Stigma, Chronicity and Complexity of Living with Long Covid in Kenya

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 seeking medical care or social support for Long Covid to understand their lived experiences. Participants reported limited access to healthcare; they also described symptoms 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 Facebook. 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.