Anorexiaand BulimiaintheFamily
OneParent’sPracticalGuidetoRecovery
Gra ´ inneSmith
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Smith,Gra ´ inne.
Anorexiaandbulimiainthefamily:oneparent’spracticalguidetorecovery/by Gra ´ inneSmith. p.cm.
Includesbibliographicalreferencesandindex. ISBN0-470-86161-4(paper)
1.Anorexianervosa–Popularworks.2.Bulimia–Popularworks. 3.Caregivers–Popularworks.I.Title. RC552.A5S632004
616.85 0 26–dc222003014729
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ISBN0-470-86161-4
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Abouttheauthor
Gra ´ inneSmith hasworkedforseveralyearsontheEating DisorderAssociationhelplineasavolunteer,puttingtogooduse hertrainingandexperienceasaformerSamaritan.Duringthat timeshehasspokentohundredsofcarersandsufferersaswellasto manyprofessionals.
Afoundermember,nowchairperson,ofNEEDSScotland (NorthEastEatingDisorderSupport)andamemberofthe MentalHealthgroupthatdevelopedtheScottishExecutive HealthDepartmentframeworkdocumentforeatingdisorders servicesinScotland,shehasalsotakenpartinMentalHealth andWellbeingSupportGroupvisitstohealthboardsand presentedapetitiononeatingdisorderstotheScottish Executive.Shecurrentlyworkstoraiseawarenessofhowpoor mentalhealthaffectswholefamilieswhilegoodmentalhealth underpinsphysicalwell-being.
Duringalongcareerinprimaryeducation,includingnine yearsasheadteacherofFyvieNurseryandPrimarySchool, Aberdeenshire,sheenjoyedworkingwithwholefamiliesand childrenagedfrom3to12.Asawriter,Gra ´ innehashadshort storiesandpoemspublishedinmagazinesandanthologies;while workingwithGrampianRegionshehelpedwriteandpresent coursesforteachersandheadteachers;shehasalsowrittenmany educationalmaterialsincludingco-ordinatingandcontributingto thepack‘‘FyvieCastle–ItsLifeandLegends’’.
Foreword
Iamdelightedtobeaskedtowritetheforewordtothisbookby Gra ´ inneSmith.Ithinkitisauniquecontribution,asitgivesvoice toaneglectedgroupinthemanagementofpeoplewitheating disorders(i.e.,carersorfamilymembers).Gra ´ innenotonly speaksfromherownpersonalexperience,shehasalsobeeninvolvedinrunningoneofthetelephonehelplinesfortheEating DisordersAssociation(EDA),andhasheardthedifficultiesand frustrationsofnumerousothercarers.Thisbookisshotwiththese heart-rendingaccounts.Thisinitselfisofgreatinterestandis invaluableasasourceofemotionalvalidation,comfortand supporttoothercarersandgivesanopportunityforthoseinvolved inthemanagementofeatingdisorderstoseetheothersideofthe drama,the‘‘NoisesOff’’.Therearealsosomepoignantdetailsof howprofessionalscanwoundandrendercarersguilty,frustrated, emotionallyparalysedandhelpless.
Thisbookoffersmuchmorethanavividdescriptionofa carer’sexperience.ItisperhapsGra ´ inne’sbackground,experience orpartofherpersonality,whichhasmeantshehasnotbeen contentwithexperiencingandunderstandingalone.Ratherher activeproblem-solvingmentalityhasgoneoutsearchingfor
answersandsolutions.Assuchshehasforgedforherselfapathway intotheroleofan‘‘expertcarer’’.
TheDepartmentofHealthrecommendstheintroductionof user-ledself-managementforchronicdiseaseinallareasofthe NHSby2007(DoH,2001).Theideaisthatmanypatients coulddeveloptheskillstobecomeexpertinmanagingtheirown disease.Anorexianervosaisachronicillness,andsowouldfallinto sucharemit.However,becauseofitsonsetduringadolescenceor youngadulthoodtheconceptofexpertcarerisprobablyasappropriateasthatofexpertpatient.Thisisparticularlysobecausewe knowthatpeoplewithaneatingdisorderthemselveshavemixed feelingsaboutrecovery.
Theevidenceonwhichtheconceptofan‘‘expertcarer’’was developedinStanford,CA.KateLorigledaresearchprogramme whichfoundthattrainingpeoplewhohavechronicillnessessuch asrheumatoidarthritisordiabetesinthemanagementoftheirown illnesses,sothattheybecomeexperts,increasesthequalityoflife andoveralloutcome.CurrentlyintheUKprojectsareunderway inmanic–depressivepsychosisanddiabetes.KateLorig’scourse, whichhasbeenusedacrosstheworld,hassixconsecutiveweekly trainingsessionseachof2.5hours.Thistrainingissupplemented withpatient-orientatedself-helpbooks.ThisbookbyGra ´ inne Smithisanexcellentcornerstoneforthedevelopmentofthis conceptwithineatingdisorders,asitprovidesanexcellentcarerledmanual.
OurexperiencefromhostingtheNationalCarersConferences forEatingDisordersjointlywiththeEatingDisordersAssociation isthatcarersaredesperateforknowledge,information,skillsand resourcestohelpthemmanagetheday-to-dayproblems,which ariseaspartoflivingwithsomeonewithaneatingdisorder.
Researchhasshownthatthelongerthedelaybetweenthe onsetoftheillnessandactivetreatmentthelesschancethereis ofagoodoutcome(Reasetal.,2000).Familymembersandother carersareintheprimepositiontoensurethatearlyinterventionis arealityratherthananoptimisticfantasy.Furthermore,families andcarerscanmaximizetheeffectivenessofalltreatments.Thus thisbookwillbeaninvaluablecontributiontoalltreatmentsfor eatingdisorders.Itcanservetotakethestingofguiltandblame fromthediagnosisandensurethattheprocessofrecoveringfrom
aneatingdisordertakesplaceinthecontextofacollaborativeeffort ofallthoseconcerned.
Professionalsworkingwithpeoplewitheatingdisordershave recognizedthatspecializedskillsandexpertiseareessentialfor workingwiththisclientgroup.Forexample,specializedforms ofpsychotherapy(Dareetal.,2001)andspecializedservices (Nielsenetal.,1998)areassociatedwithabetteroutcome.It followsthatcarersalsoneedspecialskills.
Gra ´ innehassucceededindistillingthespecificproblemsand solutionsthatcarersface.Therefore,Ihopethatthebookwill serveasasourceofinspirationforallothereatingdisorder carerstobecome‘‘experts’’.AlsoIhopethatitcanbreakdown someofthebarriersbetweenpatient,carerandprofessional.Itis alltooeasyfortheprofessionaltoplacehimorherselfonapedestal offeringwisdomandexpertiseandsuperiorintensivecareto rescuetheindividualfromhereatingdisorder.Toooftenthisis perceivedastakingoverwherecarershavefailedorevenstepping intorightthesupposedwrongsthatparentshavewrought.
AfterreadingthisaccountIhopethatprofessionalswill developasenseofrespectandhumility.Howmanyofuscould withstandsuchanonslaughtandrejectionofnurturance,thecore ofcare?
ProfessorJanetTreasure Guy’sHospital London 13October2002
Preface
Inautumn1993whenmydaughterfinallytoldmethatshehad beendiagnosedwithanorexianervosa‘‘withelementsofbulimia’’, IaskedmyGPwhatIcould/shouldbedoingtohelp.Thereply wasthatIknewasmuchastheGP ...
Asalifelongreader,Ithensetouttofindahelpfulbookby someonewhohadexperiencedtheillness.Isearchedthelocal libraryandbookshopsandthosewithindrivingdistance,butwas handicappedbynoteverhavingheardthephrase‘‘aneating disorder’’,andthereforedidnotconnectitwithmydaughter’s illness,thedramaticweightlossandpersonalitychanges.Ittook metwoyearstofindEatingDisorderAssociation(EDA)andlink upwhathadstartedasalocalinformationhelplinewithEDA.
ForseveralyearsIcontinuedmysearch,comingacrossall sortsofinteresting,sometimesdevastating,informationand opinions.Ifoundbooksbyprofessionalswhosewritingwas aboutpatientswhomtheysawonlyinclinicandhospital settings;someofthemwroteaboutfamilies.Ifoundoneortwo booksbycarerswhichtoldtheirownpersonalstory,butwereof littlepracticalhelpbeyondreassuringmethatotherpeoplehad beenthroughsimilarsituations.
In2000Iattendedthefirst-everEDACarers’Conferencein London,whichturnedouttobeamajorturningpoint.Sixmonths laterIvisitedfriendsinBostonandspentsometimeinbookshops againsearchingforthatelusivebook.Iwonderedwhatwas availableforfamiliescopingwithotherlife-affectingproblems. ItwasthereinBostonIfoundabookonhowtohelpan alcoholicwithouthurtingyourself(arevelation!),booksonliving withallsortsofotherseriousandchronicillnessesanddisorders. ButnotwhatIwaslookingfor ... AndatlastIrealizedthatIwas notgoingtofindwhatIwaslookingfor–apracticalbookby someonewhohadexperienceoflivingwithallaspectsofthe illness.
OverthelastthreeyearsIhavecollectedtogetherallIhave learned:fromreadingwidelyinanyandallareas,pluspersonaland workexperiencesthatIthoughtjustmightberelevantanduseful; fromlisteningtomanyotherfamilymemberstalkingabout commonproblemsineatingdisordersanddifficultiesincoping; andfromlisteningtoanddiscussionswithprofessionalswhofeel thatfamiliescanplayanimportantpartineithersupportingand maintainingtheillness–orhelpingmotivatesuffererstowardthe longroadtofightingagainsteatingdisorders.
IhopewhatIhavelearnedwillbeofpracticalusetofamilies andothercarers.
February2003
Acknowledgements
IwouldliketosaythankyoutoallthemanycarersIhavetalkedto overthelastfewyears,whohaveallowedmetoshareintheirlives andstories;totheAberdeenEatingDisorderService,whodo wondersonsmallresourcesandindifficultcircumstances;tothe MacduffMedicalPractice;toallmymanyfriends,whohave walkedalongsideonthelongroad.
SpecialthanksgotoJan,EdithandDouglasforunfailing, unquestioningsupportinthedarkestdays;toJanice,who answeredquestions,gavemeinformationandlistened;to Margaret,whogavemehope;toVivienWardandLesley ValerioatWiley,whohadfaith;toJanetTreasureandUlrike Schmidtfortheirinterestandencouragement;andtoIan McIlwain,whosaid,‘‘Getalife!’’AndIdid.
PartI
Healingisamatteroftime,butitissometimesalsoa matterofopportunity.
Hippocrates(460–400 bc)
Introductions
Beginning ...
Mylifewasopeningup,Ihadlotsoffriendsandanimproving sociallife,ajobthatgavealotofsatisfactionaswellashardwork, andIbegantoplanformyownfuture ... Workabroadfora children’scharity?Writefull-time?Movehouse?
IfeltI’dcomethroughsomeverytoughtimes(somedayifyou haveaspareweekorso,I’lltellyoumylifestory!),butmyhorizonswereexpanding,growingandIwaslookingforward ... then Anorexiacame,uninvited,tovisitmyhome.
Justafewyearsagoin1993Iwaslivingalone–mydaughter married,mysonworkinginGlasgow.At48,Iwasworkingfull timeatahigh-profile,high-energy,high-stressjob(primaryhead teacher).Havingbroughtupmykidsfromanearlyageonone teacher’ssalary,forthefirsttimeinmylifeIwasenjoying havingsomemoneyattheendofamonthandhadboughtone ortwoluxuries,totalunnecessaries,tryinghardtogetoverthe Scotsprudencethatsays Save.
Havingsurvivedvariousteenagetraumas,bothmychildren seemedhappywiththeirrespectivelifechoices.IfeltI’dputinto practicemystrongbeliefinteachingamixtureofrights,responsibilitiesandrespectforothers.Fromanearlyagetheywereboth
4Anorexiaandbulimiainthefamily
expectedtotakeresponsibilityinkeepingourhome,andtheirown roomsinparticular,reasonablycleanandtidy(ourviewsof ‘‘reasonablycleanandtidy’’oftendiffered–whichledtome keepingtheirbedroomdoorsshutratherthanlookatthe clutter!!).EachweekIlistedthechoresthathadtobedoneand askedwhichthey’dprefertodo ... intheirrushtoavoidtheones theyhated,theyvolunteeredfortheonestheyregardedabitmore favourably,atleasttakingacoupleofchoresoffmyshoulders. Despiteafewgrumbles,theysawthefairnessofhelpingaround thehouse,whichmadetheenvironmentbetterforallofus.From thetimetheycouldcount,theyhelpedsetthetableformealsand from12yearsonwardtheycookedaweekdaymealonceaweek.As theyalsogottochoosewhatthatmealwas,theyseemedhappyto learntocookatthesametimeasmakingavaluablecontributionto therunningofthehouse.(Especiallyatthebeginning,itdidmean thatsometimesweatesausagesandbeansrathermoreoftenthanI wouldhavepreferred ...)
TrainingourchildrentobeabletocopeintheBigBadWorld outthereisanimportantpartofbeingaparentaswellasloving them,andIthoughtI’ddoneanOKjobinbringingupmy children.OK.Notbrilliant–IcouldthinkofseveralthingsI felthadbeenmistakesalongtheway,butI’dalwayslovedthem, demonstratedthatloveoftenwithhugsandcuddlesaswellas bedtimestories,gamesandsoon,encouragedthemintheirindividualstrengths,triedtohelpthemwiththingstheyweren’tso goodat.Iftheydidtheirbestthatwasgoodenough.
Mysonseemedtogrowthroughtheteenageyearsashe haddoneeverythingelse,withgoodhumour(andanincreasein hisaccustomeduntidinessandlackoforganization),butmajor rowswithmydaughterhadbeenpartofthepictureatthatstage, asshestayedoutuntil3or4inthemorningandrefusedtoeven lookathomework,letalonedoit.Butthosedayswerenowpastand sheappearedhappyinhermarriageat19totheboyshe’dgoneout withsinceshewas13(thereasonshehadwantedtostayoutat night).Unfortunately,thatmarriage,somuchlookedforwardto, wasaveryunhappyexperienceandtwoyearslaterJayasked toreturnhome.Unknowntome,AnorexiaandBulimiaalso cametostay.
Atthattime,theywerejustwordsontheedgeofmyvocabu-
Introductions5
lary,Ihadneverheardthephrase‘‘aneatingdisorder’’,soIdid notrecognizeAnorexiaorBulimiawhentheyenteredmyhouse.I lookbackinincredulityatmycompleteignoranceandatthevery steeplearningcurveIfaced.Butthatignorancewas definitely bliss ...
Ifyouhavepickedupthisbookbecauseyouareacarerand havealsometAnorexiaandpossiblyBulimiatooinyourhome,I hopewhatIhavewrittenwillbehelpful–itisasummaryofwhatI havelearnedthehardwaysincefirstmeetingAnorexiaandherpal. Myheartandthoughtsarewithyouonthelongroad.
Ifyouareasufferer,Iknowyouwillrecognizethepainand miseryinflictedbytheillness,andhopeyoufindthehelpyouneed tofightofftheattentionsofAnorexiaandBulimia.
Ifyouareaprofessionalwhoworkswithpeoplewhodevelop eatingdisorders,Ihopeyouwillreaditwithcompassionforthe carerswhostruggletocope,aswellasforsuffererswholiveina dark,unhappyworld.
Andifsimplecuriosityhasmadeyoupickthisbookup,ifyou haveneverhadpersonalexperienceofthedevastatingeffectson familyandfriendsaswellasthosewhosufferfromanorexiaor bulimianervosa,bethankful,veryverythankful.Andperhapssay alittleprayerthatwhatevercausesanorexianervosa–despite hundredsofyearsofdebateandresearchnoonereallyknows–doesnotenteroraffectyourownfamily.
Firstintroductions ...
In1994whenmydaughteraskedifshecouldmovebackhome,I agreed–butmadeafewextrahouserulestogowiththosethathad appliedbeforeshemarried.Thenewrulesmainlyconcernedtelevision:Ipreferreading,musicorradio.Iamverychoosyabout programmesandwillhappilyspendwholeeveningswithout watchingit.IknewmydaughterlikedtheTVonasacompanion. Nomatterhowwellbehavedthechildren,workingasIdidina schoolmeantnoise–bells,voices,feet.Andconstantcommunication.Ihadenjoyedthesilenceafterworkduringmydaughter’s two-yearmarriage,sowhenshereturnedtoliveathomeIsaidthe
6Anorexiaandbulimiainthefamily
TVshouldnotgoonaftermyreturnfromworkuntilIfeltlikeit. Shebroughthomeasmallsetforherroom–andwegotalong muchbetterthanwedidinherteens!Havingbeenresponsiblefor organizingandrunningahousefortwoyearsJayhaddeveloped moreappreciationfortheworkinvolvedandshewasmuchhappier andmorewillingtodoashareofthehouseworkthansheeverhad beenbefore.Afterdiscussions,wesettledonasplitofchores. SincethenJayhasfaithfullyhooveredthemainroomsand cleanedthebathroom,takenherweeklyturns whatever elsewas happeninginlife,atwashingdishes(inourhouse,whoevercooks doesnotdodishes)andrecycling.
Shedecidedtodiet,havingputonabitofweightduringher marriage.Shetoldmethat,withherhusbandawayalotatwork, sheoftennibbledintheevening.Tomyeye,shedidn’tneedto, butJaywasn’thappywithherweightandfeltitwasimportantto beslimmer.LaterthatyearshemetanInterestingManwhofelt shewasanInterestingWoman.Therelationshipdeveloped rapidly,andatweekendsIrarelysawherasshewavedanairy cheerioanddisappearedwithIM.Obviouslyhappy,sheglowed asshelostweightandexercised.Shelosttheweightshewantedto, enjoyedalltheattentionandwasveryflatteredwhenshewasasked todosomemodelling.Averyattractiveyoungster,Jaynowlooked absolutelystunning.
Inspring1995Ibegantonoticethattheweightwasstillfalling offandJaywasexercisingevenmore.EacheveningIcouldhear theexercisebikegoinginherroomasshe‘‘cycled’’milesand miles,thenshedidhundredsofsit-ups.Neverakeenexerciser–walkingthedogisquiteenough!–Iwatchedherdedicationand staminawithamazement.
OverthenextfewmonthsIsuggestedseveraltimesthatthe dietinghadgonefarenough,shereallydidn’tneedtoloseany more.EachtimeIwasdismissedasfussing.Ineverneededto complainabouttheTVbeingon–butthedroneoftheexercise bikeintheever-longersessionswasaconstantirritation.WhenI complained,Igotaveryshortanswer.
Hindsightisawonderfulthing–theseareclassicsymptomsofearlyanorexia. Wouldthingshavebeendifferent, wouldthecourseoftheillnesshavebeenanyshorterortakena differentcoursehadIpreviouslymetAnorexia?I’llneverknow.
Anorexiamovesin ...
Insummer1995IlookedforwardtovisitingmysisterinFrance. Theticketswerebought,mysuitcasehalf-packed,whenJaytold methatIMhad‘‘finishedwithher’’.Therewerenoexplanations andIdidn’tliketopry,Jaywouldtellmeinherowntimeand whenshewasready,asshealwayshadinthepastoverwhatwas happeninginherlife.ButIcouldseehowveryunhappyshewas. JayassuredmeshewouldbefineinthefortnightIwasawayon holiday,nottoworry,shewouldbeworkingandthatwouldtake hermindoffthings.Ishouldgo,sheknewhowmuchIhadlooked forwardtoseeingmysister.AsIhuggedhergoodbyeattheairport Ithoughthowthinshelooked,thinratherthanslim ... ... andtwoweekslaterawalkingskeletonmetme.Ononeof therare,reallyhotdaysinNEScotland,Jaywasdressedincut-off shortsandabrieftopandpeoplewerestaringatheraswewalked tothecar.Ihaddifficultytakingmyeyesfromthehugejoints standingoutfromsticklegsasshechangedgear,therings slidingupanddownbonyfingersonthesteeringwheel.
Ithoughtshehadcancer.Whenmyfatherdiedmanyyears before,he’dbeenveryemaciated.
RememberingJay’spreviouscrossdismissalofmyconcerns,I hesitantlybroughtupmycontinuingworriesaboutherweight. Perhaps ,Isaid, perhapssheshouldgotothedoctor ...
I’vebeentothedoctor!He’sdonetestsandthere’snothing wrongwithme!
Perhapsthereareothertests
OhMum,dostopfussing!
Similarconversationstookplaceoverthenextweeks.Sitting acrossfrommeatthetable,Jayappearedtoeatnormally.We werebothoutworking,soIdidn’tknowexactlywhatsheate duringtheday–butIsawhermakingupagoodpackedlunch eachnight. Cancer whatelsecoulditbe?Cancercanrunin families, Iknewthat ... Cancer ... BynowIwassickwithworry anddread.Jay’sfacewasallbonewithskinstretchedtight,eyes darkandstaring,armsandlegslikesticks,herhipbonesstoodout
8Anorexiaandbulimiainthefamily
andclotheswerehangingoffher.Sheproudlytoldmeonenight thatinsteadofthesize12she’dwornatthetimeofherwedding, shewasnowasize6andcouldgetintochildren’sclothing.WhenI heldhernow,itwaslikeholdingasackofbones;Ibecameafraidto hugherproperlyforfearshewouldbreak.
Septemberbroughtavisitfrommyfriends,Williamand Jess.JesswaiteduntilJayhadgoneoutsidewithWilliamto smoke(anotherruleofthehouse!),thenaskedifJayhadseena doctor ... Jessrecognizedallthesigns,asshehadacolleaguewho sufferedfrom anorexia
Thefollowingweek,thephonerangwhileweweresittingat thetable.ItwasourGP,askingtospeaktoJay.Ihandedthephone overandreturnedtoeating.ThenIsawJay’sfacechange.Later thateveningshesaidshehadsomethingtotellme.Duringher marriageshehadbeguntohaveproblemswithfood,eatingoutof boredomandunhappiness.Herhusbandhadtoldher,among otherthings,thatshewasfatanduglyandthathe’dsleptwith otherwomen.Whenshefoundhimwithanothergirlwaswhen she’daskedifshecouldcomehome.Butherfoodproblemshad continued ... she’dstartedtodiet,thenfoundshecouldlose weightfasterifshegotridofanythingsheswallowed and nowshecouldn’tstop.
Thedoctorhadindeeddonetests,justasJayhadtoldme, everythinghecouldthinkofinfact.Eventually,hehaddiagnosed anorexianervosa,withelementsofbulimia.Onthephoneearlier thateveninghe’dtoldJaythatherpotassiumlevelwassolowthat, at23,shewasatseriousriskofaheartattack.Sittingholdingher thatevening,webothwept,Jaywithfearthatshemightdie.My ownfearofthesamewasmixedwithhelplessnessandhorroratmy ownblindness–howhadJaymanagedtogetridofallthefood she’deateninfrontofme?HowcouldIpossiblynothaveknown whatshewasdoing?ItwasonlywithhindsightthatIremembered thatJaywithherfondnessforalltheTVsoaps,leftthetableafter ourmealtogoupstairstoherroomtowatch. Iknowyoudon’tlike theprogrammeandyoudon’twanttheTVonjustnowanyway, do youMum?I’llwatchitupstairs
NowofcourseIknowthatbothAnorexiaandBulimia areverycleveratcoveringtheiractivities,andgiving plausiblereasonsforfrequentvisitstothebathroom.
Introductions9
Later,muchmuchlater,alongwaythroughthejourneywith thetwindemons,mydaughtertoldmethatduringmyholidayin Francewithmysister,shehadeatennothingatall.Nothing. Drinkingcoffeehadbeenheronlysustenance.Itwasonlywhen DrBrookersaidshewasputtingherlifeatriskbyhereating behaviour,thatshehadbeguntorealizethattheconditionwas serious.Andshemightdieifshecontinuedwiththebehaviour.
ButJaycouldn’tstop–AnorexiaandBulimiawerefirmlyin controlandthebehaviourwascompulsive.
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The Project Gutenberg eBook of Illustrations of Political Economy, Volume 8 (of 9)
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Title: Illustrations of Political Economy, Volume 8 (of 9)
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ILLUSTRATIONS OF POLITICAL ECONOMY.
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