30 years with HIV: A survivor tells his story on World AIDS Day
Diagnosed in 1986 as a teenager, Fred Bladou didn't have much hope of making it to his 20s. Now, the HIV/AIDS activist recalls his experience, from diagnosis to activism.
When he was infected with HIV at age 18, Fred Bladou never thought he’d reach his 20s. In 1986, there wasn’t much hope for surviving even that long.
At 47, the International AIDS Society community activist has been HIV positive for almost 30 years. Bladou spoke to Metro in his native France about being diagnosed, refusing treatment, then turning to a life of advocacy.
Learning about HIV: “I’m celebrating my 30th seropositivity anniversary this year. Very few of us can say that; many passed away a long time ago. I am 47; I was infected in 1986 through sexual intercourse. Obviously, it was extremely hard and extremely violent to learn that I was HIV positive, especially at that time because there was no treatment and people were dying.
“We were not even at the early stages of prevention. We didn’t know if you could get it through anything else than blood and sperm, like sweat, for example. There was very little knowledge.”
His reaction: “I never feel any regret about not protecting myself – I just never thought about it this way. I never experienced guilt, remorse, resentment or hatred. I just had sex with a man who was extraordinarily attractive; I was very young, and I didn’t know.
“Nowadays, when you see how many young gay guys get infected, it shows that not everybody uses protection even now. The issue is that we are dealing with sex, something that is very human, instinctive, even animal. A few months after I had sex with this man, I learned completely by accident that he was HIV positive. I went to a free screening center and three weeks later — that’s how long it used to take back then — I was told by the doctor that I had six months left to live.”
His response: “I decided not to undergo any treatment; I completely glossed over it. In my head, I was just going to die very quickly. I did protect myself though, for my partners but mostly for me, to prevent superinfection by acquiring a second strain of the virus. I’ve always protected myself since then, but I refused medical attention.
“I was unbelievably lucky to never develop AIDS. Doctors offered to prescribe AZT and DDI, the treatments that were available, but I always refused.”
The treatment: “In 1995, I suddenly got sick. I developed a pneumocystosis, an infection of the lungs. When I got into hospital, doctors thought it was the end. Luckily, I made it and at that exact time, the first triple therapies were just out.
“I started taking Crixivan; it was horrible. The side effects were absolutely horrendous, and your whole life had to be scheduled around the treatment. It had to be taken at precise times, and you couldn’t eat for hours before and after. In total, I had to take around 20 pills a day.
“This treatment saved my life, but I experienced all the side effects, including lipodystrophy and nausea. Because of lipodystrophy, which affects fat redistribution, my face looked so thin. I didn’t even have to say I was sick, everyone knew.
“Since then, I have changed treatments about five times, and each time it gets better. It got more efficient with reduced side effects to almost none. Now, I only take one pill a day.”
Finding support: “I didn’t tell my family at first. For years, my two best friends were the only ones who knew about it. They were both gay and sick like me, and they are both dead. I have lost a great deal of friends over the years.
“I told my family in 1995, when I was in hospital. They all laughed at me, telling me they already knew. I’m very close to my family, and they had the best reaction. They were, and still are, incredibly supportive. I guess if I’m alive today and so comfortable with my life as a gay HIV-positive man, it has a lot to do with them.”
Getting into activism: “I was first an activist for ACT UP, now I work for the International AIDS Society and the French association AIDES. I almost died several times; that changes your outlook on life forever. I didn’t work for a long time — physically, I just wasn’t able — but I needed to find something meaningful.”
Everyday life: “In spite of my activism, I don’t think about my disease at all. I’m very careful, I visit my doctor every three months, but I just lead the most normal life you could imagine. After 30 years, I had the time to go through every stage [of grief]: depression, fear, anger. Now, I have a job I love and a boyfriend. My life is very happy.”
His message: “I don’t want to trivialize what life as an HIV-positive is like. For some poor and isolated people, it’s like hell. I’m very lucky to be able to afford good treatment.
“HIV is a political disease — we are not all equal in front of it. Today, we have the weapons to prevent and fight HIV. I don’t want people to be afraid by screenings. Yes, HIV-positive people are still discriminated, but dying from AIDS in a country like France just shouldn’t happen anymore. If you know about it and get the right treatment as soon as possible, you can live a great life.”