The early history of the HIV/AIDS epidemic wouldn’t be complete without the voices of the many lesbians who cared for their gay and bi brothers as they lay dying.

Like the men whose hands they held, their caregivers in the first years of the epidemic weren’t exactly sure what they were grappling with. But they did know that the illness appeared — from experience — to be a death sentence.

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Following are the recollections of some of those women from the early years of the epidemic, as they simultaneously cared for the men, and held it together in the face of an unprecedented “gay plague” unfolding around them.

Terri Wilder, M.S.W., conducted the interviews for TheBody magazine. They’ve been edited and condensed for clarity below.

Candy Marcum: “I was seeing several men free of charge, pro bono”

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In 1981, psychologist Candy Marcum met a 4th grade teacher named Howie Daire, who was starting a gay counseling center in Dallas.

“In September of ’81, we went to this conference in Houston on gay mental health. We started hearing about GRID — gay-related immune deficiency. It was a virus that seemed to be spreading with gay men. And so on the way back, Howie said — we had two phone lines in the counseling center, the counseling center was real small and I was single at the time. I was very fond of that second phone line — Howie said, ‘I think we should turn the second line into a GRID hotline.’ And I said, ‘Really, do you know anybody that’s gotten that?’

“And he said that he played in New York, and he played in San Francisco, and his friends in those towns were starting to get sick. So he could see it, certainly better than I could, and I think that a lot of people could see it.”

“And so the counseling center very quickly turned into a community services place. And we had something called a ‘buddy project,’ where we would put someone who was HIV positive with a friend who was healthy.”

“Howie very quickly got sick. I was his buddy. And his mother came up from South Texas. She was an RN, and she took care of him. Howie lost his sight to CMV [cytomegalovirus]. He had Kaposi sarcoma. He was hospitalized two or three times and then died at home in the summer of 1986. He was probably the first kind of well-known person in Dallas who died.”

“I was seeing several men free of charge, pro bono, because they just didn’t have any money. And I would visit them in their hospital rooms. We would do some therapy there, and eventually I would visit them at home. This always chokes me up — it’s hard for me — and I watched them die.”

“The guys were all, you know, mid-20s, mid-30s. Yeah. So there was a lot of need from them. But if the parents could wrap their head around it, like, took care of their kid, they brought them home to caretake. Because everyone at that time was dying. There was no — there was treatments for the symptoms, but there was no antidote for the virus. Lots of parents, I’m sorry to say, did not come up to the plate.”

“I was right in the middle of it, not only because my friends were dying, but because I’m a psychotherapist and people were coming in for counseling. So, I just felt moved to help my people.”

Caitlin Ryan: “His roommates burnt everything that he owned”

Dr. Caitlin Ryan served as the first executive director for AID Atlanta, the oldest AIDS service organization in the South. She first heard about what came to be known as AIDS in New York in 1981.

“I was having lunch with a friend, and we were health providers, and I had been doing what we would today call LGBT health starting in the 1970s. So I was already part of a network, and we had heard about the cases of unusual pneumonia and cancer in gay men. And so this was a great concern. I had friends who worked in sexual health, including the early gay men’s STD clinics in D.C. and Boston. And so we were wondering what this new health crisis would mean for the LGBT health movement that we were trying to build.”

“I think because I had worked in LGBT health by then for a number of years, I was very attuned to the impact of discrimination and health risks and all of the negative impact of stigma. And so seeing a person with AIDS, I didn’t immediately see someone who was ‘ravaged’ by AIDS. So my response was, you know, what can I do to help? This is really something that I had great concern about, because I knew that the prognosis was — there really was none. People died within two to three weeks of getting a diagnosis. And so my response was, ‘How can I help?'”

“Atlanta had an enormous LGBT community. So even in the early ’80s, you know, we always speculated that the size of the community was about 250,000. If you lived at that time and saw what was happening, I don’t know how you could not get involved, because it was astonishing how people were put out of their homes when they were diagnosed.”

“I remember one young man who came, was released from the hospital, and came back, and his roommates burnt everything that he owned — the mattress he slept on, his possessions, his clothes, his books — and changed the locks on the door. So how could you not help? How could you not respond?”

“Early on, people with AIDS died so quickly. I could barely do an intake and identify the services they needed before they died. Many of them died in two to three weeks of diagnosis. In the year between 1984 and ’85, more than a hundred of the gay and bisexual men that I worked with had died.”

“I couldn’t give myself the luxury of grieving, you know, more than a short time at someone’s memorial service, because the situation was so overwhelming, and until there were structures in place to provide for those needs, there wasn’t the time for expressions of personal loss. By 1985, I realized that I needed to step back from direct service, and I needed to grieve those losses.”

Jacquie Bishop: “She taught me how to not be afraid…”

In 1983, Jacquie Bishop, M.P.H., was returning to New York for her second year of college, before later earning her master’s in public health. That fall, she got waylaid.  

“As soon as I got back to New York, the disease was all over the place. And remember, at the time it was called GRID, or gay-related immune deficiency syndrome. So we didn’t know what it was, and we weren’t sure how it was transmitted.”

“I got a job at the Gay and Lesbian Community Center. Barbara Starrett hired me. It was my intention to go back to school immediately, but we didn’t have the money. So I worked for her. I worked for a doctor and learned everything I could, and she treats me as a medical assistant. You know, imagine a 19-year-old lesbian trying to figure stuff out.”

“Many of her clients were gay men, and many of them were wealthy and well-known artists and were semi-closeted. Barbara was known for her discretion.”

“I really did get to see firsthand the impact that the disease was having on the body. Thrush, herpes, zoster. I remember there was a man — all of them were beautiful — he got herpes zoster, which is a form of chicken pox, but with a compromised immune system, it can be very, very devastating. His entire side of his face had become deformed by the zoster, and side of his mouth. And at the same time, he also had thrush. Having some clinical experience with it helped me to understand just really how devastating this thing was.”

“One of the things I was thankful for with Barbara was she taught me how to not be afraid. She would teach us how to take the pump, how to do a vena puncture, just taking your blood, you know, and putting it in a tube. She taught us how to do it without gloves, because she believes that human touch was really important. It wasn’t just a disease, it was homophobia. It was Barbara who taught me about whole health, and seeing the person, not just their disease.”

“There was a lot of laughter and dark humor. We had a coworker, Tim Conley, he was fabulous; former theater queen. On Monday mornings, Dr. Starrett would come in and tell us who had been admitted to the hospital over the weekend. We needed to pull their files. And she would need to do notes on them. She would also tell us who died. Tim created what he called the ‘dead files.’ Barbara would tell us who died, and Tim would go and grab their file and throw it into a box.”

“I feel like that time period I grew into my lesbianism; I grew into my sense of self. There was an urgency, like we were being pushed forward, because we had to get to the next person who was dying. We had to run to them. And whether it was in the practice or in your friendship circle or just some casual person who you would see at the community centers — you both were going in to attend different meetings on a Friday night, and you would see them every Friday, and then you wouldn’t. And you began to be afraid to ask how they’re doing.”

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