Living with Long Covid in Kenya

Stigma, Chronicity and Complexity

For more than a decade, I’ve worked closely with Dr. Edna Bosire at the Brain and Mind Institute at Aga Khan University in Nairobi, Kenya. We met in the summer of 2014, when I interviewed her in a conference room at the Africa Mental Health Foundation to work on a research project for the summer. I needed a really good research partner who knew a thing or two about anthropology. She worked with me that summer and eventually completed her PhD with me through my affiliation at the University of the Witwatersrand in Johannesburg, South Africa, where I worked for several years as honorary faculty. Edna went on to do a post-doc in Malawi and was appointed as the first medical anthropology at AKU during the COVID-19 pandemic.

Even though Edna’s career has flourished, we still try to work together on something small. It’s not only because we share a curiosity about similar topics around chronic illness and health justice but also because we like each other and are continuously learning from each other. For instance, when I was conducting research in Okoboji during the pandemic, Edna conducted research in her hometown of Eldoret, Kenya. When I told Edna about the work I was going to do on Long Covid, she suggested we think about doing a collaborative project on the same topic in Nairobi.

Today, our first paper from that collective work was published in Culture, Medicine, and Psychiatry, entitled, “Stigma, Chronicity, and Complexity of Long Covid in Nairobi, Kenya.” We were so lucky to work on this project with the wonderful Lucy Kamau, who conducted many of the interviews, led the analysis, and generally was a wonderful person and friend with whom we could collaborate on this project (as well as the one in Eldoret). This article is one of the first patient-centered articles on Long Covid from Kenya, and sub-Saharan Africa more generally.

Take a look at our work here.

A sneak peak in the abstract:

Abstract

Living with a complex chronic illness can be debilitating as people are constantly negotiating new bodily symptoms, constant treatment-seeking, readjustments to identity and routine. In Kenya, millions of people were infected with COVID-19 and surveillance of Long Covid remains limited. We interviewed 23 Kenyans seek- ing medical care or social support for Long Covid to understand their lived experi- ences. Participants reported limited access to healthcare; they also described symp- toms including disabling fatigue, memory inconsistencies, and acute pain in the muscle, gut, or tissues. However, we found a unique chronic illness stigma—where people did not want to reveal that they had Long Covid because they feared of being perceived to have HIV. Participants reported feeling dismissed or disbelieved by family, friends, and clinicians and turned to online social support groups like Face- book. While some appreciated clinicians who used experimental treatment, others expressed trepidation when treatments caused them to feel sicker. The chronicity and debilitating symptoms of Long Covid may cultivate a unique stigma around the condition and point to a normalization of Long Covid with other chronic conditions, despite limited treatments. A broader understanding of Long Covid symptoms and care must be expanded to include destigmatizing the condition in Kenya.