Power to Speak: The Story of Evandro Manchini, in His Own Words

My name is Evandro Manchini. I’m a 37-year-old actor, filmmaker, communicator, and activist from Rio de Janeiro, Brazil. I’ve been living with HIV since my diagnosis in 2015.
That year was a turning point. It marked both endings and beginnings, rupture and transformation. I received my diagnosis on my birthday, a day that would redefine my life.
Three years later, I began my Master’s in Communication at the Federal University of Rio de Janeiro (UFRJ). That academic journey became a lifeline. It gave me the tools and the courage to speak publicly about my status, mainly because my research centred on my personal experience of living with HIV.
I wasn’t diagnosed because I was sick or hospitalised. I didn’t fit the stereotypical image many still associate with HIV. My only symptom was a swollen lymph node in my groin, something so minor most people wouldn’t give it a second thought. The first doctor didn’t. He skipped the HIV test. Maybe I didn’t look like someone “at risk.” Maybe I didn’t fit his assumptions. That, too, is stigma.

But I’ve always been proactive about my health. Since 2009, I have routinely tested for HIV and other STIs. It was part of my self-care. So I sought a second opinion from a doctor who knew me better. She noticed the missing tests and suggested we add one more. That test changed everything, not because it sentenced me to death, but because it demanded that I face myself in a way I never had before.
I still remember looking into the mirror after getting the result and asking: Who are you now?
I knew HIV wasn’t going to kill me, not physically. Thanks to modern medicine, I have come to understand that. The real threat wasn’t the virus itself, but what came with it: the shame, the silence, the judgment. The Brazilian activist Herbert Daniel, my mentor and inspiration, referred to it as “social death.” That’s what hit hardest: the erasure of my identity, of my belonging, of my humanity in the eyes of others.

I had to rebuild not my body, but my spirit.
I was lucky. My family, my mother, father, and sister, embraced me without hesitation. I know how rare and precious that is. Their love became the bridge between diagnosis and survival, not just physically, but emotionally and psychologically.
I also had inner resources. I’d already been in psychoanalysis for years after the end of a painful relationship that left me questioning my worth. That lengthy process gave me insight and resilience. And three months before my diagnosis, I discovered Nichiren Buddhism and joined SGI (Soka Gakkai International). I’ll never forget the first time I heard a room full of people chanting Nam-myoho-renge-kyo. The sound struck me like lightning straight to my soul. I didn’t understand the words yet, but I understood the power. The hope. The life in it.
In the first three years, I told very few people about my diagnosis. I wasn’t ready. I lived in silence. During that time, I was healthy. I was undetectable. I was working, creating, loving, but always with a hidden truth. Every time I considered sharing my status, fear held me back. Would I be seen as less than whole? Less desirable? Less human?
That fear became its kind of virus, unseen but deeply contagious.
Eventually, the silence became unbearable.
In 2018, I came out publicly on Instagram. It was my “second closet,” and it was both terrifying and liberating. I didn’t issue a press release. I simply began to share videos, posts, and reflections about living with HIV, not suffering from it. I spoke about love. About sex. About language. I explained why I say “living with HIV” instead of “HIV-positive” or “HIV carrier.” Because words matter, and living affirms life.
The response was overwhelming. Messages came from across Brazil and beyond. People living with HIV wrote to say they finally felt seen. Students said they’d never heard anyone speak so openly. Healthcare professionals told me they were using my content to educate others.

Yes, there was hate, too ignorant, stigmatising, and cruel. But I learned to block, delete, and move on. The love I received far outweighed the hate I received. And still does.
Since then, I’ve dedicated not just my work, but my life to breaking the silence around HIV. As an actor and filmmaker, I blend art and activism. I direct short films, immersive pieces, and web series. Since 2021, I’ve worked with UNAIDS Brazil as a video consultant. I help create campaigns, educational materials, and cultural content that connect HIV awareness to creativity and humanity.
In 2022, I released a short film called Poder Falar: Uma Autoficção (“Power to Speak: An Autofiction”). Inspired by my story, it follows a young filmmaker who receives an HIV diagnosis on his birthday, just like I did. He wears a pink triangle on his birthday hat, reclaiming a symbol of pain and turning it into pride. The film features the words of Herbert Daniel and has been screened at festivals worldwide, winning several awards.
In December 2024, I published a book with the same title: Poder Falar: Quebrando o Silêncio em Torno do HIV (“Power to Speak: Breaking the Silence Around HIV”), with a preface by renowned infectious disease specialist Dr. Marcia Rachid. The book gathers one-page reflections much like the ones I post online. Intimate, direct, and honest. I wanted something people could carry with them. A reminder: You’re not alone.
Today, I’m still speaking. Still creating. Still living.
My work is multidisciplinary, merging theatre, video, dance, and performance. For me, HIV is not just a medical issue. It’s cultural. It’s social. It’s not just for doctors and patients; it concerns us all. Our language. Our systems. Our attitudes. They all need healing.
Every day, people write to me. Some say they had never told anyone their diagnosis until they read my words. Others say they came out to their families because of a post I shared. Professors use my videos in their classes. Parents thank me for helping them understand their children.

This is the power of storytelling. The power of communication. The power of living, not just surviving, but living fully, joyfully, and unapologetically.
Because the truth is: today, living with HIV means living with a treatable chronic condition and the possibility of a rich, meaningful life. It means confronting stigma, challenging it, and refusing to be reduced by it.
I’m not just surviving.
I’m thriving. I’m creating. I’m speaking.
And every time I look in the mirror, I still ask myself: Who are you now?
And the answer is constantly evolving.
I am Evandro Manchini.
I am living with HIV.
I am living with joy.
And I am telling my story so that others can tell theirs.