As a woman living with HIV, Alicia Diggs finds it hard to start a relationship. Most men want to have sex but not commit, she said. Some will ignore her after their first date. Others will tell her they're not emotionally ready but want to remain friends.
Then there are those men who should know better but shame her nonetheless. A few years ago, Diggs met an HIV researcher who became disgusted after she revealed her status to him. Even though he specialized in the virus, he berated her for contracting HIV, she said.
"I was devastated," said Diggs, board member of the North Carolina AIDS Action Network and member of the North Carolina chapter of the Positive Women's Network-USA (PWN-USA). "That was the worst, but I have thick skin now."
Diggs became celibate about four years ago shortly after learning she had an undetectable viral load. She knows that because her load is suppressed the risk of transmission is negligible. But the ignorance and stigma she faces is not worth investing in dead-end hook ups when she wants a relationship, she said.
The oft-cited 2014 European PARTNER study found that no linked transmissions occurred among nearly 900 surveyed mix-status couples that had vaginal and anal sex without condoms when the HIV-positive partner was undetectable. But many women with suppressed loads still experience shame around their status. Many are convinced they're undesirable. Some worry they're still infectious. Others may take extra precautions during sex or avoid the act all together. Then there are those positive women who forego motherhood despite wanting children.
"It's unfortunate, but I don't think it's shocking," said Shannon Weber, director of HIVE, an HIV service and education center out of the University of California, San Francisco.
Health care professionals bear much of the blame for the stigma placed on women living with HIV, Weber said. Today, many of the women who enter HIVE have avoided pregnancy for years because they feared passing the virus to their child. Some of the women, she continued, waited because they didn't know about the link between undetectable loads and negligible transmission risks. In most cases, though, that anxiety took root because of discrimination by a physician.
Many doctors believe that women living with HIV should never have children or engage in sex at all, Weber said. That disparaging attitude could stem from pure ignorance or pure intolerance -- or both. But, whatever the reason, she said, those doctors will often actively discourage -- or prevent -- patients from having children.
"We don't have this framework or standard of care that it's a woman's choice," said Weber, founder of Please PrEP Me, an online directory of California doctors who provide pre-exposure prophylaxis (PrEP). "It's still about the provider giving women permission. That's not acceptable."
Stacy Jennings had been living with HIV for 15 years when she decided to visit a new obstetrician/gynecologist in 2011. She was in a good place then. She had been attending support groups and writing poetry. Her viral load was undetectable and had been for several years. Jennings was healthy both mentally and physically. But the doctor threw her for a loop, she said. He told Jennings, who has an adult son, that she shouldn't have another child -- that he should "take [her] insides out" to keep her from giving birth.
"He talked to me like I was an animal," said Jennings, a member of P.O.S.I.T.I.V.E Voices and PWN-USA's South Carolina chapter. "That really hurt me. That really hurt me for a long time."
That experience kept her from pursuing relationships until three years ago, when she met her current partner. When he expressed his desire to have a child, though, Jennings found herself scared. She knew her suppressed load meant she couldn't transmit the virus to her fetus. But she still worried. When Jennings learned was pregnant in August 2013, she felt both excitement and devastation.
Jennings was induced at eight months. Her baby had fetal anemia. He was bleeding in the womb, but doctors waited 14 hours to deliver him, she said. Her newborn son died the next day, on March 20, 2014. Jennings claims his death was due to deliberate medical malpractice. She believes the attending doctors and nurses at the South Carolina hospital didn't save her son because she is HIV-positive. Jennings also claims they sterilized her against her will for this reason.
"What happened to me opened my eyes," said Jennings, who is in the process of filing a lawsuit against the hospital. "Even with 30 years of the virus, there's still a devastating impact and ignorance among doctors."
One way to dispel myths and prejudices among physicians is to educate them about transmission risks and provide training around HIV health care. Weber said it's important for HIV services to be included in routine care, rather than to exist as its own specialty. But this starts with medical organizations releasing up-to-date sexual, reproductive and other health guidelines that are inclusive of HIV issues. "HIV should just be scooped [in], so it's not living in its own silo," she said.
Transgender women living with HIV experience a unique set of anxieties around their status. As a black transgender woman, Tiommi Luckett said people assume she is a sex worker based on her appearance alone. If police in Arkansas, where Luckett lives, were to arrest her on suspicion of solicitation, she would face additional charges because of her HIV status. In Arkansas and 31 other states with HIV-specific criminal laws, a person living with HIV could be arrested for not disclosing their status or for spitting at someone, even though saliva cannot transmit HIV.
There's also the fear of retaliation. Luckett said she often encounters men who find her attractive but cannot handle their attraction to transgender women. This internalized transphobia puts Luckett's safety at risk as transgender women of color face higher rates of violence and homicide. So, Luckett uses dating apps and tries to date only HIV-positive men. She said she tells interested men her status and that she's transgender through text or messenger before they meet in person. "I felt like doing it online was one way to safeguard myself," said Luckett, communications coordinator for the Well Project and a member of Positively Trans (T+) at the Transgender Law Center. "I have to be mindful of who I allow into my spaces."
Not all women living with HIV, especially transgender women, feel safe revealing their status. But education and visibility can help reduce stigma and shame nonetheless, Luckett said. Those who do chose to disclose, she continued, could teach others about HIV prevention, treatment and inclusion.
Diggs believes women have a responsibility to share their "experience and knowledge" to change the preconceptions of the HIV-positive community. "It's important that people know that people living with HIV can live long, healthy and vibrant lives," she said.
But advocacy is about much more than affecting cultural change. Diggs and other women believe speaking their truth publicly can be a very personal and restorative experience -- one that puts them on a road to self-acceptance. There's a certain healing power in sharing your life's tale, they say.
"I can breathe," Jennings said. "I can be free every time I tell my story."