I’ve been thinking a lot lately about what makes HIV prevention so difficult in this part of the world. After all, we know how to avoid contracting HIV – abstain from sex or use condoms consistently, and you’re at a very low risk.
Of course, the challenge is complex. There isn’t a single reason why HIV continues to be so prevalent in Lesotho. Behavior change is tricky, especially among adults, who may be set in their ways. People suffer from fatigue – they’re tired of hearing the same information over and over again and have become numb to it. Gender-based violence and and imbalance of power in sexual relationships plays a role. And then there’s stigma.
Stigma is a set of negative attitudes or beliefs directed towards a person or set of people. Often, stigma leads to discriminatory actions like gossip, exclusion, or violence. There is a great deal of stigma attached to an HIV-positive status in Lesotho; I feel like I’m still learning every day how strong and widespread this stigma is.
Statistically, I know many people who are HIV-positive. I teach them, I work with them (both in my community and at Peace Corps), and I pass them on the street. Yet in 17 months, not a single Mosotho has disclosed their positive status to me.
Of course, nobody has any obligation to share their status with me. It is medical and personal, and folks have every right to keep their status between themselves and their sexual partners.
That said, I know that being open about one’s status can make such a huge impact. Imagine if my HIV positive learners had healthy, happy, openly positive role models in the community to look up to and learn from! It seems like such a tough decision – being open about one’s status is not required, and it can be frightening and risky. However, it also has the power to start valuable conversations and set a wonderful example for others.
Recently, my colleagues and I put on a 3 day camp where we used the (wonderful!) Grassroot Soccer curriculum to play football and talk about HIV. Thanks to my co-facilitators’ hard work, the camp was a big success and we graduated 53 learners from 3 schools. At this event, just the act of talking frankly about HIV contributed to stigma-busting, because we welcomed questions and did not treat the virus as a taboo topic.
However, one portion of the curriculum calls for a Mosotho educator to share their “coach’s story” – something a little more personal that puts the topics of the camp in a real-world context. I explained that the story didn’t have to be drawn from the speaker’s private life. They could talk about an unnamed friend or even speak generally about their nation or about why they choose to participate in HIV education work.
Nobody wanted to speak. Even among a team of such dynamic, caring, honest HIV educators, the stigma is too strong. I was discouraged – not by the work of my colleagues, which was excellent – but by the power of this stigma to block important conversations from moving past a certain point.
Stigma matters in very real ways. It stops people from going to the clinic in the first place to take an HIV test. It stops people from talking to their sexual partners about their status. It stops people from insisting on condom use. It stops parents and teachers from giving adolescents necessary information. It hurts the mental health of HIV positive people who do not feel accepted or loved. It stops HIV positive people from correctly adhering to their treatment.
I do not have any answers. I am currently HIV negative (I was tested again just a few weeks ago), so I cannot imagine the vast array of thoughts and feelings that come with a positive status. I’m also not Mosotho, so I can’t fully understand the cultural norms that govern topics like disclosure, privacy, and illness in this country. While part of my job is to start possibly uncomfortable topics about sex and HIV, I don’t ever want to push someone to share something that makes them feel anxious or unsafe. All I can do in my remaining time here is to continue starting these conversations on a small scale, and hope that they chip away atthe stigma little by little.