beyond illness - art and the human experience · beyond illness art n’ the human experience...

Beyond Illness Art n’ the Human experience Shanali Perera MBBS MRCP

“The aim of art is to represent not the outward appearance of things, but their inward significance” ~ Aristotle

Creativeexpressionhasundeniablesustainablepower.Itisarenewableenergysourcethatyieldsvaluableinsightintowhatitmeanstobehuman.ItookupDigitalartfollowingearlyretirementduetoarareillness,thatcameonduringmyspecialisttraininginRheumatology.Iamusingmystoryasastartingpointtoexplore‘usingarttotransformtheillnessexperience’intoamoremeaningfulwayofliving,movingfromclinicalpracticetodigitalart,afterbecomingapatientinmyownspecialty.Takingtheopportunitytoconveytheimpactarthadonsupportingmetotakecontrolandmanagemylong-termcondition.Howarthashelpedmetore-definemyselfafterillnessdominancedistortedmyidentityandimage.Ipresentlyadvocatefortheuseofcreativitytocopewithlong-termillness.BasedinManchester,myworkiscentredongeneratingawarenessaboutcreativeengagementandfindingtoolssuchasarttocombatthechallengesofillnessexperience,alongwithothertherapies.Aswellasgeneratinganinterestonhowexpressionsofthe‘livedexperience’canhelphealthpractitionersandthepublicgainnewperspectivesbeyondpatients’illnesses.Beingbothadoctorandapatient,Ihadtheopportunitytogainauniqueperspectiveofgoingthroughthejourneyof'Artn’thehumanexperience’.Encounteringthe“faceofeverydaystruggles”aspatients’seeitseemedverydifferentwhenseatedontheoppositesideofthedeskforthefirsttime.Upuntilthen,Ihadfocusedonthephysicalelementsofdiseasesmoreasablackandwhitereality,whereastheexperienceofillnessistherealitywithmanyshadesofgreytothepatient.

Articulatingtheillnessexperience,especiallywithlong-termconditions,canberatherdifficultattimeswhenyouaredealingwithmultiplelayers–beitemotional,cultural,spiritual,social,dynamicsatworkandrelationships,allatonce.Havingnoformalarttraining,myartcomesfromwithin.Exploringartandthehumanfactor,myvisualexpressionsaimtohighlightwhyitmatterstoarticulatehiddenrealitiesofwhatthe'livedexperiencelookslike’withlong-termillness.Makingthe“InvisibleVisible”,avisualvoicetryingtogivea‘biggerpicture’ofalltheunderstatedburdensassociatedwithchronicillnessordisability.Givingmorevisibilitytothehumanfactorinthepubliceye,Iamreflectingonthepersonalnarrativeofstruggle,acceptanceandadaptationsmadeovertime.Thisleadstoconversationsaround‘Narrativesinartform’.Whencircumstancesstartedtodefineme,mydialoguebegan.Iaskedmyself,What defines me? Is it what I do? Is it what I stand for? Is it what I believe in?Am I purely defined by the illness?Andothers,How do you see me? Me the ‘illness’? Me the ‘person’? Do you see the face behind the illness?Alongtheway,examining,expandingandlookinginto:-Everydaystrugglesandchallenges-Impactofillnessonimage,self-identityandself-esteem-Understandinginvisibleillnesses-Stereotypingandstigmasencountered-Socialandculturalisolationassociated

Theconceptofempoweringpatientstobetterengagewithself-managingtheirlong-termconditionsischangingtheworldatanever-increasingpace.The21stcenturyhealthcareparadigmisshiftingawayfromthemedicalmodelfocusingoncuretoamodelfocusingonholisticcare.Throughmyartwork,Iaimtodeliberateonmyencounterintegratingcreativityandhealingwithlifealteringsituations:‘Creativeempowerment-exploringthehealingpowerofart’.

My story - Role reversal from doctor to patient Creatingdigitalarthashadatransformativeeffectonmyabilitytomanagemycondition.IdevelopedVasculitis,whichaffectsmyhandfunctionandmobilityamongstotherthings.Iwasalsodiagnosedwithposturaltachycardiasyndrome(PoTs),anabnormalityofthefunctioningoftheautonomicnervoussystem.Thiswaslifealtering.Simplystandingupandwalkingafewyardsbecameachallenge.IamcurrentlyapatientunderthecareofRheumatologyservices.Thestartofmyillnesswasduringmy2ndyearofspecialisinginRheumatologyasatraineedoctorinBirmingham,UK.Itwasanilluminatingexperiencebothpersonallyandprofessionally,whenIbecameapatientinmyownspecialty.Suddenlyatcrossroads,notknowingthedirectionmylifewasheading,facingseveralchangesanddealingwithmultiplelayersofemotionsallatonce;itwasanoverwhelmingexperience.Mydailyroutinetooka180-degreeturnandsuddenlyIlostallthatfunctionalindependenceandfreedomIhadtakenforgranted.

EverythingrevolvedaroundCoping.Adapting.Adjusting.Mywholelifestylechanged.Ashiftinrolesanddailydynamicscameabout.Thencamerevisingpriorities.Aftermanyfailedattemptsatreturningtowork,swappingfromfull-timetopart-timetraining,andtakingcountlessperiodsoutoftraining,Ifinallyhadtoacceptillhealthretirement.Chronicdiseases/disabilitiescanturnone'slifeupsidedowngraduallychangingthelandscapeofdailyliving.Feelingpowerlessmostofthetimebecamepartandparcelwiththevariabilityinsymptoms,theunpredictablecourseofthecondition,thedisruptionofmypreviousroutineandfunctionalindependence.Upholdingthesamelevelofpersonalstandardsandself-worthbecameastruggletoachieve,letalonemaintain.Withthebalancetippingovergradually,everyaspectofmylifewassuddenlyovershadowedbytheillness.Itdidn’ttakelongtostartfeelingisolatedandlosesightofself-identity.

What led me to art WhatchallengedmethemostwasfeelingthatIhadlostcontrol-theillnessdominating,overtakingandover-poweringme?BeingconfrontedwiththefearthatmyillnesswoulddistortwhoIam;myidentityandself-image.Creatingarthasprovidedmewithanescaperoute.Ithashelpedmetoredefinemyself-identity,expressandsymboliseefeelingsabouttheillness,andfocusonwhatIcandoinsteadofwhatIcan’tdo.Ican’tcontrolmysymptomsorthecourseofmycondition.Icanhowever,controlwhatIcreate.Iuseartasatoolformindfulness,positivereinforcementandreflectivethinking.Itgivesmethestrengthtocope.Ithashelpedmetoachieveasemblanceofnormalityandenabledmetosetmorerealisticgoalsaroundmylimitations.

The role Digital medium can play Peoplewithcertaindisordersnotonlyhavetodealwiththegeneraldisabilityofthechronicillness,butalsothephysicallimitationofexpressingwhatisinourminds.Onrepeatedusage,myhandsbecomenumbandpainfulalongwithpainradiatingtomyshoulders.Usingadigitalapplicationonmymobilehasenabledmetocreateartwithminimalphysicaleffortandalternatehands.Iexperiencelesspainandfatiguethroughthismediumthanwhenusingapaintbrushoncanvasorcharcoalonpaper.Forme,thisformofartisticexpressionwasameansofself-explorationtoconveyhowIwasfeeling.Thisnewfoundfreedomtoexploremyselfthroughtheworldofcolours,gaverisetomypresentwork.

What I ’d l ike to focus the spot l ight on Thepatientjourneycanbedraining.Therollercoasterrideofnewsymptoms,sideeffectsfromdrugs,flare-upsandmoodswingscontinuetofluctuate.IfoundexpressionthroughartnotonlyrepresentssymbolicaspectsofcopingbutalsodemonstratesthemanyfacetsofemotionsanddegreesofpainIfeelatvariouspoints,asavisualnarrative.Arthashelpedmeimmenselytofaceoverwhelminglytraumaticperiodsduringmyjourney.Iuseartasavisuallanguagetosharemyexperienceswithmyfamily,friendsandhealthteamsothattheycouldgainnewunderstandingsaroundthe‘livedexperience’.Formany,addressingthephysicalelementaloneisnotenough.Creatingartcanhelppeopletocommunicatetheemotional,spiritual,andculturalpressuresoflivingwithlife-limitingconditionsorsituations.Visualexpressioncanalsohelpothersunderstandemotionsandempathisewithpain,illnessordisabilities.Artcanbemorethanaformofexpression;itisalsoawayofthinking.Itcanbeanoutletthatportraysthesubjectivesomaticorperceptualexperience.Thiscaninturndevelopself-reliance,copingstrategies,socialengagementandculturalinclusion.Sharingthroughcreativeexpressionwithothers’breakstheisolationandimprovessocialinteraction,empoweringpeopletobetteradapttochallengingsituations.Establishingasenseofpurposeinspiresforwardmovement,enduringchallengesofanillness.

What l hope to achieve through my Art; food for thought?

StartmoreconversationsHowthe‘creativeforce’empoweredme.Howithelpedmetoregaincontrolfromoverpoweringemotionsandchallengesthatstemmedfromararelong-termillness.How,regainingasenseofcontrolbecomesasignificantcomponentinmanagingtheconditionandmovingforwardwithlifeandwork.Frommyexperience,adaptingtofindwaysaroundlimitationsplaysakeyroleinrebuildingconfidence.Havingatool,suchasart,ontopofothermedications/therapiesbecomesveryhelpfultocopewiththeeverydaybattles.Iwouldliketoreachoutothersinsimilarsituationstosharemyobservations,sotheycanfindsimilartools,iftheyhaven'talreadydoneso,tocombattheon-goingstruggleswithwork,life,confidenceandself-esteem.Thereismountingevidencetosupporttheuseofcreativityinreducinganxiety,depressionandstress,inturnbringingaboutimprovedhealthoutcomes.

MoralimaginationIwouldliketoseemoreartindialogue,communicatinganddisseminatinghowartcanhelpfriends,family,public,healthproviderstoseethemultiplicityandthefluidstateofthe‘livedexperience’.Iwoulddrawattentiontothepotentialimpactoffacilitating‘Expressionofillnessexperiences’,canhaveonaperson’sidentityandself-worth,focusingontheunderstandingof'howpeoplemakesenseofkeylifeexperiencesandwhatitmeanstothem'.Whenitcomestoclinicians,thepresentationandrepresentationofillnessexpressedinvariousartforms,canprovideavoicetorevealthelivedexperiencesofillnessintheircomplexity;aprompttohelpbridgethegapbetweenthe‘Biomedicalandhumanfocus’.Newawarenessorunderstandingaboutissuesfacedbytheirpatientsopensupcommunicationchannels,makingroomfordifficultconversations.‘Seeingmoreofthefacebehindtheillness,thepersonwiththeirstrengths,notjustthepersonwiththeillness.’Itwouldprovideanopportunitytoseemultiplealternativemeaningsthatmayaffecthealth;awiderdifferentialdiagnosis;theproblemsofrushingtoaprematureconclusion.Throughlookingatart,wecanenhancethecapacitytorecognisethemoraldimensionsofclinicalexperiences.Explorethequestionofempathyandethicsinhealthcareprovision,increaseawarenessofemotionalreactionstoethicalissues,anddevelopwhat’sknownas“moralimagination”.Itwouldfosterandharnessabstractthoughtandinnerreflectiontoexpandanddeepenperspectivesinsuchawayastofacilitatedetailedclinicalobservationand‘thinkingoutofthebox’approachestoeverydayclinicalpractice.Artcanalsobringaboutdiscussionsaroundculturalunderstandingandculturaldeterminantsofhealth.Thesupportiveevidencelookingintoartinhealthpromotion,preventionandillnessmanagementiscontinuingtogrowworldwideandrapidlygatheringmomentum.

Placemoreemphasisonthepowerillnesshasonimage,identityandself-esteemSeeingbeyondtheillness-creativeexpressioncanhelptoredefineself-identity.Creativitycanbeusedtoexploreandrepresentone’sindividualjourney-Thewaychronicpain,illnessesandhealthchallengesareconstantlychangingshape,definingandre-definingitself.

BetterunderstandinvisibleillnessesandstigmaGiventheopportunity,peoplefacingpain,chronicillness,disabilityandotherchallengescanfreelyexpressthemselveswithoutphysical,socialorattitudinalbarriers.Thereforebyengaginginthearts,theycanconnectandcontributetotheircommunities;challengeexistingstereotypesandstigmas.Helpbuildaculturetrulyrepresentativeofallpeople.

Promotetheroleofdigitalapps/mediumPresentdayrepresentstheDigitalAgewhereDigitalTechnologyinhealthcareisrapidlyevolvingworldwide.Theuseofdigitalmediumforcreativity,especiallyforpeoplewithlimitedhandfunctionordexterityissuescanbeaconstructiveaswellasanenjoyablepursuittocopewithstrugglesofday-to-daylife.

ConnectandCollaboratewithothersinthefieldofartsandhealthUsingmypersonalinsights,Iamfocusingontriggeringawiderinterestintheroleofartasatool,potentialtherapeuticbenefitsofcreativeengagementasanon-medicalapproachtoself-managementinpeoplewithlong-termconditions/disabilities;involvingpatients,carers,healthprofessionalsandthepublic.OverthelasttwoyearsIgottheopportunitytodoafewworkshopswithpatientsupportgroups,studentsandcarersbothintheUKandSriLankaexploringtheideaof‘Art,acatalystforhealing?’.Conversationswithothersinsimilarsituations,aswellaswithhealthandalliedhealthprofessionals,havebroughtoutandpointedtothepositiveinfluence,creativityimparts.

“Creativity is intelligence having fun.” ~ Albert Einstein

What does the evidence say? Thepracticeofartsandhealingdatesback40,000years.Forcenturies,acrosscivilizationscreativeexpressionhasbeenusedaspartofhealingrituals.Theideathatcreativeexpressioncanmakeapowerfulcontributiontothehealingprocesswasembracedbymanydifferentcultures.Throughoutrecordedhistory,peoplehaveusedpictures,stories,dances,andchantsashealingrituals.1Itwasbelievedthatarthealedtheworld,notjusttheindividual.Thatartandmusicchangedthehunt,fertility,thecrops,theweather,thelifeofthetribe,andtheearth.Overtime,asenseofmysteryandmagicwasattributedtosomeofthesepractices,whichunfortunatelymadethemquestionable.However,overthepastfewdecadestheyhavestartedtocomebackandthere’sincreasingevidencesupportingtheirusage.

ResearchsupportsthenotionofArtshavingthepotentialtoassistinpromotinghealthandhealingtohelptheincreasingdemandsonhealthresources.Supportiveevidencedemonstratesthatthebio-psycho-socialprocessesfacilitatingcreativeactivitiescanreduceanxiety,depressionandstressinturnimprovinghealthoutcomes.Thesebenefitscanbeacatalystforhealing.2,3Theroleoftheartsinhealingcomplementsthebiomedicalviewbyfocusingnotonlyonsicknessandsymptomsbuttheholisticnatureofthepersonbringingemotional,somatic,artistic,andspiritualdimensionstohealing.1Guillemin,oneofthefirsttousedrawingsinanefforttounderstandexperiencesofhealthandillness,examinedhow32womenwithheartdiseaseunderstoodtheircondition.Eachparticipantwasaskedto‘‘draw’’herheartdisease.Patentsfoundvisualizingtheirconditiontoexploreunderstandingsofillnessinsightful.4Anotherstudylookingattheroleofartinchronicillnesspatientsdemonstratedthatartfilledoccupationalvoids,distractedthoughtsofillnessandmaintainedapositiveidentity.Itsvaluewasconceptualisedbyoneparticipantasa'lifestylecoat-hanger'organisingnumerousrolesandactivitiesthatgavepurposetolife.Italsoofferedaversatilemeansofovercomingtherestrictionsimposedbyillnessonselfandlifestyle,inmanycasescreatingamoreenrichedlifestylethanbefore.5

Furthermore,astudyexaminingpainin50adultcancerin-patientsfollowingaone-hourarttherapysessionshowedstatisticallysignificantreductionsinthemeasuredsymptomsthusdemonstratingtheefficacyofarttherapyinreducingabroadspectrumofsymptomsinthesepatients.6Thereissufficientscientificevidencethatindicatesartenhancesbrainfunction.Recentstudieslookingatphysiologicalrecordingsusingelectroencephalographyandbrainimagingtechniquessuch

asPETscansandfunctionalMRIscanshaveallowedustogainabetterunderstandingofthebrainmechanismsimportantinvisualcreativity.7,8

Quantitativestudieslookingatpatientswithcancer,chronicillness,dementiaandstrokerevealsignificantimprovementsinmood,physiologyandsymptomslikepain,fatigue.Areviewofcurrentresearchtodeterminewhatisknownaboutartandhealing,coveringtheperiodfrom1995to2007peer-reviewedresearchonartsandhealingstates:“Arthelpspeopletoexpressexperiencesthataretoodifficulttoputintowords,suchasadiagnosisofcancer.Somepeoplewithcancerexplorethemeaningsofpast,present,andfutureduringarttherapy,therebyintegratingcancerintotheirlifestoryandgivingitmeaning.Thisshowshowartisticself-expressionmightcontributetomaintenanceorreconstructionofapositiveidentity”.1Agrowingbodyofresearchlookingintothecognitiveeffectsofmakingartrevealshowdrawingandpaintingstimulatedmemoriesinpeoplewithdementiaandenabledthemtoreconnectwiththeworld.Doingsohasbeenlinkedtoimprovedmemory,reasoning,andresilienceinhealthyolderpeople.Decadesofresearchhavedemonstratedthatinpeoplewithdementiaandotherprogressiveneurologicaldiseases,theabilitytocreateartremainslongafterspeechandlanguagehavediminished.9Evidenceisalsoemergingthatartparticipationcanaugmentrehabilitation,helpingtoaddressthepsychosocialeffectsofstrokeandpreparesurvivorsforfulfillinglivesafterrehabilitation.Assumingthatartparticipationinartisavaluableadjuncttorehabilitation,itisvitalthatweseektounderstandhowitworksandtheoutcomesthatitinfluences.Inlinewithotherrehabilitationinterventions,suchunderstandingwillenableustorefinetheinterventiontotargetitatthosemostlikelytoderiveitsknownbenefits.10

Finally,arecentinvestigationlookingattherelationshipbetweendiscretepositiveemotionsandimmunemediators(Interleukin6)foundactivitiesthatinspireawewerethestrongestpredictorofloweringlevelsofinflammation.Thisworksuggestsapotentialbiologicalpathwaybetweenpositiveemotionsandhealth.11Thisbegsthequestion‘Doesmakingartinfluenceillnessprogression?’Furtherunderstandingofthebiologicalresponsestodrawingisneededtoexaminepotentialpathwaysreducinginflammationwhenengaginginartisticactivities.

“Where there is love for humanity there is also love for art” ~ Hippocrates

What roles can artists play?

Giventhemomentumresearchandpracticeof'Artsinhealth'isgathering,artistsmaybeabletoplayaroleinhealthcare.Duringatimeofuncertainty,economicconstraintandturmoilwithinhealthcare,can“arts”haveameaningfulimpactonthe‘Futureofhealthcareprovision’?

GovernmentsacrossEuropeandtheworldarerealizingthatthereisanuntapped,lowrisk,highlycosteffectivehealthbenefittoparticipationinarts.Evidencesupportsreferringpeopletocreativeactivitiescanreducedemandonthehealthcaresystemandempowerpeopletofeelincontroloftheirownhealth.Takingthisintoaccount,possibleconsiderationsfortappingintothearts,morethancurrentlypractisedissomethingtoexplorefurtheralongwiththequestionof'couldanartisthaveanintermediaryroleinhealthcare?

What next? Iwouldliketoconcludebyinvitingreflectionsontheclinicalimplicationsoftheartsforhealthcareprofessionals,educatorsandgeneralpublicwhilebringingyourattentionto‘howarthasthecapacitytocaptureasenseofwhatthepatientrealityresembles’andplayacontributoryroleinclinicalcare.Agreatdealofdiagnosticpowercanbedrawnfromthevisualworld,openingtangentialpathwaysoflearning.Visualartscanhelpexploretheunderstandingofthehumanaspectofmedicalpractice.Thereisroomtothinkaboutaddingartasasupplementtomedicaltraining.Mostofthetimewearetaughtwhattolookforinmedicalcurriculabutnotnecessarily,howtolookforit.Engaginginvisual-artbasedexercisescancomplementmedicalstudentslearningofempathy,observationandinterpretation.Theexerciseofviewingandinterpretingart,pickingupsubtletiesinthedetailissomethingthatisnotunfamiliarinclinicalmedicineasobservationisacorecomponentinmedicaldecision-making.Whenitcomestoevaluatingtheimpactofusingthearts,investigationsrevealthatmanyhealth-carepractitionersreportednewawarenessorunderstandingaboutissuesfacedbytheirpatients12andplannedtoaltertheirclinicalpracticestobettermeetpatientneeds.13

Ihopethatcreativeengagementcanbeconsideredasacomplementarypartofthemultimodalapproachtocare,giventheinnatebenefitsofartisticexpressionandoutputcanhaveonself-management,supportingwellbeing.Artisrichlycomplexandpossibilitiesoflearningfromitareendless.Giventheopportunity,artcaninfluence,inspireandenablechange–individuallyandcollectively.

“I see the person beyond the illness

Where the illness ends, I begin…

Do you see me?”

Correspondenceto:shanaliperera@gmail.comhttps://www.changinglanes.me

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