OvercomingStigmainEpilepsy

YanzhuoLi

English1A
ProfessorOgden
June19,2016


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OvercomingStigmainEpilepsy
ItisabeautifulSouthernCaliforniaday.Theweatherisacomfortable70degreesand
notacloudinthesky.AsIamwalkingtoclass,Inoticethesunshiningextremelybrightly,
andIamsuddenlyovercomebyanintenseandunwaveringsenseofanxiety.Itislikeapanic
attack.Igetasharpringinginmyears.Ihavetroublebreathing,andtheworldaroundme
becomesunbearablybright.Itissobrightthatmyeyescanbarelystayopen.Iclosethem.I
fall.Iloseconsciousness.Mywholebodybeginstoshakeviolently.Inolongercontrolmy
armsandlegs.Theyswingaroundoftheirownvolitionandrepeatedlyslamintothehard
concretebelowme.Then,theycrampupandIshakeuncontrollablyontheground.Igroan.I
foamatthemouth.Istareblanklyintothewalloflegsaroundme.Iregainconsciousness.I
amconfusedaboutwhatjusthappened,butthetelltalebloodyscrapesalongmyarmsand
legskeepmeinformed.Peoplearoundmeareshocked,scared,andpanicked.Somescream
forhelp,somecall911ontheirphones,whileotherssimplylookoninbewilderment,
confusion,andcuriosity.Fewknowhowtorespond.

Ihaveneverhadaseizurebefore,butthatiswhatitmightbelikeifIdid.Seizures
tendtobeunpredictableinnatureandtheyvarywidelyintermsoftheirmanifestation.
Peoplewithaconditioncalledepilepsyhaveseizures.Theluckyoneshaveitundercontrol
throughmeanssuchasmedicationorsurgery,butothersmaynotbesofortunateandmust
livewiththisSwordofDamocleshangingovertheirheadeverymomentoftheirlives.They


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liveinfearthattheirconditionmaybediscoveredunintentionallybyfriendsorcolleaguesin
averypublicfashion.Theyfearlosingtheirdriverslicense,job,meansofsurvival,and
possiblyevenfamilyafterpeoplelearnoftheircondition.Theyfearbeingviewedasafreak
orapersonwhoispossessed.

Iunderstandthesefearsbecausemyunclehastoldmeaboutthem.Interestingly,my
uncleactuallywasn'tbornwithseizuresassomepeopleare.Infact,heisabletotracethe
startofhisbattleswithseizurestoaveryspecificdayinhischildhood.Thatfatefulday
changedhislifeforever.Myunclewasaveryactivechild,andoncehewasoutplayingall
dayonaveryhotsummerday.Afterafulldayofrunningaroundwithhisfriendsfooling
aroundasyoungchildrenoftendo,myunclecamehomeanddrankalargepitcheroficecold
water.Thatonedrinkwasenoughtoinitiatealifetimeofseizuresandthestigmathatcome
withthem.

Myunclewasofficiallydiagnosedwithepilepsyaftertheseizureskeptonreturning.
Epilepsyisachronicneurologicalconditionthere'scharacterizedbyrepeatedseizures
(EpilepsyFoundation).Thereisalargevarietyofseizuresastheseverityanddurationofthe
seizuresmayvarywidely.Thesimplestwayofunderstandingwhataseizurelookslikeinthe
brainisbythinkingofbraincellsasacollectionofstreetlights.Undernormalcircumstances,
thebraincellswillhaveworkinglightsthatwillshowgreen,yellow,andredinorderto
controltheflowoftrafficorflowofelectricityinthebrain.Theflowofelectricitydetermines


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whichbraincellsarebeingactivatedataparticulartimeandallowspeopletocontrolthings
suchastheirmovement.However,duringaseizure,allthelightsaregreen,andthebrain
cellsareallfiringoffatthesametime.Thisultimatelycausesthepersonwhowas
experiencingaseizuretotemporarilylosecontrolofsomenormalbodilyfunctions.Some
peoplemaylookasiftheyarestaringoffintothedistanceanddaydreaming,whileothers
maydroptothegroundandhaveverysevereconvulsionsthatcouldleadtobodilyharm.

InformationfromtheEpilepsyFoundationindicatesthatmorepeoplelivewith
epilepsythanwithautismspectrumdisorders,Parkinsonsdisease,multiplesclerosisand
cerebralpalsycombined

(EpilepsyFoundation).Infact,therearetensofmillionsofpeople
intheworldlivingwithepilepsy.TheaverageincidenceofepilepsyeachyearintheU.Sis
estimatedat150,000or48forevery100,000peoplewhichmeansthatapproximately
150,000peoplewilldevelopepilepsyintheU.S.thisyear.Althoughpeoplewithepilepsy
maybediscriminatedagainst,epilepsydoesnotdiscriminateinitsselectionofvictimsandis
aconditionthataffectspeopleofeveryrace,age,gender,profession,andcreed.Inshort,
almostanyandeverypersonispotentiallyatriskofdevelopingtheconditionatsomepointin
theirlifetime.

Althoughtherehavebeenmanymedicaladvancesmadeinthefieldofepilepsysuch
asnewmedicinesandsurgeries,someofthetoughestbarriershavenotbeenthecondition
itselfbutrathertheviewspeoplehaveofit.Peoplewithepilepsygenerallygetthecondition


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throughnofaultoftheirown,buttheymustbeartheburdenofdiscriminationand
stigmatizationbecauseoftheircondition.Isubmitthatthisthestigmathatpeoplewith
epilepsy(PWE)mustcontinuetofaceasthemostpressingissuefacingthatcommunity.

Peoplewithepilepsy(PWE)suffernotonlyfromthephysicalmanifestationsofthe
conditionbutalsogreatlyfromthestigmaanddiscriminationthatsurroundsthecondition.
TheresearchliteratureshowsthatthestigmatizationofPWEpersists,invaryingdegrees,
acrossnationsinallstagesofeconomicdevelopment(Chungetal).Infact,informationfrom
theWorldHealthOrganizationclaimsthatthesocialconsequencesofepilepsyposea
substantialbarriertohealthparityandimprovedcareforPWE,sayingthatthe
discriminationandsocialstigmathatsurroundepilepsyworldwideareoftenmoredifficultto
overcomethantheseizuresthemselves(WorldHealthOrganization).Assuch,PWE
continuetobeartheburdensofstigmatizationanddiscriminationwhiletheyfighttocontrol
theirseizures.Ignoranceandmisguidedculturalpracticesaretwoofthemaincausesofthe
stigmatizationanddiscriminationfeltbyPWE.

Althoughepilepsyisaconditionthataffectstensofmillionsofpeoplearoundthe
world,manypeoplearestillrelativelyignorantastothecharacteristicsandcausesof
epilepsy.Duetothisignorance,peoplemaygrowfearfulbecausepeopletendtobe
needlesslyafraidofthingstheydonotunderstand.Forexample,peoplemaytrytobanthose
withepilepsyfromhavingchildrenbecausetheyfeelthatepilepsyisageneticallylinked


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condition,eventhoughepilepsyisrarelypassedonfromparentstochildren.Further,some
mayevenrecommendthatpeoplewithepilepsyareimprisonedbecausetheyfearthattheir
seizuresareamanifestationofpossessionbythedevilorevilspirits.Althoughbelievingthat
PWEarepossessedbydemonsmayseemlaughabletomosttoday,ithasbeenawidely
acceptedperceptionaroundtheworldforcenturies,andmaystillbethemostwidelyaccepted
perspectiveinsomeareasoftheworldtoday(WorldHealthOrganization).

Manycountriesinthepasthavepubliclyandunapologeticallydiscriminatedagainst
peoplewithmentalhealthconditionslikeepilepsy.EventheUnitedStates,whichisoneof
themostliberalandprogressivecountriesintheworld,hashadlawsthatdiscriminated
againstpeoplewithepilepsyuntiltherecentpast.Forexample,intheUnitedStatesof
America,untilthe1970s,itwaslegaltodenypeoplewithseizuresaccesstorestaurants,
theatres,recreationalcentresandotherpublicbuildings(WorldHealthOrganization).Even
worse,anumberofstatesintheU.S.bannedPWEfromhavingchildrenorevenfromgetting
marriedundercertaincircumstancesuntilonlyafewdecadesago.Moreover,thecultureof
thecountryallowedforinstitutionalizeddiscriminationagainstpeoplewithepilepsy.Instead
ofthinkingtohelppeoplewithepilepsy,mostgovernmentsdecidedtosociallyquarantine
themandkeepthemseparatedfromsocietybydisallowingthembasicrightssuchasthatof
marriage.Whengovernmentsessentiallyshowtheirpeoplethatitisacceptableto
discriminateagainstacertaingroupofpeople,thenthedenizensofthatcountrymaybemore


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likelytofollowthroughwiththediscrimination.Forexample,theWorldHealthOrganization
statesthatinbothChinaandIndia,epilepsyiscommonlyviewedasareasonforprohibiting
orannullingmarriages(WorldHealthOrganization).Thisofficialgovernmentsanctioning
ofdiscriminationisoneofthereasonscertainpopulationsfromthosecountriesmaycontinue
toholdmorediscriminatoryviewstowardsPWE(Chungetal).Itiscrucialtorememberthat
thefaiththatpeopleplaceintheirgovernmentsandleadersgivetheseofficialsaplaceof
authorityandvaliditythatcanbeusedtoinfluencethegeneralpopulation(Thomas).More
importantly,thegovernmentshoulduseitspowerstoencouragepeopletobemoreaccepting
ofallpeopleandnottostigmatizethosewithcertainconditionsorfromparticular
backgrounds.

Peoplewithepilepsymayfeelstigmatizedbecauseotherpeopleintheirsocialcircles
donotwelcomeorpurposefullyostracizethemduetotheircondition.Researchhasshown
thattherearestillasignificantportionofpeoplewhowouldrefusetoallowtheirchildrento
interactwithchildrenwhohaveepilepsy(Chungetal).Further,thereisanevengreater
numberofpeoplewhowouldnotallowtheirchildrentobemarriedtosomebodywith
epilepsy(Chungetal).Intheworkplace,managersandownersofbusinessesmaychooseto
terminatepeoplewithepilepsybecauseoftheirconditionormaysimplydenyPWEtheright
toworkregardlessoftheirqualifications(Chungetal).Althoughthispracticeof
discriminatingagainstpeoplewithepilepsyisagainstthelaw,itispossiblethatthepeople


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whoarebeingfiredfromtheirjobdonotfeelworthyoffightingforthatpositionafter
termination.Theownerofthebusinessmayalsoclaimotherreasonstoterminatethatperson.
ThisisoneofthereasonswhyPWEsometimesfeelasiftheydonotbelongand
subsequentlymaynotbeabletoachievetheirfullpotentialinschoolandtheworkplace
(Chungetal).Itisunacceptableforpeopletofeelasiftheyarelesserbecauseoftheir
condition.Moreover,weasasocietyshouldcontinuallyfightforpeoplewhohave
unfortunateconditionssothattheymaybeabletoachieveanequalfootinginsociety.

KennyChung,apublichealthprofessionalwhohasledresearchteamsatboththe
UniversityofCalifornia,BerkeleyandHarvardUniversity,andhisteamshaveconductedthe
firststudiesrelatedtoepilepsyattitudesamongAsianAmericans.Researchconductedby
Chungetalrevealsthatpeoplewithepilepsycontinuetofearlosingtheirjobsafterhavinga
seizureintheworkplace(2010).Further,theirresearchshowsthattherearestillmany
misconceptionsaboutepilepsyandthedegreeofdiscriminationtowardspeoplewithepilepsy
seemstobehigherinAsianAmericansascomparedtothenationalU.S.averages(Chunget
al,2010).ThiselevatedlevelofstigmatizationintheAsianAmericanpopulationislikelya
byproductofmisguidedbeliefscarriedoverfromothercountriesasitisnoticeablylower
amongyoungerAsianAmericans(Chungetal,2010).Moreover,AsianAmericansasa
groupwouldbenefitevenmorefrominterventionsthatreducedthestigmatizationofPWE.


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InresponsetothediscriminationthatPWEfeelfromtheoutsideworld,thosewith
epilepsymayinternalizethatdiscrimination.Further,theybegintothinklessofthemselves
becauseoftheexternalmessagesthataffectthemsocially(Baruchin).Theymaybeless
likelytoseekoutresourcesthatmaybeofservicetothemandcanhelpmitigatetheissues
thattheirconditionhascaused(Chungetal).Inaddition,peoplewithepilepsymaybeginto
thinkthattheyweresomehowresponsiblefortheirconditioneventhoughtheymaynotbe
(Jacoby).Inmanycasesofepilepsy,thepersonwhohastheconditionactuallydoesnotknow
howtheconditionhascomeabout.Infact,EpilepsyFoundationsubmitsthataboutathirdof
epilepsycaseshavenoknowncausesthatcanbediagnosedbyaphysician(Epilepsy
Foundation).

Peoplewithepilepsy,whonumberaroundfiftymillionin2016,continuetoface
discriminationandawaytoreducethediscriminationisbyeducatingthepublicand
changingsocietalviewsofthecondition(WorldHealthOrganization).Itiscriticalforsociety
togetaclearunderstandingofwhatepilepsyisinordertogetpeopletochangetheirminds
aboutthisconditionbecausepeopletendtobemoreafraidofwhattheydonotunderstand
(BisgaardFrantzen).Sinceitisunderstandableforpeopletofeartheunknown,acriticalfirst
stepforpeopletostopdiscriminatingagainstPWEistoincreasetheirknowledgeand
awarenessoftheconditionsothattheymaybegindevelopingempathyforthosewith
epilepsy.Someeffectivewaysofincreasingawarenesscouldinvolveorganizationssuchas


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theEpilepsyFoundationwhichserveasanexusformanydifferentorganizationsthatcan
furtherdisseminateinformationregardingepilepsysuchasneurologyclinics.Otherhelpful
waysofraisingawarenessincludedoingcharityrunsandotherfundraisingeventswhere
peoplecometogethertolearnabouttheconditionandhelpspreadawarenessthrough
personalinteractions.Theconditionofepilepsyisindeedafearsomeone.Itisthroughthe
considerationandcompassionofpeoplearoundtheworldthatpeoplewithepilepsymay
experienceabrighterfuture.


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Thomas,Sanjeevv,andAparnaNair."ConfrontingtheStigmaofEpilepsy."
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