.
I hear that. So now question, with all of the speaking that you do and interviews and things like that, that are specifically around living with HIV, do you ever get tired of talking about HIV and thinking about it and your also living with it?
No, I can never get tired of HIV because I think if there were someone that looked like me when I first found out that I had it, my life would have changed. No one was there for me to say, "You know, this is OK. I have HIV too and I'm OK with it." I had to figure all this stuff out by myself. If there were good websites I could go to, to see people, I couldn't do any of that in 2004. I just didn't know where to go, but no one told me where to go either. Google became my best friend. I just typed in whatever I was looking for and whatever popped up, that's just what I would look at.
So I think I'd never get tired because it wasn't there when I found out and it wasn't there before I found out either, because no one came to our school to talk about HIV. No one showed us a video at school. No one in my house even talked about it. We had family members that had it and we still didn't talk about it. So I could never get tired until HIV is over. Then I'll get tired and I'll start helping children. I want to work with children that are going through child abuse.
Oh wow, that would be amazing. And again, it seems like you would be very well fitted to that kind of work too.
I always want to help people.
Yeah, I can tell. So I have a couple more questions. How do you having HIV has changed you, rather, knowing you have HIV has changed you and your life?
It changed me a lot because I became more responsible and just learned about responsibility a lot sooner than I probably would have learned about it otherwise. When I look at my friends that I grew up with from 12 years old and up, they all became teen parents. They all dropped out of school. They just didn't have a focused life and some of them still don't have a focused life. But me, I feel if I didn't have to deal with HIV, I probably would have went down the same path as them. I never had to work in a fast food restaurant or anything like that. Every job that I ever had was always in an office, behind my desk doing something, from age 18 and up. So I feel like if I didn't know about HIV, I just wouldn't care so much about being successful. And it wasn't me to be successful for me, I'm just doing this to be successful so that other people won't have to go through the same thing that I had to go through when I first found out.
Absolutely. So now what advice would you give to someone that just found out that they were positive?
I would just say to keep going. I believe everything happens for a reason and I wouldn't take HIV back if I could. I think everything happens for a reason. I believe in God very strongly too so I think that he wouldn't bring us anywhere just to leave you there. If he didn't think you couldn't handle it, I don't think he would have gave it to you. If I was born with it, I would have found out at 2 years old. Who knows what I would have done at 2 years old, you don't know what HIV is. But I was 17, so I was old enough to understand.
So if you just found out, just take your meds and ask questions. The doctors, they'll talk fast, but you got to tell them, "Slow down because I don't know what you're saying." And make them, because that's what they get paid for, make them explain what's going on to you, so you can understand what they're talking about. That way you'll feel more comfortable and that way when they're taking your blood, you'll know why and you'll know why you're taking the medicine. You'll know why you have to go back to visit your doctor in three months. You'll understand everything if you ask. You just have to ask.
I told my mom the same thing. I'm like, "Ask them." She comes home like, "What does this mean?" I'm like, "Why don't you ask them? That's what they get paid for. You're not paying me for this. Ask them." And then some of the stuff she gets it all twisted up, so I can't really understand what she's saying anything. So I had to go with her to her appointment a few times just to explain everything because she would just sit there and shake her head yes, and don't know what the hell they're talking about. And I have to sit there with her and explain to her what the doctor was saying. And the doctor was looking at me like, "Wow, you're smart."
But just ask questions and be aware of what's going on with you. Most of the doctors, they don't have to take the medicine, so if you have to take medicine that you don't like, or makes your stomach hurt, makes you sleepy, tell them. They have different medicine. That's their job, to find one that fits your lifestyle the best and to help you out.
Beautiful. Well is there anything else you want to say or anything else you want to share or add?
I have a book coming out.
Yes, plug the book.
Let me plug my book.
There you go. Get used to it because you're going to be talking about the book a lot.
I just wrote my first book, which is a memoir about my life and it talks about my life after HIV, but also my life waiting for HIV when it came into existence. And I've had to go through a lot of things before HIV was even thought of. So it just talks about my childhood, growing up with family members being on drugs and all different types of things that you probably couldn't even imagine is in this book. The book comes out June 27th, which is National HIV Testing Day. I just wrote the book for everyone, for children that have come from broken homes, for people that feel like they couldn't make it, for anyone if you need some inspiration. It's going to be an inspirational book. The book will be available on my website, lolisagibson.com. And you'll be able to buy it on my website.
Starting on June 27th. And what's the name of the book?
The name of the book is called, "The Way I See It." I named it that because everything is from my point of view. I know a lot of people may not agree with everything that I'm saying, but I named it "The Way I See It" because it's the way I see it. If they don't like it, I'll help them write their own book. They could put it out the way they see it. But for now it's the way I see it. if you get a chance to read it, I hope you like it.
Thank you so much for telling us that. Everyone look out for Lolisa Gibson's book coming up in June.
Thank you so much for talking with me. It was wonderful to have the chance to speak with you today.
Thank you for coming.
This transcript has been lightly edited for clarity.
Olivia Ford is the community manager for TheBody.com and TheBodyPRO.com.