The Psychosocial Burden of Epilepsy

Epilepsy is a disorder associated with significant psychological and social consequences for everyday living (1). People with the condition report a significant impact of epilepsy and its management in terms of family dysfunction, reduced social and leisure opportunities, and increased levels of anxiety and depression and poor selfesteem compared with people without the condition (2). A central feature of the condition is its stigmatising nature (3). A number of studies have reported that the quality of life of people with epilepsy can be severely compromised by statutory conditions on driving and employment and by limitations in insurance provision, causing problems for well-being and independent living (4). Recent studies have, however, shown that people with wellcontrolled seizures are less likely to report psychosocial problems, and people in seizure remission (>2 years seizure free) report a quality of life not significantly different from those without the condition (5). Most of the evidence for the psychosocial problems associated with epilepsy has been drawn from studies in developed countries; in comparison, relatively little is known about the situation of people with epilepsy in developing countries. This is partly explained by the lack of resources available to conduct such research. A number of small studies have shown that attitudes toward and beliefs about epilepsy are largely pejorative, explained to some degree by the notion that the condition is infectious or the outcome of possession by evil spirits. Opportunities for marriage and employment are likely to be substantially worse for people with epilepsy in the developing world than for their developed world counterparts. The unpredictability of the nature and course of epilepsy is a key factor in the psychosocial handicaps it engenders for people in whom it develops. For centuries and across countries, epilepsy has been a condition with extremely negative connotations, and even now, the label of epilepsy is often rejected by those with the condition. I draw evidence from published research to highlight what is known about the psychosocial consequences of this condition and the contribution physical, social, and psychological variables make to its impact on the quality of life of those affected in both developed and developing countries.