By Corinne Redfern

A culture of shame is so strong that people put the safety of their own families at risk. But some couples are now overcoming the stigma together.

Minata* doesn’t remember the words her doctor used when he told her she was HIV-positive – she can’t actually recall why she’d gone to see him in the first place. The 25-year-old’s only memory is of clutching the sides of a blue plastic chair in an attempt not to fall forwards on to the floor. “And asking for my husband. All I wanted was to see him and to apologize. I don’t know if I was more scared of dying or [of] him leaving me.” The couple had only been married six months.

A nurse was duly dispatched to run down the earth track that bisects Minata’s village, in western Ivory Coast, and find her husband. “The whole time she was gone I kept thinking: ‘He’s going to ask for a divorce. Nobody will love me any more. I’m always going to be alone.’” When Souleymane*, 35, arrived, sweat was seeping through the back of his T-shirt. Minata felt the room’s edges lose focus. “But then he just put his hand on my shoulder and said, ‘OK doctor, how can I help her?’”

Together, he and Minata worked out that she probably contracted the virus when she underwent female genital mutilation (FGM) at age 14 – the practice is illegal in Ivory Coast, but groups of up to 100 teenage girls continue to be led into the jungle to be cut, one after another, with the same razor blade (thought to be one of the main reasons women in the region have far higher rates of HIV infection).

“I know it’s not her fault,” he says, acknowledging that after his own HIV test came back negative, few in the village would have judged him had he left his wife. After all, another local tradition has seen many of his male friends take their fiancees to the doctor days before before their wedding to be tested for HIV – preferably without the women’s knowledge and under the guise of a checkup.

Ivory Coast has one of the highest levels of HIV prevalence in West Africa. It’s estimated that 2.7% of the population are affected, compared with neighbouring Ghana (1.6%) and Burkina Faso (0.8%). National campaigns promote the use of contraceptives and try to dispel myths, such as that the virus can be caught by breathing the same air as someone who is infected

But the social stigma of testing positive is still so strong that studies have found adult sufferers continue to risk their health and that of their children in order to protect their reputation. Now new Unicef data released in December reveals that HIV diagnoses among 15-19-year-olds are rising – and while exact figures are hard to come by, it’s thought that many HIV-positive mothers continue to breastfeed their babies long past the six-month guidelines for fear of arousing suspicion among friends and neighbours if they are seen giving their child a bottle - potentially jeopardising their children’s health to protect their reputation. “I know I am risking my daughter’s health by breastfeeding her to 18 months,” says Minata, who gave birth last year. “But if my friends see me using formula [milk], they might guess that it’s because I am sick. If they find out, that could hurt my family even more.”

Around 70% of those diagnosed within the community are women, say Nathalie Douffou, a midwife at Minata’s local medical centre, where she is tasked with helping young couples to manage the infection. The numbers are similar nationwide; women in Ivory Coast are twice as likely to contract HIV than men; a fact that Unicef largely attributes to better access to education and information for boys in the region – not to mention FGM and a higher risk of sexual assault for girls. “This imbalance creates a culture of fear. Many of the women we diagnosed didn’t want to tell their sexual partners or husbands because they were so frightened of being abandoned – which comes with almost as much stigma as the virus itself.”

Nevertheless, awareness projects by local NGOs do seem to be making progress in one area – interpersonal relationships. “The approach to HIV on a personal, emotional level is changing rapidly,” says Douffou. “A few years ago, the routine was simple: If a woman came in and found out she was positive, then that was that – her husband would divorce her almost immediately.”

That might apply even if the woman had contracted HIV from her partner. In Abidjan, Koffi*, 17, was a couple of years into a relationship with Awa* when he found out he had caught HIV from his father. “She burst into tears because she knew that meant she would have it too, and she was so scared I would leave her.” He pauses. “I don’t know why she thought that.”

Today the teenage couple talk about starting a family together when they finish school – monthly counselling sessions provided by local NGO Cases (Centre d’Animation Sanitaire et d’Etudes Sociales) have reassured them they can live long, healthy lives. In the meantime, still too scared to tell her parents about her diagnosis, Awa walks for 20 minutes along busy roads twice a day to her boyfriend’s house a day to take her medicine, which is dished out by his mother.

“I feel guilty every day about what I’ve done to Awa, but she isn’t angry at me,” says Koffi. “We love each other and want to spend the rest of our lives together. HIV doesn’t have to affect that. The way she is handling this makes me love her more.”

“Worryingly, we still find that very few men here appear concerned about unprotected sex,” explains Douffou, adding that nurses now tell every woman exactly what she’s being tested for, so that she can give her consent with complete understanding of the implications. “They still don’t want to use condoms and think that if they have sex slowly, then the woman won’t bleed and they won’t be infected. A lot has to be done urgently to improve this. But despite that, it does feel like things are getting better in terms of overcoming the fear and shame of associating – or loving – someone with HIV.”

The clinic’s chief nurse, Cowlibaly Aly, agrees that the situation appears to be improving. He’s been working at the clinic for 12 years, and says there are currently 98 individuals with HIV in the village – most of whom are in stable relationships. “A few years ago, we would see men abandon their wives and their children with HIV because they didn’t want the risk or the responsibility,” he says. “Now husbands are beginning to realise that the means through which their wives may have contracted the infection were largely out of their control, and better education means that staying with them is not as scary as it used to be.”

As for Souleymane, he can’t understand the discrimination against women with HIV. “As Minata’s husband, it is up to me to do whatever I can to make things easier for her – not to run away and find a new wife,” he says.

“Mostly, he just stays very calm,” says Minata, who is back at the clinicfor counselling. “He tells me, ‘this is bad, but this is not the end of the world.’ Then, if I cry more, he says, ‘Remember, with this, you are never on your own’.”

This article was originally published in The Guardian on February 18, 2018, here. (*Names changed to protect identities)