It Could Happen to You, Too
Activist and educator Nancy Duncan shares her personal HIV story
Text & photos by Alina Oswald
In many ways, Nancy Duncan’s is a familiar story, and yet a memorable story that still needs telling. Nancy Duncan’s is a story of a mother trying to give her child the best life possible. It is a story of a woman fighting for women’s and human rights. Nancy Duncan’s is an inspiring story of resilience, courage and determination of a long-term HIV survivor, activist and educator. And now she shares her story, in the most candid way, with A&U Magazine.
Although I’ve been in touch with Duncan on social media, reading and learning from her posts and updates on the fight against HIV, meeting her face to face makes it all so much more real. Although she doesn’t seem aware of it, Duncan looks classy in her black jeans and sweater, a distinguished person one would want to look up to and listen to.
Nancy Duncan’s is an it-can-happen-to-you kind of story. It proves that HIV can, indeed, happen to anybody.
In 1985, about a year after her divorce, Duncan was dating a man, finding herself in her second relationship she’d ever had in her life. Around that time she remembers getting flu-like symptoms that did eventually go away. “But what’s strange,” she shares, “was that I’d never been sick like that before. I didn’t know what it was.” The doctor gave her antibiotics and she got better. It was the mid-eighties, during the darkest years of the AIDS epidemic, but she was a woman, and so the doctor did not test her for HIV. “Now, looking back, I think that that was the time when I seroconverted,” Duncan says, “but at the time I didn’t know.”
At that time there were no available medications to treat HIV. AZT became available only in 1987. And so, even if people did get tested and found out that they had the virus, there was little, if anything, anybody could do for them.
A few years later, in 1990, Duncan started getting sick. She went to see her family doctor and asked for an HIV test. The question took him completely by surprise.
As her health started to deteriorate, Duncan ended up in the hospital where she was diagnosed with pneumonia. “I knew that people with AIDS could get pneumonia,” she says. “And that’s exactly what I did have. I had to have oxygen and intravenous antibiotics. I had very high fever, so high that they had to put me on an ice bed.”
While in the hospital, she asked again for an HIV test. She finally got tested, but in those days the results were ready in weeks, sometimes up to a month. That’s about how long she had to stay in the hospital.
Once out of the hospital, Duncan went again to see her family doctor and asked for her HIV test results. He told her that the results were “bad” and sent her to a county hospital. That was it. “Once you know [you are HIV-positive] you can’t not know,” she says, looking me in the eye.
Duncan found out that the man she used to date was an IV drug user. At the time, IV drug users were not considered, yet, at risk of contracting the virus. In the five years since their break-up, he never called to tell her that he tested for HIV or that he was HIV-positive.
Her son was only ten years old when she was diagnosed, and she didn’t want to tell him. But during the following two years, her health took a turn for the worse. She was in and out of the hospital a lot, and, eventually, had to quit her job. Her now twelve-year-old son was worried about her, concerned that she was always sick. So, she told him about her HIV diagnosis. “That was hard,” she recalls. “He was asking me questions I couldn’t answer.”
And, because of the stigma surrounding HIV, they decided not to let people know about her HIV status, not as long as her son was in school. A very mature, very smart twelve-year-old, Duncan’s son quickly became aware of that stigma. He didn’t have HIV, himself, but was worried that, if others knew that his mother had the virus, they would not stop by their place anymore.
In 1996, Duncan was diagnosed with lymphoma cancer. “I hit bottom,” she says. “I thought I was going to die.”
In order to treat the cancer, she had to go through six months of chemotherapy. “Chemo kills the cancer, but also kills everything else,” she explains. “I was anemic. I had to put shots in my legs every day. I had to put PICC lines in my arm, and do it myself, at home.” The only medication available to treat HIV at the time was still AZT, which had terrible side effects. Running out of options to treat her, doctors ended up giving her a “very potent” intravenous non-HIV medication, so that she wouldn’t die.
When she started the chemotherapy treatment for cancer she had to stop the treatment for HIV. “I looked like the AIDS poster woman,” she recalls. “I was ninety-eight pounds. My hair fell out.”
There was little hope that she was going to survive. Her mother, who’d stood by her side through the entire ordeal, started making arrangements to put her daughter in hospice care.
While the new HAART medications were starting to become available, she had to finish her chemotherapy first, before even thinking of trying any of the new HIV drugs. So, all she could do was wait.
My goal is to help people think about [HIV], especially married people, who think that they don’t need to worry about it.
Then, one night she experienced what Duncan now calls “the darkest time” in her life. Thinking she was a burden to her mother and son, she didn’t want to live anymore and wanted to give up. Luckily, she didn’t give up. “I’m grateful I didn’t,” she reiterates, “because it would have hurt the people I loved most in my life.” Nowadays, during her speeches, when sharing her HIV survival story, she often relates to others “how this feeling of despair can be overwhelming,” but, she adds, there is always hope.
Chemotherapy worked, allowing Duncan to be able to take the new, lifesaving HIV medications. “In 1997, for the first time in years my T-cell [count] went up. I took [the medications] for a few months and my T-cells shot up from nothing to 230. This was incredible!”
For the first time since her HIV diagnosis, Duncan had hope that she was not going to die, not right away anyway. All she wanted and was praying for was to live long enough to see her son turn eighteen. Her prayers were answered and her wish did come true.
And now that her son was not in high school anymore, she could share her story with others, without fear that her son would be given a hard time in school. She started doing public speaking engagements.
In her HIV activism and education work, Duncan was inspired by the life and activism work of a young New York woman called Alison Gertz, who went public about her HIV status in 1989. There was then a movie, called Something to Live For, based on her life. Gertz died of AIDS-related causes in 1992. Duncan started doing public speaking engagements for the Love Heals–The Alison Gertz Foundation for AIDS Education about a year ago.
In 2004, Duncan started working at Planned Parenthood in Nassau County, as a peer educator. “If they close them down,” she adds, speaking of Planned Parenthood clinics currently in danger of being defunded, “I don’t know where all these women are going to go.”
In 1998, when she started public speaking, she would share her HIV story with high school students. Nowadays, she focuses on encouraging people to get tested and become aware of HIV. And she helps spread the word about HIV awareness, prevention and education to high school and college students, and even to women in Nassau County jail.
“My goal is to help people think about [HIV],” Duncan explains, “especially married people, who think that they don’t need to worry about it.” She adds, “I think people become complacent about HIV. Some people might think that it’s no big deal now [because there are medications available]. They call it a chronic manageable disease. I don’t think of it like that, because I still feel that we have to take these pills that have some pretty nasty side effects.”
Today Nancy Duncan is undetectable. She has no hard feelings toward the man who gave her HIV. She knew then, as she knows now, that there was no way he could have known. She used to blame herself for being so naïve about STIs and for, like so many others at the time, thinking that HIV/AIDS was a gay disease and not something others had to worry about. “I believe that even today, this is [one reason why] people are still getting infected,” she says, “because they don’t think that HIV can ever happen to them. That’s what I thought twenty years ago.”
This year, Duncan started working as a peer educator at the North Shore Hospital. “They have a very good HIV education department,” she says. She also writes a CDC intervention newsletter called “Community Promise” for North Shore Hospital. In this newsletter she includes stories about substance abuse, heterosexual women living with HIV, and many others.
Speaking of women, HIV and related health issues, she cautions women to stay on top of their health. “This is why I’m still here,” she says. “I don’t miss mammograms, the eye doctor, [ob/gyn visits].”
She points out that, in particular in people with weakened immune systems, HPV can cause problems. In women, HPV can cause cervical cancer. Cervical cancer can be stopped if caught very early. She adds, “They do say that [if you have HIV] you’re more susceptible to cancer, in general, because your immune system is weaker.”
Although Duncan is undetectable, she has experienced signs of aging she never thought she would, because, for one, she never thought she would live long enough. And still, she’s very much aware that HIV accelerates the aging process in women and men. She has to be much more aware of health issues like arthritis and osteoporosis, for example. “I’m only fifty-nine,” she says. “But I have to be careful. If I fall, it’s easier to break something.”
You need to educate yourself, because knowledge is power. [And remember,] HIV is not who you are.
Staying on top of their health allows HIV-positive individuals to live life to the fullest. They can still find that special someone in their lives.
Speaking of relationships and dating while living with HIV brings up questions about disclosure—if, when, how, and also why to disclose. “You have to decide when you want to disclose,” Duncan says. She explains that maybe it’s not necessary to disclose when you go out with someone on a first date, but if things get serious and you like the person, it would be “morally not right” not to disclose.
She encourages in particular those newly diagnosed with HIV to not be ashamed, but rather share their stories to help and give hope to others who might find themselves in a similar situation. “HIV is a virus and it can happen to anybody,” Nancy Duncan says. “You need to take care of yourself, physically and mentally. [You need to] have a support system; back then [it meant] a lifeline. You need to educate yourself, because knowledge is power. [And remember,] HIV is not who you are.”
Alina Oswald is Arts Editor of A&U.