STIGMA: A millstone round the neck of sufferers everywhere

For HIV sufferers the world over, discrimination – or fear of it – is an everyday reality. Stigma, say health workers and campaigners, hangs like a millstone around the necks of sufferers.

Retired farmer Tobias Sijenyi has eight children and two wives, but says his HIV left him lonely. He was ridden by sickness, weighed down by prejudice, and had nowhere to turn.

“There was a lot of discrimination because people lacked facts,” he says. “They thought that if you shared a cup with someone positive, you would get HIV. There was a lot of ignorance.”

Tobias, 76, found solace with fellow sufferers. He joined one of the growing number of support groups in Kenya, vital tools in the fight against HIV and springboards for those left jobless, hopeless or scared.

“I love this support group,” says Tobias. “When I feel weak, and my heart is terrible, I come here.”

For many sufferers, their illness is exacerbated by the stigma associated with the virus. Fear of humiliation deters many from being tested for HIV, or from accepting that they have it. Men in particular often refuse to tell even their closest relatives.

Booker Webi, 58, a member of a male-only support group in Nairobi, says he wanted to hide when he learned he had HIV.

“Even when my sisters knew, I was really worried about how they would take it,” he says. “There is this problem of stigma.”

Through the support groups though, health workers create a communality, which its members all say breeds strength.

Stephen Ngugi from Christian Aid’s Nairobi office says the groups make people “more free”.

People want to open up, he says, “but cannot go around sharing with every Tom, Dick or Harry.” The support group provides a comfortable setting in which to talk.

Many of the groups that do exist are initiated through the Filling The Gaps project (FTG), which is part-funded by Christian Aid and the Anglican Church of Kenya. It aims to identify the areas where government provision falls short and, as the name suggests, fill those gaps, often by encouraging HIV sufferers to set up and run groups where people can identify mutual needs, and address them as one.

Josephine Were, 33, was one of those who heeded FTG’s call and she says her group, the one attended by Tobias, has turned countless lives around.

“The group members have been going round spreading the gospel that you can live positively,” she says. “The fact you are HIV positive is not the end of everything. They also tell those who have not found out their status the benefits of doing so.”

Josephine learned her own status in 2003 and formed the support group two years ago “to find friends to walk along with”.

She says the members initially faced discrimination, but says: “As time went on, they have become role models. Lives are improving and people have begun admiring them.”

Christopher Ongwen, a member of the same group as Mr Webi, says too many men have remained quiet about HIV.

“But we have empowered these men, and we want to continue so stigma is reduced,” he says.

In the same group, his namesake Christopher Mwanzia says it has led to a great reduction in stigma and discrimination. “We have been able to bridge some of the gaps,” he says.

Tobias says he too feared humiliation, but forced himself to address his anxieties.

“People fear to be discriminated against or told they are positive,” he says. “It is very difficult. But I wanted to save my life. I weighed that against hiding and being infected, and decided to be open.”

His and Josephine’s group meets twice a month in Malanga and now has 114 members, split into three sub-groups.

The emotional support is valuable, but it is matched by practical economic concerns. Each of the groups runs a “saving and loaning” association, allowing members to help each other financially, and each offers members a stake in an income-generating scheme such as basic farming or bee-keeping.

For Tobias, that support has been invaluable, and he attributes both his financial and social improvements to the group.

“I was lonely and I had a lot of fear,” he says. “But now I am happy and motivated to continue.”

Gavin Aitchison travelled to Kenya with Christian Aid, to witness the charity's work with HIV victims and to meet those on the front-line in the fight against the virus.

• Christian Aid’s Christmas appeal this year is focused on HIV, marking the 30th anniversary of the discovery of the virus.

If you would like to donate to Christian Aid’s Christmas Appeal, or would like to find out more about its work on health and HIV, visit christianaid.org.uk/christmas or call 0845 7000 300.