For years, Del'Rosa Winston-Harris kept her HIV diagnosis a secret. When she was seeking HIV/AIDS resources, "I went to places that were way outside of where I lived so no one could identify me," she says. 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, since there is a stigma surrounding
HIV and AIDS that is ingrained in American society, says Bambi W. Gaddist,
Ph.D., the 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 AIDS 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 of my body, yet
people have made it about lifestyle," says Elveth Bentley, 46, of
Atlanta. As a result, 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, who
are 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 for SisterLove. The documentary series is part of the organization's 20/20
Leading Women's Society program, in which 2,020 HIV-positive women will be
trained during the next decade to help 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
agrees. "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 with 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. We'll
never see financial investment in this issue domestically."
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 have 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, says Bentley. When you feel fearful about opening up,
let that purpose motivate you.
Know 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."
