Hi, I’m No_Bathroom_3291, and this is my story.

In January 1990, I was diagnosed with HIV. That was 35 years ago. If you had told me then that I would still be here today, sharing my story, I don’t know if I would have believed you. HIV was a death sentence back then. People didn’t just assume I would die – they expected it. Within a week of my diagnosis, I was asked what people should include on my panel of the AIDS Quilt. That was heartbreaking to think about. But here I am, still living, still learning, still proving people wrong.

Over the years, I’ve been asked a lot of questions. Some are difficult, some are painful, and some have made me reflect on things I never took the time to consider before. But I believe in honesty. I believe in telling my story the way it happened, not the way people think it should be told. So, here it is.

Did you ever mourn the version of yourself before the diagnosis?

I don’t think I mourned the old me. It wasn’t like a death. It was more like standing at the edge of a cliff and realizing, for the first time, how far down the fall could be. I just had to take a step back and understand how I got there. I did have moments of reflection, though – times when I thought about what my life might have looked like if things had been different.

If I hadn’t received that diagnosis, would I have taken certain risks? Would I have lived more freely, without the constant worry of my health hanging over me? But mourning means loss, and I don’t think I lost myself. I changed. I adapted. I survived.

What’s something you believed about HIV back in 1990 that you now know was completely wrong?

Back in 1990, people thought you could get HIV just by being near someone who had it. Like the flu, like a curse, like something you could catch just by existing in the same space. The fear was overwhelming, and it ruined lives. I know because it nearly ruined mine.

I believed that everyone else did – that my days were numbered. That no matter how careful I was, it was only a matter of time before I wasted away. That HIV meant isolation, suffering, and a slow, painful death. The reality is, while HIV is a lifelong condition, it’s not the same battle it once was. Medicine has advanced. People with HIV can live long, fulfilling lives. But back then? It was hard to see beyond the fear.

Was there a turning point when you realized you were going to live longer than expected?

My sister always said I wouldn’t die from it. I didn’t believe her at first, by by 1996 – six years in – I started to wonder if she was right. I had never gotten an opportunistic infection. That was when I realized: Maybe I wasn’t dying. Maybe I was just living differently.

That shift in mindset changed everything. I stopped waiting for death and started making plans for the future. I let go of the idea that I was on borrowed time and focused on what I could control – my health, my relationships, my perspective. The fear never fully disappeared, but I learned to live alongside it rather than under it.

What’s the most unexpected thing about living with HIV for 35 years?

The most unexpected thing? Seeing so many people treat it as a “right of passage” in the LGBTQ community. I lived through a time when HIV was an executioner. It still stuns me that some people today don’t take it seriously. I’ve also been surprised by how many people have come and gone in my life – not just those who passed away, but those who chose to walk way. Friends who disappeared when they learned about my diagnosis. Family members who suddenly had nothing to say to me.

But I’ve also been amazed by the resilience of those who stayed. The kindness of strangers who became family. The strength of a community that refuses to be defined by fear.

Have you ever had survivor’s guilt, knowing that so many others didn’t make it?

I have sorrow for those who passed. But survivor’s guilt? That came in a different form. It wasn’t just about HIV. It was about hearing people say, “I could die before you,” and then watching them actually die before me. The ones who thought they were invincible? Some of them didn’t make it past their forties. And yet, here I am.

Survivor’s guilt is complicated. I don’t think I feel guilty for surviving, but I do feel the weight of the responsibility that comes with it. To honor those who didn’t make it. To speak for those who never got the chance. To make my survival mean something.

Have you ever felt invisible in the HIV community because you’ve been living with it for so long?

Absolutely. I was ignored because I didn’t fit the role. I was a gay man married to a woman. I didn’t fit the stereotype, so I wasn’t the kind of story people wanted to hear. But my story is still real. It still matters.

Sometimes, it feels like people expect a certain narrative when they hear “HIV-positive.” They expect tragedy or recklessness or some kind of redemption arc. But life isn’t that simple. I am not a symbol. I am a person. And my experience, however unconventional, is just as valid.

What’s the most beautiful thing about aging, despite everything?

The older I get, the more I realize that I have the potential to outlive so many people. HIV does not define my life; it has just become a talking point and a tool to encourage others. But beyond that, aging has given me wisdom, perspective, and a kind of peace I never had in my younger years.

I used to think I was living on borrowed time, but now I understand that every day is mine to live fully. The lines on my face, the silver in my hair – these are all proof that I have made it through battles I was never supposed to survive. And that is beautiful.

How has the conversation around HIV changed since 1990? What still needs to change?

The hardest part wasn't just having HIV. It was losing so many people. Losing my friends, being asked to leave my church, having doctors and dentists refuse to treat me. All because I was HIV-positive.

Things are better now, but the stigma still exists. It just wears a different mask. For context: About seven months before my diagnosis, I had a 104° fever, and my lymph nodes swelled. A med student I knew suggested I get tested for Mono, Leukemia, Lymphoma, Myeloma, and HIV. Four of those were fatal at the time. I went home and cried, but I got tested. And in January 1990, I got my answer.

What’s a romantic moment in your life that made you forget about HIV entirely?

I don’t think I have ever had a romantic moment where I completely forgot about HIV. It’s always there – always part of me, part of my thoughts, even in the most intimate moments. But I have learned to live with that reality rather than let it take away from love and connection.

Over the years, I’ve had to remind myself that I have never passed HIV to another person, and with the medical advancements today, the chances of that happening are rare at best. Knowing this has given me a kind of quiet confidence, allowing me to embrace romance in a way I never thought possible in the early days of my diagnosis. Love, after all, is more than just the absence of fear – it’s the presence of trust, understanding, and acceptance.

What’s your definition of a life well lived?

For me, my faith is everything. It drives my thoughts, my actions, my purpose. If, when I die, people can say, “I saw Christ living through Fred,” then I will know I lived well. That is my goal. That is my peace.

I don’t measure my life by achievements or wealth or years survived. I measure it by the love I give, the people I help, the faith I hold onto. If I can leave this world knowing that I made a difference – even in a small way – then my life was worth living.

HIV was supposed to take my life. It didn’t. Instead, it showed me how fragile life is, how quickly people turn their backs, and how strong I really am. I have lived through a time when HIV meant death, and yet here I am, still breathing, still fighting, still proving that I am more than a diagnosis.

This is my story. It’s not perfect. It’s not always pretty. But it’s real. And I’m still here.

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