What would they say if they knew?

Last Modified: 7/02/2021

HIV testing day

This post was written by Andrew Barchus, NP, PPG – Infectious Diseases, in honor of National HIV Testing Day.

“What would they say if they knew?” A young man asked himself this question on the way home from his doctor’s office with the news that he had just tested positive for the human immunodeficiency virus (HIV). Sitting alone in the worn-out seat on the bus heading back to his grandmother’s house, he began to consider what this news might mean for him long term. He looked the other passengers in the face as his new identity began to take shape. He felt a terrifying sense of different that he had never felt before.

The voices in his mind recounting friends and family telling a story at Thanksgiving of an uncle they knew had HIV. The ensuing whispers of displeasure gripped his mind as he sat facing the elderly woman sitting across from him in the handicapped seat. She had such a sweet face. What would she say if only she knew?

Just as the bus pulled up in front of his grandmother's house, the deep gray skies let loose. Typically, he would have run through the pouring rain, but not this time. After the bus dropped him off, he soberly set one foot in front of the other, then rang the doorbell. He wondered whether he should tell his grandmother or simply talk about the rainy day. 

Stopping the stigma

While this story is a dramatization, it reflects numerous stories that I have heard through the years from clients who have received news of a positive HIV test. Unfortunately, while this is certainly not a universal response, it is a reaction that is all too common. I am beginning my 11th year of caring for individuals living with HIV in a clinical capacity, and over time these stories and others like them have burned a path in my mind.

It’s not difficult to understand why these stories are so impactful. However, what is it about a diagnosis of HIV that leads most newly diagnosed individuals to experience that same dread and loneliness that the young man above experienced? Regrettably, many unfounded answers to these questions are still circulating a mythical history of the HIV epidemic. For example, questions about the source and risk of transmission of what was initially referred to as Gay Related Immune Deficiency (GRID) later became known as AIDS and later still, understood to be known as the virus that causes AIDS, or what we now know today as HIV.

We all justifiably cringe when we recall stories of discrimination because of an HIV diagnosis. We remember how spaces that many thought to be a refuge for the ill and infirmed became equally isolating. Some rose to the occasion even when the source of transmission was unknown. Sadly, this fear unnecessarily grew arms and legs of discrimination.

Here we are, 40 years later, and we’ve seen a greater understanding of the impact of the virus on our immune system. Our ability and capacity to extend life through the advent of antiviral medication means that we can now change the narrative. We can shift the conversation from tragedy to one of management. For decades now, we’ve seen individuals, families and communities thrive. Now, we can confidently look a young person in the face and tell them they will likely live to see their children and grandchildren grow up.

Final thoughts

While reality has changed from the early days of the epidemic, the reaction and response of a diagnosis of HIV still lean toward isolation and fear. So, in honor of National HIV Testing Day, let us, as a community, rally around those telling their story through the persistent stigma of fear and ostracization because they have tested positive for HIV. Let’s demonstrate unity and resilience in the face of discrimination. Although there are many ways we can show solidarity, perhaps on this day, the grandest gesture is getting tested, then telling someone about it. I can’t think of a better way to say, “We won’t let you suffer alone.” After all, you never know who might be listening to your story.

"Learning to speak with one another is no guarantee of peace, but it is its precondition." -Solon Simmons


Helpful resources

Centers for Disease Control and Prevention

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