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IllnessBehaviorandtheSickRole

Illnessbehaviorreferstothewayinwhichsymptomsareperceived,evaluated,andactedupon
byapersonwhorecognizessomepain,discomfortorothersignsoforganicmalfunction.Onthe
surface,itmayseemthatthenatureandseverityofanillnesswouldbethesoledeterminantsofan
individualsresponse,and,forverysevereillnesses,thisisoftentrue.Butmanypeoplefailtoseea
physicianorgoverylateinthediseaseprocessdespitethepresenceofserioussymptoms,andmany
otherpeopleseephysiciansroutinelyfortrivialorveryminorcomplaints.Thesepatternssuggestthat
illnessbehaviorisinfluencedbysocialandculturalfactorsinadditionto(andsometimesinsteadof)
physiologicalcondition.
STAGESOFILLNESSEXPERIENCE

EdwardSuchman(1965)devisedanorderlyapproachforstudyingillnessbehaviorwithhis
elaborationofthefivekeystagesofillnessexperience:(1)symptomexperience;(2)assumptionofthe
sickrole;(3)medicalcarecontact;(4)dependentpatientrole;and(5)recoveryandrehabilitation.Each
stageinvolvesmajordecisionsthatmustbemadebytheindividualthatdeterminewhetherthe
sequenceofstagescontinueortheprocessisdiscontinued.
STAGE1:SYMPTOMEXPERIENCE

Theillnessexperienceisinitiatedwhenanindividualfirstsensesthatsomethingiswronga
perceptionofpain,discomfort,generalunease,orsomedisruptioninbodilyfunctioning.Suchman
statesthatthreedistinctprocessesoccuratthistime:(1)thephysicalpainordiscomfort,(2)cognitive
recognitionthatphysicalsymptomsofanillnessarepresent,and(3)anemotionalresponseofconcern
aboutthesocialimplicationsoftheillness,includingapossibledisruptioninabilitytofunction.
AssessmentofSymptoms

DavidMechanic(1968)developedatheoryofhelpseekingbehaviortofacilitatean
understandingofthisassessmentprocessandhowindividualsactpriorto(orinsteadof)seekinga
healthcareprovider.Mechanictracestheextremevariationsinhowpeoplerespondtoillnessto
differencesinhowtheydefinetheillnesssituationandtodifferencesintheirabilitytocopewiththe
situation.Theprocessofdefinitionandtheabilitytocopearebothculturallyandsociallydetermined.
Asindividualsmaturethroughlifestages,theyaresocializedwithinfamiliesandwithincommunitiesto
respondtoillnessinparticularways.Partofthissocializationisobservinghowotherswithinthegroup
respondtoillnessandnotingthepositiveornegativereactiontheirbehaviorselicit.Sociologistsreferto
thisprocessasthesocialconstructionofillness.Mechanicidentifies10(sometimesoverlapping)factors
thatdeterminehowindividualsrespondtosymptomsofillness.
1. Thevisibility,recognizability,orperceptualsalienceofsymptoms.Manysymptomspresent
themselvesinastrikingfashion,suchasinthecaseofasharpabdominalpain,anintense
headache,andahighfever.Othersymptomshavesuchlittlevisibility(asintheearlystages
ofcancer)thattheyrequirespecialcheckupstobedetectedintheirearlystage.

2. Theperceivedseriousnessofsymptoms.Ifthesymptomisfamiliar,andtheperson
understandswhyhehasthesymptomandwhatitsprobablecoursewillbe,heislesslikely
toseekcarethanifthesymptomisunusual,strange,threatening,andunpredictable.
3. Theextenttowhichsymptomsdisruptfamily,work,andothersocialactivities.Symptoms
thataredisruptive,andwhichcauseinconvenience,socialdifficulties,pain,andannoyance
aremorelikelytobedefinedandrespondedtothanthosethatdono.
4. Thefrequencyoftheappearanceofsymptoms,theirpersistence,orfrequencyofrecurrence.
Themorepersistentlyillapersonfeels,otherfactorsremainingconstant,themorelikely
heistoseekhelp,andfrequentorpersistentsymptomsaremorelikelytoinfluencea
persontoseekhelpthanoccasionalrecurringsymptoms.
5. Thetolerancethresholdofthosewhoareexposedtoandevaluatethedeviantsignsand
symptoms.Anindividualstoleranceforpainanddiscomfortandhisvaluesaboutstoicism
andindependence,mayalsoaffecthowherespondstosymptomsandwhathedoesabout
them.Personsvaryagreatdealinhowmuchdiscomforttheyarewillingtotolerateandthe
attentiontheygivetobodilytroubles.
6. Availableinformation,knowledge,andculturalassumptionsandunderstandingsofthe
evaluator.Thesophisticationofpatientsaboutmedicalmattersvariesfromthosewhoare
awareofthelatesttherapeuticdevelopmentsevenbeforetheirdoctortothosewhocannot
identifythebasicbodyorgansandwhohaveonlyverynavenotionsofbodilyfunctioning.
Suchdifferencesinmedicalknowledgeandunderstandinghaveconsiderableinfluencein
howpeoplerecognize,define,andrespondtosymptoms.
7. Perceptualneedswhichleadtoautisticpsychologicalprocesses.Anxietyandfearmay
impactonsymptomrecognitionandthedecisiontoseekcareincomplexways.Anxiety
aboutillnessmaypromptquickercareseeking,butfearofparticulardiagnosesmaydelay
seekinghelp.
8. Needscompetingwithillnessresponse.Peopleassignvaryingprioritytohealth.While
illnesssymptomsmightbeacentralfocusforsome,familyandworkrelatedactivitiesare
moreimportanttoothers.
9. Competingpossibleinterpretationsthatcanbeassignedtothesymptomsoncetheyare
recognized.Peoplewhoworklonghoursexpecttobetired,andarethereforelesslikelyto
seetirednessasindicativeofanillness.Peoplewhodoheavyphysicalworkaremorelikely
toattributesuchsymptomsasbackachetothenatureoftheirlivesandworkratherthanto
anillnesscondition.
10. Availabilityoftreatmentresources,physicalproximity,andpsychologicalandmonetary
costsoftakingaction.Thecostoftreatment,convenienceoftreatment,andthecultural
andsocialaccessibilityoftheproviderallimpactonthecareseekingdecision.
ResearchonSymptomAssessment

Therearesignificantsocialandculturalinfluencesonthewaypeopleinterpretandrespondto
medicalsymptomssuchaspain.Forexample,variationsinresponsetopainarebasedondiffering

levelsofpaintolerancethatareculturallyprescribedindifferentwasforwomenthanformenorfor
membersofdifferentethnicgroups.

Zborowski(1969)foundthatProtestantsofBritishdescenttendedtorespondinamatterof
factwaytopain,whichenabledthemtoadapttoillnessmorequicklythanothergroups.Patientsof
Irishheritageoftenrepressedtheirsufferingandtendedtodenypain.BothJewishandItalianpatients
respondedtopainwithmoreopenemotionality;however,Jewishpatientswereprimarilyconcerned
aboutthelongtermconsequencesoftheirillnessandwerenotmuchcomfortedbytheadministration
ofpainkillingmedication,whileItalianpatientsweremoreorientedtothecurrentpainandwereat
leastsomewhatsatisfiedwhenthepainwasrelieved.

Otherresearchfocusingonperceivedpainingettingonesearspiercedalsofoundsignificant
ethnicdifferences.Testingbothmaleandfemalevolunteersbetweentheagesof15and25,Thomas
andRossfoundthatAfroWestIndiansreportedsignificantlylesspainthanAngloSaxons,whoreported
significantlylesspainthanAsiansallforthesameprocedure.

Whatcausesthesepatterns?Bothrolemodelingwithinfamiliesandsocialconditioningare
importantinfluences.Asonegrowsupinafamily,therearecountlessopportunitiestoobservereaction
topainandalarmexpressedbyfamilymembers.Childrensanxietyaboutreceivingpainfulmedical
treatmenthasbeenshowntobestronglycorrelatedwithparentalanxiety.

Inresponsetotheassessmentofsymptoms,theindividualmaydecidetodenythatthe
symptomsneedattention,delaymakingadecisionuntilsymptomsbecomemoreobvious,or
acknowledgethepresenceofanillness.Shouldanillnessbeadmitted,thepersonmayenterstage2
thesickrole.
STAGE2:ASSUMPTIONOFTHESICKROLE;ILLNESSASDEVIANCE

Iftheindividualacceptsthatthesymptomsareasignofillnessandaresufficientlyworrisome,
thenthetransitionismadetothesickrole,atwhichtimetheindividualbeginstorelinquishsomeorall
normalsocialroles.
BackgroundoftheSickRoleConcept

Thesickrole,oneofthemostfundamentalconceptsinmedicalsociology,wasfirstintroduced
byTalcottParsonsina1948journalarticlebutelaboratedinhis1951book,TheSocialSystem.Parsons
emphasizedthatillnessisnotsimplyabiologicalorpsychologicalcondition,anditisnotsimplyan
unstructuredstatefreeofsocialnormsandregulation.Whenoneisill,onedoesnotsimplyexitnormal
socialrolestoenteratypeofsocialvacuum;rather,onesubstitutesanewrolethesickroleforthe
relinquished,normalroles.Thesickroleis,alsoasocialrole,characterizedbycertainexemptions,
rights,andobligations,andshapedbythesociety,groups,andculturaltraditiontowhichthesickperson
belongs.

Parsonsviewedsicknessasatypeofdeviantbehaviorinthatitisaviolationofrole
expectations.Functionalisttheorists(likeParsons)areconcernedabouttheimpactofdeviantbehavior

uponsocietyandpartsofsociety.Sicknessisassessedasbeingdysfunctionalforthefamilybecause
whenonememberissickandrelinquishesnormalresponsibilities,othermembersarerequiredtopick
uptheslackandmaybecomeoverburdenedinsodoing.Inaddition,sicknessisdysfunctionalfor
society.Theequilibriumthatsocietymaintainscanbedisruptedwhenindividualmembers,dueto
sickness,failtofulfillroutineresponsibilities.Thelureofsicknesstheattractionofescaping
responsibilitiesrequiressocietytoexercisesomecontroloverthesickpersonandthesickroletothat
disruptionisminimized.

Sicknessisacknowledgedtobeaspecialformofdeviantbehavior;however,itisnotequivalent
tootherformsofdeviancesuchascrime.Institutions(lawandmedicine)arecreatedinsocietytodeal
withbothbehaviors,butwhilecriminalsarepunished,thesickareprovidedwiththerapeuticcareso
thattheybecomewellandreturntotheirnormalroles.

Withinthecontextofsocialcontrolresponsibilitiesofmedicine,societyallowstwoexplicit
behavioralexemptionsforthesickpersonbutalsoimposestwoexplicitbehavioralrequirements.The
exemptionsare
1. Thesickpersonistemporarilyexcusedfromnormalsocialroles.Dependingonthenature
andseverityoftheillness,aphysiciancanlegitimizethesickrolestatusandpermitthe
patienttoforgonormalresponsibilities.Thephysiciansendorsementisrequiredsothat
societycanmaintainsomecontrolandpreventpeoplefromlingeringinthesickrole.
2. Thesickpersonisnotheldresponsiblefortheillness.Societyacceptsthatcurewillrequire
morethanthebesteffortsofthepatientandpermitsthepatienttobetakencareofby
healthcareprofessionalsandothers.
Inordertobegrantedtheseroleexemptions,however,thepatientmustbewillingtoacceptthe
followingtwoobligations:
1. Thesickpersonmustwanttogetwell.Theprevioustwoelementsofthelegitimizedsick
roleareconditionalonthisrequirement.Thepatientmustnotgetsoaccustomedtothe
sickroleorenjoytheliftingofresponsibilitiesthatmotivationtogetwellissurrendered.
2. Thesickpersonisexpectedtoseekmedicaladviceandcooperatewithmedicalexperts.
Thisrequirementintroducesanothermeansofsocialcontrol.Thepatientwhorefusesto
seeahealthcareprofessionalcreatesasuspicionthattheillnessisnotlegitimate.Sucha
refusalinevitablyreducesthepatienceandsympathyofsocietyandthosesurroundingthe
patient.

CriticismsoftheSickRole

Sociologiststodayaredividedonthesickrolescurrentvalueasanexplanatoryconcept.The
fourmaincriticismsarebrieflydescribedbelow:
1. Thesickroledoesnotaccountfortheconsiderablevariabilityinbehavioramongsick
persons.Variationoccursnotonlybyage,gender,andethnicity,butalsobythecertainty
andseverityofprognosis.
2. Thesickroleisapplicableindescribingpatientexperiencewithacuteillnessonlyandisless
appropriateisdescribingpersonswithchronicillnesseswhomaynothaveeasily
recognizablesymptomsandmaynotgetwellnomatterhowmuchtheywanttoandhow
faithfultheyareinfollowingthephysiciansinstructions.
3. Thesickroledoesnotadequatelyaccountforthevarietyofsettingsinwhichphysiciansand
patientsinteract;itismostapplicabletoaphysicianpatientrelationshipthatoccursinthe
physiciansoffice.
4. Thesickroleismoreapplicabletomiddleclasspatientsandmiddleclassvaluesthanitisfor
personsinlowersocioeconomicgroups.Noteveryonecanfollowthispathway;for
example,lowerincomepersonshavelessfreedomtocurtailtheirnormalresponsibilities,
especiallytheirjobs,andthushaveamoredifficulttimecomplyingwiththemodel.
TheMedicalizationofDeviance

WhileParsonsdescribedtheroleofmedicineasaninstrumentofsocialcontrol,manybelieve
thatthepowersofthemedicalinstitutionhavenowexpandedfarbeyondareasofgenuineexpertise.
Thishasledtoamedicalizationofdeviance,aconceptthathastwoprimarymeanings.First,an
increasingnumberofbehaviorsandconditionsarebeinginterpretedinmedicalterms,givingthe
medicalprofessionincreasedpowersindeterminingwhatisnormalanddesirablebehavior;andsecond,
medicalpracticeisunderstoodtobethepropermechanismforcontrolling,modifying,andeliminating
theseundesirabledeviantbehaviors.Bringingbehaviorssuchasalcoholism,drugaddiction,
compulsiveovereating,andcompulsivegamblingunderamedicalrubricintroducesaqualityof
therapeuticmercyintothewaytheyarehandled.
Demedicalization

Concernthatthemedicalprofessionspowersofsocialcontrolhavebecometooextensive,a
countermovementtowarddemedicalizationisnowunderway.Itincludessuchelementsasthe
removalofcertainbehaviors(e.g.,homosexuality)formtheAPAslistofmentaldisordersandthe
deinsititutionalizationofmentalhealthpatients(mentalpatientswhocansurviveontheoutsideandare
notdangerousaremainstreamedintosociety.Ironically,bothmedicalizationanddemedicalizationare
occurringsimultaneouslyinsociety.

SymbolicInteractionism:TheLabelingApproachtoIllness

Whereasthebiomedicalapproachassumesillnesstobeanobjectivestate,labelingtheory
viewsthedefinitionofillnesstobeasubjectivematterworkedoutinparticularculturalcontextsand
withinparticularphysicianpatientencounters.

Everysocietyhasitsownparticularnormsforidentifyingthebehaviorsandconditionsthatare
definedandtreatedasillnesses.Theseillnessdefinitionsarenotobjectiveandarenotpermanently
fixedinatleasttwoimportantways.First,thedefinitionsdifferfromculturetocultureandchangeover
timewithincultures.IntheUnitedStates,alcoholismwasonceconsideredtobeavoluntary,criminal
act;itisnowconsideredtobeamedicallytreatableillness.Ontheotherhand,homosexualityusedto
beconsideredtobealifestylechoice.

Second,implicationsoftheillnesslabelareinfluencedbysocialposition.Manypeoplemightbe
consideredmentallyillforengaginginthesamekindsofbehaviorsforwhichcollegeprofessorsare
labeledeccentric.Cocaineaddicts,alcoholics,andpeoplewhoabuseprescriptiondrugsareall
medicallydefinedindifferentwayseventhoughallmaybeexperiencingchemicalsubstanceabuse.The
stigma(orlackofit)iscertainlyinfluencedbytheindividualssocialstanding.

Applicationoftheillnesslabelisespeciallyimportantbecauseoftheinfluencelabelshaveon
howapersonistreated.Individualswhohavereceivedmentalhealthcaremayalwaysbeviewed
somewhatdifferentlythanpeoplewhohavenotreceivedsuchcare,evenaftertreatmentendsand
mentalhealthrestored.Likewise,someonewhoisdiagnosedwithcancermayforeverafterbe
consideredfragileevenifthecancerissuccessfullycombated.
STAGE3:MEDICALCARECONTACT/SELFCARE

WhenSuchmansstagesofillnessexperiencewasdevisedinthemid1960s,thethirdstage
waslabeledasmedicalcarecontactanddescribedasthepointatwhichanindividualsought
professionalmedicalcare.Today,medicalsociologistsaremuchmoreawareofthevarietyofoptions
availabletopersonswhohaveenteredthesickrole,theincreasinglycommonpracticeofselfcare,and
theimportanceoftheindividualssocialandculturalenvironmentinshapingtheactiontaken.
TheDecisiontoSeekProfessionalCare

Inthepreviouschapter,weemphasizedbothmacro(socialstructural)andmicro(individual
decisionmaking)factorsasinfluencesonparticipationinhealthbehaviors.Bothfactorsarealso
importantinfluencesonthedecisionaboutseekingprofessionalmedicalcare.RonaldAndersonandLu
AnnAday,whohavehelpedtoguidesociologicalthinkingabouttheuseofmedicalservices,developed
aframeworkforexaminingaccesstocarethatincludesbothstructuralandindividualfactors.

Theypositthataccesstocarecanbestbeunderstoodbyconsidering(1)thegeneralphysical,
political,andeconomicenvironment,(2)characteristicsofthehealthcaresystem,includinghealthcare
policyandtheorganizationandavailabilityofservices,and(3)characteristicsofthepopulation,
includingthatthatmaypredisposeonetouseservices(age,gender,attitudesabouthealthcare);those

thatenableonetousehealthservices(incomeandhealthinsurancecoverage);andtheneedforhealth
services.

Concentratingmoreontheindividuallevel,DiMatteoandFriedmanhavespecifiedthreefactors
thatinfluencethedecisiontoseekcare:
1. Thebackgroundofthepatient.Propensitytoseeaphysicianisinfluencedbysuchfactors
asage,gender,raceandethnicity,andsocialclass.Forexample,menoftenaremore
reluctanttoseeaphysician,andmanymarriedmenscheduleanappointmentonlywhen
pressuredbytheirwivestodoso(estimatesarethatwomenmake70percentofallhealth
caredecisions).Many(especiallyolder)menprefertotoughitoutandareembarrassed
todiscusssuchmattersassexualdysfunction,prostateenlargement,anddepression.
2. Thepatientsperceptionoftheillness.Zola(1973)identifiedfivesocialtriggersthat
influencethejudgmentthatthesymptomsneedprofessionalhealthcare:(a)perceived
interferencewithvocationalorphysicalactivity,especiallyworkrelatedactivity;(b)
perceivedinterferencewithsocialorpersonalrelations;(c)aninterpersonalcrisis;(d)a
temporalizingofsymptomatology(settingadeadlineifImnotbetterbyMonday,Illcall
thedoctor);and(e)pressurefromfamilyandfriends.
3. Thesocialsituation.Evenforpainthatmayrelatetoaseriouscondition,situationalfactors
matter.Symptomsthatbeginduringtheweek,ratherthanontheweekend,aremorelikely
tomotivatepromptcontactwithaphysician,asdosymptomsthatappearatworkand
symptomsthatappearwhenotherpeoplearepresent.
TheConceptofSelfCare

Selfcaredescribesthebroadrangeofbehaviorsinitiatedbyindividualstopromoteoptimal
health,preventillness,detectsymptomsofillhealth,healacuteillness,andmanagechronicconditions.
Itincludesobtaininginformationabouthealthandillness,doingselfscreeningexams,managingones
ownillness,includingselfmedication,andformulatingcleargoalsandpreferencesregardingendoflife
treatmentdecisions.Althoughthetermselfcareimpliesanindividualbehavior,thesepracticesoccur
withinasocialnetworkandareverymuchinfluencedbyfamily,friends,andculturalnorms.

Howeveritisdefined,itisclearthatselfcarepracticesareanextremelycommonandroutine
responsetoillnesssymptomsandarepracticesthatarepervasivethroughoutthepopulation.Selfcare
iscertainlynotanewconcept.Sincetheearliestcivilizations,peoplehavetakenpersonalmeasuresto
protecttheirsafetyandwellbeingandtodealwithillnesses.However,theadventofscientificmedicine
shiftedprimaryresponsibilityformanaginghealthandillnessfromtheindividualandfamilytothe
physician.Now,thereisarenewedinterestamongboththegeneralpublicandmanyhealthcare
professionalinshiftingtheoverallmanagementofhealthcarefromtheprofessionalbacktothe
individual.

TheSelfHelpMovement.Inthe1960sand1970s,aselfhelpmovementpromotingpersonal
involvementandresponsibilityinhealthemergedintheUnitedStates.Itwaspartofalargercultural
critiqueofauthorityandexpertiseandapartialcontradictiontotheprevailingvalueattachedto
professionalism.Sincethattime,personalinitiativetowardhealthandthemanagementofillnesshas
continuedtogrowasaresultofseveralfactors.
1. Anexpansionofalternativemedicalphilosophiesandclinicalapproachesthatplaceprimary
responsibilityforhealthontheindividualratherthanontheprofessional.Theseinclude
behavioralapproaches,conceptsofholistichealth,andtherapiesderivedfromEastern
philosophies(e.g.,yoga,meditation).
2. Ashealthcarecostshavecontinuedtoclimb,therehasbeenanincreasedinterestin
potentialsavingsfrommorevigoroushealthpromotionanddiseasepreventionefforts.
Studiesindicatethatpersonswhouseselfcarepracticesreduceboththenumberofvisits
tophysiciansandthenumberofdaysinthehospital,andthatcommonplaceuseofself
selected,overthecounterdrugssavesthenationmillionsofdollarseachyearinphysicians
fees.
3. Increasedrecognitionthatadvancesinhealthstatusandlifeexpectancywillcomemore
fromchangesinpersonalpatternsoflifestylethanfromadditionaltechnologicalorscientific
advancesinmedicine.
4. Encouragementfromthewomensmovementforwomentoreevaluatethequalityofcare
receivedinamaledominatedhealthcaresystem.
SelfHelpGroups.Inrecentyears,therehasbeentremendousgrowthinthenumberofselfhelp
groupsgroupsofindividualswhoexperienceacommonproblem,whosharetheirpersonalstories
andknowledgetohelponeanothercopewiththeirsituation,andwhosimultaneouslyhelpandare
helped.Anestimated10millionpersonsannuallyparticipateinthenationsselfhelpgroups.Groups
havebeenorganizedaroundalmosteveryconceivabledisease,addiction,anddisability.
STAGE4:DEPENDENTPATIENTROLEANDSTAGE5:RECOVERYANDREHABILITATION

Withtheonsetofthedependentpatientrole,thepatientisexpectedtomakeeveryeffortto
getwell.Somepeople,ofcourse,enjoythebenefitsofthisrole(e.g.,increasedattentionandescapefor
workresponsibilities)andattempttomalinger.Eventually,however,theacutepatientwilleitherget
wellandmoveontostage5orterminatethetreatment(andperhapsseekalternativetreatment).

Theseverityoftheillness(andwhetherisitacuteorchronic),culturallyinfluencedreactionsto
illness,theindividualscopingability,andthenatureandextentofsocialsupportcoalescetodetermine
theimpactoftheillnessonthedependentpatient.Formanyindividuals,spiritualbeliefsandthe
supportsystemofferedbyareligiousgroupareamongthemostimportantmechanismsusedtodeal
withillnessandwiththeconcernsandfearsthatitcancreate.Illnessesmaybeinterpretedinlightofa

spiritualbeliefsystem,painanddiscomfortmaybeacceptedasanopportunitytodemonstrateones
faith,andstrengthmaybegainedbyonesconfidenceinthebenevolenceofahigherbeing.

Thefollowinglistidentifiesthemajorconcernspeoplehaveduringstage4:
1. Impairmentsofpersonalcognitivefunctioning.Patientsmaybeconcernedthat
theirillnesswillprogresstoapointthattheircognitivefunctioningabilitymaybe
impairedorthatmedicationswillhaveadullingeffectonmemory,reasoningability,
andcapacityforcommunication.
2. Lossofpersonalindependence.Manypeopledeeplyvaluetheirindependenceand
appreciateitevenmorewhenitisthreatened.Relianceonothersmaybea
devastatingthoughtbecauseoftheinconvenienceand,inalargersense,theidea
ofbecomingaburdenonothers.
3. Changesinbodyimage.Forpatientswhoseillnesscreatesanydramaticalteration
inphysicalimage,amajorreadjustmentmaybeneeded.Manypeoplethemselves
asphysicalasmuchasormorethanmentalbeings;anychangeinbodyimageis
significant.
4. Withdrawalfromkeysocialroles.Becausesomanypeoplederivetheiridentity
fromtheirwork/occupation,anydisruptioninworkpatternorwork
accomplishmentisverythreatening.Ifremunerationisaffected,anextraemotional
burdeniscreated.Thewithdrawalfromkeyfamilyresponsibilitiesmaybeof
paramountconcern,alongwithanxietyaboutcreatingmoreworkforotherfamily
members.Thiswithdrawalandconcernaboutitcanjeopardizecohesiveness.
5. Thefuture.Anychronicorseriousacuteconditioncreatesquestionsaboutthe
patientsfutureandtheextenttowhichtherewillbefurtherincapacitationor
physicalormentallimitation,questionsaboutfinancialindebtedness,andquestions
aboutpermanentlossesindailyactivities.

LivingwithChronicIllnessandDisability

Thesepressurepointsareintensifiedforchronicpatientswhotypicallymustgetaccustomedto
severalsignificantchangesinlifestyleandinteraction,prolongedregimensofmedication,continuing
bureaucratichassleswiththemedicalcaresystem,andsometimesdisablingpain.

Basedonmorethan100interviewswith55persons,KathyCharmaz(1991)hasdescribedhow
experiencingaprogressivelydeterioratingchronicillnesscanreshapeapersonslifeandsenseofself.
Peopleexperiencechronicillnessinthreeways:asaninterruptioninlife,asanintrusiveillness,andas
animmersioninillness.

Atfirst,apersonwithachronicillnessmaynoticethedisruptioninlife.Thereistimespent
hopingforthebestandtryingtoconvinceoneselfthatthingswillworkout.Difficulttimeslowerhopes

andincreasefearsthatimportantlifeeventswillneedtobesacrificed.Abargainingprocessmayoccur
whenthepersonpromisestodowhatevercanbedonetofeelbetter.Notfullycomprehending
chronicity,illpersonsseekrecovery,and,indoingso,maintainthesameimageofselfandkeepthe
illnessexternal,notallowingittobecomeanessentialpartofonesbeing.Onlythroughtimeand
throughthewordsandactionsofothersdothemeaningsofdisability,dysfunction,andimpairment
becomereal.

Chronicillnessbecomesintrusivewhenitdemandscontinuousattention,moreandmoretime,
andsignificantaccommodations.Intrusionhappenswhentheillnessisrecognizedasapermanentpart
oflifewhensymptomsandtreatmentsareexpectedandplannedaround.Theillpersonlosessome
controloverlifebutmayworktomaintainsomecontrolandtoboostselfesteem.Limitsmaybeplaced
ontheillnessforexample,allowingoneselfacertainnumberofbaddays.Effortsaremadeto
preventtheillnessfromoccupyingmoreandmoreofonestimeandbeing.

Immersionoccursastheillnessbeginstodominatelife.Responsibilitiesaresurrendered,and
daysaredominatedbydealingwiththeillness.Nolongercanpeopleaddillnesstothestructureof
theirlives;instead,theymustreconstructtheirlivesuponillness.Theyfacephysicalandmaybesocial
andeconomicdependency;theirsocialworldsshrink;moreandmoreofeachdayisorderedbythe
routinesdemandedbytheillness.Peopleturninward,becomemoresociallyisolated,andbegin
challengingtheirownidentity(HowcanIcontinuetobemyselfwhilehavingthisillness?).
RecoveryandRehabilitation

ThefinalstageofSuchmansschemavariesdependingonthetypeofillness.Foracutepatients,
theprocessisoneofrelinquishingthesickroleandmovingbacktonormalroleobligations.Forchronic
patients,theextenttowhichpriorroleobligationsmayberesumedrangesfromthosewhoforsakethe
sickroletothosewhowillneverbeabletoleaveit.