May 3, 2011
For years Del'Rosa Winston-Harris kept her HIV diagnosis a secret. When seeking HIV/AIDS resources, she says, "I went to places that were way outside of where I lived so no one could identify me." When a friend ran into her at the hospital and asked why she was there, "I said, 'I'm here to get my cancer checkup,' " the 49-year-old recalls. "My biggest concern was that I couldn't tell anybody."
A fear of disclosing one's HIV status is not unusual because stigma surrounding HIV and AIDS is ingrained in American society, says Bambi W. Gaddist, Ph.D., executive director of the South Carolina HIV/AIDS Council. Most people would rather look the other way than acknowledge how many people are living with HIV, Dr. Gaddist says. "After 30 years of AIDS, people are still asking, 'Is that a problem?' " And unlike diseases like cancer and Alzheimer's, there's the often unspoken rationalization that those with HIV brought the disease upon themselves.
"HIV is a human immunodeficiency virus that's causing a fight inside my body, yet people have made it about lifestyle," says Elveth Bentley, 46, of Atlanta. As a result of that widespread perception, many women hide their HIV status, fearing that people will judge them for having sex or succumbing to an addiction.
But AIDS activists are hoping to change that. In March, SisterLove, an Atlanta-based reproductive-health organization that focuses on HIV/AIDS, launched a mini documentary series called "Everyone Has a Story," which features interviews with Black women who have HIV sharing the realities of life with the disease.
"We want to get more HIV-positive women talking and disclosing and really stepping into leadership where HIV/AIDS is concerned in the community," says Tiffany Pennick, a spokeswoman from SisterLove. The documentary series is part of the organization's 2020 Leading Women's Society program, in which 2,020 HIV-positive women will be trained over the next decade to help other women across the world better manage their sexual and reproductive health.
The Power of Disclosure
Both Winston-Harris and Bentley participated in the documentary series, which covers such experiences as disclosing HIV status to family members for the first time, finding a support network and dealing with strained family relationships. While both women are now more comfortable sharing their status with loved ones and strangers alike, the documentary gives them an even larger audience for their stories.
Winston-Harris began the process of disclosure after watching a friend who'd kept her diagnosis a secret die alone. Realizing how isolating the stigma of HIV could be, she had an epiphany. "The idea of dying alone is one thing, but living alone is another," she says. "I realized somebody had to speak up and let people know this is a disease that anyone can get."
For Bentley, the road to disclosure began as she noticed how damaging shame could be. "You lose your sense of identity when you begin to buy into the stigma," she says. "You let the disease define you." She also saw that self-defeating behaviors often accompanied shame, such as avoiding the doctor's office or HIV clinic because of a fear of being seen.
Since disclosing their HIV status, both women have felt empowered and seen their lives improve. "I've learned how to communicate and socialize with any kind of person," says Winston-Harris. I can meet people where they're at now. Pre-HIV, I didn't know how to do that."
Bentley feels the same: "If I tell you about my HIV status myself, I've taken the power from you to say anything about it. What can you really say that I have not already said?"
There's also a political benefit that comes from sharing one's struggle with HIV. "When we get more women to do that, then we will see a social movement like we've seen with breast cancer," says Dr. Gaddist. "Until we get to that, we'll never have a social change."
For those who are struggling to move past the stigma of their diagnosis, Winston-Harris and Bentley share some of the insights that have helped them overcome the shame;
Forgive yourself. Before you can learn to ignore others' judgments, you've got to get past your own, says Winston-Harris. "I can remember being so angry with myself," she recalls. Once she stopped blaming herself for her HIV status, talking about it became easier.
Find purpose in your story. Whether you're using your voice to educate others about HIV or to build intimacy in your personal relationships, understand why it's important for you to share your story with others, advises Bentley. When you feel fearful about opening up, let that purpose motivate you.
Know that it's a process. While disclosing your HIV status will likely get easier over time "it's still uncomfortable," says Bentley, particularly when you're talking to people whose opinions matter to you. "The unknown is always uncomfortable, but you find your voice more and more each time."
Tamara E. Holmes is a Washington, D.C.-based journalist who writes frequently about emotional health and wellness.