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Untold Stories: The Resilience of Survivors Living with HIV

As a society, we are facing collective trauma that will impact us for years to come, both from this global pandemic and the compounding harms it has caused. For many survivors, especially those living with HIV, processing complex traumas is already the work of a lifetime.

In the early days of the COVID-19 pandemic, NNEDV staff, in partnership with the Positive Women’s Network, interviewed survivors living with HIV about their experiences. From advocating for better treatments from care providers to building communities that care for each other, these women demonstrate a kind of resilience and courage that we can all take hope in and learn from. 

The impacts of the COVID-19 pandemic will be with us for years, if not generations, to come. Now is the time to invest in communities and strategies that don’t just center disenfranchised voices, but take their lead. No one should be stigmatized for their healthcare needs, for experiencing abuse, or for suffering the indignities that come from building a life in a society stacked against them. Yet, time and again, stigma and racism rear their ugly heads in our communities and our healthcare systems. Myths and misinformation around HIV continue to plague our society and reinforce the stigma that those living with HIV continue to experience.

 alt=At the beginning of the epidemic, little was known about HIV transmission, which lead to fear; today, we are armed with science and technology that have dismantled those myths and lead to incredible advancements in medical care. Even with these advancements, however, people are reluctant or unable to access medical support due to distrust of the medical field, experiences of discrimination, lack of resources, financial burden, lack of health care coverage, experiencing abuse, and stigma. Unless we address and challenge these biases and stigma, they will continue to lead to poor health outcomes for people living with HIV and we won’t be able to end the dual epidemics of HIV and domestic violence.

We can’t fight the evils of racism and stigma with facts alone; we need the resilience and courage of the storytellers and changemakers who can help us confront these broken systems and work in partnership to build better communities. We thank our two storytellers for sharing a piece of themselves with us and with you.

Listen to the stories: 

“We have to allow young people to speak without judging them or making them feel uncomfortable.”
“Why am I living in a silo? I mean, isn’t that what my abuser tried to make me do?”
“PWN is teaching me that we need to be around that table in the beginning.”
“If it’s happened to me, it’s happened to other women whose voices are being silenced like mine was.”
“I had doctors that really took the time to help me.”
“Women are always left out of all the conversations, of all the educational pieces.”
“In the early days, people were treated ‘less-than.’ People didn’t have a say in anything.”
“It’s never about love. He thought that he lost control, and he wanted it back.”
“Bring the human back into the disease, and not look at the disease before you look at the person.”
“That self-love came back, because it was ripped away from me when I was in an abusive relationship.”
“With stigmatizing language in HIV, we still have a very long ways to go.”

Supplemental Materials:

Resources on ethical storytelling with survivors:

Resources on resilience:

Resources for providers:

Fight stigma with NNEDV:

Learn more from the Positive Women’s Network:

Request a training: 

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