“I wonder if I did not mess up….”: Shame and resistance among women with epilepsy in Cape Town, South Africa

The importance of paying attention to individual stories, especially of a stigmatised condition such as epilepsy, cannot be over-emphasised. For Kleinman [1] as cited by Fadiman [2] (p. 262), “every illness is not a set of pathologies but a personal story”. This is crucial because stories enable us to gain an in-depth understanding of the individual’s lived experience of the illness and its symptoms and how the illness disrupts the individual’s life [3] (p. 52). In this article we present four individual stories of Xhosa speaking women with epilepsy (WWE) – which are part of the findings from our larger qualitative research project which is the first to explore perspectives and subjective experiences of Xhosa speaking adults with epilepsy and their carers in an urban Black township in Cape Town, South Africa, Kleinman’s [1] Explanatory Model framework and his typology of systems of health care.

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