Striking Photo Series Shows What It's Really Like Living With HIV

Photographed by Lauren Perlstein.
Sara, a 54-year-old woman living with HIV, says that when she got her diagnosis, her first thought was “it means death.” That was 1990, one of the crisis’ deadliest years in the U.S. "People were dying everywhere."
In the 24 years since, a lot has changed. Sara has survived. Advances in treatment have vastly increased life expectancy for those who can access the medication. As new wars and diseases pop up around the world, this disease has largely dropped from the news cycle.
But, it hasn’t gone away. An estimated 50,000 Americans will contract HIV this year, roughly the same number who got it in 1990. Since then, the total number of infected Americans, about 1.2 million, has grown significantly, bolstered by the constant infection rate and increased life expectancy.
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“Despite the increase in people living with HIV, I see only a small fraction of the number of people living with HIV today as I did 20 years ago,” says Thorner Harris, founder of HIV support group Guys and Girls. “These days, many HIV-positive people live the lives of HIV-negative people. Their HIV is underground, but they are not.” That can make it hard to get a clear picture of who the virus is hitting hardest.
The highest rate of HIV infection is among gay men, especially men 13 to 24, but black women are the next largest group, outpacing straight men and drug users. Per CDC estimates, a quarter of overall transmissions come from heterosexual sex, mostly affecting women. And, the data often don't account for trans* women, who may be recorded as men who have sex with men when they get infected. The disease also disproportionately affects minority women. African Americans represent about 12% of the U.S. population and nearly half of those living with HIV.
"Globally, AIDS-related deaths are down 24% just from 2005," says Charles King, president and CEO of Housing Works. But, he says "HIV/AIDS persists as a disease of the marginalized and the poor, perhaps more than ever. So, while stories of our laudable progress have increased, visibility for those who still suffer from this disease has decreased. It is their stories that must now be shared."
Today is the 26th year of World AIDS Day, a day to raise awareness and support for the 34 million people living with HIV/AIDS globally. To mark the day, we asked six women who are living with HIV for their stories. They told us about getting sick, getting healthy, and day-to-day life with a near invisible disease.
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Interviews have been edited and condensed and some names have changed.
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Photographed by Lauren Perlstein.
Lolisa, 27
I didn’t know anything about AIDS growing up. I thought, it’s people in Africa or gay people, not me. Then, when I turned 17, I started to get sick. I started having a burning sensation when I swallowed, and it got to the point where I couldn’t get food down and I was like 90 pounds.

Then, I noticed a bump on my arm; it looked like a mosquito bite. Two days later, my arm was covered from the palm of my hand up to the back of my neck. It was shingles. The doctor told me the illnesses were symptoms of HIV, and asked if I’d ever been tested.

When I got my diagnosis, the specialist asked me a bunch of questions about things I hadn’t done. I’d had vaginal sex with a man with a condom — but I hadn’t even heard of the other stuff. When the doctor started asking the same questions to my mom, I must have looked confused, because the doctor said my viral load was greater than 100,000. Even if I’d gotten it from sex, there was no way it could have progressed that far. My mom got tested and she was positive — she could have been positive for 20 years. I either got it through childbirth or breast milk.

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Lolisa, continued
I was 20 when I decided to finally become public about it. For three years, I’d had questions and no one to ask them to: Am I the only girl with it? Am I the only black girl with it? Am I the only girl at 17 with it? A girl at the clinic group, who was 15, wanted me to speak with her at World AIDS Day at her school. I asked my mom, who said no, but I did it anyway and it felt so good. I didn’t want to walk on eggshells at home anymore. I told a group of my cousins, then my sister, then the whole family one by one.

From there I started getting involved in needle-exchange programs and volunteering and traveling, and doing different things. In 2009, I had a son who is negative. In 2011, I wrote a book about my life. In 2012 I got married. My husband in negative. I try to just travel and share my story as much as I can.

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Lolisa, continued
I practiced different ways to tell the guys I was dating. Sometimes, I’d text them after a few dates; other times it was easier to just tell them up front. When I met Darryl, my husband, he already had family members who were positive so he knew a lot about it. After I told him, he was like “I’m still going to marry you.”

Nobody wakes up and says, ‘Oh I’ll get HIV today, and I’ll take this medication for the rest of my life.' Don’t feel sorry for me because I was born with it — and then go hate my mom because she had sex. It’s the same thing.

You can read more about Lolisa's story on her website.
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Photographed by Lauren Perlstein.
Paris, 29
I was 11 when I found out. The piano teacher in my church used to give free lessons. When he was arrested for molestation, they advised all of his students get tested for everything. I was one of six students to get infected.

The doctor told me, my mother, and my grandmother at the same time. I had a soda that I hadn’t finished drinking, so I’d put it in the refrigerator. I remember the first thing my mom did was grab the soda and throw it in the trash. She got educated eventually, but that day, she was worried someone was going to get sick from drinking the soda.

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Paris, continued
When I turned 24, I aged out of the group where I could get free medication — in Georgia, there’s a lot of groups for 18 to 24 and for 40 and older, but not much in the middle. So, I couldn’t get meds and got really sick, the worst it’s been, and so I moved to New York. I showed up with no money, just a little duffel bag, and nowhere to say, but I had to come here or die. About 10 days later, I was back on meds and had somewhere to sleep, all from Housing Works.

Disclosing is a mixed bag. I have told guys I dated and some friends. The worst was this one guy I told on our second date. We were at dinner and we saw someone in the later stages, someone sick, and he made a comment, so I told him. He threw bread at me, at my face across the table, and shouted “Are you trying to kill me?” and then left. Oh, man, If I’d had a bazooka…

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Paris, continued
You learn from trial and error when is the best time to tell someone. I think best is maybe 10 days in — and then you slide it in. There are lots of different ways: Sometimes I’ll say, “Oh I have to get a refill on my medication” and they’ll ask what’s wrong and I’ll say “Oh, it’s my anti-retroviral for HIV.” Or I’ll say, “I don’t think I’ll have children” and they’ll ask why and I’ll say, “Oh I’d hate to have children who are positive.”

When I think back on the guy who abused me, I don’t know. My mom says if she ever sees him again, she’ll kill him. But it was so long ago, you have to let it go a little. I remember my grandmother told me a long time ago that everybody has something going on. This is just part of my struggle. When I found out, I didn’t think I would be around this long — but here I am. I’m 29, healthy, and living life. You can, too.
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Photographed by Lauren Perlstein.
Shakira, 24
I found out in April of 2006 that I was HIV positive. I was 16, 17, living at home but out and about, being promiscuous, dating, coming home late. Then I got really, really sick; I could barely move and I had a severe cough. My grandmother took me to the hospital, and I was diagnosed. They told me there are pills I can take to help save my life, to live longer. That was my hope in that moment.

They told me to pick three people to tell, so I told my sister, my mom, and my grandmother. My grandmother, oh my god, not only did she raise me, but she raised me in the church. I was scared to tell her, because it meant I’d been sleeping around, but she just told me she loved me. “You’re coming home to me. Don’t worry.”

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Shakira, continued
There was a lot of stigma, paper plates, wiping the counter, eating with plastic forks. None of my family wanted to eat off anything I did. My sister would pull her kids away from me. I’m close to my niece and nephew, and that really drove me up the wall — it hurt.

I know the man who gave it to me. He was an alcoholic, lived in Brooklyn. We hung out one night, he cooked me dinner and then we had sex. I had no idea he was positive, and he didn’t tell me. I knew what HIV was by that point, but I figured it wouldn't happen to me.

I was resentful, and for a while I tried to find him. I wanted to ask him why, tell him that what he did was wrong, that he took a choice away from me that I should have been able to make.

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Shakira, continued
It’s funny, I consider it a blessing in a way. I wasn’t worried about my health before, but it was a wakeup call. Now, I am 100% adherent to the medication. It took a while. Nobody wants to take pills. It’s unbearable. It’s four HIV pills, plus one liquid that I have to mix before I inject into my leg and stomach. That took a while because I don’t like needles. But, my numbers have improved tremendously since I’ve been on it, so it’s worth it.
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Photographed by Lauren Perlstein.
Sara, 54
It was 1990. I was 30, and I was getting sick a lot, but you know, life in New York when you’re young, you don’t really take care of yourself. But, the test came back and said I was positive.

I was in my doctor’s office and she told me. I just — I’m not one to show painful emotions but I just started sobbing. I thought it meant death. Because people were dying; it was not what it is now, not even close.

The doctor said to me when I was diagnosed, “You’re going to find a new normal.” She was right, but it took years for that to happen. That’s a terrain of deep depression, hopelessness, hope, depression, hope.

My best friend from high school was positive, a gay guy. Right after I was diagnosed, he died. I was at his funeral, sobbing. Not wanting anyone to see me, because in part, I was crying for myself.

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Sara, continued
I started on medication in ‘94, at a time when a lot of people were dying from the meds — they were so toxic. I lasted until about ‘99, right when they started getting protease inhibitors. I started to experience severe side effects. I was basically dying. I went off the medicine, juiced myself back to life, started a business, and didn’t go near a doctor for five years, didn’t trust them. And, I got better.

Then in 2005, I got appendicitis, and spent from 2006 until last year in and out of the hospital. In 2010, I got meningitis and that scared the shit out of me. I thought, okay, I have to go back on the medicine, and that got the HIV under control, but there have been so many complications. I got cirrhosis and I don’t drink. That’s my story: I’m just trying to keep this body alive, despite everything.

I recently started dating a guy. I told him, gave him plenty of time to look it up, to learn, to ask. But, when sex, safe sex — he had a meltdown. He called me and dumped this whole, panicky “What do I do?" thing. And, I was really fucking pissed off. I told him, "You can go to the ER and take the medicine, or don’t fucking take it, but I’m not going to try to sell you on my safety."

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Sara, continued
I was married. We met in ‘96 and got married in ‘99. But, I wasn’t sick then. When I started to get sick, a whole different thing happened. He was negative, it wasn’t that, but he’d just grieved for me so many times, seen me almost die so many times, it killed the marriage.

I don't like to be defined by my HIV status. No one does. It’s good to remember that your best friend who you have known for 15 years could be positive and you would never know. Get good with that. She’s got breast cancer and he’s got lupus. People get shit in their bodies.

There’s still a lot of stigma; HIV’s related to sex and drugs, which are two things that make you “not a good person.” But really, really? Bullshit. Own your humanity and don’t judge people. I don’t care if I slept with 13,000 people and did heroin every day; I’m still a person. And, I might be a better person than you.

My mantra used to be: fucking Keith Richards. Me and Keith Richards — or any rock star ever — who do you think is gonna end up with HIV? Me, it was me. So, there you go.
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Carolyn, 46
I was officially diagnosed in 1996, but I’d been with my partner since 1990. He didn’t find out until the end of ‘95, but we always assumed he’d had it before we got together. I wasn’t promiscuous, I wasn’t a drug user. We were together until he passed in 2012, so for 22 years. If you hear a woman has HIV, you think it was because of drug use or being promiscuous, but that’s not the case.

My mother died, and she didn’t know; My dad died, and he didn’t know. There is no reason for my brother to know — he’d look at it as a death sentence. My friends don’t know. I don’t want to be looked at differently. Especially when people aren’t educated, they pity you, and I don’t want to be pitied.

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Carolyn, continued
The first couple of years were devastating. I was 27, and the first thing that came to me was, ‘Oh my god, I won’t be able have kids.’ There were days I didn’t want to get out of bed. I didn’t know until my doctor told me it was probably depression.

In my neighborhood growing up, my close friend had a cousin, an IV drug user. He contracted it in the mid-'80s and he went through the wasting syndrome, got those skin blotches. I was a teenager, and everyone would shy away from him, cross the street when they saw him coming. But, I would talk to him; I’d sit on the stoop and take his hand and talk to him. I would have never thought back to him, except I was diagnosed. It’s weird how life works out.
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Carolyn, continued
Look at me: I’ve had two lovers in my entire life, and I was with one of them for 22 years. And yet, people think that if you’re positive, you must have engaged in risky behaviors, so you deserve this.

But, a couple years ago, I’d never have agreed to talk to you. I worry that people would pity me, and I don't want that. Now, I think, if I can help somebody by telling my story, then I’m all for it. And who knows, maybe if you’re doing a photo shoot next year, I’ll let you take a picture.
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Jessica, 31
I’m a teacher. I’ve been teaching for nine years. I’ve been positive for almost six years now.

I was born and raised Muslim. In Islam, there are certain stereotypes that go along with being HIV positive — it’s something you get from being promiscuous, or a drug addict, and so to this day, my family doesn’t know. It's like living a double life.

I didn’t get up to anything ridiculous in high school, but by 21, I was a wild child. I pledged a sorority and started hanging out with this certain circle of friends — or at least a crew who I thought were friends at the time.

On my birthday weekend, when I turning 26, I went out with my friends, took shots and told my friend I couldn’t drive home. We were at his house and he said I could crash in his bed, which was nothing abnormal. That was our weekend routine, basically.

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Jessica, continued
The thing that changed that night was that his cousin was over. I’d never met his cousin or hung around him before that night, but when I woke up, the cousin was on top me. I kicked him off me, knocked over a lamp, and left the room. I’m still drunk at this point so I can’t drive, so I just lay on the couch and cried my eyes out until I fell asleep. I woke up and my friend and the cousin were there. He offered to buy me food as, like, a consolation prize. “I’m sorry about earlier; here are some chili cheese fries.”

That was February. In April, I donated blood and then two days later, I got the flu. I had to call the Red Cross and tell them I was sick and not to use the blood. An hour later, the clinic called me and asked me to come in. That's when I knew it had to be either HIV or Hep C.

After I found out, I had to suck it up because I was living with my parents. I had to go home and act like nothing was wrong. I never really even considered telling them. To do that, I’d have to admit that I was drinking — which is against the religion, and that I’d been assaulted.

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Jessica, continued
People forget you can be straight and your spouse can give it to you because he stepped out of your marriage. They don’t think about the rape cases or molestation — in their minds, it’s three things: You’re gay, you’re a drug user, or you’re a whore.

So now, only three of my girlfriends know. The men who know I’ve typically disclosed to because we were dating or we liked each other and I didn’t want to lie. I could be that person who just doesn’t tell people and just hooks up with people. And, I’d be lying if I said I’ve never ever done that. I have. But, I just felt guilty and remorseful after I did that. I felt like I was doing to somebody else what was done to me.

Sometimes telling people I’m dating is disheartening because I want them to be able to look past things, but I totally understand why they can’t or why they don’t. I was once in a situation where I really liked the guy and wanted to go further — I thought we hit it off. When I told him, it didn’t work out that way. He basically said that he didn’t want to watch me die. They always tell you "It's not a death sentence," but I can't say in his position I wouldn't have done the same.

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