When Lillian came to Germany, she was seriously ill. HIV treatment saved her life. Today, she supports other HIV-positive migrants from Africa, drawing strength from her engagement in self-help.

Lillian's schedule is packed. Even on Sundays. In the morning she had a church service, then she organised a fair trade breakfast. Soon she has a board meeting for the "Haus Afrika" society, a community centre for migrants in Saarbrücken, where Lillian works as an assistant to the management. Somehow, she's managed to crowbar our interview about her HIV self-help activities in between.

"If my calendar could talk, it would ask me if I really had a family," the bubbly woman in her mid-forties laughs.

She does have a family. She met her husband Manfred fourteen years ago in Halle, just as her daughter was born. The three of them moved to Saarbrücken together, and nothing stood in the way of the family happiness: because of her HIV status, Lillian has a residency permit in Germany, as there is no adequate treatment in Uganda.

When she arrived, Lillian's main job at "Haus Afrika" was to help with translations. But then more and more people looked to her for support, because she was so open about her HIV status. Now she comforts, offers advice - always finding the right tone - and helps others to accept their infection and find their courage.

"At first I needed the work to distract myself from my own story." 

"At first I needed the work to distract myself from my own story," Lillian explains. "But now I feel good, and I'm starting to realize that the work needs me."

Lillian's own story began in Uganda. She gave birth to her first child there in the 1990s. But the boy was severely disabled and suffered from tuberculosis. He died at only six months. "I lost the most important thing in my life. That cost be so much strength," remembers Lillian.

At the time, the number of HIV infections in Uganda was rising dramatically. Lillian offered pastoral care at a church to people with HIV, all the while scared that she might be affected too. She knew: "If you have HIV, your family and friends shut you out straight away." One problem followed another. It was the worst time of her life. "I had to get away," she says. "It didn't matter where."

Last-minute rescue

In June 2000, Lillian fled to Germany, and not a moment too soon. She was suffering from open tuberculosis as she arrived at the immigration reception centre. On her first night there, the volunteers called an emergency doctor. "I didn't realise it was that bad," Lillian says. "But when they tried to take the oxygen off me in hospital, I realised: oh, I can't breathe anymore."

Lillian's blood was tested. The result: HIV positive. The doctors could only count seven T helper cells, and the virus had almost completely destroyed her immune system.

From then on, things could only get better: following her release from hospital, Lillian found support at the AIDS-Hilfe in Halle, where she lived at the time. She attended seminars, collecting information about HIV. And she got in contact with AfroLeben plus, a network of HIV positive migrants, many of whom have similar stories to her. There is a great sense of solidarity among them. "We've all been through a lot and got so far with this illness," says Lillian. She sounds thankful.

"We are a family."

Having people around her is more important than medication. "We're a family," she adds. "I know that when I'm no longer here, my daughter will have relatives all over the country."

But Lillian would like to see a greater sense of community among all people with HIV, whatever their sexual orientation, background, or social class. "We're fighting against discrimination, but we're always discriminating against each other. That'll never work," she says angrily. "If we don't support each other, it'll always be that way. The issue is HIV. We have to be able to share the house."

That's another reason why Lillian is on the preparation team for Positive Encounters, a big nationwide conference about life with HIV organised by Deutsche AIDS-Hilfe.

It's one more job for Lillian to put in her diary, but she doesn't care: "Every day is a new gift from God, that's 24 hours that I have to make count!"


Frauke Oppenberg

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