Bosire Edna N, Kamau Lucy W, Mendenhall Emily
Brain and Mind Institute, Aga Khan University, 3rd Parklands Avenue, Nairobi, Kenya.
Georgetown University School of Foreign Service, Washington, DC, USA.
Cult Med Psychiatry. 2025 Apr 5. doi: 10.1007/s11013-025-09906-7.
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.
患有复杂的慢性疾病可能会使人虚弱，因为人们需要不断应对新出现的身体症状，持续寻求治疗，重新调整身份认同和日常生活。在肯尼亚，数百万人感染了新冠病毒，对新冠长期症状的监测仍然有限。我们采访了23名因新冠长期症状而寻求医疗护理或社会支持的肯尼亚人，以了解他们的生活经历。参与者表示获得医疗保健的机会有限；他们还描述了一些症状，包括使人衰弱的疲劳、记忆不一致，以及肌肉、肠道或组织的剧痛。然而，我们发现了一种独特的慢性病污名——人们不想透露自己患有新冠长期症状，因为他们担心被认为感染了艾滋病毒。参与者报告说，他们感觉被家人、朋友和临床医生忽视或怀疑，于是转向了脸书等在线社交支持小组。虽然一些人赞赏使用实验性治疗方法的临床医生，但另一些人在治疗使他们感觉病情加重时表示担忧。尽管治疗方法有限，但新冠长期症状的慢性特征和使人衰弱的症状可能会围绕这种疾病形成一种独特的污名，并表明新冠长期症状与其他慢性疾病一样趋于常态化。必须扩大对新冠长期症状和护理的更广泛理解，以包括在肯尼亚消除对这种疾病的污名化。
