Blog

By Terri L. Wilder

Each year, the world recognizes Zero HIV Stigma Day on July 21 to commemorate the birthday of activist Prudence Mabele. In 1992, Mabele became the first woman in South Africa to disclose her HIV status. This year, I found myself in Munich at the International Conference on AIDS on this important day. Over dinner with a colleague, I mentioned the significance of Zero HIV Stigma Day, and our conversation naturally turned to the persistent issue of HIV stigma in our society.

I shared a poignant story about my hairdresser from the early 1990s. To conceal the fact that he was living with HIV, he wore a large white lab coat to hide the weight loss caused by HIV complications. In a private moment after a haircut, I whispered to him about a book on HIV that I thought he might find helpful. I whispered because I knew how dangerous HIV stigma can be, and I wanted to protect his confidentiality. Sadly, after he passed away, his business partner sued his estate because she claimed that his HIV status had caused a loss in business once it became known he died of AIDS-related complications.

I also recounted the story of a friend diagnosed in the early 2000s, who has only shared with a few people that she is living with HIV. Despite my invitations to HIV conferences and referrals to women’s HIV organizations, she remains too scared to engage. Her fear, rooted in the stigma she might face, is understandable but deeply saddening. She lives in a Southern town where such fears are intensified, yet I know she would find support and community if she took that first, daunting step.

HIV stigma continues to impact our community profoundly. It fosters loneliness and isolation and can even be deadly — as people are either too afraid to seek care or are outright denied it. I recently learned about a man with HIV in my community who did not receive the care he needed in his assisted living home because the staff refused to touch him. This is why SAGE continues to advocate for LGBTQ+ and HIV Long Term Care Bills of Rights across the United States, which would protect people from this type of treatment.

This is not a relic of the past; HIV stigma persists in the ways people react to those living with HIV, in their conversations about it, and in their silence. Ending HIV stigma requires a concerted effort from all of us. Talking openly about HIV can help normalize the topic and provide opportunities to correct misconceptions. Everyday interactions and conversations about HIV can make a significant difference. If each of us talks openly about HIV in an accurate way, we can cumulatively change how society perceives and responds to the community of people living with HIV.

 

 

For example, when I am traveling for work and people like restaurant staff or Uber drivers ask about my visit, I do not shy away from telling them I am in town for an HIV conference or meeting. These conversations are valuable opportunities to raise awareness and talk about the work I do and the experiences of people in our community.

The language we use also matters. This year, many organizations released resources to help avoid stigmatizing language. The National Institute of Allergy and Infectious Diseases (NIAID) has an HIV language guide that provides excellent information on this topic.

To combat HIV stigma, we must speak out and educate others. I urge you to share the HIV community’s stories, correct misconceptions, and use inclusive language. Further, you can support those living with HIV by connecting them with resources and communities that can help and by joining our Action Squad to stay up to date on HIV advocacy opportunities. By taking these actions, we can help create a world where HIV stigma no longer exists.

Terri L. Wilder has a Master of Social Work from the University of Georgia and is SAGE’s HIV/Aging Policy Advocate.