Żyję z HIV Niewykrywalnym
czyli Niezakażającym (U=U)
od 2003 roku.
Since 2002 I have taken ARV medication without interruption. Current evidence shows that I have not been able to transmit HIV during sexual contact since 2003 under the N=N criteria.
The message of undetectable HIV was first defined in 2008 in the Swiss Statement and later confirmed in studies including HPTN 052 in 2011 and PARTNER 1 and PARTNER 2 in 2014 and 2018.
Tomasz Siara, 44 HIv+ U=U
Samorzecznik HIV, Projektant Komunikacji
HIV Advocate living with the virus since 1999, with an undetectable viral load since 2003.
In November 2018, to speed up the adoption of the U=U message in Poland, he came out publicly at the national Res Humanae AIDS2018PL conference as a gay man living with undetectable HIV in a long-term HIV+/HIV- relationship.
The speech took place four months after the release of the PARTNER1 and PARTNER2 results at the AIDS2018 conference in Amsterdam. He linked his testimony with an invitation to HIV/AIDS specialists to work together on public communication based on lived evidence from people with HIV and HIV+/HIV- couples who support the U=U message.
Communications designer and creator of the grassroots campaign HIV N=N Niewykrywalnie. Since 2019, he has appeared in national media, sharing the U=U message and supporting the normalisation of HIV prevention in Poland, including testing, TasP, and PrEP.
Since 2024, he has been a civil society participant in the Parliamentary Team for HIV Prevention and AIDS Response.
A drunk doctor handed him his HIV test result and said: “You have six months left to live. We cannot help you. I am very sorry. Goodbye.” He was 21. That diagnosis was 23 years ago.
Today, Tomasz Siara fights myths about HIV, fear of testing, and shows by example that a positive result is not a death sentence. With treatment, he lives a full life.
I was 14 and had a yellow daily planner, one page for each day. Writing calmed me, although no one answered the questions I noted: What do I feel? Why do I feel this? At school and outside, people called boys like me “fag” and “queer.” I kept my diary under the mattress. I did not hide it well. It was just my most private thing. My mother found it after a few months. The same day she staged an intervention. She sat us in the living room. My brother and father on the sofa. Me in a chair on the other side. She sat in the middle. Like a courtroom. She read my notes aloud for several minutes. I have never felt more shame. That day she forced my coming out without my permission. She grew up in a Catholic home, went to church every Sunday, and had one idea of what counted as normal. She announced that I was sick, that bad company turned me gay.
You ask how I got along with her before. Her behavior that day was not new. My home was full of divisions, physical violence, and psychological violence from her, and conflict between my parents. A constant domestic war. I did not understand why they fought, but I always defended the non-aggressive one, my father. Years later he told me that if hit her back she would not survive that. I was always surprised by her abusiveness anyway. She had a higher education degree, was an artist, a ceramicist, intelligent and articulate. She was social and attended international ceramic exhibitions with queer artists she respected. She kept contact with them. She praised them. She never tried to understand me. She judged me as “disturbed.” She still cannot. One Christmas Eve she called to share a symbolic wafer and said: “As long as you are a homosexual, you will not be a real man to me.” Her words took away my dignity again. She never apologized. We have not spoken for over 18 years now. She only sends me holiday and birthday wishes saying she hopes God will let us be together again. That will not happen.
After she found the diary, she took me to sexologists to “drive out the demons of homosexuality.” Each visit ended the same. The doctor said my orientation was not a disorder and had no cure. She later decided that sexologists were homosexual themselves and “recruited” boys in their offices. She stopped the visits. At home we avoided the subject. I avoided the living room. I felt ashamed and inferior. After some time I started looking for myself more actively.
Near school there was a kiosk where boys bought porn. That is where I found one clue. A gay magazine called Adam. I had no access to the internet. I waited for the kiosk to empty. I bought the magazine. I read the ads. One said: Jerzy, 36. I called from a payphone. He understood my situation. His family had thrown him out years earlier after learning he was gay. We talked again and again. On my seventeenth birthday my aunt gave me a Nokia 5110. We talked often. He told me I was not worse than others. He said the times were hard for people like us. I regained some self-worth. I wanted to meet him. He refused. I panicked. I had no address, only the city. My mother and brother left for vacation. I lied to my father that a classmate invited me to her family’s seaside home. He drove me to the station. I realized on the train that I lied to him and was traveling to a stranger. I should have been scared. I was excited. I finally had someone who understood me. I did not think about danger. Only years later I understood the risk. But I was lucky. Jerzy did not exploit me. He took care of me. I felt safe for the first time. He picked me up from the station and was shocked I came. Those four days were the best vacation of my life.
Jerzy ran a campsite. I got my own trailer. We talked, walked to the sea, did chores. I designed a logo and business cards for him. I wanted to stay longer. When I told my father the truth on the phone, he froze. He arrived right the next day, spoke to Jerzy, then took me home. I do not regret that trip. After my mother returned, both my father and I had trouble because of my lies. I was grounded.
I told my parents I was going to Mimi’s birthday. My father offered to drive me. During the drive he asked: “Today is Scena’s birthday. You are not going there?” I denied it. He waited outside for thirty minutes to see if I would leave. When he left, we went to the club. The party was loud. I saw my father in a corner. I panicked and hid in the crowd. Then I followed him outside. I tried to explain why the place mattered to me. He interrupted me. He said: “This is the first time I see you this happy. You have my support. I do not want to change who you are.” I invited him back. He met my friends. He stayed until morning. Within the local gay community he became known as the first father who openly supported his gay son. I wrote an emotional essay about that night for my English mock exam and got a high grade. That was my first coming out on my own terms.
A new school year began. A Brazilian exchange student named Mimi joined the class. She was a lesbian and became my close friend. At home everything was easier because I could go anywhere with her. We wanted to go to the birthday party of a well-known gay club called Scena. The club was in a large apartment in an old building in Wroclaw. You entered through the fire stairs, called “the back entrance.” The rooms were painted black. Dozens of First Communion photos hung on the walls. Many of my gay friends had been thrown out of their homes, usually by fathers. The club owner, Jarek, was our unofficial dad. The club felt like home. We were a tight group and still keep in touch.
I got a job at Chip magazine, which covered computers and games. I was the youngest illustrator and liked abstract topics. I earned enough to move out. I lived with my first boyfriend and friends. My father and I met in the city and worked together. He studied painting at the academy and designed recognizable murals in Wroclaw, including ones with household appliances.
In 2001 I met Michal. I felt safe with him. We had anal sex with condoms at first, then without. A year later I learned he was cheating. After the breakup my health declined. I was often sick. Doctors had no explanation. I took an anonymous HIV test.
I returned for the result two weeks later. The doctor who smelled of alcohol read my file and said: “The result is positive. You have six months left to live. We cannot help you. I am sorry.” That was all. I threw away the paper and wandered through the city with no aim. I cut contact with friends. I walked for hours through crowds, feeling isolated and numb. I marked the date of my death on my wall calendar and crossed out the days.
After around three weeks I took another test under my own name. It was positive again. This time the clinic sent me to the infectious diseases hospital. I met Dr. Jacek Gasiorowski from the Podwale Siedem center. He started my treatment.
I began HAART therapy: Retrowir, Epiwir, Kaletra. Three times a day, four tablets each time. Some the size of a thumb. I vomited. I had headaches and diarrhea. I did not even notice when the six months passed. I stopped crossing out the days. Even though I understood HIV better, I still feared that I could infect someone by sneezing or touching with a sweaty hand or drinking from someone else’s cup. Dr. Gasiorowski kept explaining that I could not. I could not accept it. I had anxiety and could not work normally. Now I know that many people after diagnosis develop post-traumatic stress symptoms.
A year later my results improved. I became undetectable. The virus was still in my body, but in such a small amount that it could not affect me. After three years I qualified for a new therapy. One pill at bedtime. The side effects continued but less intensely. I would fall asleep fast to avoid the discomfort. My dreams felt sped up. In the morning I was dizzy. But the change was positive. I felt like I was returning to normal. Or I thought so.
I worked from early morning to late evening. I moved to live near the office. I did not know that the medication affected anxiety. I did not know I had a disorder or depression. I took on more projects, stuttered, could not follow conversations, forgot things, and fell into debt. My business partner left his two sick dogs with me for two weeks. They calmed down with me. When he returned, they did not want to go with him. I was like those dogs, sick from stress. I realized I could take care of someone. I adopted a chocolate Labrador named Kreo. He pulled me outside for walks. He did not let me overwork. My father loved him.
When Kreo was four, some children gave him grapes at the park. He got a twisted intestine and complications left his legs paralyzed. Eleven veterinarians wanted to put him down. The twelfth proposed manual therapy. After three months of exercises he stood on his legs again. I saved him. I went to a psychiatrist, changed medications, and started dating again. I already knew I would survive, but this was the moment I began to live.
I waited six years after infection before having sex again. I created a dating profile and wrote that I wanted only physical contact with protection. In 2011 Lukasz appeared. He contacted me for months. We met for drinks and meals. He invited me to Poznan for the Mister Bear Poland contest. The bear community is a subgroup of LGBT culture. In Poland there are about two hundred registered members and about a thousand people in the wider circle. We shared a room with two beds. I told him I had HIV. He said: “No problem. Let’s try.” I cried. We dated for six months. I was emotionally distant and we broke up.
A year later I wrote to Adam. I postponed the first meeting three times. He came from Warsaw to Wroclaw. We spent the day walking and talking. I did not tell him until before the second date. He said: “So what?” He had worked for years as a street worker doing HIV education and testing. We became a couple. He moved to Wroclaw two months later. Less than a year later we learned about the PARTNER 1 study from my doctor. It showed that people with HIV on effective therapy, living with undetectable viral load, do not transmit the virus sexually. We read more about it together. The study followed heterosexual couples where only one partner had HIV and they did not use condoms. Over four years there were zero transmissions.
I was still afraid. I could not imagine intimacy without condoms. After a few months Adam said during sex: “I do not have a condom. I do not want to use one with you.” It was a shock for me. He had enough courage for both of us.
My father always told me I was strong. I thought he was indestructible. I learned about his depression 15 years later. In our violent home, feelings were treated as weakness. When he got Parkinson’s disease, he hid it for five years while taking two medication regimens that harmed him. He had depression and later dementia. He attempted suicide twice. My brother cared for him first, then I took care of him full time. He began proper treatment. I kept thinking that if he had spoken earlier, maybe the disease would have progressed more slowly. One honest conversation could have changed both our lives.
In 2018 scientists published results from PARTNER 2. This time they studied almost a thousand gay male couples in 14 European countries. The result was the same as in the heterosexual group. I started thinking of this as a project. I wondered if another educational campaign could change anything. I needed something better. I promised myself that if I won Mister Bear Poland, I would tell everyone I had HIV and that with proper therapy there was no risk of transmission. I wanted to give strength to people who were at the start of the road I had walked.
I won the contest. On 1 December 2018 at 6:30 a friend came with recording gear. I sat down and said: “This will not be another dry informational campaign.” I announced the start of the “Undetectable = Untransmittable” campaign. I said: “This is the most important social project of my life because I have been HIV-positive for 16 years and undetectable for 15. I spent five years in a relationship with a healthy partner and we are living proof of the PARTNER 2 results.” I stumbled and had to re-record. I planned to post at 8, but posted at 11. I uploaded the video to Facebook.
People commented: “I have been positive for five years, undetectable for four. My partner is still free of the virus. Therapy works.” Others wrote: “Positive since last July, undetectable since August. I returned to medication, thank you.” They sent messages saying they discussed the video at parties and thanked me.
In April last year I launched the official “Niewykrywalni” campaign and spoke in national media. One report aired on Easter Sunday. Families were gathered at dinner and I talked about living with HIV. I traveled with Adam across Poland. We held meetings. We hung posters with our photos and the words “HIV undetectable.” We held 14 meetings, four conferences, and three presentations. As Mister Bear Poland I went to the Mister Bear Europe contest. I did not win, but my aim was to reach more people with the undetectable message. Months later the European community gave me the lifetime title Mister Bear of Honor Europe.
I built an educational website with research results, medical advice, and stories of people living with undetectable HIV. To date, 74 people have come out to me, including heterosexual women and men. We are preparing audiobooks based on several of their life stories. I invested about 23,000 PLN in the campaign. Friends raised another 8,000 PLN for travel, posters, film recording, and venue rental.
Before the coronavirus pandemic, I met my bear “chosen family” in my garden, which we called Misiogrod. Forty or fifty people came. We listened to Eurovision songs, grilled food, and invited doctors with HIV tests. Before the campaign only two or three people tested at parties. After the campaign more than thirty tested, and about two-thirds tested for the first time.