Aging Pandemic

Stories from an Aging Pandemic

Intro: Stories From An Aging Pandemic (2012 – 2016)

What does aging with HIV look like? Increased access to antiretroviral therapy is enabling people around the world to live with HIV into their 50s, 60s, and beyond, but we rarely see their faces or hear their stories in the media or popular culture. This collection of portraits and testimonies was produced during three participatory installations at the international AIDS conferences, AIDS2012, 2014, and 2016 …

Susan, age 54

Susan, age 54 | New York, USA

I guess I don’t even think about it too much anymore. In the first few years? Like, almost 24/7, it was something that was on my mind: am I gonna be around for my kids? …

Kim, age 59

Kim, age 59 | Melbourne, Australia

I first learned I was positive in 1994. I was unwell and went to a friend of mine who was my doctor as well, and he just threw every test at me …

Bob, age 69

Bob, age 69 | Warkworth, Canada

HIV is the kind of thing you can’t really understand until you experience it, because remember, in those days we’re talking about, it was a death sentence. And since then, …

Sebastian, age 65

Sebastian, age 65 | Harare, Zimbabwe

I remember it was about 15 years ago. I was constantly sick and I didn’t know what was wrong with me. When I was hospitalized for the last time, …

Rick, age 60

Rick, age 60 | Pretoria, South Africa

Originally I was from Scotland. I’ve been in South Africa now for 36 years. I think I befriended my little virus in South Africa – that’s 30 years ago. …

Proscovia, age 55

Proscovia, age 55 | Tororo, Uganda

For a long time, I have been working with the media. I have been writing my stories, and that’s how I’ve been getting support. …

Loon, age 50

Loon, age 50 | Manipur, India

From 1983 to 1997, I am fully on heroin in between lots of rehab and lots of jail and lots of anything. From 1997 to about five, six, seven years, I’m totally on abstinence. …

Tendayi, age 50

Tendayi, age 50 | Harare, Zimbabwe

I was a model, I ran the largest modeling agency in Zimbabwe. And I looked the part. Coming from high society, it was rare to find people …

Betti, age 51

Betti, age 51 | Abidjan, Ivory Coast

I discovered my status after I gave birth, in 1997. I was sick and I went to see a doctor at the hospital. I asked for a checkup and they told me …

Gerome, age 51

Gerome, age 51 | Abbotsford, Australia

I think that my story is personal, it’s unique, and it is not tragic. And, I think it’s something that is probably a little bit different from other people’s …

Dave, age 68

Dave, 68 | California, USA

We got kicked out of our church. We got kicked out of our small group. The pastor was in visiting me when the doctor told me, and he told his wife. And so we ended up having to leave …

Luwiza, age 51

Luwiza, age 51 | Lusaka, Zambia

Despite the health personnel saying that, “You isolate her,” my sister was there for me. My mother was there. Would sleep in the same room. My sister would be next to me …

Stephen, age 59

Stephen, age 59 | Kampala, Uganda

When I started working in 1984 as a doctor, I saw so many people whom I now know had AIDS, but we were never trained – it was not there …

Meng Lin, age 53

Meng Lin, age 53 | Beijing, China

I told my family, and I do not have a full knowledge about HIV/AIDS, but I tell them I’m HIV-positive. The same day I’ve been kicked out by the family. And all my friends get away …

David, age 61

David, age 61 | Melbourne, Australia

I’ve really had a lot of AIDS-defining illnesses in the ‘90s, some of which I’ve lived with since. I’ve developed diabetes, and, as a consequence, …

Bill, age 64

Bill, age 64 | Cairns, Australia

It’s very difficult to meet positive people, because mostly, they’re still too afraid to come out and disclose their status to almost anyone. And I really would like to have a positive …

Glenn, age 50

Glenn, age 50 | Newcastle, Australia

I think it’s harder now to live up to the expectation that you’re well. People think that HIV has been finished. That the treatments are great and …

Susan, age 62

Susan, age 62 | Melbourne, Australia

By the end of ’99, I’d really been living with HIV for over a decade – my health was going downhill rapidly. I was doing a PhD thesis. …

Claire, age 55

Claire, age 55 | San Francisco, CA, USA

I just remember being very naïve, you know, and people would tell me to do something, and I would do it. I didn’t know any better. The good news is …

Hazel, age 54

Hazel, age 54 | San Francisco, CA, USA

Getting older is like, um… Things are happening with my body that I don’t like. You know, my mind is still 25– my mind wants to be 25, my body is not…

Rod, age 55

Rod, age 55 | Tasmania, Australia

It’s strange to say: I was living in Sydney in the 1980s when the newspapers, every week when they came out, they had dozens of people dying from HIV. I didn’t know of any …

Naisiadet, age 52

Naisiadet, age 52 | Nairobi, Kenya

I decided to go back to school after I got fired from Barclay’s Bank because of my status. I was diagnosed in January 1988. My daughter was breast feeding at the time. I just …

Ethel, age 60

Ethel, age 60 | Paramaribo, Suriname

I’m one of the long-term survivors. I’m not use medicines because my viral load is undetectable and my CD4 cell is still high. I have a healthy lifestyle. …

John, age 68

John, age 68 | Coogee, Australia

My partner started to show symptoms of AIDS in 1983, and I talked to my doctor, who said, “Look, this is all happening in the United States. It can’t possibly be.” But in fact it was. …

Robert, age 62

Robert, age 62 | Medicine Hat, Canada

I was born in Louisville, Kentucky. I moved to Montreal, Canada, and lived for some 15 years in Germany, and now I’m living in the west of Canada…

Charlene, age 54

Charlene, age 54 | Texas, USA

I always knew that there would be a possibility. I had some friends that passed away. I was a intravenous drug user. My lifestyle prior, from ‘80 to ‘88, wasn’t the nicest thing. But I …

Jan, age 64

Jan, age 64 | Mataura, New Zealand

It was the 15th of January, 2002. I had a needlestick injury from one of my HIV patients. I’m a nurse, a retired nurse. Once I’d finished with …

Jose, age 58

José, age 58 | Quito, Ecuador

HIV has a– una connotación mala, negativa. Pero para mí, creo que HIV has given me everything. Everything. A new life. A change, a dramatic change in my life. In Spanish we say, …

Flor, age 60

Flor, age 60 | Mexico City, Mexico

Me quité eso de que: “Porque Dios me castigó? Porque…?” De estar me martirizando, porque pensaba yo que Dios me había mandado ese castigo …

Bryan, age 52

Bryan, age 52 | Ohio, USA

I’ve had cancer three times, I had stage four cancer. I’ve been through a lot. Every day is a bad day for me at some point or another. I got …

Margot, age 59

Margot, age 59 | Maryland, USA

Getting old is a bitch. You go to bed feeling one way, and you wake up and it’s something else. Aging with HIV, you’re never really sure what it really is. And as a woman, I don’t know …

Barbara, age 55

Barbara, age 55 | Florida, USA

I thought I might want to have a baby and I was 43, and I knew I would have to get tested before I would do that. I am unmarried and I’ve never been married, so I was sexually active. …

Reverend Gideon, age 53

Rev. Gideon, age 53 | Kampala, Uganda

So the first question was: Are you going to keep quiet or are you going to tell someone? It took 20 minutes for me to disclose. When I was in the …

Gabi, age 55

Gabi, age 55 | Munich, Germany

It’s still not the same. I mean, speaking for myself, I’d rather have HIV than some cancer, right? But for others it’s still, they can cope better when you say you have a cancer than this HIV …

Jack, age 60

Jack, age 60 | Maryland, USA

I learned how to ride a motorcycle, and to get my motorcycle license I had to bring my motorcycle back into New York, ‘cause the test was easier in New York than it was in Connecticut …

Barb, age 58

Barb, age 58 | West Virginia, USA

It has totally changed my life. Before, I was a free spirit and, you know, loved to date. I still like men and dating someone, but that’s not such a focus anymore.

Derani, age 50

Derani, age 50 | New York, USA

My mother was scared of me. I was cooking, and I cut myself – ‘cause I was always the cook in the family. And I rinsed my hand off, and she went to put a band-aid on, and I went like …

C. Bruce, age 63

C. Bruce, age 63 | Texas, USA

I would like to be able to tell what is AIDS, and what is aging. That would be really wonderful, if you could tell me which one was which. Doctors can’t tell ya. I had what the doctor …

Fredericka, age 50

Fredricka, age 50 | California, USA

I sort of don’t have a person that I can say, “Just take care of me.” When I know I don’t feel well I stay home, I do more internal healing. Some days …

Ron, age 66

Ron, age 66 | Washington, D.C., USA

I became openly positive to many of my friends and my family first, and then as I became more comfortable, I started becoming more open to …

Jane, age 53

Jane, age 53 | South Coast, England

I decided to change the world. I went on that trajectory. For about a year or two I was very committed to making a difference. I was diagnosed in 1990. …

Guy, age 55

Guy, age 55 | Calgary, Canada

I believe some people are born with their glass half full, and some are born with their glass half empty, and mine is kinda full and brimming – more than full. So I would say that I have kind of…

Pat, age 57

Pat, age 57 | South Carolina, USA

In 1985, I was incarcerated at the women’s correctional institution in Columbia, South Carolina. And during intake they take your blood and they run these tests, and then usually …

Dorothy, age 55

Dorothy, age 55 | Nairobi, Kenya

I found out about my HIV status 20 years ago, that was in 1990, I think. And, how I found out is when I had a cough, a persistent cough that didn’t go off. I was given medication for a …

Sharon, age 62

Sharon, age 62 | Ohio, USA

The doctor said, “You’ve tested positive for HIV, it must be wrong. Come in Monday, we’ll retest you.” I think, as a white woman in the suburbs in Cleveland, they didn’t …

Steve, age 58

Steve, age 58 | Maryland, USA

It’s not so much that I fear that I’ll die with HIV or AIDS, ‘cause I don’t think that’s gonna kill me anymore. But I think that some of the other co-occurring conditions are premature …

Scott, age 61 | New York, USA

Back in the ‘80s when I found out I was positive, I was just hoping to get to see my son graduate from high school. Never in my wildest dreams were grandchildren a part of the …

Garry, age 55

Garry, age 55 | Sydney, Australia

For me, I had to make that distinction between “Me the Caregiver” and “Me the Person.” I couldn’t see myself as the person in the bed, because if I saw myself as that person in the bed, …

Anna, age 65

Anna, age 65 | Maryland, USA

Initially, a lot of responses were: are you angry? You know, even my grandson expressed that he was mad. But I wasn’t. I had to accept my own responsibility. Listen, I could have ..

Jose, age 60

José, age 60 | San Juan, Puerto Rico

I think that we’re not a priority in the health system. They are thinking more in the young person. We are fighting for medicines, for treatment, we …

Davies, age 54

Davies, age 54 | Nairobi, Kenya

’m open about my status, so I do not care who I talk to when I am down. But I hardly go down because I rarely remember about HIV. It’s because I’ve internalized HIV in me, just the …

Scroll to Top