Behind Love Notes: The Importance of Lived Experience in HIV Advocacy - Triad Health Project | Our Future Free from HIV
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Behind Love Notes: The Importance of Lived Experience in HIV Advocacy

By T.G. White

Throughout history, we have relied on storytelling to shape the ways we navigate our journey through life. From ancient cave illustrations to generational folklore to posts on social media, our survival has always been dependent on sharing and gathering information. In the world of sexual health justice, this feature of humanity remains true. The emergence of the HIV/AIDS epidemic in the eighties told a very specific story. Its main themes: fear and terminality. This hysteria led to decades of misinformation which left the truth of people living with HIV out of the narrative. Triad Health Project was birthed from this injustice and remains a place where every voice is heard and every story is honored.

Love Notes: A Night of Jazz and Community Narrative, featured stories that represent the unique and powerful community we share at THP. As a case manager, one of my favorite parts of the job is being, what I like to call, a story-keeper. I have the privilege of spending my days learning about my client’s lives. When they share the story of how they became positive and when they found out, it never appears to be easy. I’ve listened as some spoke with a shaking voice as their eyes welled up. I’ve seen the sense of shock come over faces like the grief of a ghost of the past. Many have told this story over, and over as case managers and medical providers have changed over the years. Others are telling it for the first time. Yet, most speak of an unwavering faith in the goodness of life and have found empowerment in the recounting. 

The stories shared at Love Notes represented three individuals who have each been positive for over two decades. One spoke of the ministry she has grown, deservedly entitled Divine Restoration and Healing Ministries. Another feels most proud to be a role model for her granddaughter. The other conveyed the power of healing through community. Like these individuals, almost every single client can confidently say they feel as though they have been able to advocate for themselves and others since their diagnosis. 

This sentiment is almost always followed by expressions of gratitude, and many attribute their lives to the support they found when they were embraced by the warm and welcoming arms of those at THP. While the last 40 years have brought revolutionary change with life-promising treatments and effective prevention options, barriers to care remain a constant adversary in our fight for a future free from HIV. During our time together, many clients recall when they were taking 30 pills a day to stay alive. Most describe experiencing some form of discrimination as a result of their status. All have experienced barriers to care, which include, disproportionate rates of exposure, healthcare injustices, limited access to transportation, food insecurity, access to and maintaining adequate housing, and healthcare fatigue, to name a few. 

Sexual health stigma is one of the most influential barriers. It undermines community connectedness and personal empowerment—the very elements that are critical for meaningful and long-lasting change. The solution? Advocacy based on shared lived experience. The community shared at THP not only supports those living with HIV but has been the life force of the progress made thus far, and it is their stories, their voices, and their direction that will bring the fulfillment of THP’s mission. Those of us in support of this mission must listen and prioritize their knowledge.

Folks who are living with HIV have spent many, many years on the perimeter of healthcare. We owe this community a debt for their fervent and unrelenting service to others, for their perseverance in the face of misinformation and stigma, for their generous contributions to art and culture, and for those who they’ve lost, many of whom were grieved in secret. By supporting our work at Triad Health Project, you are making a commitment to stand for sexual health justice. With this support, you become a part of the Love Notes written to our future free from HIV.