IsSexWorthThePain?WillingnessToEngageInSexualAc8vityAmongPartneredWomenWithFibromyalgiaKirstenM.Gullickson1,LyndsayCrump1,DianeL.LaChapelle1,PabloSantos-Iglesias2,&E.SandraByers1

1DepartmentofPsychology,UniversityofNewBrunswick2DepartmentofOncology,UniversityofCalgary

INTRODUCTION BACKGROUND•  Upto97%ofpaOentswithfibromyalgia(FM)reportitadversely

affectstheirsexuallives1.•  CommonlyreportedimpactsofFMonsexualwell-beinginclude

decreasedsexualfrequency,lowersexualdesire,difficultywitharousalandorgasm,andreducedsexualsaOsfacOon2-3.

•  However,previousresearchhasnotassessed:•  Women’swillingnesstoengageinsexualacOvitydespiteFM•  TheextenttowhichwomenwithFMviewthechangesto

theirsexuallivesasdistressingtothemselvesortheirpartners

•  ImprovingourunderstandingoftheimpactofFMonwomen’ssexuallivesisessenOalbecausesexualwell-beingisanimportantcontributortorelaOonshipsaOsfacOonandstability,psychologicalhealth,andqualityoflife4.

PURPOSE•  Thisprojectwaspartofalargerstudyexploringwomen’slived

experiencesoftheimpactofFMontheirsexualwell-being•  Ouraimwastounderstandwomen’s:

•  FeelingsaboutFM-relatedchangestotheirsexuallives•  PercepOonsofhowthesechangesaffecttheirrelaOonship•  WillingnesstoadjusttheirsexualscriptstoaccommodateFM

METHOD PARTICIPANTS•  16womenwithFMwhowereinacommiaedromanOcrelaOonship•  Age(years):M=45.19;SD=12.03;Range=28-67•  Rela1onshiplength(years):M=14.4;SD=12.31;Range=1-43•  Timesincediagnosis(years):M=10.08;SD=6.56,Range=3-22

PROCEDURE•  Audio-recordedsemi-structuredinterviewsinpersonorvia

telephonelasOngapproximately60to90minutesANALYSES•  SemanOcandlatentcontentwascodedbasedontheprinciplesof

ThemaOcAnalysis5

RESULTS/DISCUSSION •  ConsistentwithexisOngliterature,thevastmajorityofwomenreportedexperiencingchangesintheirsexuallivesasaresultofFM(e.g.,pain,faOgue,depression,medicaOonside-effects,negaOvebodyimage)1-3.•  LatentcontentunderlyingparOcipants’narraOvessuggestedsexwasavaluedac8vityforsomewomen,butnotothers.•  Relatedtothis,somewomenexpressedwillingnesstoengageinsexdespiteFM,whileothersdescribedliOletonowillingnesstoengageinsex.

•  WillingindividualsdescribedaaemptstoadjusttheirsexualscriptstoaccommodateFMbychangingtheOming,duraOon,locaOon,ornatureoftheirsexualencounters.•  ParOcipantsreportedvaryinglevelsofpersonaldistressandrela8onshipconflictasaresultofthesexualimpactsofFM.

•  Forwomenwhosesexualbehaviourwasconsistentwiththeirsexualvalues,lowerlevelsofpersonaldistressandinterpersonalconflictwerereported:•  Group1:valuedsexandwerewillingtoengageinsexdespiteFM•  Group3:didnotengageinsexbecauseitwasnotastronglyheldvalue

•  Forwomenwhosesexualbehaviourwasnotconsistentwiththeirvalues,higherlevelsofpersonaldistressandinterpersonalconflictwerereported:•  Group2:valuedsex,butwereunwillingtoengageinsexualacOvityduetotheirillness•  Group4:engagedinsexdespitenotvaluingsexasameansofreducingconflictoroutoffearoflosingtheirrelaOonship

REFERENCES1.  Fitzcharles,M.A.,etal.(2013).2012Canadianguidelinesforthediagnosisandmanagementoffibromyalgiasyndrome:

execuOvesummary.PainResearchandManagement,18(3),119-126.2.  Kayhan,F.,etal.(2016).SexualdysfuncOon,mood,anxiety,andpersonalitydisordersinfemalepaOentswithfibromyalgia.

NeuropsychiatricDiseaseandTreatment,12,349-355.3.  Rico-Villademoros,F.,etal.(2012).SexualfuncOoninginwomenandmenwithfibromyalgia.JournalofSexualMedicine,9,

542-549.4.  Byers,E.S.,&Rehman,U.(2013).Sexualwell-being.InD.Tolman&L.Diamonds(Eds.),APAHandbookofsexualityand

psychology.Washington,DC:APABooks.5.  Braun,V.,&Clarke,V.(2006).UsingthemaOcanalysisinpsychology.Qualita1veResearchinPsychology,3,77-101.

ACKNOWLEDGEMENTS•  Fundingsupport:BanOngPostdoctoralFellowship(P.Santos-Iglesias),UNBResearchFunds(D.LaChapelle&E.S.Byers)•  Resourcesupport:UNBPsychologicalWellnessCentre*ForacopyofthisposterpleasevisithOp://www.rehabilita8onpsychologyresearchlab.com

ENGAGEMENTINSEXDESPITEFM

VALUESEX

LITTLETONOENGAGEMENTINSEX

DONOTVALUESEX

4.Highdistress/conflict 3.Lowdistress/conflict

1.Lowdistress/conflict 2.Highdistress/conflict

“SomeOmesifI’mhavingareallybaddayImightjusthavetotellhim‘Hey,mykneehurts,we’renotgonnahavesexinthatposiOon,let’sdoitthisway’andit’sreallyanon-issue…there’sneveranyconflictaboutit.”–ParOcipant4“RightnowI’mnotconcerned[aboutoursexlife]…we’reinagoodplaceIthink…smoothsailing.”–ParOcipant8

“Thepaindoesn’tpreventme[fromhavingsex].Sexisworththepain.”-ParOcipant12“EvenifIdon’tfeellike[sex]IsOlldoit…SexispartofyourrelaOonshipandyouhavetotrythebestthatyoucantohaveagoodsexuallifewithyourpartner…”–ParOcipant18

•  AproporOonofwomenwithFMarewillingtoengageinsexualacOvitydespitetheircondiOon,indicaOngthatforsomewomen,sexisworththepain.•  WomenwhoexperienceFM-relatedchangestotheirsexuallivesdonotnecessarilyexperiencepersonaldistressorinterpersonalconflictiftheirsexualbehaviourisconsistentwiththeirsexualvalues.•  ClinicianscanhelpindividualsandcouplesadjusttoFMbyencouragingpaOentstoclarifytheirsexualvaluesand,ifsexisastronglyheldvalue,assisttheminfindingwaystoengageinsexualacOvitydespiteFM(e.g.,

communicaOontraining,recommendingchangestothesexualscript).•  EngagementinvaluedacOviOesdespitepainisanessenOalcomponentofchronicpainacceptance,thereforeawoman’swillingnesstoengageinsexualacOvitydespiteFMmaybeanindicatorofmoregeneralchronic

painacceptance.

“Iwouldgetangryandfrustrated[whenFMgotinthewayofsex].It’slikeFMhasaffectedsomanyaspectsofmylife,can’tIjusthaveonethingthatitdoesn’taffect….”–ParOcipant13“IfeellikeI’velet[myhusband]down”–ParOcipant7

“[Oursexlife]lackswhenIhaveaperiodofreallynotfeelingwell.Ijustkeeptellingmyself‘I’mgoingtofeelbeaerinafewdays’…,butrightnowithasn’tgoaenanybeaerandwesOllaren’thavingsex.”–ParOcipant11

“LotsofOmeyoudon’tfeellikebeingtouched.Especiallywhenyouhaveaflare-up…Sexisthelastthingonyourmindforsure.Withus[lackofsex]isnottoobad…Icouldseeothercouples,itimpacOngthemforsure…fighOngaboutitorwhateverbutwe’vebeenveryfortunate...Thetwoofusareokaywiththat.”–ParOcipant1

“IknowthatifIhave[sex]morefrequentlyI’mgoingtobeinagony,soIjustdon’t...Iwon’tevenentertainthethought[ofhavingsex]evenifIamaroused.”–ParOcipant5“Although[sex]isenjoyableforbothofus,it’snotasimportant[tous]asitmaybeforsomepeople.”–ParOcipant14

“[Myhusband]wouldmakemeliterallycryatnightsaying‘youknowhowimportantsexistome’and‘youknowthatwaspartofthedealwhenwegotmarried’and‘nowyou’rejustpretendingthatyoucan’t[havesex]anymorebecauseyourlosinginterest’…soIwouldsufferthroughit.”–ParOcipant9

IMPLICATIONS