report
Whether job, leisure time, sexuality or family planning: people with HIV can live like everyone else. That was not always so. Two people affected talk about what happened and how serious the consequences of a diagnosis still are today.
“The greatest fear comes true: the doctors say my HIV test was positive, which means I have the AIDS virus,” wrote Michael Jähme in his diary in 1990. He is 32 and, for many, being diagnosed with HIV is a death sentence. Michael expects to die in the next few years.
In 2010, he wrote this in his diary: “I didn’t particularly celebrate the 20th anniversary of my HIV diagnosis. I’m proud and happy to have survived HIV for twenty years. Living with HIV was nothing to be taken for granted back then.” Today he is 65 years old and leads a normal life – he is doing well, at least “as far as HIV is concerned,” he says.
Michael 1990 at the Brandenburg Gate, the year of the diagnosis.
“Suddenly it’s easy for you”
Nicole Kamga tested positive in 2017. At the time she was 26 and pregnant. She received the results during her initial examination from the gynecologist. She knows that HIV-positive people now have an almost normal life expectancy with timely treatment. Modern drugs suppress the virus and prevent the disease from breaking out. Nevertheless, the diagnosis was like the end of the world for her at the time: “I still had this old idea of HIV-positive people. I hadn’t thought about it at all. I was still young and thought, why should you get HIV? And suddenly you have it it is easy.”
She says none of her former sex partners have tested positive. For several years she was concerned with the question of how she could have become infected. This is also why she decides to have an abortion because she first wants to deal with herself and her diagnosis. “With the medication everything was the same as before, in terms of health, but not in my head. I couldn’t process the information. It really took me a lot of time,” she says.
The medication saved him
After his diagnosis, Michael initially didn’t take any medication; the medications available at the time were too unsafe for him. “I didn’t want to be the medical guinea pig,” he says. This only worked well for a few years, but in 1998 things started to get worse. When he almost falls ill with HIV-typical pneumonia, he can no longer avoid it.
But with the medication come side effects: dry skin, diarrhea, his body changes. His face appears sunken, his arms are becoming thinner, and the fat is accumulating on his stomach. “It was very painful for me to suddenly look 20 years older. And then it became clear to me: HIV is not sexy and HIV does not make you beautiful,” says Michael.
In the first few years he was very unsettled, despite the medication. He never knew what long-term side effects might arise. The medication cocktail changes again and again; today he only takes one tablet once a day. He doesn’t notice any side effects.
Experiences of discrimination with HIV
“A good life with HIV is medically possible – the way society deals with it is lagging behind,” is how the German Aids Association describes the experience of many HIV-positive people. The question of who to tell about the infection and who not to is still relevant for many affected people today.
Nicole initially didn’t want to talk about her HIV diagnosis. She only told her sister about it. Then she joined a network for people with HIV and AIDS. Finally talking about her diagnosis was a liberation for her, she says. She was able to tell her family and her friends.
At first, Nicole only confided in her sister. She is now involved in a network.
Even today, HIV-positive people still experience discrimination, especially often at the doctor’s office. According to a study by Deutsche Aidshilfe, many are only offered the last appointment of the day, and doctors and practice staff assume that special cleaning measures are necessary afterwards. Nicole knows it: “Especially at the dentist, they are the worst,” she says with a bittersweet smile. She says she went to a new dentist just four weeks ago. When greeting him, he wore two gloves on top of each other.
“Talking helps”
Nicole now speaks openly about her life with HIV. Even if she then experiences rejection: for example when dating. Four months ago she met someone and told him about her diagnosis: “It was as if they had told him that he was HIV-positive and that he was the one who was sick. He couldn’t even touch me afterwards. That’s where I was I said, I don’t need that.”
Michael sought help from friends from the start, but quickly realized that his diagnosis was shocking and that his friends couldn’t be there for him the way he needed them. He then sought professional help and eventually worked for the AIDS charity himself.
Talking helps, he says, and expresses a wish: “I would like to talk about my life with HIV as naturally as other people talk about their family life or another life.” That means freedom, he says.