BLOOMINGTON, Ill. — “Rejection is my redirection.”
Tonie Scott now lives by that phrase. It helps describe her evolution in the last seven years, since she was diagnosed with HIV. It helps convey how she’s changed in that time from a woman desperate to be accepted, into a woman leading others toward confidence and away from stigma.
Tonie Scott of Bloomington has found empowerment in speaking out about living with HIV.
“I’ve begun to see HIV as a blessing,” says Scott, 50, a mother of four. “It has taught me self-love and self-acceptance. I just really want to encourage others, and just give others hope. And inspire mainly women to step up and stop hiding.”
Her message is important: for decades, women have accounted for 18 to 20 percent of new HIV cases annually. HIV’s persistent affect on women is why Illinois HIV Care Connect has made Women and HIV a top priority with a campaign that started in October.
HIV among women often overlooked
About 67 percent of people carrying HIV identify as male, and about 60 percent identify as LGBTQ+, says the CDC. This means straight women overall can have a hard time finding information, diagnosis, treatment and support for living with HIV.
Women who are Black, and who are transgender, face even greater challenges than white cisgender women like Scott. More than half of women living with HIV are Black, and the CDC says 14 to 40 percent of transgender women live with HIV, compared to less than 1 percent of the general population.
Overall, the CDC says women living with HIV are at greater risk for several additional health challenges, says Melissa Graven, with the Illinois Public Health Association, which oversees Illinois HIV Care Connect. Those challenges include cervical cancer, heart disease, and menstrual cycle problems.
These statistics are driving Illinois HIV Care Connect’s focus on women.
“All too often, women prioritize the needs of their loved ones over themselves,” Graven says. “Through this campaign, we hope to encourage, educate and empower women on what precautions to take to prevent HIV or, if living with HIV, what they can do to manage and minimize the health impacts of HIV as a chronic health condition.”
History of being abused led to greater risk of HIV
Though white, straight and cisgender, Scott shares something in common with many women who live with HIV: a history of being abused. More than half are victims of domestic abuse, twice the rate of the general population, says the National Institutes of Health.
“Several studies have shown that women with a history of physical and/or sexual abuse are more likely to be living with HIV, especially if that abuse first started during their childhood,” writes The Well Project, a nonprofit that focuses on HIV prevention among women and girls.
It’s a fact that surprises many people who assume HIV is only a challenge for gay men and drug users, and Scott says she’s directly experienced the stigma that comes with those assumptions. “I’ve had people say, ‘Ok, you say you’re a heterosexual woman and you don’t use drugs with needles and all that. You weren’t born with HIV. You’re not a gay man. So how did you even contract HIV?’ “
Scott says that like the statistics say, her story of HIV starts with being abused as a child. People around her abused her physically and emotionally, and she grew up with kidney and bladder defects.
As an adult, she continued to experience abuse from the men she dated, and physical abuse so severe it has misaligned the bones of her face, torso and feet to cause constant pain.
So when she met an especially attentive and complimentary man in 2017, she was smitten. “He was real kind, real nice,” she recalls. “He talked to me and would open doors for me. I wasn’t used to that type of a man.”
But within a few months, she learned he’d been treating a lot of women just as nicely. In fact, one of those women had given birth to his child and assaulted Scott. One of them had also told her, cryptically, “you need to get tested.”
Scott recalls the woman didn’t tell her what she should test for. “I didn’t even think about HIV. I hadn’t heard about it in years,” she says. “I was thinking herpes, gonorrhea… something like that.”
The emergency room she visited said “we don’t do that” and encouraged her to call the local walk-in clinic, or her regular doctor. But the clinic also said “we don’t do that,” and she wasn’t comfortable telling her doctor, or confident he would know how to respond.
Diagnosis led to transformation
Scott finally found the help she needed at Positive Health Solutions, a nonprofit health care provider in Bloomington.
She began taking anti-retroviral medication within weeks, and her viral load has been undetectable for years. As part of taking better care of herself, she stopped smoking cigarettes six years ago for the first time in decades.
While she still struggles with a pattern of rejection from men, and works hard to tell herself “I am loved,” she’s also found her voice.
“Rejection has become my redirection,’ she says. “I’ve realized it’s time to speak up and stop being so quiet and being scared of speaking out. If somebody doesn’t do it, it’s not going to get done, and people are going to continue living in shame and fear.”
Up until a year ago, Scott was instead “self-isolating.” For the years since her diagnosis, she had been constantly plagued with thoughts of self-harm, cried constantly, and endured panic attacks several times a day.
“I felt scared to be around anybody, especially men,” she said. “I had gotten to the point where I didn’t even want to talk to any man. I had lost trust in anything that any man ever said to me.”
But in April, she spoke at her church, just before she was baptized. She shared about HIV and the trauma she’s experienced. People not only listened; they embraced her.
Scott has since found that the more she shares, the more empowered she feels. And the less prone she is to the depression that has plagued her all her life, even before her diagnosis.
Her case manager says she’s honored to witness Scott’s evolution and empowerment. “She is proof that women living with HIV are much more than their diagnosis,” says Molly Graham of Positive Health Solutions.
“Her HIV diagnosis came with feelings of betrayal, loss of trust and fear of judgment. Through counseling she has gained skills in self-care, confidence and advocacy. By continuing to prioritize taking care of herself, she is now sharing her story publicly and supporting other women as they manage their HIV diagnosis.”
Speaking out combines with healthy patterns to improve quality of life
Scott believe her experience of abuse, in addition to living with HIV, is familiar to a lot of women. “I do feel that a lot of women, once they do get out and away from all of the abuse and trauma, they feel lonely and horrible, and even guilty and unworthy. And unloved.”
Learning to be empowered by the stigma, and often rejection, she experiences because of HIV has helped her “find her voice,” Scott says. She now is volunteering herself for more speaking opportunities with Illinois HIV Care Connect. She’s also writing a book about her experience.
Destiny Smith, left, and Kerry Wells are HIV advocates who have found empowerment in speaking out.
Speaking out has also empowered other HIV advocates who are women. Destiny Smith, a Davenport woman who contracted the virus as a teen, wrote a book about her experience and now speaks at HIV advocacy conferences regularly. Kerry Wells, a transgender woman from the Quad Cities, joined Smith in “We Are Still Here,” a document about the history of HIV prevention created by The Project of the Quad Cities, which serves 22 counties along the Iowa/Illinois border with HIV and STI prevention and treatment, harm reduction and LGBTQ+ health care.
Both have said speaking publicly about the challenges they faced in receiving diagnosis, treatment and support — and knowing they are helping others — has helped their mental health. ““If I’m able to share my story, and if I’m able to help one single person to get over the stigma that comes with the disease, and to be included, then my job is done,” says Wells, who is also transgender.
“You never know who you can help just by telling people your status,” Smith said. “If it’s out of sight, it’s out of mind. If we’re talking about it, we’re thinking about it. I’m out to normalize the HIV conversation.”
Scott has also taken another big step forward in her HIV self-care: receiving her anti-retrovirals as an injection every other month, instead of a daily pill. Given that her other physical conditions and their medication already cause nausea, the injectable form of anti-retrovirals has drastically improved her quality of life.
She eats foods like blueberries and apples that won’t further aggravate her delicate condition. Cannabis (legal medically and recreationally in Illinois) helps her keep up an appetite and lessen anxiety, Scott says.
She reads, listens to music, writes and prays constantly.
“I took the initiative,” she says. “I want to help stop this stigma, and dispel the fear of being stigmatized, and the shame. From HIV AND abuse. All of it.”
Learn more about Illinois HIV Care Connect’s Women and HIV campaign here. You can also take this quiz to check your awareness of women and HIV.
To enroll in Illinois HIV Care Connect and begin receiving help obtaining resources, click here.
