Being HIV positive is hard enough. But being HIV positive and
young, when everyone around you seems to be taking life lightly and
looking eagerly toward the future, is perhaps even harder. In May, POZ invited eight young HIV positive activists from around the country to sit down and discuss their fears, needs and hopes. POZ Senior Editor Kevin O'Leary moderated.
Bill Barnes, 21, special assistant to San Francisco Mayor Willie Brown. HIV positive for five years.
Brett VanBenschoten, 25, project assistant with Health Initiatives for Youth in San Francisco. HIV positive for eight years.
J.J.*, 19, peer educator and consumer advocate from Fort Lauderdale, Florida. Mother of two. HIV positive for two years.
John*, 24, adolescent counselor from Philadelphia. HIV positive for eight years.
Raymond*, 19, educator with CHIRPY (the Chicago HIV Reduction
Project for Youth). Originally from the Caribbean. Tested HIV positive
Scott Brynildsen, 21, peer coordinator with Seattle HIV positive group. HIV positive for more than a year.
Shay Barnette, 25, special events and outreach coordinator
for HIFY (Health Initiatives for Youth) in San Francisco. HIV positive
for five years.
Tina*, 24, peer educator from the Bronx. HIV positive for eight years.
Note: The participants marked with an * requested that their real
names not be used. They said that they were not yet out as HIV positive
to their families, coworkers or friends.
Kevin: I know Bill was going to ACT UP meetings at age 13. To what extent were the rest of you aware of HIV as you were growing up?
Brett: I knew about HIV before I even knew I was queer.
John: Before I had HIV, I had heard nothing about it. At the
age of 15, I caught a sexually transmitted disease (STD). I heard about
the Philadelphia Department of Health giving free STD testing, so one
day after school I decided to go. I gave them my name because I didn't
know any better. When the guy called me back, he told me to pull down
my pants. He pulled back the elastic of my tighty-whiteys and said,
"You have crabs." Then he asked if I wanted an HIV test. "Oh, sure."
Here I am, 15 years old, and he does not take the time out to explain
what HIV is.
So they drew the blood and told me to come back in two weeks. I
never went back because I didn't see the importance. So, about a month
later, they came to my house. Three o'clock, broad daylight.
They buzzed our apartment. I lived on the third floor, so I looked out
the window and I see this big, yellow truck. I mean it was like
cheese-bus yellow, and on the side of the truck it says, "Philadelphia
Department of Health" in big, blue letters. First thing that came to my
mind is "Death is coming to get me!" I went downstairs to let the guy
in. He asked me my name and I told him. "Do you recall taking an HIV
test, John?" I nodded. So he told me I tested positive for the HIV
virus. I'm like, "All right." No questions, nothing. He asked me, "Do
you want me to tell your parent or guardian?" and I said sure. So my
grandmother, who was about 67, comes downstairs and he tells her. I
received no pre- or post-test counseling. He didn't give me any
resources. My grandmother told me that if I took some pills it would go
Raymond: I went to get tested when I got checked for
crabs, too. I knew what HIV was, but people in the Caribbean don't
speak of it. They don't want to know about AIDS.
They don't want to know about homosexuality. They say, "The
tourists bring those things to our country and they take it home
with them." But when I found out I was HIV positive, I didn't take
it like a death sentence. My sister was crying and crying. My
brother told me that if he found out he was HIV positive he would go
out and have sex with a lot of girls. Crazy stuff.
Bill: I tested and they were like, "OK, you're going to
die now, so go off and live your life." It was well-meaning
middle-aged people with master's degrees who wanted to make sure
that I didn't miss out on my life. I always wanted to go to school
to be a filmmaker or TV anchorman. But in reality, I graduated high
school not expecting to live another four years. I haven't been on
any meds yet, and it's been five and a half years so it's like, "Oh,
you all lied to me."
But you know, there's a benefit to being a young person with HIV.
It helps me get entrée to jobs that I'd probably need a college
degree to get otherwise. But I think I'd be taken more seriously if
I had a college degree. I don't want to blame HIV for anything
that's happening in my life, but it did throw me off the track to
success that I was on.
Shay: When I found out, I thought I was just a faggoty-ass
kid with a faggoty-ass disease. I thought I was going to die in like
a year or two. But I'm 25 now, and since I'm here, I have to deal
with things in my past. I was raped in jail by seven guys; two of
them were positive. I was always pushing the memories back because
what was the point of dealing with it if I was going to die soon
J.J.: People say, "At least you found out in 1996 when HIV
was more open." But this was my first year in college and I found
out through my second pregnancy. I had been taking Depo-Provera [a
birth-control treatment]; I didn't know I was pregnant. So by the
time I was eight months pregnant, they were telling me I was gonna
have a deformed baby with one leg and all types of crazy things. I
was in hell. The prenatal care people had also said it was mandatory
that I take this HIV test. I'm like, "OK." I had an HIV test with my
first child, so I'm thinking everything's fine and dandy. So I went
back for an ultrasound again; forgot about the test. This lady put
me in a room right next to the waiting room, and she said I needed
to sit down for this. I'm thinking I have chlamydia. She looks at
the chart and says, "You got HIV." I said, "What?" Then she's all,
"You heard me, you got HIV." "What the hell you mean I got HIV?" So
I went up on her and I threw all the shit off her desk. I tore down
the whole place, and she was telling me to calm down. So I said what
I had to say to her and she said she understood. "You understand?
What the hell you understand?" And she was like "I see this all the
time." And I was like, "You see it but you don't feel it!" She goes,
"So how do you feel?" I was like "I feel you better get the fuck
outta my way, lady." I stormed out of her office and the hospital.
It was on a main road. This truck was coming and I got ready to just
walk right in front of it, I swear to God. But the lady from the
clinic ran out and she was like, "Oh, wait a minute! You forgot your
meds." It was some iron because I was anemic. So the lady was like,
"Come inside," and she talked to me some more about what I should
Scott: Before I tested, I read up on the symptoms in the
library. "Check, check." I figured there was only one way to find
out, so I went to get tested. They said to come back in a week. I
spent most of my nights writing letters to my family or calling and
saying, "Hey, I'm testing, and I don't think the outcome is going to
be very good." And Mom said, "Oh don't worry, just come back with
good news." So a week later I went in and said, "I'm positive,
right?" and the counselor's like, "Yes." I said, "OK, what now?" And
she goes, "Let's take a moment to reflect."
"I've been reflecting all week," I said. "I make a funhouse look
stupid." She gave me a booklet. I opened it, and it says "Welcome to
the world of AIDS." Like it's some fun forest or something.
My family asked what they could do for me. I said I wanted them
to educate themselves. I don't want to feel like I have to diagram
everything like Win, Lose or Draw when I talk about a CD4
count. So, my mom has now surpassed my knowledge by reading every
book in the library and advocating for everything.
Kevin: Your mom rocks. Those of you from the big cities,
do you find that your experience with disclosure has been better
than your rural counterparts?
Bill: The discrimination is still there. If I'm out at a
bar trying to pick somebody up, people ask, "Are you clean?" What
does that mean? And I chose to put my status out there so I have to
take the ramifications of it, but some days it's a little
disconcerting to be on the muni [bus] and have somebody say, "Aren't
you the AIDS boy on the cover of The Bay Area Reporter?"
Brett: I went through an AIDS poster-boy routine to guard
against discrimination. Hell, I'd meet a total stranger and the
third sentence out of my mouth was "I have HIV."
Bill: I would just have all sorts of drama and think it
was like a major sin if I had unprotected sex with someone who was
HIV negative. I don't feel that way about having sex with someone
who's positive. It's cool that you can date someone and have a
normal sex life like it was before AIDS, but the medical issues make
it kind of sketchy. I certainly learned my lesson because, in having
unprotected sex with someone who's positive, I got a really nasty
The other weird thing about dating someone with HIV, it's like,
"Who's going to die first?" My boyfriend and I have conversations
about who will take care of the other one. I have an ex who, while
we were dating, was undetectable with 600 T-cells. A couple of
months after we broke up he plunged off the charts and had AIDS.
My point is that if I date someone who's HIV negative, then it's
only my issue, and I can work through that. When HIV is our issue,
it gets a whole lot more complicated.
Kevin: I see we're now talking about the L-word. You're
all so damn cute that they must be banging down your door. Do you
have a preference of positive or negative?
John: I've never dated anyone who was HIV positive to my
knowledge. It would make my life a lot easier. I still wouldn't have
unprotected sex though, because I have this thing about me being at
600 and my partner being at 150. If he brought my T-cells down, I
would feel some kind of way about that. It'd be good, too, because
then I wouldn't have to hide my medication. If I felt ill, I
wouldn't have to lie and say, "I'm coming down with this cold." I've
only told one of the people who I was with -- my last boyfriend. I
told him that I was HIV positive but I lied about the process. Oh,
this lie was magnificent! One day I went to the doctor and they drew
blood. They gave me a Snoopy Band-Aid that I liked, so I kept it on.
So he asked me about it later. I thought real quick and said, "Oh, I
just got tested for HIV." Mind you, I had been HIV positive for
We had this big old discussion where I asked, "If I come up HIV
positive, would you be there for me?" And it took him by surprise,
but he said, "Yeah, I would." So I said, "OK, I'm going back for my
results in a week." Since I work for a medical facility, it was very
convenient for me to go to work, then come home and say, "Well, you
know I went to the testing site and I got my results. I'm positive."
So he got tested. He came back negative. We had already been in a
relationship for about two months and he probably thought he loved
me, so therefore he felt as though he couldn't leave me in my
crisis. So I played on it and we stayed together for a whole year
after that. He didn't like to use condoms and I kept saying we
needed to but he was all "I love you." So I was in a sticky
place. We did it twice without condoms and then my conscience kicked
in and I just couldn't do it anymore. I would not be able to sleep
at night if I gave him HIV.
Tina: I did what you did. It was horrible. I told my
boyfriend that I wanted to get tested and he went with me. I cried
and cried. Same thing as you. I worked in the place where I took
him, and they played along with me. I cried hysterically, but it was
out of fear, because I thought, "This guy is going to kick my ass
when he finds out." After I found out, he was open with me. He said
he was scared but that he was going to try it out.
John: Like a shoe.
Tina: Then three months later with no warning, no nothing,
he just left. It hurt like hell. I was alone for five years. It's
really hard for me to tell anybody that I am positive because I just
don't think I could go through it again. I can't. It took a long
time to get back my self-esteem. To actually look at myself like a
woman and think someone would want me, you understand? It just
Brett: What you guys were joking about is what I went
through. I'm positive because I was in love. It was more important
for me to be close to somebody than care about what might happen to
me. What's worse is, I have an ex who is HIV positive now because he
thought the same thing I did. I carry that on my conscience now.
Bill: For me, sex wasn't the thing, it was the intimacy
and wanting somebody to love. I should say quickly that I got HIV
from somebody my age. In high school, I would never fuck around with
kids with a condom; I would only use a condom with older folks. I
had been educated through ACT UP and that's what you were supposed
to do. It never occurred to me that this 15 year old who I was in
love with could possibly have HIV.
Shay: The year before I got tested, I had slept with seven
people. I had the chance to talk to two of them later. A girl and a
guy, both positive. I won't say I felt like a murderer, but I
changed two people's lives.
The relationship I'm in now -- he's negative, but he works in the
field. We're totally honest with each other. I feel lucky 'cause I'm
with a person who will be there for me.
J.J.: I had someone who loved me and accepted me, but he
just recently passed away. He did not die of AIDS. He was killed. I
miss being with someone. Not only the sex -- but having someone by
my side. And I've been rejected so many times because I don't feel
comfortable unless I tell the person that I am positive. I'd like to
hide, but I can't.
Brett: Yup. I cannot imagine not telling somebody
I'm positive. I'm single now and it's by choice, POZ readers.
One of the reasons why I'm positive ties into wanting to be with
somebody. That never went away -- having HIV just kind of
complicates it more. But I won't date outside my status anymore. My
last relationship was with somebody who was negative, and no, we did
not always have safe sex. When he got tested, I was just as scared
waiting for his results as I was for mine.
Scott: I used to have this funny theory that people mature
with age, but that was shot to shit way back when. I've lived more
than the 30 year olds I know. For a while I wanted somebody older,
but then it turns out you're just a trophy. And I don't want
somebody my age because there's not many people at the same maturity
level. I don't want to sit there and talk to him about Beavis and
Butthead or his rad skateboard.
Bill: What I've learned in the AIDS community is that
there are a lot of people who talk the talk but they don't walk the
walk. And people can say they understand how I feel or they're
working on my behalf, but OK, let's look under that and see what
you're actually doing. Sometimes I get hit when I ask people
questions like: "You say you're doing this work for young people
with HIV, and how many are actually on your staff? And why is that?
And why do you take money in my name when you don't hire people like
Brett: I don't want anybody saving me.
Bill: And I don't want to be president of NOW just because
I have friends who are women.
Tina: I get pissed off when people say to me, "If you do
not disclose, you cannot be a good educator." Kiss my ass. I'm the
best educator that my site has. And I bust my ass to get the
resources to everybody out there. But my weakness is disclosure.
Growing up in the ghetto, you do not trust. I have always been a
leader. I was a leader of those gangs. That's not hard for me to do.
Trusting is. I'm not going to trust someone with my status because
they say they should have my confidence.
And you can't judge me because I don't disclose and you do. If
you think your life story is going to help someone, that's fine.
Nobody needs to know mine. It won't stop anyone from catching HIV,
because they'll say, "Well, that happened to you. That ain't gonna
happen to me." I will say that I am proud of every person who has
the heart to get up there and say that they are HIV positive because
that takes a lot of courage. But not everybody has to.
Kevin: Let's talk about care, services and medications.
Tina: I've never taken medication.
Shay: You go, girl. Me neither.
Tina: But I still find out as much as I can and I talk to
other youth. I hear all these different things about side effects --
it scares me half to death.
J.J.: Especially that rash.
Bill: Buffalo hump.
Brett: Can I just say that protease inhibitors are not
God's gift to positoids? In eight years, I've been on and off meds a
couple of times. The first set made me unable to go out in public.
You know, one end or the other.
Currently I'm on two medications plus a couple of prophylactics.
I've got an undetectable viral load and the T-cells have been
holding steady for over a year. So I've got no problem with the
concept of medications -- it's the taking them. I've always
got to have a backpack. I've always got to have my pill container
with me. I could leave it at home, but I'm sorry, I'm 25 years old,
I don't always know that I'm going to be sleeping at my house.
Brett: It's frustrating to feel like it's in your face
Bill: Not to bring up old memories, but everybody I knew
who was on AZT monotherapy is dead. I don't know a lot about meds,
but I know that once you get resistant to one of the classes of
drugs, you're pretty fucked. So I want to wait until there are as
many drugs available as possible before I start. People want to
force folks on meds, especially young people. And at some point, you
have to accept about HIV that there is no answer. Most of the time,
people die with this thing. I don't want to say people who are
taking meds are in denial, but do meds prolong people's lives in a
Shay: I took AZT and 3TC for a year and a half of my life.
I went from being this vibrant, energized young man to being some
couch-motherfucking-potato. I felt like shit. I don't want to go
through that. I'm 25, I have a life. I don't need to be running home
to take the medicine in my fridge -- right at 12 o'clock not 12:05
-- and then have nine, ten bottles I have to choose from at night.
Tina: Not too long ago my viral load went sky-high and my
self-confidence was going lower and lower. They were trying to talk
me into taking medication. I refused it. If I'm already stressed
out, the medicine's going to stress me out more. I'm gonna have to
make sure that I remember that I have to take these pills at a
certain time every day, otherwise I might get immune to the shit. I
work and I have a big responsibility taking care of someone right
Raymond: I could not keep the Viracept down. If my body
kept throwing it up, how can it be good for my body?
John: I must speak up for medication. My first protease
inhibitor was Crixivan. It was like a miracle worker for me because
I had lived four years without any T-cells at all. I had dementia,
flat warts, thrush so bad you could scrape it and it looked like
yogurt. I never tried AZT because a friend told me, "Don't take that
stuff -- it'll kill you." I tried d4T by itself and it just didn't
work. Then my wonderful doctor said to try this new protease
inhibitor. It just seemed like I was doing the worst out of my whole
clinic, so I was the first person on my site to try the protease
inhibitor. In a five-month period my T-cells went from zero to 400,
so I'm like, this is it. I was really dedicated to the regimen -- I
broke my neck to be in the house, I carried it with me and it was
But then every magazine had a picture of Crixivan in it and that
was a problem for me. All of my pills said Crixivan on them and I
felt like if I lost a pill, everyone would know! So I wanted to
change my medications.
Most people have not been as lucky as me. But I'm worn out on
meds. I need a breather so I can live normally.
Brett: My teeth turned yellow because I've been taking
Septra as prophylaxis for pneumonia for years. I found through my
own research that antibiotics over a long term yellow your teeth. I
want to look good but it's that or get pneumonia. I've learned to
live with yellow teeth.
J.J.: I don't want to take them until I'm at a point of
needing to. In October I was almost at that point. I went to jail --
bam -- the state took my kids. But God was beside me. The charges
got dropped and I got my kids back. So I can't get stressed now
because that's what'll make my viral load shoot up.
Bill: You can get on all these drugs, but at the end of
the day HIV will still progress in your body to some degree. No
one's come out with a drug today and said, "If you take this, HIV
will leave your body and you will go off, like, skateboarding.
Brett: They're certainly implying it.
Bill: They're sure as hell are, and that pisses me off.
Kevin: What message would you like to leave our readers
Brett: Don't ever underestimate us. I will be around for a
while -- get used to it.
Scott: Yeah, I've got quite a mouth on me, so I think
they're gonna hear from me. We have HIV but that's only one of the
fires in our stomachs.
John: After eight years of this, I have finally gotten to
the point where I feel like I'm living a normal life. I hardly ever
think about being HIV positive, and before this I thought if I ever
got to that point I would be in denial. But I can live with it. It's
like having asthma. [Laughs] When people ask, "You have HIV,
how do you feel?" I say, "I feel the same as you feel."
Raymond: For me the most important thing is hope.
J.J.: I don't know what to say but "Be smart, get
educated, get tested."
John: J.J. was the only motivator!
Brett: Is there anybody we avoided stinging tonight?
Bill: Bill Clinton and Donna Shalala.
Group: [dismissively] Naaaaah.