Forgetting and remembering epilepsy: collective memory and the experience of illness

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Abstract

How do people with epilepsy relate to the long and troubling history of this disease? Drawing on two sets of interviews with people with epilepsy, one cohort from the mid-1970s and one from 2005 to 2006, this article examines how memories of what epilepsy has been shape the individual and collective identities of people living with epilepsy. We find striking similarities in how people in both interview cohorts talk about what epilepsy was in ‘the Dark Ages’, by which they refer to the recent past. Likewise, we find evidence of a collective identity among people with epilepsy. However, memories of epilepsy's past do not appear to serve as a basis for collective identity. Rather, these recollections are located in narratives of hope, in which people with epilepsy express confidence that the lives and life chances of people with epilepsy have improved – and will continue to improve – over time. Indeed, to the extent that people with epilepsy share a temporal orientation, it is much more to a collective future than to a collective past. Our conclusions, therefore, focus on the ways that the meanings of the past are shaped not only by present events but also by anticipated futures.

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