May 2008 - Epilepsy Australia

Epilepsy andsocial stigma:myths and realitiesEpilepsy is not a purely ‘neurological phenomenon’ and itrequires a juxtaposition of both the neurological and sociologicalcomponents to elucidate the ‘unexplored’ dimensions ofthis disorder. Although clinical, neurological, biological,psychiatric and even therapeutic aspects of epilepsy have beenfairly consistently reviewed, relatively little is known aboutpsychosocial aspects of this condition.From ancient to modern times,epilepsy has carried with it an‘undesirable’ amount of social stigmathat affects people with epilepsy invarying degrees in diverse culturalsettings. The father of sociologyof stigma; Goffman (1969) definesstigma as ‘an undesired difference’.He argues that the stigmatised areseen by others as ‘not quite humans’who are legitimate targets fordiscrimination. Link and Phelan (2001)define stigma contextually; that stigmaexists ‘when elements of labelling,stereotyping, separation, status loss,and discrimination occur together ina power situation that allows them’.Even in industrial nations like America,epilepsy carries a stigma that datesback to ancient civilisations. Someargue that stigma related to epilepsy isworse than the stigma of cancer or HIV/AIDS. Misunderstanding, fear, andanxiety resulting from stigma hamperscare and public recognition and resultsin social and even legal discriminationagainst those living with epilepsy. Ina WHO document ‘Epilepsy: socialconsequences and economic aspects’,some misunderstandings about epilepsyfrom around the world have beensummarised;• In Cameroon, it is believed thatpeople with epilepsy are inhabitedby the devil;• In China, epilepsy diminishes theprospects of marriage, especiallyfor women.• In some parts of India, attempts aremade to exorcise evil spirits frompeople with epilepsy by tying themto trees, bearing them, and cutting aportion of hair from their head;• In Indonesia, epilepsy is oftenconsidered as punishment fromunknown dark forces;• In Liberia, the cause of epilepsy isperceived as related to witchcraft orevil spirits;• In Nepal, epilepsy is associatedwith weakness, possession by anevil spirit;• In Swaziland, many traditionalhealers mention sorcery as thecause of epilepsy;• In Uganda, epilepsy is thought tobe contagious and so people withepilepsy are not allowed to join thecommunal food pot.Research shows that people withepilepsy in developing countriesparticularly in Africa, suffersubstantially from stigma and socialexclusion and they are more likely to beunemployed, get less educated and getless married.Fernandes et al (2007) in a recentstudy in Brazil found that the magnitudeof stigma is different within segments ofthe local society, highlighting that socioculturalfactors such as gender, religion,level of education may be importantpredictors of stigma. In a Korean studyby Lee et al, (2005) involving 400 adultswith epilepsy indicated that 31% ofthem felt stigmatised by their condition.Jaya Pinikahana PhDPrincipal Social ResearcherEpilepsy Foundation of VictoriaChristine Walker PhDChief Executive Officer,Chronic Illness AllianceDilorio et al (2003) reported that peoplereporting higher levels of stigma werethose who had their first seizure beforethe age of 50. In an Estonian study,Ratsepp and his colleagues (2000) foundthat overall 55% of people with epilepsybelieved that they had been treatedunfairly at work or when trying to get ajob, 51% of respondents felt stigmatisedby epilepsy, and 14% of them highly so.Baker et al (2000) in a review on ‘stigmaof epilepsy; a European perspective’involving more than 5000 people withepilepsy in 15 countries in Europefound that 51% of respondents reportedfeeling stigmatised, with 18% reportinghighly stigmatised. Paradoxically, oneBritish study found no evidence thatstigma affects the lives of those whoseepilepsy was not complicated by otherpathologies (Britten et al, 1984).Research shows that stigma hasa negative affect on the quality ofTHE EPILEPSY REPORT MAY 200811