“You see that star?”
Rita McDaniel points to a star-shaped trophy atop her bureau. She is lying down in her bedroom, surrounded by a dozen pink plush pigs.
“I just won that [award] last year. That’s a long-term survivor’s award.”
McDaniel, 54, has lived with HIV for 24 years. Since her diagnosis, she’s fought against the stigma of the disease with the support of her family and worked to increase HIV and AIDS prevention in Durham County. Last November, McDaniel was recognized nationally for her HIV advocacy work in Poz Magazine , along with 99 other women HIV/AIDS advocates.
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But she never thought she’d receive a survivor’s award when a doctor came into her waiting room in 1993 wearing a mask and gloves.
“I had to go down to the health department and get my results, and I remember it being very cold — not temperature-wise outside, but the atmosphere in the room,” McDaniel said.
“The doctor came back in with a face mask and gloves, and he told me I needed to take some medication. He didn’t really explain to me why or what’s going on, where I was headed. He just said I needed to take this medication or I was going to die.”
Some doctors, still fearful of the disease, wore masks and gloves in 1993 — despite the Centers for Disease Control finding a decade earlier that HIV could only be transmitted through bodily fluids.
At first, McDaniel wasn’t worried about receiving her test results.
“I never knew anyone with HIV,” she explained. “So I never knew what to expect, and I knew very little about the disease itself.”
McDaniel told her five children first. None of them knew enough about the disease to be afraid. “I explained to them that by me being positive, that they couldn’t touch my blood or any bodily fluids.” McDaniel used bleach and gloves if she bled or threw up, protecting her children from exposure.
McDaniel later learned she had contracted HIV from her late second husband, who was an IV drug user and died from Hepatitis C. She says she doesn’t blame him — he didn’t fully understand HIV at the time, when the illness was less understood. “He was carrying a dark secret,” she said.
'Like swallowing gravel'
In 1994, a year after her diagnosis, McDaniel stopped taking her medication regularly because it made her fatigued, with headaches and vomiting.
“I couldn’t understand why I was feeling worse if this medication was supposed to make me feel better,” she said. McDaniel was also struggling with an addiction to crack cocaine when she found out she was positive.
For the next 16 years, she stuffed her unused medication into an army duffel bag. After stopping her medication, she developed pneumonia, severe infections and a painful yeast infection in her throat called thrush. “It felt like me swallowing gravel,” she said.
In the first few years, after her condition progressed to AIDS, doctors told her twice she had six months to live. But the medicine still made her feel sick. In 2010, she went into rehab.
“I was tired of being high, I was tired of being sick,” she said.
Today, she’s been clean for nine years and takes four pills every day, down from eight to 12 pills two decades ago.
She knows her struggle was hard for her family. “They had two elephants to carry," she said, referring to her substance abuse and HIV/AIDS diagnosis.
Richard Dawkins, McDaniel’s pastor before their church, Soul Harvest Fellowship Ministries, closed in 2016, has counseled McDaniel through her disease.
“One of the things I tell her is, ‘Rita, you need to be around so that you can see the change that’s going to happen in your children’s lives,'" he said. "So do what you have to do so that you’re still around to see all of the benefits of your faith in action that will show up in your children one day.”
Today, while still HIV positive, McDaniel considers herself “cured” because modern treatments have reduced the viral load in her bloodstream to near zero.
"I’m going 24 years strong, and I’m still here," she said. "Most of the problems I have now that are related to health is because I’m getting old!”
Last September, the CDC cited research showing current anti-retroviral treatments can keep HIV from being sexually transmitted.
But McDaniel said HIV’s stigma still gets in the way. Some people are afraid to touch her. Once, after McDaniel told a blind date she was positive, "He was like, ‘you’re trying to kill me,'" she said. "And I said, ‘No, it’s the ones that don’t tell you that are trying to kill you. Because I’m giving you a choice. This is what I have - it’s up to you to decide whether you want to have a relationship with me.”
Others have been accepting.
Recently, she was crying on her way back from the doctor’s office when a male friend asked why she was upset. “And when I told him, he was like, ‘is that what you’re sitting here crying for?’ I was like, ‘yeah,’ because I didn’t know how he’d take it. Well he was upset because we’ve known each other for two years and I never told him.”
Helping other women
Since 2010, McDaniel has worked at the Triangle Empowerment Center where she runs the “It’s All About Me” group that teaches women 19 to 35 about safe sex, HIV symptoms and prevention. Nationally, women make up a fifth of all HIV cases according to a 2017 CDC report.
McDaniel has also started “Pillow Talk,” a pajama party for black and Latina women that provides information on sex toys and prevention. At the event she also talks about pre-exposure prophylaxis (PrEP), a medication that prevents sexual transmission of the disease.
McDaniel's outreach work has not gone unnoticed.
“When I look around and I don’t see enough community members at a meeting, there’s a need for Rita,” said Terry Munn, CEO of the Triangle Empowerment Center. “With her community connections and contacts, she’s well-informed about what does and doesn’t work in the community — be it lack of resources, funding, or poverty in general.”
“She’s a true leader who reaches those most impacted by HIV through advocacy, peer education and community outreach,” wrote Poz magazine.
Durham County had the fifth-highest rate of new HIV infections in North Carolina from 2014-16, according to the NC HIV/STD Surveillance Report. The county has responded in several ways.
“We’ve actually been doing quite a lot,” said Dr. Arlene Seña-Soberano, medical director for the Durham County Department of Public Health. The county has worked on raising HIV awareness, promoting testing, and collaborating with community partners like the Triangle Empowerment Center to increase prevention, Seña-Soberano said.
But there’s still room for improvement, said Dr. Mehri McKellar, associate professor of medicine at Duke University and director of the Duke PrEP clinic. She said the county needs to raise community awareness of PrEP as well as PrEP retention, while increasing access to HIV treatment options.
McDaniel sees ending the stigma as another essential part to ending the HIV epidemic.
In her room, she grabs a plush pig and cradles it. She loves pigs, she says. Like her, people often don’t touch them.
“Pigs are, I think, the worst-treated animal, because they’re given slop and they’re in the mud," she said. "I think that’s how I am. I’ve had a rough life in some sense, but then I have the satisfaction of seeing times change and seeing progress being made, and having that satisfaction of I can do something, I can help someone.”
“No one should have to go through what I went through, because it’s a lonely dark place.”