What do you do when you find yourself afflicted by a insidious, incurable disease like HIV/AIDS? According to Penny DeNoble, an HIV/AIDS activist and former schoolteacher from Denver, Col., you fight back. You fight back with every tooth and nail, because it’s the only way to survive.
“Throughout my journey, I’ve learned that the more I tell my story, the more healed I become and the more I fall in love with myself all over again. The more I feel equipped to fight. To fight another day,” Penny says.
It’s been more than 15 years, but Penny can still vividly recall the moment she was diagnosed with HIV/AIDS in 1986. In the mid-1980s–an era when little was understood about the inscrutable disease, and even fewer treatment options existed—a diagnosis of HIV was a de facto death sentence. “I was paralyzed. I was shocked,” Penny remembers.
At the time of her diagnosis, Penny’s husband, Billy DeNoble, was dying of AIDS. A former illicit drug user, Billy acquired HIV via the sharing of contaminated needles and lived with the virus for many years without knowing he was infected. By the time he began to experience symptoms in 1985, the virus had progressed to AIDS and was ravishing his body.
“[My husband] infected me, unwillingly,” says Penny, who hadn’t known about her husband’s previous drug abuse. In spite of that, Penny didn’t harbor any resentment towards her husband. When Penny called Billy and told him that she had tested HIV-positive, “It was the hardest phone call I ever had to make in my life,” she says.
“I felt fear and sorrow, at having to share [that news] with him,” Penny reembers. “He wept and apologized profusely, knowing he had passed the virus on to me. But I reassured him that it was okay, that I forgave him.”
Billy DeNoble died of AIDS just three days after his 36th birthday, on July 14, 1986. After grappling with the one-two punch of the shock of her diagnosis and then the subsequent death of her husband, Penny found herself shrouded in stigma, shame and despair. In the 1980s, many misconceptions about HIV/AIDS existed—chief among them that AIDS was primarily a gay man’s disease—and Penny faced profound discrimination from her community, her friends and even her own family.
“Once my social community learned of my diagnosis, they disowned me. When I would go out socially, they would whisper and point fingers at me. No one would come up to me and ask me how I was doing, what I was feeling,” Penny says. “It was hurtful to the core.”
Deeply wounded by social ostracism, Penny retreated into isolation, opting to suffer in solitude. “I hid myself away. I would go to work and return home again and sit there alone. I was dying. I was dying from a broken heart,” she remembers.
In 2002, after years of cowering in silence, Penny finally summoned the strength and courage to share her story at a women’s church retreat. It was the first time she had ever publicly opened up about her struggle with HIV. Later, a woman pulled Penny aside and told her that she had literally saved her life. “She had been thinking about killing herself. But listening to my story, she said, made her realize that she wasn’t alone—there are other people out there who were suffering too,” Penny says.
It would prove to be one of the most impactful, eye-opening moments of Penny’s life. Recognizing that thousands of women were suffering in silence because they lacked support, information or access to treatment, Penny was inspired to use her voice and her story as a way to empower others in the HIV community.
In 2009, she founded The Issue of Blood, an outreach and consulting service that aims to bring awareness, education and information about the prevention of HIV and other STIs and unplanned pregnancies. With the organization, Penny hopes to foster a crucial social network for individuals affected by HIV/AIDS and also create more awareness about the disease.
“Once I reached that place of self-love and found a spiritual community accepted me, I was determined to help other women living with this illness do the same. I wanted to assist other women so that they didn’t have to go through the pain of alienation and self-imposed shame that I went through,” Penny says.
In addition to her work with The Issue of Blood, Penny is a member of several other HIV/AIDS advocacy organizations, such as The White House Project’s MAC AIDS Fund Advisory Committee, Positive Women’s Network, and AIDS Alliance for Children, Youth and Families. Recently, Penny was recognized on the 2013 POZ 100, a list that celebrates the “unsung heroes” of HIV/AIDS activism.
“Helping others has helped me survive,” Penny says. “I want to inspire other HIV-positive women out there to find their voice, too.”
Although significant advancements have been made in the landscape of HIV/AIDS research, there is still a lot of work that remains to be done, particularly when it comes to awareness and education, Penny says.
“1.5 million people are infected with HIV in the US, and half of them are not aware that they are carrying the virus in their body,” Penny says. “Knowledge is power. We continue to fail as a society by not opening up our doors to these kinds of conversations and by not educating people about their risk factors.”