Objective: How do persons with epilepsy (PWE) experience their everyday lives after epilepsy surgery?
Methods: Qualitative thematic interviews were conducted with eight PWEs (30 to 60 years old). They were recruited when coming for post-operative control 1 to 5 years after epilepsy surgery. The interviews were transcribed. They were analysed by thematic analysis and inspired by Goffman who examines everyday life activities as a theatre play.
Results: Before surgery, a substantial invisible and hidden work of adjustments was performed to prevent seizures, to secure help from others if seizures occurred, and to protect oneself from others' gaze during a seizure. This invisible work continued after surgery even for those who became seizure-free; but now for the purpose of protecting oneself from relapse of epilepsy. From the participants perspective there was no or minor change in daily activities among those not becoming seizure-free after surgery. In contrast, those who became seizure-free enjoyed the freedom to participate in social activities without planning or restrictions.
Conclusions: A striking finding was that daily life after surgery comprises considerably invisible work to protect a social self, and this preventive and protective invisible work continued, although those who became seizure-free were living an ordinary socially healthy life.
Keywords: Chronic illness; Epilepsy surgery; Experience; Patient; Psykosocial adjustment; Qualitative research; Recovery.
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