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We face judgment from others as we walk through life. We feel other people’s stares and take those judgments personally. It makes one wonder if those judgments are linked to something beyond ourselves, does it represent the norm of the whole community? Is there some quality within me that is inherently wrong? Am I not good enough for this bigger standard? As we keep proving this impression to ourselves, the accumulation of the unworthy feeling gets overwhelming. It is important to note that these feelings do not necessarily come from our community, they also come from us not accepting ourselves and stigmatizing ourselves — this can also be referred to as “self-stigma”. Stigma and self-stigma are also obstacles faced by everyone when seeking help, its commonality is why it is an important topic to discuss. In the “GoodEnough” webinar held by Beyond Stigma, the speakers address the topic of stigma and self-stigma specific to HIV-positive groups in sub-Saharan Africa by sharing their research or experiences and introducing the “Wakakosha” program.
Why we focus on the ALHIV group --
Webster spoke first about his research findings. He explained: “stigma is a barrier to HIV treatments, this includes sigma and self-stigma, among which self-stigma is experienced three times more than stigma.” Webster establishes just how common self-stigma happens, and while it is important to address negative social biases, change on a societal level is much harder to achieve. This is why working from within is critical. Webster explains: “It is critical to address self-stigma in sub-Saharan Africa because it is home to 85% of adolescents living with HIV (ALHIV).” ALHIV is a group of patients that is more vulnerable to the danger and the impacts of stigma and self-stigma, which is why more care should be paid to this group.
Research findings in the published paper by Beyond Stigma —
Our speaker Camille further expands on this topic by explaining the risk of diagnosis in ALHIV groups from multiple levels in her research paper. In Camille’s focus group study of ALHIV, self-stigmatization is reported by every one of the participants whether frequently or occasionally. Camille reported: “When the participants self-stigmatized, they often had beliefs like: ‘I’m worthless, hopeless, limited in my own agency, or felt that they were dirty or unclean.’” Camille explains that these beliefs can come from “experiencing discrimination as well as internalizing negative cultural values and stereotypes about people living with HIV. And these internalized thoughts can lead to poor mental health, self-isolation, medication rejection, and suicidal thoughts.” Another risk of self-stigmatization comes from disclosure difficulties. After diagnosis, many participants struggle to disclose their symptoms to their loved ones in fear of being discriminated against and being defined by the stereotypes associated with HIV; especially considering the age of the participants — being accepted is hugely vital for adolescent folks, it makes the discloser process even more difficult. From this inability to disclose, the participants would suffer from the stress of this “shameful secret”. Over time, some people would start to ignore their HIV symptoms, and stop taking their medications. This process illustrates how stigma and self-stigma first lead to non-acceptance, which can lead to serious health outcomes. Furthermore, complications brought by the diagnosis often cause some participants to have low self-esteem in their social life. Many participants avoid dating altogether for fear of rejection. In summary, stigma and self-stigma can lead to serious health issues and struggles brought by its complications often cause the participant to feel deeply lonely and isolated.
The Wakakosha program —
The Wakakosha program held by Beyond Stigma provided the service of intervention for young people experiencing self-stigma. Webster explained it is important to start the process of addressing these stigmas in groups through group activities like counseling, meditation, art, and music, and at the end, the respondents would develop coping strategies for stigma-related stress, which is proven to effectively help them become more confident and outspoken.
If you missed it, you can check the #GoodEnough Webinar here:
By Baimeng Fan, Beyond Stigma Intern