Couples in Lake Victoria fishing communities living in HIV-discordant relationships say stigma from in-laws, neighbours and communities remains their greatest source of pain.
This is according to a new study published in the journal AIDS Care, which interviewed 16 couples in Kisumu county where one partner is HIV positive and the other is HIV negative. These are called sero-different couples. All the couples wanted to have children together.
Kisumu has an HIV prevalence of 13.89 per cent among women and 7.83 per cent among men, among the highest in the country.
Nationally, Kenya’s HIV prevalence stands at about four per cent, with about 1.4 million people living with HIV across the country.
The good news from the study is that, within these couples, support was strong. Researchers found that there was little evidence of internalised stigma, and most participants described partner support and acceptance.
The title of the study itself comes from a quote by one of the participants, who said their partner “Accepted me the way I am… most people can’t.”
But this acceptance inside the home did not always come easily.
The study found that men living with HIV often struggled to tell their partners, mainly out of fear that their partner would leave them. One man, married for eight years, said:
“When we got tested, I was found to be infected, but my wife wasn’t infected. I thought that sometimes this might be the reason my wife is going to leave me.”
While couples mostly supported each other, the study found that stigma from outside the relationship, especially from the community, was common and painful.
One man described how a neighbour told his wife: “You are married to someone infected with HIV, you will die.”
Women living with HIV appeared to carry a heavier burden of community judgement than men.
Even women who do not have HIV are not safe from gossip. One woman said that because she regularly collected ARV medication for her husband, people assumed she and her children were also HIV positive and on treatment, even though they were not.
Family members were sometimes the harshest critics. One man recalled his uncle confronting him about marrying a woman with HIV, asking whether he thought the marriage would “make it.”
Another woman said her husband’s family blamed her for endangering their son, with her mother-in-law telling her she had no right to marry into the family because of her HIV status.
Across almost all the couples, the strongest emotion was not shame about themselves. It was fear of passing HIV to their children or to their partner.
Many participants said health workers gave them confidence that they could have healthy babies.
One man recalled what nurses told him: “It is not the end of life, life is in abundance and you will live longer and achieve all your plans, including having children without HIV as you plan.”
The researchers recommended education campaigns that explain modern HIV prevention methods, including the message known as U=U (Undetectable equals Untransmittable), which means a person on effective HIV treatment cannot pass the virus to others.
The researchers come from the University of California San Francisco, the University of Michigan, the Kenya Medical Research Institute and Impact Research and Development Organization, Kisumu.
