Gossip about HIV status drives stigma and limits uptake of HIV care

A recent study from Botswana argues that gossip is both a driver and a manifestation of stigma: gossip stigmatises people living with HIV, and the fact that people are gossiping about people living with HIV reflects the presence of HIV stigma in that community. The authors also argue that the gossip/stigma combination can be more damaging to the community than the actual threat of HIV. This is because stigma can lead people living with HIV to decline to seek HIV treatment as a way of keeping their HIV status private and of avoiding being gossiped about. However, the study also identified ways of counteracting the negative effects of HIV-related gossip and stigma.

Dr Ohemaa Poku of Johns Hopkins University and colleagues conducted four focus groups as well as 46 interviews with men and women. Of the 84 participants, 45 were living with HIV (recruited from a public hospital in Gabarone, Botswana’s capital) and 39 had unknown HIV status (recruited from the community). Participants were asked about stigmatising beliefs and actions related to HIV that had been identified in other studies, and the cultural aspects of HIV-related stigma that were particularly relevant in Botswana, including gossip and the relation between cultural norms and HIV stigma in that country.

HIV stigma, labelling, and gendered stereotypes

In Botswana and elsewhere, gossip about someone’s HIV status often begins after someone is seen as having certain characteristics commonly associated with living with HIV – most obviously, attending an infectious disease clinic, or taking ART.

“The individual [would] struggle with going to the clinic to get their medication because they would be seen by people, and then people would be talking about them. I think if it was possible [to take ART], with no one knowing, then that would be better.”

The person being gossiped about is then labelled as someone living with HIV. This label attaches negative qualities associated with HIV stigma to the labelled person. These negative qualities take on particular, gendered meanings from the local culture. For example, because in Botswana, women’s social status is linked to being a primary caregiver and a respected mother, women living with HIV are assumed to have failed in these roles by, for example, being promiscuous. Because men’s social status is linked to being employed and providing for their families, men living with HIV are assumed to have failed in their roles as ‘real men’ by, for example, being unemployable.

Being labelled as living with HIV through gossip thus applies other, culturally specific labels that undermine the labelled person’s social status. Similarly, being seen as defying cultural expectations can lead to being labelled as living with HIV. As one man living with HIV explained,

“We take it that a woman belongs to the home, so we wonder if she has HIV [if seen with others outside of the home], there is no woman in her. She is a whore, there is no woman.”

Gossip’s psychosocial impacts

Participants emphasised that gossip and HIV stigma had long-lasting psychosocial impacts. They explained that while those who gossiped about or excluded people living with HIV easily forgot that they had done so, the person affected by these acts remembered them for a long time.

Participants described HIV stigma that was driven by gossip rather than, for example, resulted from self-disclosure, as especially distressing, as gossip deprived people from control over who knew about their personal lives.

“It’s very difficult because a secret doesn’t stay and most of us like secretive things, we don’t like telling the truth. Being gossiped that you have HIV is more painful than somebody just approaching you and telling you, because when they gossip, the news will spread more.”

Social isolation and exclusion were other negative consequences of gossip. Several participants said that people living with HIV often self-isolated to avoid inspiring gossip:

“They end up isolating themselves from the community because they are afraid … they will ask themselves, if I engage in social gatherings once I leave people will talk bad about you”.

Participants also described people living with HIV facing rejection from potential romantic partners, exclusion from the community (for example, potential business clients avoiding using their services) and people physically distancing themselves from people labelled as living with HIV:

“You hear people saying, ‘oh so and so has HIV, I don’t want to sit next to them or that their skin is getting worse,’ so usually it’s not something that is done but rather it’s what people are saying”.

Gossip’s health impacts

Participants also described gossip’s negative impacts on physical health. They said that many people living with HIV would avoid getting tested, attending clinic appointments, or adhering to treatment out of concern that being observed doing so would inspire gossip and being labelled as someone living with HIV.

“My elder sister, she was going to take ARVs [antiretrovirals] at the clinic and then she started seeing people she knew and they were there, at the village and just talking about her, saying people were saying that they see that she takes medication, so she actually stopped going, she only started going back again when her health had become so bad that she had to go and she didn’t care anymore because she was feeling so sick”.

“Some [people] test themselves, but some they just leave it until they die…they don’t want people to know their HIV status because they know that people start gossiping, talking a lot of negative things about them, and again they will start looking back how they used to live their life…people will be talking about their past life, how they used to live and that they are the one who brought the condition to themselves”

Reducing the negative impact of gossip

Despite the enduring consequences of gossip and stigma, participants outlined several strategies for fighting or even discouraging them. One strategy was to become so healthy that one’s appearance approached the stereotypical image of someone who was not living with HIV. Here, participants suggested that the stereotype of someone living with HIV was of someone who looked unwell, and that looking healthy would be taken as evidence of HIV-negative status. Participants explained that this strategy could prove successful even if people had labelled someone as living with HIV in the past, as they would then treat the gossip as untrue:

“They will forget if you ignore [the gossip] and adhere to treatment, they would think all they gossiped about was not true since you would be healthier than they thought...You just have to stay healthy, that is the only possible way to stop gossip.”

Other strategies included accepting one’s own HIV status as a way of becoming less sensitive to gossip and disclosing one’s HIV status to trusted others. The trusted person would provide support, and would also be less likely to gossip about the person who had disclosed to them.

“I think it is better when someone faces you and tells you, because you can possibly sit and talk it out, maybe they would tell you why they say you have HIV, rather than going to the multitudes in the streets saying, “Hey, apparently so and so has HIV.”

Participants also suggested that people living with HIV, and respected members of the community, could actively prevent gossip by raising it as a topic of conversation. People living with HIV could, for example, challenge those who gossiped about them by emphasising the importance of getting tested and of adhering to treatment, and encouraging them to know their own HIV status:

“If it was me, you gossip about my status, I will say to you, “I am better, because l know my status, what about you”? “Do you know your status? You don’t know. You’ll go before me, because you don’t know your status.” Me, I am a free person because I know my status.”

Community leaders and health care workers and other professionals such as social workers could also, participants said, actively discourage HIV-related gossip in, for example, clinic training sessions and public meetings. They could – and should – also intervene when they heard people gossiping, discouraging the practice.

Recommendations

The authors recommend that future research into stigma and HIV should pay close attention to local worlds. This includes being sensitive to how local cultural and gender norms intersect with HIV-related stigma to shape how community members interpret – and label – individual characteristics and activities, and to the role of gossip in shaping the lives of people living with HIV. The authors recommend that peer-led programmes to reduce HIV stigma expand to include strategies to address and reduce HIV-related gossip, and that community-led action to address gossip and HIV stigma by, for example, village elders, as suggested by these participants, be supported.