cf adults booklet (web)

8/8/2019 CF Adults Booklet (Web)

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Living with a

Disgurementmanaging the challenge


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Disgurement can affect

anyone, at any time, at any

age, from any ethnic group. Some people are born with

medical conditions that cause disgurement. Others

might acquire their disgurement in childhood or later

in life, perhaps through trauma or injury.

There are over 1.3 million people who have signicant

disgurements to their face and body in the UK thats

one in 45.

540,000 people have a signicant facial disgurement

one in 111.

l92,000: congenital/birth conditions like birthmarks,

cleft lips/palates

l66,000: accidents such as burns and facial scars

l40,000: cancer-related disgurements, from surgery

for skin cancer

l25,000: disgurements to or around

the eye

l100,000: facial paralysis including from stroke

l220,000: skin conditions like psoriasis, vitiligo

and acne.

In a year, 415,000 people in the UK are born with or

acquire a disguring condition to their face, hands or

body, some of which will be temporary.

It is difcult to dene a disgurement precisely and

some people do not like to be thought of as having one.

Disgurement is in the eye of the beholder and the

person themselves. It is well-recognised in psychological

research literature that the extent or severity of

a disgurement is not linked with the amount of

distress it causes. What may appear to be a minor

disgurement, especially if it appears on what is called

the communications triangle on the human face that

is, the area that includes the eyes, nose and mouth

where people focus their gaze and attention can

be the cause of considerable self-esteem and self-

condence problems. People who have disgurementson their body hidden by clothing can also experience

such difculties.

Whilst medical and surgical interventions can help to

make a disgurement less noticeable, this depends on

the nature of your condition and it is rarely possible to

remove it completely.Having a good understanding of common issues

associated with disgurement and nding ways to

feel good about yourself and manage other peoples

reactions to your appearance can help you to manage

the challenges of disgurement successfully.

This booklet is designed to

lgive you an overview of some of the common

experiences and challenges faced by men and women

who have a disgurement

lhelp you to increase your understanding and

awareness of the issues and personal challenges

associated with disgurement

lallow you to consider your options in managing these

challenges

loffer some strategies that you can use.

For more detailed guides and fact-sheets on specic

issues please contact Changing Faces or go to ourwebsite:

www.changingfaces.org.uk

Why this booklet?


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Living with aDisgurement

managing the challenge

Harriet Griffey & Bernadette Castle

AChangingFacesPublication


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Living with a disgurement

managing the challenge

A note on the language

Theworddisgurementisusedinthis

booklettodescribetheaestheticeffects

ofamark,scar,asymmetryorparalysis

tothefaceorbody.Changing Facesuses

thewordasanoun,(forexample,achild

whohasadisgurement),butavoidsitsuseasanadjective,(forexample,not

adisguredchildbutachildwith/who

hasadisgurement;notadisgured

facebutinstead,afacialdisgurement).

Werecognisethattheword

disgurementisnotparticularly

positiveandsomepeoplemaynotwant

touseittodescribetheirconditionorappearance,preferringotherwordslike

visibledifference,unusualappearance

ortheactualnameoftheircondition.

Thesewordsareusedonoccasion.

Changing Facesencouragesthereal

causeofapersonsdisgurementto

bespelledout,(forexample,aperson

with/whohasacleftlip,BellsPalsy,burn

injuries,cancer,acne,etc.)becausethis

isaninformativewayofdescribinga

personsmedicalcondition.

Thecharitycontinuestousetheword

disgurementasitisasuccinct,generic

termwidelyunderstoodbythegeneral

publicandenshrinedinBritishlawintheDisabilityDiscriminationAct(DDA)1995,

whichlegallyprotectspeoplewhohave

disgurementsagainstdiscrimination.


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1. The challenge of living with a disgurement

1 Unwanted attention

Havingavisibledisgurementcanattractunwantedattention,

suchasstaring,double-takes,unsolicitedcomments,andeven

discriminationorabuse.Thiscanleaveyoufeelingangryand

depressedwhichinturncaninuenceyoursocialencounters

andimpactonyourrelationships,yoursenseofyouridentityand

onyourself-condence.

Forthemostpart,otherpeoplesreactionsarebasedonhumancuriosityanduncertainty.Noteveryonewillhavemetsomeone

withyourconditionordisgurementbefore,andassocialbeings,

weseektounderstandourenvironmentsandthepeoplewho

livewithinthem.

Takingtheattitudethatpeopledonotmeantobeunkindcan

bemorehelpfulthanassumingpeoplearealwaysgoingtobe

hostileandgivesyoumoreenergytobeabletodealwithother

peoplesreactions.Itcanhelptothinkaboutoccasionswhenyoumighthavebeenshockedorsurprisedbysomeoneelses

appearanceandperhapsyoutoobehavedinacuriousmanner.

Thatisnottosaythatsomepeoplearentthoughtlessbystaring

excessively,movingawayorsayingsomethinginappropriate

andafewwillbeveryunkind.Atthesetimes,thereareavariety

ofcopingstrategiesthatyoucandrawon.Theseincludending

waystosootheyourselfandseekingthesupportofothers.Ourbooklet,Handling Other Peoples Reactionsgivesyoumore

informationaboutwhathappenswhenotherpeoplemeet

someonewithadisgurementforthersttimeandviceversa.

2 Body image

Intodayssocietyweareexposedtomanyimagesandmessages

whichlinkgoodlookstosuccessoremphasisephysicalperfection.Thesecanaffectourbodyimage.Bybodyimage,

wemeantheinternalimagethatwehaveaboutourphysical

appearanceasopposedtootherpeoplesviewofus.Itis

importanttomakethisdistinctionbecause,whilstotherpeoples

opinionsmatterandourviewofourselvesislargelyinformed

byotherpeople,itisourownperceptionofourselfthatreally

matterstohowweexperiencetheworld.

Maintainingapositivebodyimageisharderifyouhaveencounterednegativereactionstoyourdisgurement,suchas

teasingorbullying.Thismayhaveledyoutobelievethatyour

appearanceisunacceptable,orevensomethingofwhichto

beashamed.

Challengingsuchbeliefstakestimeandeffort,anditmayhelp

totalktoaprofessionalcounsellororpsychologistaboutsuch

experiences.Itcanalsohelptoconsiderhowyourbeliefsaround

yourappearancewereformed.Thisisdiscussedfurtheronpageeleven.

Attractivenessandbeautyaresociallyconstructedideals

thathaveevolvedovertimeandareinuencedbyavarietyof

factors.Intodayssociety,ourfascinationwithcelebrityand

physicalperfectionhasaconsiderableeffectonnarrowingour

denitionsofwhatisconsideredbeautifulandattractive.

Youhaveachoiceabouthowmuchtocomplywithsuch

denitionsandthemythsassociatedwiththem.Embracingamoreroundedandrealisticperspectiveofattractivenessand

workingpositivelytoenhanceyourownbodyimage,canbevery

empowering.Althoughwerarelyseepeoplewithdisgurements

People might be curious, or justuncomfortable, or unsure. We live in aworld where people feel easier beingsimilar. People dont know how theyre

supposed to react to people who look a bitdifferent they might just beuninformed or ill-equipped.


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inadvertsrelatingtofashionandbeauty,thisdoesntmeanyou

cantenjoyclothes,accessoriesandmake-up.

Forsomepeople,itcanbehelpfultotakeamorecounter-cultural

viewtoappearanceandresearchingliteraturethatenablesyou

todothatcanbehelpful.

Itisimportanttoknowthattakingsuchaviewmaymeangoing

againstthestrongly-heldviewofothers.Onlyyoucanmakethedecisionabouthowfaryouwanttogo.However,thebasisfor

suchdecisionsistoenableyoutolivemorepositivelywithyour

disgurementratherthanrelyingonotherpeoplesdenitions.

3 Your self-esteem and sense of identity

Ourself-esteemreferstohowwethinkandfeelaboutourselves

andiscloselylinkedtooursenseofidentity.Doyoufeelgoodaboutyourself?Yourachievements?Howyoulook?

Ouridentitiesaremadeupoflotsofdifferentparts,andinclude

ourinternalcharacteristics(forexampleintelligence,morals,

beliefs,senseofhumour,etc.)andexternalqualities(forexample

physicalbody,abilities,style,stature,etc.)

Oursenseofidentityisinformedbyourearliestrelationships

andevolvesasitisinuencedbyourinteractionswithothers

andourlifeexperiences.Ifyoufeltlovedandvaluedandacceptedinyourlife,youwilltendtohavepositiveself-

esteemandagoodsenseofyouridentity.If,however,you

havefeltunaccepted,rejected,orlessvaluablethiscanhave

anegativeeffectonyoursenseofselfandyoumaystruggle

withlowself-esteem.

Ifyouhaveadisgurement,yourself-esteemcanbeinformedbyvariousfactorssuchaswhenyouacquiredyourdisgurementor

whetheryouseeyourdisgurementassomethingwhichdenes

youorasonlyonepartofyourexperience.

Ifyouwerebornwithadisgurementoracquiredonevery

earlyinyourlife,howpeoplereactedtoortalkedaboutyour

disgurementwillhavehadaninuenceonhowyounowthink

andfeelaboutitandonhowmuchitformsyoursense

ofidentity.

Ifyourappearancewastalkedaboutopenlyandhonestlyand

youlearnedwaystomanageotherpeoplesreactions,youwill

hopefullyfeelcomfortableandevenverypositiveaboutyour

appearanceandaboutyourselfingeneral.If,ontheotherhand,

youencounteredteasingordiscriminationanddidnothavethe

supporttomanagethese,youmayfeelnegativelyaboutyour

appearanceandhavelowself-esteem.

Ifyouacquiredyourdisgurementlaterinlifewhetherthrough

accidentordisease,youwillalreadyhavedevelopedasense

ofyouridentitybasedonhowyoufeltaboutyourprevious

appearance.Youwillundergoaperiodoflossforyourold

appearanceandreadjustmenttoyournewappearance.

Ourfaces,likeourvoicesandourotherqualities,arelinkedto

ouridentity.Ifoneormoreofthesequalitieschange,theloss

experiencedandadjustmentrequiredcanbeconsiderable.Ifyourappearancehasalwaysbeenessentialtoyourself-esteem

and/oryouhavebeenadmiredgreatlyforyourlooks,acquiring

adisgurementcanbringaboutacrisisofidentity.Thisneeds

carefulexplorationandreviewbyatrainedcounselloror

psychologist.

4 The experience of loss or bereavementTheexperienceoflosscomesinmanyformsthedeathof

someoneclosetoyou,thelossofsomethingyouvalue,suchasa

joboryourhome,orthelossofyourhealthoryourlooks.

I had to reject the negative cultural valuesplaced on scars I had to becomecounter-cultural.


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Hannah has a haemangioma. Sheis four years old and wants to be

ballet dancer when she is older.

PhotocourtesyofPiersAllardyce


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Acquiring a disgurement

Ifyouacquireadisgurement,youwillfeelthelossofyour

previousappearanceandarelikelytoundergoaprocessthatcanfeelverysimilartobereavement.Youmayencounterfeelings

suchasshock,denial,angeranddepression.Recognisingthese

feelingsasanormalprocessandnotapermanentstateofaffairs

canhelpyoutoadjust.

Aswellasthelossofyourappearanceyoumayneedtodealwith

otherassociatedlosses.Thesemaybethelossoffunctionand/or

generalhealth,andinsomecases,thelossofemployment.You

mightalsofacechangesinrelationshipsasfamilyandfriendsadjusttochangesinyou.

Itiscommonforpeopletobeshockedbytheirnewimage

whentheyseethemselvesforthersttime,andforsometime

after.Yourexternalappearanceistemporarilyatoddswith

yourinternalself-view,andyoumightndithardtobelieve

thatyouwilleverfeelokayaboutyournewlooks.Thisiswhere

thegrievingprocessplaysitsrole,asyourmindassistsyouto

adjustslowlyuntileventuallyyoureachatimewhenyouhaveintegratedyournewimagewithyouroldself.Itsquitenormal

forthistotakeanumberofyears,andsomepeoplendit

helpfultotalkwithacounsellorabouttheirexperiencetoassist

thisprocess.

Dependingonhowyouacquiredyourdisgurement;youmay

alsoexperiencesomedegreeoftrauma,whichwillpotentially

extendtheperiodofadjustment.Traumaiscommonwhensomeonehasbeeninvolvedinanaccident,beenattacked,or

perhapsbeenthroughveryradicalsurgicaltreatment.

Ifyouareencounteringdifcultiessleeping,havingrepeated

ashbacksoftheaccidentorevent,youarestrugglingto

concentrateandperhapsfeelespeciallysensitive,youmayhave

post-traumaticstressdisorder(PTSD),anditwouldbeadvisable

totalkwithyourGPaboutthis.Specialisthelpisavailablefor

this,andreceivingareferraltoasuitableprofessionalasearlyaspossibleisadvisable.

Congenital or early acquired disgurement

Therecanalsobeasenseoflossifyouwerebornwitha

disgurement,oracquireditinearlylife.Thissenseoflossis

slightlydifferentinitsnature,andrefersmoretoafeelingofloss

forhowyouimaginelifemighthavebeenifyoudidnthave

adisgurement.

Somepeopleimaginethatlifewouldhavebeenmucheasieror

theywouldhavebeenmoresuccessfulwithoutadisgurement.

Youmayndyourselfblamingyourdisgurementforthings

inyourlifethatgowrong,oryouareunhappyabout.Such

lossisusuallyencounteredattimesofchangeorcrisis.Many

peopleexperienceitwhentheyfaceanewmedicalintervention,

orperhapsarehavingdifcultiesintheirrelationships.The

resultingfeelingsaresimilartothosedescribedbefore,andit

canbeusefultoreviewyourcurrentbeliefsandcopingstrategies

whenthishappens.

5 Handling relationships

Meeting new people and managing intimate relationships

Associalbeings,ourrelationshipsareimportanttousand

learningaboutrelationshipsbeginsatbirth,whenwerstbondwithourparentsandfamilies.Howweexperiencethese

rstrelationshipswillhaveabearingonhowweapproach

relationshipsinlaterlife.

The rst step was getting to like myself.People expect me, and other people withdisgurements, to be quiet and reserved.I am the complete opposite. I have theattitude that, because of the way I look,people are bound to stare regardlessof what I am doing.


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Someofthemostcommondifcultiesyouexperiencewilloccur

insocialsituationsparticularlywhenyoumeetpeopleforthe

rsttimeandinintimaterelationships.Ifyoureffortsatrelatingweremetwithwarmthandapproval,

youwillprobablyfeelmorecondentaboutfutureencounters.

Ifyourearliestrelationshipswereunsatisfactory,and/oryou

haveexperiencedalotofnegativereactionsfromotherpeople,

thenyoumaybemorecautious,lackcondence,avoidsocial

interactionsornditdifculttotrustotherpeople.Thesefactors

willinevitablyinuenceyourbehaviourandsocialencounters.

Meeting new people

Itisnormaltofeelanxiouswhenmeetingsomeonefortherst

time.Wenaturallywanttobeacceptedbyothers.Ifyouhave

adisgurementpeoplemayreacttoyouwithsurpriseand

curiosityoravoidyoualtogether.Onceyouaremoreengagedina

conversationhowever,youwillndtheyaremorelikelytofocus

onwhatisbeingsaidthanyourdisgurement.

Peoplealsonoticebehaviour.Ifyouareself-consciousaboutyourdisgurement,thismayshowinyourbehaviour.Forexample,

youmayavoideyecontactordisplaynervousbodylanguage.

Suchbehaviourcanmaketheotherpersonfeelawkwardand

lessinclinedtowanttoknowyou.Thistypeofprocessiscalled

thenegativefeedbackloopandyoucanreadmoreaboutitin

ourbooklet,Handling Other Peoples Reactions.

Byadoptingmorepositivebodylanguageandcommunication

skillsyoucanchangetheseencounterstobenetyou.Wewilllookatsomeofthewaystodothisonpagetwelve.

Managing intimate relationships

Ifyouhaveadisgurement,youmayndithardtobelievethat

someoneelsewillndyouattractive.However,yourappearance

shouldnotexcludeyoufromintimaterelationshipsandmany

peoplewithdisgurementsenjoyverysuccessfulrelationships.

Understandably,ifhavebeenhurtorrejectedinthepastyoumaywanttoavoidmoreofthesame.Asaresult,youmight

adoptstrategiesthatpreventyougettingclosetosomeoneor

avoidopportunitieswhereyoumightmeetafuturepartner.

Employingsuchavoidancestrategiescanbecounterproductive

however,becausewhilstthismaymeanyouavoidpotentialpain,

youalsoruleoutthepossibilityofpositiveencounters.Anysocialencounterinvolvesthecomingtogetheroftwo

peoplewiththeirownpastexperiences,beliefsandassumptions

butassumptionscanbewrong.Transferringoldnegative

assumptionsandbehaviourontoyourcurrentencounterismore

likelytocreatetheveryexperiencethatyouaretryingtoavoid!

Takingrisksrequirescourage,butcanbringuntoldreward.

Changing Faceshasproducedaguidetointimacyand

relationshipsthatoffersadviceabouthowtomanagesomeofthemostcommonconcernsinthisarea.Theguidecanbe

downloadedfromwww.changingfaces.org.uk

6 Managing expectations

Yourpersonalexpectationswillplayamajorpartinyourability

tolivepositivelywithadisgurement.Yourexpectationswill

havebeeninuencedbytheexpectationsandreactionsofotherpeople.Howyouexperiencedthese,howtheyweremanaged,

andwhattheirimpactwasmaycontinuetoinformhowyoufeel

aboutyourabilitiesandfutureprospects.

Becauseofyourdisgurement,yourfamily,withthebestof

intentionsbecausetheywantedtoprotectyoufromhurtand

disappointmentmayhaveover-protectedyou.Thismayresult

inyouhavinglessbeliefinyourownabilitiesandcapabilities.

If,however,yourfamilyinstilledthebeliefthatyouwerejustascapableasthenextperson,youarelikelytohaveapositivebelief

inyourabilitiesandfuture.

Unfortunately,ifyouhavedevelopedthebeliefthatothersare

goingtoreactnegativelytoyoubecauseofyourdisgurement,

yourbehaviourmaybemoredefensive.Whilstsuchacoping

strategywillhavebeendevelopedforareasonandmayhave

servedyouwellinthepast,itcanbehelpfultoreviewifitisstill

relevantnow.Youmayndthatyourassumptionsareoutdatedandonlyservingtolimityourlife.Bygivingyourselfthechance

toexperiencepeopledifferently,youhaveachancetodisprove

unhelpfulbeliefsandexpandyourpersonalexpectations.


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Ofcourse,somepeoplemaymakenegativeassumptions

basedonyourappearance.Theymayassumethatyouareless

intelligent,lesslikelytobesuccessfulorhavearelationship,ortoenjoylife.Suchexpectationsofyou,particularlyiftheyinclude

yourfamilyandfriends,caninformyourownbeliefs.

Tocounterthis,adoptbehaviourthatletsothersknowthat

thereismoretoyouthanyourdisgurementandthatitdoesnt

deneyouasaperson.Engaginginconversation,sharingtopics

ofinterest,andlettingotherpeoplegettoknowmoreaboutyou

cangoalongwaytodispellinganymythsormisconceptions.

2. How to manage the challenges

Someofthekeyfactorsthatenableindividualsandfamiliesto

facethechallengesofdisgurementinclude:

1Havingaccurateandrealisticinformationaboutyour

conditionandtreatmentoptions

2Havinggoodqualitysocialsupportfromfamily,friendsand

professionals

3Havingapositiveattitudeandselfbeliefaboutyour

appearanceandyourfuture

4Employingarangeofeffectivecommunicationandsocial

skills.

Letslookattheseinmoredetail.

1 Having accurate and realistic informationabout your condition

Beingwell-informedaboutyourconditionandthetreatment

optionsavailablecangiveyouasenseofcontrolandauthority.Thismeansyouneedtotakeactivestepsingettingaccurate

informationratherthanjustallowingotherstomakedecisions

foryou.

Therearelotsofwaysofobtaininginformationabout

yourcondition.Theseincludetalkingwithexpertmedical

professionals,contactingcondition-specicsupportgroupsand

organisations,andresearchingmedicalliteratureandreputable

websites.

Beingwell-informedcanhelpyoutomanageotherpeoples

questions,andtodispelanymythsandmisconceptionsthat

othersmayholdaboutyourdisgurement.Itcanalsohelpyou

toberealisticabouttheoutcomeoftreatmentavailabletoyou

andmakeinformedchoicesregardingthesetreatments.

Itisnaturaltoexploretreatmentoptionsthatmaybringphysical

relief,enhancefunctioningorperhapsbringaestheticchanges

thatyoudesire.Itis,however,dangeroustoundergomedicalor

surgicalinterventionswithoutknowingallthefactsincluding

therisksandlimitationsofsuchinterventions.

Holdingunrealisticexpectationsoftheoutcomesoftreatment

canleadtoconsiderabledistressanddisappointment,andforsomepeople,depressionwhentheseexpectationsarentmet.It

canalsobedangeroustoholdontothebeliefthatthesolution

todifcultiesinyourlifeliesinthesurgicalremovalofyour

People do make assumptions about whoyou are from what you look like. You haveto accept that people do make comments,its the way some have been brought up,its the way we are constantly bombardedwith the message that you have tolook good. It used to be hurtful, but not

anymore. I see new encounters as anopportunity to let people know that I amactually a quite nice person if you get toknow me, so give yourselfpermission to do that.

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disgurement.Notonlyisthisunrealistic,asitisrarethata

disgurementcanberemovedcompletely,butitisunlikelythat

surgerywillresolveanysocialoremotionalproblems.

Havingunrealisticexpectationsabouttreatmentoptions

canalsodelaytheprocessofadaptingtoandacceptingyour

disgurement.Ifyouareconstantlyholdingontothebelief

thatsurgerywillsolveeverything,youarelikelytoavoidever

acceptingyourselffullyandthiswillaffectyouremotionalwell-

being.Familyandfriendscansometimesfallpreytothiswayof

thinking,perhapsinanattempttobepositive,buttheytooneedtoreviewtheirexpectations.

Whenconsideringtreatmentoptions,youmightndithelpful

tothinkaboutthefollowingquestions,andusetheanswersto

guideyourenquirieswithhealthprofessionals:

1Whatmakesthistherightoptionformeatthistime?

2AmIdoingthisformyself,ortryingtopleaseothers?

3Whatdifferencewillthetreatmentmaketomylife?What

willitenablemetodothatIdontcurrentlydo?Howwillthis

show?Berealistic.

4DoIknowandunderstandalloftherisksaswellasthe

benets?

5DoIknowwhattoexpectfromthetreatment/surgery?What

willIlooklikeafter?Howlongwilltherecoveryprocesstake?

6Whatalternatives,ifany,exist?

7Woulditbehelpfultospeakwithotherpeoplewhohave

undergonesimilartreatment?

OurbookletTalking to Health Professionals about Disgurement

cangiveyoumoreguidanceonthis.

Thetimemaycomewhenyouwanttostoptreatment,orwhenyourmedicalprofessionaltellsyouthatnomorecanbedone.

Dependingonwhetherthisisyourchoiceornot,youmay

experienceeitherrelieforndthisverydifculttoaccept.

Somepeoplegothroughaprocesssimilartolosswhenthis

happens,astheynallybegintoadjusttoacceptingtheircurrent

appearance.Youmightndithelpfultoseeksupportat

thistime.

2 Having good quality social support

Weallneedgoodsupportinourlives.Knowingweareloved,

valuedandrespectedbythosewelove,valueandrespectandto

whomwecanturntosharegoodandbadnewswithoutfearof

rejection,actsasabuffertothenegativeexperiencesinlife.Our

immediatefamiliesoftenprovidethestartingpointforthis.For

thosewhodonthaveimmediatefamilyclosebyorwhofeeltheycannotrelyontheirfamilies,itisimportanttocreateanetwork

ofsupportthroughfriends,workcolleaguesandothers.

Ifyouhaveadisgurement,creatinganetworkthatyoucanrely

onsupportstheexperienceofbelongingandbeingacceptedfor

whoyouare.Thiswillhaveapositiveimpactonyourself-esteem

andsenseofidentity.

Considerhowyoucanextendyoursupportnetworkinawaythatmakesyoufeelgoodaboutyourself.Itcanbeeasiertothink

aboutwhatsetsyouapartfromothers,ratherthanwhatyou

haveincommon,butifyoureallywanttosinginachoir,gorock

climbing,orlearnanewlanguage,youwillbeguaranteedto

meetthosewithsimilarinterests.Andifyoustepoutsideyour

comfortzone,youmaysurpriseyourselfanddevelopuntapped

skills,greatercondenceandnewfriendsalongtheway!

Youcanndoutaboutdifferentsocialgroups,coursesandeventsinyourlocalpaper,atyourlocallibrary,andthroughthe

internet.Youdontneedtospendalotofmoneyandmany

activitiesarefreesodontletthisbeabarriertolookingaround!

I am happy with the way I look andany surgery I choose to have is to makeme feel physically more comfortablerather than to t in with someoneelses accepted norm.

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Kathy has neurobromatosis. Sheenjoys calligraphy, art and has a widerange of interests. She is also veryactive in her local community.

9

PhotocourtesyoftheBBC

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Kapil has a cleft lip and palate. Heowns an IT business, is married toKaye and they have a son, Krishan.

Photographcourtes

yofKapilKapur

10

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3 Having a positive attitude and self-belief

Ourthoughtsandbeliefsareinformedbyourpastrelationships

andgenerallifeexperienceandarecentraltohowweexperienceourselvesandotherpeople.

Itisourthoughtsandbeliefsthatusuallyinformourfeelings

aboutasituationand,inturn,caninuenceourbehaviour.

Thisinterplayofthoughts,feelingsandbehaviourcanbeauseful

frameworkforunderstandingyourselfandhowyoucanconsider

change.

Ourwaysofthinkingtendtobeautomatic,andoftenoutsideof

ourconsciouscontrol.

Althoughwecantstopthoughtsautomaticallycomingtomind,

itispossibletolearntorecognisethem,questiontheirrelevance

andusefulness,andiftheyareunhelpfulorlimiting,thento

rejectthem.Throughthisprocess,youcanchoosetoreplaceyour

thoughtswithsomethingmorehelpful.Forexample,ifyound

yourselfautomaticallythinkingthatnoonewillbeinterestedin

whatyouhavetosay,youcanremindyourselfthatyouhavelots

incommonthatcouldbeofinterest.

Itsnormalforpeopletoadoptxedpatternsofthinking,and

hencebehaving,basedonasetofassumptionsaboutlife.

Theseassumptionsmaybebasedonpastnegativeexperiences

whichmaynolongerberelevantandmayinterferewith

presentbehaviour.

Adoptingamorepositiveattitudemaysoundover-simplistic

whenyourlifefeelslikeanongoingbattleandinmanywaysyoureright!Wideningyourthinkingaboutyourself,your

disgurement,andotherpeopleinotherwordsbreakingxed

patternsofthinkingandtryingtothinkinadifferentway

especiallyifyouhaveencounteredalotofdifculties,willnotbe

simplebutwilltaketimeandhardwork.Youmightnditeasier

toexploreyourwaysofthinkingandhowtheyareimpactingon

yourpresentlifewithatrainedcounsellororpsychologist.

Havingamorepositiveattitude,however,canmakeahugedifferencetohowyouhandlerelationshipsandthevarious

situationsinyourlife.Otherpeoplerespondmorepositivelyto

thosethatholdpositivebeliefsandadoptpositivebehaviour,

irrespectiveofwhethertheyhaveadisgurementornot.

Oneofthemostimportantquestionsthatyouneedtoaskis:

WhatbeliefsdoIholdaboutmydisgurement?Theanswer

tothisquestionmaynotbeeasytoface,andmighttakesome

unravelling,butitwillalsobringwithitanewawarenessofhow

yourthoughtsmightbeinuencingyourfeelingsandbehaviour,

andwhetherornotyouneed/wanttoreviewthem.

If,forexample,youhavedevelopedthebeliefthatyour

disgurementhaslimitedyourlife,thisbeliefmaycontinueto

inuenceyourlifeinanegativeway.Perhapsyoudontassertyourselfwithothers,atworkorwithyourfamily?Perhaps

youassumethatyoureffortswillbemetwithresistance,so

youchoosenottotry.Reviewingthisbeliefsothatyouthink

somethingmorepositiveandrealisticcanopenupacompletely

newwayofthinking.Forexample,howwoulditbetothinkthe

following:Mydisgurementposeschallenges,butIhavethe

sameabilitiesandpotentialasanyoneelse,andImworthyof

successtoo.

Adoptinganewthoughtsuchastheabovemaygiveyoumore

couragetotaketheriskofdoingsomethingdifferent.For

example,itmighthelpyoutoconsiderthatyoumightbecapable

ofgettingthepromotionyouneverthoughtyoucouldget.

Reviewingbehaviourisalsoimportantbecauseiftheoutcomeof

yourbehaviourprovespositive,itwillhelptochangeunhelpful

xedwaysofthinking.Inrelationtoapromotion,yourrst

stepmightbetowritedownallthereasonswhyyouthinkyoudeserveapromotion.Secondly,youcouldwritedownthe

positionyoufeelyouarereadyfor.Youcouldthenre-writeyour

CV.Thenextstepcouldbetoaskforaninformaldiscussionwith

thoughts SELF ESTEEM

feelings and emotions

actions

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yourbosstoconsiderwhathe/shemightbelookingfor.Finally,

youcouldpreparewithafriendhowyouwishtohandletheinterviewforapromotion.Thisgradedapproachisdiscussed

lateronpage16buildingblockstoincreasecondence.

4 Employing effective communication andsocial skills

Whilstappearancemattersinoursociety,itisbehaviour

thathasthegreatestimpactonotherpeople.Beingableto

communicateeffectively,bothverballyandnon-verbally,isone

ofthemosteffectivewaystoimproveyoursocialinteractions

andyourself-condence.

Verbalcommunicationreferstothespokenword,howandwhat

wesay.Interestingly,peoplerespondmoretohowwesaythings

thanthecontentofourspeech.Hence,thetone,pitch,andspeed

ofourdeliveryareveryimportant.Ifyouintroduceyourselfin

awhisper,otherpeoplemaynotonlystruggletohearyou,but

theymayalsoassumethatyoulackcondenceandmayfeel

uncomfortablespeakingwithyou.

Non-verbalcommunication,oftencalledbodylanguage,refers

tohowweusetheotherpartsofourselvestocommunicate

ourfeelingsandneeds.Thiscanincludethewayyouwalk,your

posture,eyecontact,howyouuseyourhands,thewayyoucross

yourlegs.Itisthisnon-verbalcommunicationthatisperhapsour

mostpowerfultool,andtheonethattendstoportrayourtrue

feelings.Ifyouobserveacondentpersonenteraroom,they

mightwalkwiththeirheadup,shouldersback,lookotherpeople

intheeye,smileaccordingly,andthenextendtheirhandwhen

theyintroducethemselves.

Goodcommunicationandsocialskillscanbelearnedthrough

simplestrategieslikepreparation,thinkingaboutwhattosay,beingmoreassertive,andusingbuildingblocksofbehaviour

(seepage16).

Being prepared

Otherpeoplesreactionstoyourappearancecanbeexhausting

andupsetting.Whileyoumaynotbeabletopreventpeoples

reactionstoyou,howyoumanagethemcanhaveapositive

effectonyourself-condence.

Otherpeoplemayalsofeeluncertainabouthowtorespond

toyoubecausetheyarenotusedtoseeingsomeonewitha

disgurement.

Bythinkingaboutnewsituationsinadvance,andpreparingfor

themwithapositiveframeofmind,youcanreduceanyanxiety

youmayhave,improveyourself-condence,andhelpothers

tofeelmoreatease.Forexample,ifyouaregoingtoanevent

whereyouwillbemeetingnewpeople,thinkabouthowyoumightintroduceyourself.Bearinmindthatthetone,speedand

strengthofyourvoicewillconveyyourlevelofcondence,so

practicehowyoumightdothis.

Thinkaboutyourbodylanguage.Practisewalkingwithyour

headup,makinggoodeyecontact,smiling,andextendingyour

handtoshaketheirs.Whenyoudothis,peoplearemorelikelyto

lookatandacknowledgeyouand,byinitiatingthecontact,you

aretakingcontrol(thiswillalsohaveaneffectonyourthinking:apositiveexperiencewillregisterinyourmind,andislikelyto

createaframeofmindwhichwillthenbeopentonewwaysof

thinkinginthefuture).

I discovered how to control a social situation just going up to someone who is staring oracting funny and saying Hi is a really goodway of breaking the ice and showing yourhuman side.

Having just been through the universitysystem I have had to meet hundreds of new

people so unless I had been able to introducemyself in a condent way, I doubt I wouldhave found the experience anywherenear as fullling as I did.

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Adam, who has neurobromatosis,celebrates achieving a BA in Business

Management, with a friend.

PhotographcourtesyofAdamP

earson

14


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Debbie has a port wine stain. She is aspeech and language therapist and hastwo daughters.

Photographcourtesyo

fBrunoVincent

15


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Youmaythenwanttohavesomeinitialresponsesora

conversation-openerready.Thinkaboutthecontextinwhich

youremeetingthesenewpeople,sothatyoucanbeprepared

withcommontopicsofdiscussion.Ifitisawork-relatedevent

youcantalkaboutyourworkandenquireabouttheother

personsareaofexperience.Ifyoureataparty,youmightwant

toaskhowthepersonknowsthehost.Takingtheinitiativein

thesituationputsyouinthedrivingseat,andtheotherperson

atease.

Itmayfeelitshardandunfairthatyouneedtomaketheeffort

andtaketheinitiativeinsocialencounters.Itsunderstandable

thatyoumaywanttoavoidsituationsthatmakeyoufeel

anxious.Ifhoweveryoudothisallthetime,youwilllimityour

freedomandlifestyle.Bynotfacingchallengingsituations,you

willonlyincreaseyouranxietyaboutthembecauseyounever

allowforthepossibilityofdisprovingyourfearsandthiswill

undermineyourcondencefurther.

What to say or do

Ifyouhaveanoticeabledisgurementyouareprobablyusedtoreceivingalotofunwantedattention.Havingsomethingtosay

inresponsetostaring,commentsorinappropriatequestionsis

oneofthemosteffectivewaystomanagesuchsituations.Our

booklet,Handling Other Peoples Reactions,offersplentyofadvice

intheseareas.Herearesomescenariosforyoutoconsiderin

thecaseofallofthemyourresponsemightdependonhowyou

arefeelingatthetime,whoisasking,andwhereyouare.

Dealing with questions

IfsomeoneasksWhathappenedtoyourface?youcouldconsider

thefollowingresponses:

lIdrathernotanswerthat.Imsureyoucanunderstand.

Decliningtoanswerthisquestionisperfectlyreasonableifyou

dontfeelitisappropriate,suchaswhenyouareaskedbya

strangerorareinapublicplace.Providingashortbutrmreply

isallthatisnecessary.

lProvideabrief,simpleresponseandthenmoveontoanother

subject.ForexampleItsjustmybirthmark.Ilikeyourshirt

canyoutellmewhereyougotit?Thisalsohastheeffectof

distractingthepersonfromaskingyouaboutyourappearance.

lProvideamorein-depthreplyandleaveitopenforfurther

discussion.Forexample,Itsjustmybirthmark.Ivehaditallmylife.ItdoesntcausemeanyproblemsalthoughIhavetotake

extracareinthesun.

Dealing with staring

l Lookback,smileandholdtheotherpersonsgazemomentarily.

Theywillhopefullysmilebackatyouandthenlookaway.

lForthemorepersistentobserver,lookbackandholdtheirgaze

whilstraisingyoureyebrowsasanacknowledgementthatyouvenoticedtheirstaring.

lAsk,CanIhelpyou?DoIknowyoufromsomewhere?Thiswill

potentiallydetertheobserverfromcontinuingtolook,and

makethemawareoftheirbehaviour.

l Ifthepersoncontinuestolook,Canyoupleasestopstaringat

me.Itsveryrude.

Dealing with comments and name-calling

Itisimportanttoknowwhenitisbestjusttowalkawayfrom

asituationandnotassertyourself.Whenfacedwithagroupof

people,orsomeonewhoappearsaggressive,itmaybesaferto

leavethesituation.Itcanalsoservetopreserveyourenergy.Talk

tosomeoneabouttheexperienceforsupportandreassurance

onsuchoccasions.

Onlyifsuitable,havingareplythatdisarmsthepersonmaking

thecommentcanbeveryuseful.Forexample,ifsomeonemakes

anunkindcommentaboutyourdisgurement,andyoufeel

assertiveenough,andfeelsafeenough,thefollowingreply

mightbeuseful:Isthatthebestyouvegot?orGosh,howlong

didthattakeyoutothinkup?Youcouldthenpre-emptacome-

backbyofferingalltheotherpossiblecomments/namesthat

youprobablyknowonlytoowell.Forexample:Whatabout

(insertasappropriate).Thiskindofresponsetendstoshow

uptheotherperson,soyoumayonlywishtouseitifyoufeeltherearenootheroptionsavailabletoyou.Dependingonyour

toneyoucanmakeyourresponsesoundmorehumorousthan

humiliatingfortheotherperson.

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3 Living positively with a disgurement

Gainingthecondencetolivepositivelywithadisgurement

requiresresilienceandapositiveattitude.Thismayfeelhardto

acquireifyouhavetodealeverydaywiththesortofunwanted

attentionthatmakesyoufeelondutyallthetime.

Whetheryouwerebornwithadisgurementoracquiredone

lateroninlife,livingwithanunusualordifferentappearance

willinuencehowyouseeyourself,howyouseetheworld

and,inevitably,howtheworldseesyou.But,itisimportantto

rememberthatwhatyoulooklikeisonlypartofwhoyouare.

Forsomepeople,itspossibletotransformhowtheylookinto

apositive,ratherthananegative,aspectofthemselves.By

learningtheskillstheyneedtocopewiththeirdisgurement,

theycanfeelstrongerandbemoreconsciouslyawareofthe

choicestheymakeanddirectiontheytakeintheirlives.

Butthisisnttrueforeveryone,andsomepeoplestruggletheir

wholelivescopingwiththeunwantedattention.However,forthosewhoareabletoadoptapositiveattitudeandwho

learnthesocialskillstheyneed,thisislessofastruggleandlife

becomesinnitelymoremanageable,morepositiveandhappier.

Therearemanypeoplewholivepositivelywithadisgurement

eventhoughtheystillencounterunwantedattention.Theyare

abletoaccepttherealitythatfundamentallyitisnotwhothey

arethatgivesrisetosuchreactionsbutonlytheirunusual

appearance.Theirsenseofselfissostrongthattheyseeotherpeoplesbehaviourasalackofunderstandingandtheyavoid

seeingthisbehaviourasareectionofwhotheyare.

Manypeoplewithdisgurementslearntoadjust

completelytotheirunusualappearanceandgoontolead

veryfullledlives.Theirself-acceptanceandself-condence

radiatestothosearoundthemandresultsthattheyare

welcomedandwell-received.Theyarenotinhibitedby

theirlooks.

Forfurtherinformationgotowww.changingfaces.org.uk

orcontactourofces.

Building blocks to increase confdence: a graded approach

Ifyoufeelself-consciousaboutyourdisgurement,ornd

certainsituationsdifcult,itmightfeeleasierjusttoavoidthem.Asexplainedearlier,thistypeofcopingstylecanbe

counterproductivebecauseitpreventsyoufromeverdisproving

yourfears,maintainsyouranxietyaboutthesituationand

underminesyourself-condence.

Ausefulstrategyistousethegradedapproach.Identifythearea

ofconcerninaclearandtangibleway,andthenbreakitdown

intomanageablestepsstartingwithwhatyoucanmanageto

doandthenbuildingonthat.Forexample,ifyoundtravellingonpublictransportimpossible,

gowithafriendandduringoff-peaktimeswhenthereareless

peoplearound.

Iftheresanactivityyouwanttodo,likeswimmingatthelocal

pool,ndoutthequietertimesorwhethertherearesame-

genderoradult-onlysessionswhereyoumightfeelmore

comfortable.

Youcouldaskafriendtogowithyoutothepool.Youcould

alsovisitthehealthcentreatthechosentime,butonlygofora

coffeeandnotgoswimmingonthatoccasion.

Thenexttime,youcouldgoswimmingforjust15minutes,and

overtime,buildthisup.Youmightalsoconsidertalkingwiththe

managerofthehealthcentreaboutyourconcerns.Ifyouknow

thatyourdisgurementwillattractattention,itmight

beusefulforstafftoknowabitmoreaboutyourconditionsothat

theycanansweranyquestions

fromothermembersaccurately.

Youcanreadmoreabout

communicationskillsinourbooklet,

Handling Other Peoples Reactions,

andalsoinourGuide to Intimacy and

Relationships.Tondoutmoreaboutthesegotowww.changingfaces.org.uk

orcontactourofces.

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RegisteredCharityNo.1011222

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Registeredofce:TheSquireCentre

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ISBN978-1-900928-23-6

2009Changing Faces

WrittenbyHarrietGriffey,Journalist

&BernadetteCastle,CounsellingPsychologist

EditedbyWinnieCoutinho,HeadofCampaignsandCommunications,

Changing Faces


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