{"paper_id":"5ce6577d-2274-441b-8428-df5bbc7c7a63","body_text":"1 \n\tPublisher:\t\tHealth:\tAn\tinterdisciplinary\tjournal\tfor\tthe\tstudy\tof\thealth,\tillness\tand\tmedicine\t\t\t(First\tsubmission\tJune\t2018;\trevised\tsubmission\tSeptember\t2018;\taccepted\tNovember\t2018)\t\t\tTitle:\t‘I\tfeel\tlike\tI\tam\tbeing\tstabbed\tby\ta\tthousand\ttiny\tmen’:\tThe\tchallenges\tof\tcommunicating\tendometriosis\tpain\t\tAuthor:\t\tDr\tStella\tBullo\t\tManchester\tMetropolitan\tUniversity\ts.bullo@mmu.ac.uk\t\t \t\n\n 2 \n‘I\tfeel\tlike\tI’m\tbeing\tstabbed\tby\ta\tthousand\ttiny\tmen’:\tThe\tchallenges\tof\tcommunicating\tEndometriosis\tpain\tAbstract\tEndometriosis,\tas\ta\twidespread\tgynecological\tcondition,\taffects\tan\testimated\t1\tin\t10\twomen\tand\tyet\thas\ta\tworldwide\taverage\tdiagnosis\tlength\tof\t7.5\tyears.\tCausing\tincapacitating\tpain,\tamong\tother\tassociated\tmanifestations,\tthe\tcondition\tseverely\timpacts\ton\twomen’s\tlives.\tThis\tarticle\tuses\tonline\tsurvey\tdata\tto\tinvestigate\thow\tpre-diagnosis\tendometriosis\tpain\tis\tconceptualized\tand\tarticulated\tin\torder\tto\texplore\tcommunication\tchallenges\treported\tin\tearly\tconsultations\tthat\tcan\tpotentially\tbe\tseen\tto\tplay\ta\trole\tin\tdiagnosis\tdelay.\tThe\tfindings\tof\tthe\tstudy\tindicate\tthat\twomen\tfeel\tthat\tthey\tdo\tnot\thave\tthe\tappropriate\ttools\tto\tdescribe\ttheir\tpain\tand,\tin\tmany\tinstances,\tfeel\tdismissed\ttherefore\tprolonging\tdiagnosis.\tThe\tarticle\tfinds\tthat\tthe\tmajority\tof\tthe\tpain\tdescriptors\tidentified\tuse\telaborate\tmetaphorical\tscenarios\tto\tconvey\tthe\tintensity\tof\tthe\tpain\tand\tconcludes\twith\tsome\treflections\ton\tthe\tissue\tof\tmetaphorical\tlanguage\tin\tendometriosis\tpain\tcommunication\tpractices\twhilst\tcalling\tfor\tinterdisciplinary\twork\tin\torder\tto\tdevise\tappropriate\ttools\tfor\tendometriosis\tpain\tcommunication.\t\t\tKeywords:\t\tChronic\tillness\tand\tdisability,\tExperiencing\tillness\tand\tnarratives,\tDiscourse\tanalysis\t\t \t\n\n 3 \n‘I\tfeel\tlike\tI’m\tbeing\tstabbed\tby\ta\tthousand\ttiny\tmen’:\tThe\tchallenges\tof\tcommunicating\tEndometriosis\tpain\tStella\tBullo\t\tIntroduction\t\tEndometriosis\tis\ta\tgynaecological\tcondition\twhereby\ttissue\tresembling,\tand\treacting\tlike,\tthe\tlining\tof\tthe\twomb\t(endometrium)\tgrows\tin\tother\tareas\tof\tthe\tbody.\tDuring\tmenstrual\tcycles,\tblood\tis\ttrapped\tinside\tinstead\tof\tleaving\tthe\tbody\t(Endometriosis-UK,\tn.d.).\tThis\tmay\tlead\tto\tthe\tformation\tof\tcysts,\tscars,\tadhesions\tand\tso\ton\tand\tmay\tcause\ta\tmultiplicity\tof\tas\tyet\tnot\tfully\tdocumented\tphysical\tand\temotional\tconsequences.\t\tDespite\tits\thigh\trate\tof\toccurrence,\taffecting\t1\tin\t10\twomen,\tthe\taverage\tlength\tof\ttime\tworldwide\tfrom\tonset\tof\tsymptoms\tto\ta\tdiagnosis\tof\tendometriosis\tis\t7.5\tyears\t(Endometriosis-UK,\tn.d.).\tIt\tis\tprimarily\tdiagnosed\twhen\texploring\tinfertility\trather\tthan\tcomplaints\tabout\tsevere\tpain\tand\tother\tassociated\tmanifestations\t(Arruda\tet\tal.,\t2003).\tThere\tare\ta\tnumber\tof\tassumptions\tas\tto\tthe\treason\tfor\tthe\tdiagnosis\tdelay.\tThe\tinvisibility\tof\tthe\tcondition\tdoes\tnot\tallow\tfor\tdetection\tof\tdamage\tin\tstraightforward\tand\tnon-invasive\tinvestigations\tbut\trather\trequires\tmore\tinvasive\tsurgical\tprocedures\tsuch\tas\tlaparoscopic\tsurgery\t(Hsu,\tet\tal.,\t2010),\twith\tall\tthe\tassociated\timplications\tthereof.\tGiven\tthat\tendometriosis\tsymptoms\tare\tmostly,\tbut\tnot\texclusively,\tassociated\twith\twomen’s\tmenstrual\tcycles,\twhen\tsome\tdegree\tof\tpain\tis\texpected,\tit\tis\tnot\tinfrequent\tto\tfind\thealth-care\tpractitioners\tthat\tdismiss\tand\tnormalize\tpain\tas\tpart\tof\tthe\tfemale\tcondition\t(Bullo,\t2018;\tSeear,\t2009).\tThis\tdismissal\tand\tnormalization\tof\tpain\tmay\ttherefore\tprolong\treferrals\tfor\tdiagnostic\ttreatments\t(cf.\tsection\t2\tfor\tfurther\tdiscussion\tof\tthis\tissue).\t\tAmongst\tan\tarray\tof\tsymptoms,\tEndometriosis\tis\tvery\tfrequently\tcharacterised\tby\tproducing\tlife-altering\tpain\tin\twomen\twho\tsuffer\tfrom\tit,\twhich\tseverely\trestricts\ttheir\tlives\t(Culley\tet\tal.,\t2013:\t635).\tEndometriosis\tpain\tpresents\tcharacteristics\tof\tthe\ttwo\tpain\ttypes\toutlined\tby\tthe\tInternational\tAssociation\tfor\tthe\tStudy\tof\tPain\t(IASP)\t(1994).\tThe\tfirst,\tknown\tas\tnociceptive\tpain,\tis\tcaused\tby\tdamage\tto\tbody\ttissue\t(e.g.\tbone\tfracture)\twhereby\tnociceptive\tnerves\tsense\tand\trespond\tto\tparts\tof\tthe\tbody\tthat\tsuffer\tfrom\tdamage.\tThis\ttype\tof\tpain\tis\tusually\tlimited\tand\tlasts\tuntil\tthe\tdamaged\ttissue\theals.\tThis\ttype\tof\tpain\tis\tlinked\tto\tpain\texperienced\tduring\tinflammations.\tThe\tsecond\ttype\tof\tpain\toutlined\tby\tthe\tIASP\tis\tknown\tas\tneuropathic\tpain\tand\tit\toccurs\twhen\tthere\tis\tnerve\tdamage\tcaused\tby\ta\tprimary\tlesion\tor\tdysfunction\tin\tthe\tnervous\tsystem,\tsuch\tas\tpost-stroke\tpain,\tlow\tback\tpain,\tand\tother\ttypes\tof\tchronic\tpain\t(Nicholson,\t2006).\tEndometriosis\tpain,\twhen\tdiagnosed,\tcan\tbe\tsubdivided\tinto\tcyclical\t(i.e.\tmenstrual),\tnon-cyclical\tor\tchronic\tpelvic\tpain\tand\tfunctional\tpain,\ti.e.\tpain\tduring\tsexual\tintercourse,\turination,\tetc.\t(Bourdel\tet\tal.,\t2015).\tTherefore,\tboth\tneuropathic\tand\tnociceptive\telements\tare\trelevant\t(Howard,\t2009),\tas\tmentioned\tabove.\tFurther\tevidence\tpoints\tto\tthe\tcomplexity\tof\tendometriosis\tpain\tand\tsuggests\tthat\tpain\t\n\n 4 \nperception\tcan\tbe\taffected\tby\tstress,\thormonal\tcycles\tand\tpain\tcoping\tstrategies,\tetc.\t(Morotti,\tet\tal.,\t2016).\tThe\tlatter\tstudy\talso\tsuggests\tthat,\tgiven\tthe\tchallenges\tposed\tby\tthe\tnature\tof\tthe\tcondition\tand\tthe\tcomplexity\tof\tthe\ttypes\tof\tpain\tit\tcauses,\tthe\tendometriosis\tpain\texperience\tshould\tbe\tassessed\tholistically.\tThat\tis,\tpractitioners\tshould\tmeasure\tnot\tonly\tits\tseverity\tbut\talso\tthe\tquality\tof\tthe\tpain\tachieved\tthrough\tdescriptors\tthat\tmay\treflect\tunderlying\tpain\tmechanisms\t(e.g.\tburning,\tstabbing,\ttwisting,\tetc.),\tas\twell\tas\tthe\tdegree\tto\twhich\tit\taffects\tquality\tof\tlife.\tSome\tmedical\tstudies\tby\tendometriosis\tspecialists,\t(e.g.\tBourdel\tet\tal.,\t2015),\thave\toutlined\tendometriosis\tpain\tassessment\ttools\tthat\tmap\tpain\tpatterns\tto\ttypes\tof\tendometriosis\tpain\tand\ttherefore\tprovide\ta\tmeans\tto\tassess\tresponse\tto\ttreatments.\tSuch\ttools,\thowever,\ttend\tto\tbe\tused\tby\tspecialists\tonce\twomen\thave\tbeen\tdiagnosed\twith\tendometriosis\tin\torder\tto\tinform\ttreatment.\tThis\tmeans\tthat\tpain\tcomplaints\tprior\tto\tdiagnosis\tare\tnot\talways\tsystematically\tand\tholistically\tassessed,\tas\tadvised\tby\tMorotti,\tet\tal.\t(2016),\tnor\tnecessarily\tgranted\tthe\tattention\tthey\tdeserve\tgiven\ttheir\tassociation\twith\tthe\tnatural\tmenstrual\tcycle\t(Seear,\t2009).\tThese\tfindings\talso\thint\tat\tissues\tof\tcommunication\tpotentially\tbeing\tat\tstake\tduring\tearly\tmedical\tinteractions.\t\tIn\tthis\tarticle,\tI\tuse\tonline\tsurvey\tdata\tto\texplore\tthe\tchallenges\tfound\tby\twomen\twhen\ttrying\tto\tmake\tsense\tof,\tand\tcommunicate,\tpain\tin\torder\tto\tachieve\ta\tdiagnosis.\tI\targue\tthat\ta\tdeeper\tunderstanding\tof\tthe\tlanguage\tused\tin\tpain\tcommunication\tmay\thave\tpositive\timplications\tfor\tpain\tcommunication\tpractices\tand\tpotentially\tmake\ta\tcontribution\ttowards\ttackling\tthe\talarming\tendometriosis\tdiagnosis\tdelay\tissue.\t\tThe\tchallenges\tof\tcommunicating\tendometriosis\tpain\tThe\tcommunication\tof\tpain\tand\tits\tchallenges\tis\tan\tissue\twidely\taddressed\tin\tthe\thealth\tcommunication\tliterature\t(e.g.\tLascaratou,\t2007),\tas\tare\treports\tof\tpatients\tbeing\tdisbelieved\twhen\tcommunicating\tpain\tin\tgeneral\t(e.g.\tKugelmann,\t1999).\tEndometriosis\t(and,\tin\tparticular,\tundiagnosed\tendometriosis)\tis\tno\texception.\tRecent\tfindings\t(Bullo,\t2018)\thave\tidentified\ta\tworrying\ttrend\tin\twomen,\twho\twere\tlater\t(in\tsome\tcases,\tdecades\tlater)\tdiagnosed\twith\tendometriosis,\treporting\tbeing\tdismissed,\tdisbelieved,\tor\teven\tmisdiagnosed\twhen\tcomplaining\tabout\tmenstrual\trelated\tpain\tin\tearly\tmedical\tconsultations.\tThe\tissue\tof\tthe\tdelegitimization\tof\twomen’s\tpain\tin\tmedical\tencounters\thas\tbeen\tbroadly\taddressed\tby\tfeminist\tliterature.\tMalterud\t(1992),\tfor\texample,\tfound\tthat\tissues\tof\tcommunication\taffected\tthe\tdescription\tof\tsymptoms\tby\twomen,\tresulting\tin\tillnesses\tbeing\tdeemed\tundefined.\tThe\tauthor\tconcludes\tthat\tgender\tasymmetries\tplayed\tan\timportant\tpart\tin\tthe\tdoctor-patient\trelationship\taffecting\tthe\tcommunication\tof\thealth\tcomplaints\tand,\ttherefore,\tthe\tdiagnosis.\tKaler\t(2005)\treports\ton\ta\tstudy\tof\tdyspareunia,\tthat\tis\tpain\tduring\tsexual\tintercourse,\twhere\t34%\tof\tparticipating\twomen\thad\tbeen\ttold\tthat\ttheir\tproblems\twere\tof\ta\tpsychological\tnature.\tIn\tfact,\tdyspareunia\tfalls\twithin\tthe\tthird\ttype\tof\tendometriosis\tpain\t(i.e.\tfunctional\tpain)\tmentioned\tin\tthe\tintroduction\tto\tthis\tarticle.\tKaler\twarns\tthat\tmany\tpain-characterized\tconditions\t\n\n 5 \naffecting\twomen,\tamongst\twhich\tendometriosis\tis\tlisted,\thave\ttraditionally\tbeen\t“ascribed\tto\tpsychological\tproblems”\t(2005:\t35).\tEchoing\tKaler’s\tfindings,\tBarker\t(2005)\tdiscusses\tthe\tpower\tof\tthe\tmedical\testablishment\tin\this/her\tstudy\ton\tpeople\twith\tfibromyalgia,\tconcluding\tthat,\tin\tcases\tof\tundefined\tillnesses,\tthe\tbiomedical\tfailure\tto\tprovide\ta\tdiagnosis\tto\tsymptoms\tresults\tin\tthe\tassumption\tthat\tthere\tare\tno\tphysical\thealth\tissues.\tInstead,\tsymptoms\tare\tdismissed\tas\tpsychological\tissues.\tContrariwise,\tBarker\t(2005)\tsustains\tthat\tthe\tbiomedical\testablishment\tprovides\ta\trite\tof\tpassage\tin\tcases\twhere\tdoctors\tare\tsuccessful\tin\tproviding\tpatients\twith\tthe\tname\tto\ttheir\tsymptoms.\tThis\twas\talso\tacknowledged\tin\tKaler’s\t(2005)\tdata\twhere\tthe\tauthor\treported\ton\twomen\tbeing\thappy\twith\ta\tdiagnosis,\tno\tmatter\thow\tserious\tor\tcritical\tit\twas.\tAlong\tthese\tlines,\tBullo\t(2018)\tfound\tthat\twomen\twho\teventually\tachieved\ta\tdiagnosis\tfor\tendometriosis,\tafter\tyears\tor\teven\tdecades\tof\tstruggle\twith\tdisbelief\tover\tthe\tseverity\tof\ttheir\tsymptoms,\tsaw\tthe\tact\tof\tachieving\ta\tdiagnosis\tas\tmetaphorically\twinning\ta\twar.\tSimilarly,\tGreenhalgh\t(2001),\tin\ther\tjourney\tthrough\ta\tmisdiagnosis\tof\tfibromyalgia\tthat\thad\tsevere\tconsequences\tfor\ther\tphysical\tand\tmental\thealth,\taddresses\tthe\tmethods\tby\twhich\tdiseases\tcome\tto\tbe\tconstructed\tby\tdoctors,\tthe\tdiscourses\tof\tobjectification\tof\tthe\tailed\tbody,\tthe\tdismissal\tof\tsymptoms\tthat\tcannot\tbe\tquantified,\tand\tthe\tdynamics\tof\tthe\tdoctor-patient\trelationship.\tGreenhalgh\tdiscusses\tthe\tinfluence\tof\tpower\tin\tdoctor-patient\tdynamics\tand\thow\tthis\tmay\thinder\tcommunication,\tand\targues\tthat\teach\tof\tthose\taspects\tconstitute\tconstraints\tof\tbiomedical\tsystems\tto\tcater\tfor\tpatients\twith\tundefined\tchronic\tillnesses\t(2001).\t\tA\tvery\tinteresting\tand\tappropriate\tnotion\tput\tforward\tby\tOverend\t(2014)\tin\tregards\tto\tundefined\tillnesses,\tand\thow\tthey\taffect\tsufferers,\tis\tthat\tof\ta\t‘ghost’.\tOverend\targues\tthat,\tdue\tto\tthe\t“empirical\ttruths”\tthat\tmodern\tmedicine\tsearches\tfor,\tillnesses\twith\tunclear\tpathologies\tbecome\tghosts\tthat\thaunt\tboth\tthe\tbody\tof\tthe\tsufferer\tand\tthe\tbiomedical\tpractice\t(2014:\t63).\tThe\tghosts\tof\tsuch\tillnesses\t“call(s)\tinto\tquestion\tthe\tlimits\tof\tmodern\tbiomedicine”\t(Overend,\t2014:\t64)\tnot\tonly\tby\tvirtue\tof\tthe\tmissing\t“empirical\tdiagnosis”\t(p.\t70)\tbut\talso\t“the\tability\tto\taccount”\tand,\tI\tadd,\trecount\t“for\tall\tthose\tillness\texperiences\tthat\tfall\toutside\tbiomedicine\tapproaches\tto\tthe\tsign,\tsymptom\tand\tpathology\tof\tillness”\t(p.\t63).\t\tThe\tnotion\tof\ta\tghost\thaunting\tthe\tbody\tis\tvery\trelevant\tto\tendometriosis\tgiven\tthat\tthe\tdisease\tpossesses\tsome\tof\tthe\tcharacteristics\tof\tthe\t‘ghost’\toutlined\tby\tOverend\t(2004).\tThe\tinvisibility\tand\tlack\tof\tdefined\tlocality\tof\tendometriosis\tmay\tpose\ta\tchallenge\tto\tthe\t“knowledge\tframes\tof\tbiomedicine”\t(Overend,\t2014:\t75)\twhen\ttrying\tto\tunderstand\tthe\tmechanisms\tof\tthe\tpain\tbeing\tdescribed\tby\tpatients\twhen\tsuch\taccounts\tdo\tnot\tcomply\twith\texpected\tapproaches\tto\tillness,\tpain\tin\tparticular,\tand\tto\tsymptoms\trecall.\tThis\twould\texplain\tthe\tfrequent\tcases\tof\tmisdiagnosis\tof\tendometriosis\tpain\t(e.g.\tas\tUTIs,\tSTDs,\tetc.)\tfound\tby\tprevious\tstudies\t(Bullo,\t2018;\tSeear\t2009),\twhere\tendometriosis\tbecomes\ta\tsuspect\tillness\tby\ta\tprocess\tof\telimination\tbefore\twomen\tare\tgranted\taccess\tto\tdiagnostic\ttreatments,\ttherefore\tprolonging\tdelays.\t\tWhen\tit\tcomes\tto\tthe\tactual\taccounts\tof\tpain\tby\tpatients,\tthe\tpain\trelated\tliterature\tinvariably\taddresses\tthe\tissue\tof\tthe\tsubjectivity\tof\tthe\tpain\texperience\tand\tthe\tdifficulty\tin\tcommunicating\tpain\t(e.g.\tSchott,\t2004),\tincluding\tendometriosis\tpain\t(e.g.\tWhelan,\t2003).\tThe\tIASP\tadvises\tthat\t“the\tinability\tto\tcommunicate\tverbally\tdoes\tnot\t\n\n 6 \nnegate\tthe\tpossibility\tthat\tan\tindividual\tis\texperiencing\tpain…pain\tis\talways\tsubjective”\t(1994:\tonline).\tSchott\tpoints\tto\tthe\tparadox\tthat\t“attempts\tto\ttruly\tdescribe\tpain\tindeed\tappear\tas\tdifficult\tas\tthey\tare\tfrustrating,\tyet\tthe\tneed\tto\tcommunicate\tis\toverwhelming”\t(2004:\t210).\tSchott\t(2004)\talso\tdiscusses\tthat\tthe\tinvisibility\tand\tunfamiliarity\tof\tsensations\tcaused\tby\tdifferent\ttypes\tof\tpain\thave\tan\timpact\ton\tthe\tability\tto\tcommunicate\tpain.\tNociceptive\tpain,\tbeing\tlargely\tvisible\tand\tfamiliar,\tas\tmost\tpeople\thave\texperienced\tburns,\tcuts,\tetc.,\tcan\tbe\tconveyed\twithout\tmuch\tdifficulty.\tIn\tcontrast,\tchronic\tand/or\tneuropathic\tpain\tare\tmore\t“removed\tfrom\tmost\tpeople’s\texperience”\t(Schott,\t2004:\t209),\twhich\ttherefore\tposes\ta\tchallenge\twhen\tit\tcomes\tto\tdescribing\tand\tqualifying\tthese\ttypes\tof\tpain.\tThere\tare\tnormally\tno\tvisible\tsigns\tof\tphysical\tdamage\tthat\tcan\tindicate\texplicitly\tthe\tmechanism\tof\tchronic\tand/or\tneuropathic\tpain.\tPain\ttherefore\tbecomes\talmost\ta\tghost\tthat\thaunts\tthe\tbody\t(Overend,\t2014).\tGiven\tthe\tlack\tof\tphysical\tvisibility\tof\tpain\twith\tthese\tcharacteristics,\tsufferers\tare\tforced\tto\trely\ton\tlanguage\ttools\tto\texternalize\ttheir\tinternal\texperience\t(Lascaratou,\t2007).\tThe\texperience\tof\tpain,\thowever,\tmay\tnot\tonly\texceed\tphysical\tboundaries\tbut\tmay\talso\tmake\tsufferers\tstep\tinto\timaginative\tlinguistic\tframeworks,\tleading\tto\ta\treliance\ton\timagery\t(e.g.\tGosden,\tet\tal.,\t2014)\tand/or\tmetaphorical\tlanguage\t(e.g.\tSchott,\t2004)\tto\tcommunicate\tinternal\tpain\texperience/s.\tIn\tfact,\tthe\tIASP’s\tdefinition\tof\tpain\thints\tat\tthe\tsubjectivity\tof\tthe\tphenomenon\tas\t“an\tunpleasant\tsensory\tand\temotional\texperience\tassociated\twith\tactual\tor\tpotential\ttissue\tdamage,\tor\tdescribed\tin\tterms\tof\tsuch\tdamage”\t(1994:\tonline).\t\tThe\tboundary\tbetween\treal\tand\timaginary,\tthe\tsensory\tand\tthe\temotional,\tthen\tbecomes\ta\tchallenge\tfor\tsuccessful\tpain\tcommunication\tto\ttake\tplace\twhen\tmetaphorical\tlanguage\tis\tused.\tBy\tcommunication,\tI\tmean\tnot\tonly\tthe\tmere\tact\tof\twomen\tdescribing\ttheir\tpain\texperience\tbut\talso\tthe\tinterpretation\tof\tthe\tmessage\tby\tdoctors\tin\ta\tcommunicative\tsituation\twhere\tcodes,\tcontextual\tand\tsocio-interactional\telements\tregulate,\tand\tconstrain,\tthe\tinteraction\thence\tpotentially\tconfounding\tsuccessful\tcommunication\t(Jacobson,\t1960).\tThe\tlocus\tof\teffective\tcommunication\tvia\tco-construction,\tin\tJacobson’s\t(1960)\tterms,\tsits\tin\tthe\tliminal\tspace\tbetween\tthe\trecognition\tand\tuse\tof\ta\tshared\tset\tof\tcommon\tprinciples\tfor\taccessing\tand\tcollaboratively\tco-constructing\tmeaning\tvia\ta\tshared\tcode.\tThe\tchallenges\tfaced\twhen\tcommunicating\tendometriosis\tpain\tare\tworth\tinvestigating\tgiven\tthat\ta\tmismatch\tin\tassumptions\twhere\tnuance\tof\tcode,\ti.e.\tmetaphorical\tlanguage,\tis\tbeing\tused,\texacerbated\tby\tthe\tincreasing\tpotential\tfor\tbeing\tunable\tto\tdecode\tmetaphor\tusages\tin\tpain\tdescriptors\toutside\tthe\texpected\tframes\tof\tknowledge\t(Overend,\t2014),\tcan\tthen\tgive\trise\tto\tmiscommunication,\tpotentially\tresulting\tin\tless\tthan\tadequate\tor\tappropriate\tcare.\tThis\tmay,\tin\tturn,\taffect\twhether\tsufferers\tare\treferred\tfor\tdiagnostic\ttreatment\tin\ta\ttimely\tfashion.\t\t\tConceptual\tmetaphor\ttheory\tand\tpain\tBuilding\ton\tthe\tIASP’s\t(1994)\tdefinition\tof\tpain,\toutlined\tabove,\tthat\tdiscusses\tthe\tdescription\tof\tthe\tphenomenon\tin\tterms\tof\ttissue\tdamage\t[my\temphasis],\tSemino\t\n\n 7 \n(2010)\tpoints\tout\tthat\tmany\tpain\tdescriptors\tare\tused\tmetaphorically\t“when\tthey\tconvey\tpain\texperiences\tthat\tdo\tnot\tdirectly\tresult\tfrom\tphysical\tdamage”\t–\tfor\texample,\tthe\tuse\tof\tthe\tmetaphor\t‘stabbing’\tpain\tto\trefer\tto,\tsay,\tmigraine\tpain\t(pp.\t205).\t\tThe\tdescription\tof\ta\tperceived\tsubjective\tor\tabstract\tconcept\tin\tterms\tof\tanother\tis\tthe\trealm\tof\tconceptual\tmetaphor\ttheory\t(CMT)\tin\tcognitive\tlinguistics.\tIn\tCMT,\tan\tabstract\tentity,\tor\tconceptual\tdomain,\tsuch\tas\t‘love’\t(i.e.\ttarget\tdomain)\tis\tunderstood\tor\tdescribed\tin\tterms\tof\tanother,\tmore\tfamiliar\tand\tembodied,\tsensation\tsuch\tas\t‘journey’\t(i.e.\tsource\tdomain).\tThis\tis\tmanifested\tin\tmetaphorical\texpressions\tsuch\tas\t‘it’s\tbeen\ta\tbumpy\troad\tfor\tour\trelationship’,\twhich\tdemonstrates\tthat\tthe\tabstract\tnotion\tof\tlove\tis\tunderstood\tas\ta\tjourney.\tTherefore,\t‘love\tis\ta\tjourney’,\tas\ta\tconceptual\tmetaphor,\tis\ta\tway\tof\tthinking\tthat\tis\tmanifested\tlinguistically\tin\texpressions\tthat\tcontain\tlinguistic\tmetaphors\tsuch\tas\t‘to\tbe\ton\ta\tbumpy\troad’\tor\t‘to\tbe\tat\ta\tcrossroads’\twhen\treferring\tto\ta\trelationship\t(Lakoff\tand\tJohnson,\t1980).\t\tA\tparallel\tconcept\tto\tmetaphor,\tusually\tin\tplace\tin\tdescriptions\tof\tpain,\tis\tthat\tof\tsimile.\tSemino\tdefines\tsimile\tas\t“an\texplicit\tstatement\tof\tcomparison\tbetween\ttwo\tdifferent\tthings,\tconveyed\tthrough\tthe\tuse\tof\texpressions\tsuch\tas\t‘like’,\t‘as’,\t‘as\tif’\tand\tso\ton”\t(2008:\t16).\tAn\texample\tof\tsimile\tin\tthe\tdescription\tof\tendometriosis\tpain\tis\t‘[it]\tfeels\tas\tif\tI\tam\tbeing\tstabbed\tby\ta\tlong,\tsharp\tknife’.\tSimiles\tare\tmetaphors\tin\tthat\tthey\tcompare\tone\tconcept\tin\tterms\tof\tanother.\tHowever,\tsimiles\tuse\texplicit\tcomparative\tdevices\t(e.g.\t‘like’),\twhich\tcould\tbe\tindicative\tof\ta\tmore\tpurposeful\tchoice\tthan\tthe\tunderstanding\tof\tone\tconcept\tin\tterms\tof\tthe\tother,\tas\tin\tthe\tcase\tof\tconventionalized\tmetaphors.\t\t\tWhen\treferring\tto\tmetaphors\tor\tsimiles\tused\tto\tdescribe\tpain,\tSemino\t(2010)\tpoints\tout\tthat\tneuropathic\tor\tchronic\tpain\tcan\tbe\tseen\tas\ta\ttarget\tdomain\tgiven\tits\tabstract\tnature,\twhich\tmakes\tit\tdifficult\tto\texplain\tusing\tconcrete\tand\tliteral\tlanguage.\tPain,\thowever,\tis\talso\tan\tembodied\texperience\twhen\tit\toccurs\tin\tits\tnociceptive\tform\tas\ta\tdirect\tresult\tof\ttissue\tdamage,\tas\tin\tthe\tcase\tof\ta\tbroken\tleg\tdiscussed\tabove\tor\tin\tthe\tcase\tof,\tsay,\ta\tstab\tor\ta\tburn,\tas\talso\tpointed\tout\tby\tSchott\t(2004)\tdiscussed\tabove.\tSemino\t(2010)\targues\tthat,\tin\tcases\tof\tneuropathic\tor\tchronic\tpain,\tpain\tcaused\tby\tphysical\tdamage\tbecomes\ta\tsource\tdomain\t(i.e.\ta\tmore\tconcrete\tor\tembodied\texperience)\tand\tis\thence\tused\tto\texplain\tthe\tmore\tabstract\tneuropathic\tor\tchronic\tpain.\tThis\tcan\tbe\tseen,\tfor\texample,\tin\tthe\tcase\tof\tthe\tdescription\tof\tmigraine\tpain\t(neuropathic)\tas\t‘stabbing’,\twhich,\twhen\tused\tliterally,\trefers\tto\tnonciceptic\tpain.\tTherefore,\tshe\targues\tthat\t“different\ttypes\tof\tpain\t(.)\tare\toften\tconveyed\tvia\texpressions\tthat\tevoke\tdifferent\tkinds\tof\t(causes\tof)\tphysical\tdamage”\tand\tadds\tthat\t“this\ttendency\tmay\tbe\texplained\tas\tan\tattempt\tto\tenable\tothers\tto\texperience\tsomething\takin\tto\tthe\tsufferer’s\town\tsensations”\t(2010:\t207).\tThis\tview\talso\thints\tat\tthe\timportance\tof\tthe\tinterlocutor\tin\tunderstanding\tthe\tembodied\texperience\tof\tphysical\tdamage\tand\ttherefore\tacknowledges\tthe\tneed\tfor\ta\tshared\tcode\tto\tbe\tat\tinterplay\tin\tthe\tco-construction\tof\tmeaning,\tas\tput\tforward\tby\tJacobson\t(1960)\taddressed\tabove.\tSemino\t(2010:\t210)\tcategorized\tover\t70\tone-word\tpain\tdescriptors\tfound\tin\tthe\tstandard\tMcGill\tPain\tQuestionnaire\talong\twith\ta\tsample\tof\tcollocates\tof\tthe\tword\tpain\tin\tthe\tBritish\tNational\tCorpus\tof\tEnglish1\tand\tfound\tthat\tmore\tthan\ta\tthird\tof\tthe\tdescriptors\tand\tcollocates\tfell\tunder\tthe\tcauses\tof\tphysical\tdamage\tsource\tdomain.\t\n\n 8 \nFrom\tthis,\tshe\tderived\ta\ttaxonomy\tfor\tthe\tclassification\tof\tmetaphorical\texpressions\tused\tto\ttalk\tabout\tpain\tthat\tevoke\tdifferent\tkinds\tof\tphysical\tdamage.\tIn\tother\twords,\tmetaphors\tfor\tphysical\tdamage\tare\tused\tto\ttalk\tabout\tpain\tthat\tis\tnot\tcaused\tby\tsuch\tdamage\tbut\tby\tsome\tform\tof\ttissue\tdamage\t(normally\tnoncipetive\tpain),\twhich\tis\tdifficult\tto\tdescribe\tin\tterms\tother\tthan\tmetaphorical\texpressions.\tAmong\tthese,\twe\tfind\tphysical\tdamage\tcaused\tby\t(1)\t‘insertion\tof\tpointed\tobjects’\t(e.g.\tdrilling);\t(2)\t‘application\tof\tsharp\tobjects’\t(e.g.\tstabbing);\t(3)\t‘pulling\tor\ttearing’\t(e.g.\twrenching);\t(4)\t‘a\tmalevolent\tanimate\tagent’\t(e.g.\ttorturing);\t(5)\t‘extreme\ttemperature’\t(e.g.\tsearing);\tetc.\t\tIn\tthis\tarticle,\tI\tpose\tthat\tendometriosis\tpain,\tgiven\tits\tabstract,\tinvisible\tand\tunfamiliar\tcharacter,\tis\tnormally\tdescribed\tin\tmetaphorical\tways.\tI\tuse\tSemino’s\ttaxonomy\tas\tsuperordinate\tmetaphors\tand\tI\tcodify\tmanifestations\tof\tthese\tmetaphors\tin\tthe\tform\tof\tlinguistic\tmetaphors\tas\twell\tas\tsimiles\tin\tthe\tqualitative\tdata\tused\tfor\tthis\tstudy.\tSo,\tfor\texample,\tthe\tconceptual\tmetaphor\tpain\tas\tphysical\tdamage\tis\tmanifested\tin\tthe\tdata\tin\tthe\texpression\t‘stabbing\tpain’\tas\twell\tas\tin\tthe\tsimile\t‘[it]\tfeels\tas\tif\tI\tam\tbeing\tstabbed\tby\ta\tlong,\tsharp\tknife’.\t\t\tData\tand\tmethods\tIn\tthis\tarticle,\tI\texplore\tendometriosis\tpain\tcommunication\tchallenges\tby\tinvestigating\t(1)\twhat\tchallenges\tare\tassociated\twith\tpre-diagnosis\tendometriosis\tpain\tcommunication\tduring\tearly\tmedical\tinteractions,\tand\t(2)\thow\tendometriosis\tpain\tis\tconceptualized\tand\tcommunicated.\tThe\tarticle\talso\taddresses\tthe\timplications\tof\ta\tlinguistic\tapproach\tfor\tendometriosis\tpain\tcommunication\tpractices\tin\tearly\tconsultation\tstages\tto\tpotentially\tcontribute\ttowards\ttackling\tthe\tlengthy\tdiagnosis\tdelay.\t\tA\tmixed-method\tinternet-based\tpain\tcommunication\tquestionnaire\twas\tdevised.\tThe\tfirst\tpart\tof\tthe\tquestionnaire\taimed\tto\testablish\twhether\tthe\twomen\tsampled\tfound\tit\tchallenging\tto\tcommunicate\tpain\tin\tearly\tconsultations\tand\twhether\ta\tlink\tbetween\tsuch\tchallenges\tand\tdiagnosis\tdelay\tcould\tbe\tseen\tin\tthe\tdata,\twhich\tmay\ttherefore\tcorroborate\tqualitative\tfindings\tof\tearlier\tstudies\thinting\tat\tthis\tlink,\tas\tmentioned\tabove\t(e,g,\tBullo,\t2018;\tSeear,\t2009).\tThe\tquestions\tasked\tat\tthis\tstage\tenquired\tabout\tthe\tdiagnosis\tlength\tof\tthe\tparticipants;\twhether\tthey\texperienced\tdifficulties\tcommunicating\tpain\tto\tdoctors\tduring\tconsultations;\twhether\tthey\tfelt\tdisbelieved\tabout\tthe\tseverity\tof\ttheir\tpain\tand\twhether\tthey\tconsidered\tthat\ttools\tfor\tpain\tdescription\twould\tbe\tof\thelp\tduring\tconsultations.\tThe\tmain\tpart\tof\tthe\tquestionnaire\thad\topen-ended\tquestions\tthat\tasked\tparticipants\tto\tdescribe\thow\ttheir\tpain\tfeels\tand\twhat\tthey\tconsidered\tdoctors\tcould\tdo\tto\thelp\tthem\tovercome\tthe\tchallenges\tof\tendometriosis\trelated\tpain\tcommunication.\t\tThe\tquestionnaire\twas\tdistributed\tvia\tThe\tLanguage\tof\tEndometriosis’\tsocial\tmedia\tplatforms2.\tParticipants\twere\tUK-\tand\tIreland-based\tfollowers\tof\tour\tsocial\tmedia\t\n\n 9 \nplatforms.\tThe\tLanguage\tof\tEndometriosis\thas\t535\tTwitter\tfollowers\tand\t260\tFacebook\tfollowers.\tA\ttotal\tof\t150\tresponses\twere\treturned;\t131\tresponses\tanswering\tall\tquestions\twere\tused\tfor\tanalysis.\t\tThe\tresponses\tto\tthe\tfirst\tpart\tof\tthe\tquestionnaire\twere\tanalyzed\tusing\tbasic\tdescriptive\tstatistical\ttools\t(cf.\ttable\t1).\tAnswers\tto\tthe\tsecond\tpart\twere\tcoded\tin\trelation\tto\tthe\tmetaphorical\tmeaning\tof\tpain\tdescriptors\t(cf.\ttable\t2)\tand\talso\tcategorized\tthematically\t(cf.\ttable\t3)\tby\tarea\tof\tcommunication\tchallenges\tidentified.\t\tIn\torder\tto\tidentify\tmetaphors\tsystematically,\tI\tdeployed\tthe\trenowned\tMetaphor\tIdentification\tProcedure\t(MIP)\tdesigned\tby\tthe\tPragglejaz\tGroup\t(2007).\tThis\tconsists\tof\testablishing\ta\tcontrast\tbetween\tthe\tcontextual\tmeaning\tof\tan\texpression\t(e.g.\tstabbing\tpain)\twith\tthe\tbasic\tmeaning\t(e.g.\tstab\t[v]:\tto\tinjure\tsomeone\twith\ta\tsharp\tpointed\tobject\tsuch\tas\ta\tknife\t[Cambridge\tDictionary\tonline,\t2018]).\tIn\tcases\tof\ta\tmismatch\tor\tcontrast\tbetween\tthe\tcontextual\tand\tthe\tbasic\tmeaning,\tthe\tmetaphorical\tmeaning\tis\tderived.\tFollowing\tthis,\tusing\tan\tadapted\tversion\tof\tSemino’s\t(2010)\ttaxonomy\toutlined\tabove,\tI\tcategorized\tthe\tmetaphorical\tpain\tdescriptors\tidentified\taccording\tto\tthe\tpain\tas\tphysical\tdamage\tsuperordinate\tmetaphor.\tFor\texample,\tI\tlook\tat\t‘stabbing\tpain’\tas\ta\tmetaphorical\texpression\tthat\tconstitutes\ta\tdirect\tlinguistic\tmanifestation\tof\tthe\tpain\tas\tphysical\tdamage\tsuperordinate\tmetaphor\tand\tthe\t‘pain\tvia\tthe\tinsertion\tof\tsharp\tobjects’\tsubtype.\tIn\tthe\tcase\tof\tsimiles,\tI\talso\tlook\tat\tthe\tfull\tdescriptive\textract\tas\ta\tlinguistic\tmanifestation\tof\tsuch\tsuperordinate\tmetaphor\tmanifested\tas\tsimiles\t(i.e.\tsignaled\tby\t‘like’\tor\t‘as\tif’),\tfor\texample,\t‘I\tfeel\tlike\tI\tam\tbeing\tstabbed\twith\ta\tsharp\tknife’.\t\t\tFindings\t\tEmerging\tpatterns\tof\tpain\tmis/communication\tThe\tfindings\tbelow\tpresents\tthe\tpositive\tand\tthe\tnegative\tresponses\tto\tthe\tbackground\tquestions\tasked\tin\tthe\tfirst\tpart\tof\tthe\tsurvey\twhich\taim\tto\tprovide\ta\tquantitative\tcontext\tto\tthe\tareas\tof\tperceived\tmiscommunication\texplored\tqualitatively\tbelow.\tPercentages\tof\trespondents\tare\tgiven\tnext\tto\tthe\tnumber\tof\tresponses.\tThese\thave\tbeen\tcross-referenced\twith\tthe\taverage\tdiagnosis\tlength\tfor\tall\tparticipants\tfor\tfurther\tinformation.\t\t131\t Average\tdiagnosis\tlength\tYes\t/\tNo\tN\t%\tPain\tdescription\tdifficulty\t 9.7\t Y\t111\t85%\t7.4\tN\t19\t15%\tPerceived\tdisbelief\t 9.6\t Y\t117\t89%\t7.6\tN\t11\t8%\tPerceived\tneed\tfor\tpain\tdescription\ttools\t\t 9.2\t Y\t110\t84%\t8\t N\t3\t2%\tTable\t1:\tPain\tcommunication\tby\taverage\tdiagnosis\tdelay\t\n\n 10 \n\tThe\tdata\tpresented\tshows\tthat\ta\thigh\tpercentage\tof\twomen\tclaim\tto\thave\texperienced\tdifficulties\tdescribing\tpain\tduring\tpre-diagnosis\tmedical\tinteractions\t(85%),\tto\tfeel\tdisbelieved\tas\ta\tconsequence\tof\tsuch\tdifficulty\t(89%),\tand\tthat\ttools\tfor\tpain\tdescription\twould\thave\tbeen\tof\thelp\tduring\tconsultations\t(84%).\tThe\tdata\talso\tindicates\tthat\tdiagnosis\tdelay\tin\twomen\twho\tclaimed\tsuch\tchallenges\twas\thigher\tthan\tthose\twho\tresponded\tnegatively.\t\tIt\tis\tworth\tpointing\tout\tthat,\tgiven\tthe\tsize\tof\tthe\tsample,\tthese\tfindings\tcannot\tbe\ttaken\tas\trepresentative\tof\tthe\tgeneral\texperience\tof\twomen\twith\tendometriosis.\tFurther\tstudies\twith\ta\tlarger\tsample\twould\tbe\trequired\tto\tbe\table\tmake\tgeneralizations\tand\tto\tascertain\ta\tmore\treliable\tconnection\tbetween\tpain\tdescription\tand\tdiagnosis\tdelay.\tIt\tis\talso\timportant\tto\tnote\tthat\tthis\tstudy\tdoes\tnot\tclaim\tthat\tthe\tchallenges\treported\tare\tnecessarily\tdirectly\tresponsible\tfor\tthe\ttwo-year\tdifference\tin\tthe\tdiagnosis\tdelay\tidentified\tbetween\twomen\twhose\tresponse\twas\tpositive\tand\tthose\twhose\tresponse\twas\tnegative.\tThat\tis\tbeyond\tthe\tremits\tof\tthe\tcurrent\tstudy.\tEven\tif\tthe\tsample\thad\tbeen\tlarger,\tit\twould\tstill\tbe\tproblematic\tto\tmake\tsuch\tclaims\twithout\tfurther\tethnographic\tstudy\tperhaps\tdocumenting\tactual\tconsultations\tand\ttheir\tinteractional\tcharacteristics.\tFurther\tto\tthis,\tsome\tresearchers\tmay\tnot\tconsider\ta\ttwo-year\tdifference\tin\tdiagnosis\tdelay\tsignificant\tenough\tso\tas\tto\tgrant\timportance\tto\tthe\tissues\tof\tpain\tcommunication\tI\traise\tin\tthis\tarticle.\tHowever,\tit\tis\tworth\tremembering\tthat\tan\tadditional\ttwo\tyears\tof\tundiagnosed\tincapacitating\tpain\tcan\trepresent\tlife-altering\tdifferences\tto\twomen\twho\tlive\twith\tthis\tcondition,\tlet\talone\tthe\tdifference\tthat\tan\tadditional\ttwo-year\tperiod\tcan\tmake\tto\tother\tassociated\tendometriosis\tissues,\tsuch\tas\tfertility.\tTherefore,\tthe\tgap\tis\tstill\tworth\tconsidering,\teven\tif\tonly\tas\tcontextual\tinformation\tin\tthis\texploratory\tphase\tas\tbackground\tto\tthe\tqualitative\tanalysis\tthat\tfollows,\twhich\tis\tthe\tmain\tpurpose\tof\tthis\tstudy\taiming\tto\testablish\tthe\tcauses\tfor\tthe\tdifficulty\tin\tdescribing\tpain\t(as\testablished\tby\t85%\tof\tthe\twomen\tsurveyed)\tand\tthe\tperceived\tdisbelief\tof\tthe\tpain\tseverity\t(as\tagreed\tby\t89%\tof\tthe\twomen\tsurveyed)\tthat\tcan\tbe\tseen\tas\tconfounding\tsuccessful\tcommunication.\tEstablishing\tthe\treasons\tfor\tthis\timpediment\tby\texploring\tthe\tways\tin\twhich\tpain\tis\tconceptualized\tand\tarticulated\tcan\tpotentially\tshed\tsome\tlight\ton\thow\tand\twhy\tthe\treported\tmiscommunication\thappens\tand\thow\ta\tlinguistic\tapproach\tcan\thelp\taddress\tthis\tissue\tof\tdelayed\tdiagnosis.\t\tWays\tof\tconceptualizing\tand\tarticulating\tpain\telicited\tIn\tthis\tsection,\tI\tpresent\tan\tanalysis\tof\tthe\tdescriptions\tof\tendometriosis-related\tpain,\tas\toutlined\tby\tparticipants\twho\twere\tdiagnosed\twith\tendometriosis\tan\taverage\tof\t8.6\tyears\tafter\tfirst\tconsulting\tdoctors\tfor\tmenstruation-related\tpain.\tAll\t131\tresponses\twere\tcollated\tand\tanalyzed\tusing\tthe\tMIP\tprocedure\toutlined\tabove.\tThe\tdata\tcollated\tindicates\tthat\tthe\tmajority\tof\tpain\tdescriptions\tare\tmetaphorical\tin\tnature,\tdeploying\teither\texpressions\tcontaining\tmetaphors\tor\tsimiles.\tThe\tmetaphorical\texpressions\tfall\tunder\tthree\tcategories:\t(i)\tpain\tas\tphysical\tdamage;\t(ii)\tpain\tas\tphysical\tproperties\tof\telements;\t(iii)\tpain\tas\ta\ttransformative\tforce.\t\t\n\n 11 \nThese\tare\texplained\tbelow\twith\tillustrative\texamples\tfrom\tthe\tdata\tpresented\tin\ttable\t3.\t\tMetaphor\tfor\tpain\t\tSample\tpain\tdescriptors\t\tType\tand\tdescription\tPain\tas\tphysical\tdamage\t(a)\tA\tsharp\tstabbing\tpain\tthat\twon’t\tgo\taway\t Metaphor:\tPain\tas\tphysical\tdamage\tcaused\tvia\tthe\tinsertion\tof\tsharp\tobjects\t(Semino,\t2010)\t(b)\tit’s\tlike\tsomeone\tsqueezing\tyour\tinsides\t\t Simile:\tPain\tas\ta\tmalevolent\tagent\tperforming\tactions\tthat\tcause\tphysical\tdamage\t\t(c)\tlike\tsomeone\tputting\ta\tknitting\tneedle\tthrough\tfront\tto\tback,\tjust\tstraight\tthrough,\tlike\tsomeone’s\tcutting\tyou\t\nSimile:\tPain\tas\ta\tmalevolent\tagent\tusing\tobjects\tto\tcause\tphysical\tdamage\t\t(d)\tIt\tfeels\tlike\tbeing\ttattooed\ton\tthe\tinside\tPain\tas\tphysical\tproperties\tof\telements\t\t (e)\tSometimes\tit\tfeels\tas\tthough\tI\thave\tball\tin\tblown\tup\tinside\tmy\tstomach…\t Simile:\tpain\tis\takin\tto\tvolume\t\t\tthat's\tready\tto\tburst…\tPain\tis\takin\tto\tpressure\t\tMy\tuterus\tfeels\theavy\tPain\tis\takin\tto\tweight\t(f)\tI\talso\tget\ta\tsearing\thot\tpain\tin\tmy\tovaries…\t\t Metaphor:\tpain\tas\thigh\ttemperature\tthat\thas\tthe\tpotential\tto\tcause\tphysical\tdamage.\t\tIt\tfeels\tlike\ta\thot\tpoker\tis\tsitting\toff\tthem\t Simile:\tpain\tis\takin\tto\thigh\ttemperature\tPain\tas\ta\ttransformative\tforce\t (g)\tI\tfeel\toutside\tof\tmy\tbrain.\tThe\tpain\tis\tso\textreme\tit\tdoesn’t\tfeel\tphysical\tanymore,\tit’s\tbeyond\thuman\tconsciousness\t\t\t\t\nContainer\tmetaphor:\twoman\tsees\therself\tas\toutside\tthe\tbounded\tregion\tof\tthe\tbody\tand\tbrain\tin\tan\talternative\tlocation\t\tDirectional\t/\tcontainer\tmetaphor:\thuman\tconsciousness\tis\tcentered\tin\tspace;\tpain\tdisplaces\twomen\tto\tan\talternative\tlocation\t(‘beyond’)\tperceived\tas\tunphysical\tand\tinhuman\t(h)\tit\tfeels\tlike\tI\tbecome\tpossessed\tby\tpain,\tlike\tI\tam\tsomething\telse\tthat\ttakes\tpossession\tof\tmy\tusual\tself,\tlike\tI\tam\toutside\tmy\tbody\tand\tmy\tconsciousness\t\nSimile:\tpain\tis\tmade\takin\tto\ta\tforce\tor\tagent\ttaking\tcontrol;\tcontainer\tmetaphor\t\t\nTable\t2:\tMetaphors\tfor\tpain\tand\tillustration\t\n\n 12 \n\tThe\tmajority\tof\texpressions\tused\tto\ttalk\tabout\tpain\tfound\tin\tthe\tdata\tdescribe\tthe\tquality\tof\tpain\tin\trelation\tto\tphysical\tdamage\tthat\twould\tresult\tfrom\tan\texternal\tobject\tbeing\tused\tto\tinflict\tsuch\tdamage\t(Semino,\t2010),\tas\tin\texample\t(a)\tin\ttable\t2.\tIn\tmany\tcases,\tby\tmeans\tof\tsimiles,\tpain\tis\tpersonified\tas\ta\tmalevolent\tagent\tinflicting\tpain\tby\tperforming\tactions\tthat\tcause\tphysical\tdamage\t(b,\tand\talso\tthe\tquote\tin\tthe\ttitle\tof\tthis\tarticle)\tor\tusing\tobjects\tto\tcause\tsuch\tdamage\t(c,\td).\tA\thigh\tnumber\tof\tdescriptors\tthat\tat\tthe\tbasic\tlevel\tof\tmeaning\trelate\tto\tphysical\tproperties\tof\tobjects\tare\tused\tto\trefer\tto\tpain.\tSome\tresearchers\t(e.g.\tDeignan,\tLittlemore\tand\tSemino,\t2013)\targue\tthat\tthese\tmetaphors\tcan\tbe\tseen\tas\tlinked\tto\tthe\tphysical\tdamage\tmetaphor,\tgiven\tthat\tsuch\tproperties\thave\tthe\tpotential\tto\tcause\tharm.\tIn\tthe\texamples\tin\tthe\ttable\t(e-f),\tpain\tis\tdescribed\tin\tterms\tof\tvolume\t(e),\tpressure\t(e),\tweight\t(e)\tand\thigh\ttemperature\t(f),\twhich\thelps\timpart\tnot\tonly\ta\tmeasure\tof\tthe\tquality\tof\tthe\tpain\tbut\talso\tof\tits\tintensity\tby\tvirtue\tof\tthe\tdramatic\tsense\tof\tvulnerability\tand\timpending\tdanger\tthey\tconvey.\t\tFinally,\tpain\tis\talso\tseen\tas\ta\ttransformative\tforce\tor\tprocess\twhereby\twomen\tperceive\tthemselves\tas\tshifting\tinto\ta\tdifferent\tlocation,\tstate\tor\tentity.\tIn\t(g)\tand\t(h)\tdirectional\tand\tcontainer\tmetaphors\t(‘beyond’,\t‘outside’)\tare\tdeployed\tto\tcreate\ta\tcontrast\tbetween\thumanity\tas\ta\tlocation\tand\temphasize\tthe\tperceived\tabnormality\tof\tthe\tpain.\tThe\tself\tis\ta\tmetaphorical\tmodel\tgenerally\tused\t“to\tconceptualize\tnormal\tself-control\tby\tthe\tsubject\tand\tlack\tof\tit”\t(Lakoff\t1996:\t110).\tBounded\tregions\tare\ttherefore\tseen\tas\tcontainers.\tIn\tepisodes\tof\tpain,\twomen\tperceive\ttheir\tlocation\tas\toutside\tor\taway\tfrom\tthe\tbounded\tregion\tand\thence\tlacking\tin\tself-control,\tnormality\t(Lakoff\t1996)\tor\teven\thumanity.\tSimilarly,\tin\t(h),\tpain\tis\tmade\takin\tto\tan\texternal\tforce,\tpossibly\ta\tmalevolent\tbeing\techoing\tprevious\tmetaphors,\tthat\ttakes\tcontrol\tof\tthe\tself,\twhich\tthereby\tconveys\tthe\tlack\tof\tagency\tfelt\tby\tthe\twoman\tduring\tepisodes\tof\tpain.\tThe\tdata\textracts\tin\tthe\ttable\talso\tillustrate\tOverend’s\t(2014)\tnotion\tof\thaunting;\tthe\tconceptualizations\tof\tpain\toutlined\tmake\tendometriosis\t“a\thaunting\ttrace\tof\tthe\tbarely\tvisible”\t(a-f)\tand\t“a\tpossessive\tforce\tconsuming\tthe\tbody\tit\tinhabits”\t(g-h),\twithout\tphysical\ttrace\tof\tsymptoms\tnor\tfamiliar\tor\texpected\tways\tof\tdescribing\tthem\t(p.\t63).\tAs\tsuch,\tendometriosis\tpain\tbecomes\t“a\tspecter\tof\tdeath\thaunting\tpositivist\tideals\tof\tbodily\tcertainty”\t(m-o;\tr\tbelow)\tthat,\tin\tits\tlack\tof\tvisibility\tand\tdefined\tlocation,\tchallenges\tthe\tstandard\tdiagnostic\tmethods\t(Overend,\t2014:\t63)\tin\tconsultations\tand\tways\tof\tcommunicating\tsymptoms.\tFurther\tEndometriosis\tpain\tcommunication\tchallenges\tidentified\tThe\tsurvey\talso\tasked\twhat\twomen\tconsidered\tdoctors\tcould\tdo\tto\thelp\tdescribe\tpain.\tThe\ttable\tbelow\tshows\ta\tthematic\tanalysis\tof\tthe\tresponses.\tOf\tthe\t131\tresponses,\ttwo\trespondents\tanswered\tthis\tquestion\tstating\tthat\tthey\twere\thappy\twith\tthe\tattention\tand\tresponse\tof\ttheir\thealthcare\tproviders\tand\thad\tnothing\tto\tadd.\tAnother\ttwo\tsaid\tthat\tthe\t1-10\tscale\thad\tbeen\thelpful\tand\tfour\tsaid\t‘I\tdo\tnot\tknow’.\tContrariwise,\t123\tparticipants\tanswered\tthe\tquestion\twith\tcomments\tthat\thave\tbeen\tcategorized\tas\tfollows:\t\n\n 13 \n\tCategorization\tof\tresponses\tQ5\t\tN=123\tN\t(%)\tSample\tanswers\t\nProvide\twith\ttools\tfor\tsymptoms\tand\tpain\tdescription\t(incl.\tdescriptive\tterminology,\tcharts\tand\tfemale\tanatomy\timages)\t\n48\t(39%)\t\n(i)\t‘Instead\tof\tdoing\ta\tscale\tof\tpain,\tthey\tcould\tfocus\ton\twhere\tthe\tpain\tis,\tthe\tsensations\tit\tcreates,\tand\twhat\tthe\tseverity\tis\tthroughout\tthe\tday,\tincluding\twhat\tactivities\tmake\tthe\tpain\tworse’\t(j)\t‘Locations,\ttype\t(pinching,\tpulling,\tstabbing),\ta\tbetter\tpain\tseverity\tchart’\t\nElicit\tinformation\t\t11\t(9%)\t(k)\t‘Guiding\tthe\tpatient\tthrough\tquestions’\t(l)\t‘Ask\tmore\tspecific\tquestions\tabout\tthe\ttype\tof\tpain’\t\nListen\tand\tempathize\t50\t(41%)\t\n(m)\t‘Listen\tclosely\tand\tbelieve\twhat\twe\tare\ttrying\tto\tcommunicate\tto\tthem’\t(n)\t‘Be\tmore\topen\tminded\tabout\tthe\tdifficulty\tof\tdescribing\tpain\tI\tcan’t\texplain\twell’\t(o)\t‘Take\tme\tseriously’\t\nImprove\tknowledge\tand\tinformation\tdissemination\t\t14\t(11%)\t\n(p)\t‘Have\tmore\tawareness\ton\tthe\tcondition\tand\thow\tto\ttreat\tit\t(q)\tEducate\ton\tendometriosis’\t(r)\t‘To\tactually\thave\tknowledge\tabout\tendo\tand\tnot\tjust\ttell\tme\tit’s\tnormal\tto\thurt’\tTable\t3:\tAreas\tfor\timprovement\tidentified\t\tThe\tfindings\tpresented\tin\tthe\ttable\talso\tsupport\tthose\tpresented\tin\ttable\t1\tabove.\tThe\tmost\tprominent\tresult\tis\tthat\twomen\tfeel\tthat\tare\tnot\theard\tby\tgeneral\tpractitioners\twhen\tcomplaining\tabout\tpre-diagnosis\tpain.\tThey\tfeel\tdisbelieved\tand\tperceive\ta\tgeneral\tlack\tof\tempathy.\tFurther\tto\tthis,\twomen\tindicate\tthat\ttools\tfor\tpain\tdescription\twould\tbe\tuseful\tand\teffective\tduring\tconsultations.\t\t\tDiscussion\tof\tfindings\tThe\tfindings\treported\tabove\tindicate\tthat\tmiscommunication\tin\tearly\tendometriosis\tconsultations\tis\ta\tcommon\toccurrence.\tFurther\texploration\tof\tthe\ttwo\tareas\tof\tmiscommunication\tidentified\t(difficulties\tarticulating\tof\tsymptoms\tand\tperceived\tdisbelief,\tas\treported\tby\t85%\tand\t89%\tof\twomen,\trespectively)\tindicates\ta\tconnection\tbetween\tthe\ttwo.\t\tIn\torder\tto\tgain\tan\tinsight\tinto\thow\tendometriosis\tpain\tis\tconceptualized\tand\tarticulated,\tI\ttook\ta\tlinguistic\tapproach\tto\tthe\tstudy\tof\tpain\tdescriptions,\tdrawing\ton\tconceptual\tmetaphor\ttheory\t(Lakoff\tand\tJohnson,\t1980).\tThe\tdata\tanalyzed\trevealed\t\n\n 14 \nthat\tthe\tmajority\tof\tresponses\tuse\tmetaphorical\texpressions\tto\tdescribe\tpain\tas\tphysical\tdamage\t(Semino,\t2010).\tSome\tmetaphors\tare\tconventionally\tused\t(e.g.\tstabbing\tpain),\twhilst\tsimiles\tappear\tas\tmore\tconscious\telaborations\tof\tthat\tsuperordinate\tmetaphor.\tA\tfurther\texploration\tinto\tthe\tmetaphors\tused\trevealed\tthat\tpain\tis\tconstructed\tin\tthree\tways:\t(i)\tas\ta\tcorporal\ttransgressor\tthat\tinflicts\tpain\tand\tharm\tthrough\tviolent\tacts\tand\tobjects\tthat\tcause\tphysical\tdamage;\t(ii)\tas\tphysical\tproperties\tof\tobjects\twhere\tpain\tis\tmade\takin\tto\ttemperature,\tpressure,\tweight,\tetc.\tthat\thas\tthe\tpotential\tto\tcause\tphysical\tdamage\timminently;\tand\t(iii)\tas\ta\tforce\tthat\tdistances\tthe\tsufferer\tfrom\tthe\thuman\tcondition.\tIn\tall\tcases,\twomen\tconvey\ta\tsense\tof\thelplessness\tand\tvictimhood.\t\tThe\tuse\tof\tmetaphorical\tnarratives\tfor\tthe\tdescription\tof\tpain\tbrings\tinto\tquestion\ttwo\taspects.\tFirstly,\twhy\tare\tsuch\tmetaphors\tconsistently\tused\tto\tdescribe\tendometriosis\tpain?\tSecondly,\thow\tcan\twe\tbe\tsure\tthat\tthey\tare\teffective\tin\tconveying\tthe\tcommunicative\tpurpose\tintended?\t\tStudies\tof\tillness\tand\tmetaphor,\tand\tcancer\tin\tparticular,\thave\tfound\tthat\tjourney\tand\tviolence\tmetaphors\tare\tprominent\tin\tpatients\twhen\tdiscussing\ttheir\tcondition\t(e.g.\tSemino\tet\tal,\t2017).\tSimilarly,\tBullo\t(2018)\tfound\tthat\twomen\talso\ttend\tto\tuse\tboth\tmetaphors\tin\taccounts\tof\tendometriosis\texperiences.\tI\talso\tdiscussed\thow\tphysical\tdamage\tis\ta\tcommon\tmetaphor\tto\trefer\tto\tpain\t(Semino,\t2010;\tSchott,\t2004;\tGosden,\tet\tal.,\t2014).\tThe\tCMT\ttheory\toutlined\tabove\thelps\texplain\tthat\tnon-visible\tpain,\tas\tan\tabstract\tdomain,\tis\tnormally\tunderstood\tin\tterms\tof\tpain\tcaused\tby\tphysical\tdamage\t(or\tnociceptive\tpain),\tas\ta\tmore\tconcrete\tor\texperiential\tdomain\t(Lakoff\tand\tJohnson,\t1980)\tgiven\tpeople’s\texperience\twith\tthe\tsensations\tcaused\tby\tphysical\tdamage.\tWe\tcan\talso\tunderstand\tthe\tuse\tof\tsignaling\tdevices,\tsuch\tas\t‘like’\tor\t‘as\tif’,\tin\tcases\tof\tsimiles\tas\tconscious\tattempts\tto\tcreate\ta\tpowerful\timage\tto\tconvey\tthe\tseverity\tof\tpain\tby\tvirtue\tof\tthe\thyperbolic\tvalue\tof\tthe\tmetaphorical\tnarrative\tconstructed.\t\t\tThere\thas\tbeen\textensive\topposition\tto\tthe\tuse\tof\tmetaphors\tto\ttalk\tabout\tillnesses,\tadvocating\tthe\teradication\tof\tmetaphors\tin\thealth\tcommunication\t(e.g.\tSontag,\t1979/1991)\ton\tthe\tbasis\tthat\tthe\tnegative\teffects\tthat\tcertain\tmetaphors\t(e.g.\tmilitary,\tin\texpressions\tsuch\tas\t‘aggressive’,\t‘invasion’)\tcould\thave\ton\t(cancer)\tpatients\twho\tmay\tfeel\tblameworthy\tif\tthey\tare\t‘beaten’\tby\tthe\tdisease.\tHowever,\tmore\tcontemporary\tresearchers\targue\tthat\t“metaphor\tis\ta\tubiquitous\tand\timportant\taspect\tof\tlanguage\tand\tthought,\twhich\tcannot\tbe\teradicated”\t(Demjen\tand\tSemino,\t2017:\t392).\tSimilarly,\tLoftus\tadvocates\tthat\tmetaphors\tconstitute\ta\tway\tof\tunderstanding\tand\tdealing\twith\tpain\t(2011),\tespecially\tif\tsuch\tmetaphors\tdraw\tfrom\tmeaningful\tareas\tof\tpatient’s\texperience\t(Gwyn,\t1999)\tand\tthey\thelp\tthe\tpatient\tframe\ttheir\texperience\tof\tillness\tin\tdifferent\tways\t(Demjen\tand\tSemino,\t2017).\tOverend\t(2014),\talso\tsupporting\tthe\tuse\tof\tmetaphors,\tsuggests\tthat\tthey\tcan\tbe\tespecially\thelpful\tin\tcases\tof\tundefined\tor\tinvisible\tillnesses,\tsuch\tas\tendometriosis,\tas\tthey\thelp\tmove\t“beyond\trealistic\trepresentations\tof\tillness\texperiences”\tand\t“help\tus\tto\tunderstand\tand\tarticulate\tthe\texperiences\tof\tundefined\tillness\tin\tways\tthat\tempirical\taccounts\talone\tdo\tnot”\t(p.\t66).\tDemjen\tand\tSemino\t(2017)\talso\targue\tthat\tavoiding\tthe\tuse\tof\tmetaphors\tmay\t“marginalize\tand\tpotentially\tsilence”\tthose\twho\tfind\tcertain\tmetaphors\t“motivating\tand\thelpful”\t(p.\t392).\tDemjen\tand\tSemino\tconclude\tthat\t“different\tmetaphors\twork\tdifferently\tfor\tdifferent\t\n\n 15 \npeople\tat\tdifferent\ttimes\tin\tdifferent\tcontexts.\tTherefore\tpatients\tshould\tbe\tencouraged\tand\tenabled\tto\tuse\tthe\tmetaphors\tthat\twork\tbest\tfor\tthem”\t(2017:\t395).\t\tGiven\tthat\tmeaning\tis\tco-constructed\tin\tthe\tinteraction\tbetween\tsender\tand\treceiver,\tas\tJacobson\t(1960)\tproposes,\tthe\tmain\tissue\tto\tconsider\there\tis,\thow\twomen\tcan\tbe\tcertain\tthat\ttheir\tinterlocutors\tunderstand\tthe\tuse\tof\telaborate\tmetaphorical\tnarratives\tto\tframe\tthe\texperience\tof\tpain\tand\tare\table\tto\tmake\tan\tinformed\tjudgment\ton\tthe\tsymptoms\tbeing\tdescribed.\tIn\tfact,\tthe\tsurvey\tdata\tanalyzed\tindicates\tthat\twomen\tindeed\tfeel\tdisbelieved\twhen\tdescribing\tpain\t(cf.\ttable\t1\tand\t3).\tIt\tis\ttherefore\tevident\tthat\twe\tneed\tto\texplore\tthe\tnature\tof\tthe\tdisbelief.\tAt\tthis\tstage,\tI\tcan\tonly\trely\ton\tprevious\tliterature\tas\twell\tas\treports\tby\tparticipants\t(cf.\ttable\t3)\tto\tunderstand\tthe\tnature\tof\tdoctors’\tdisbelief\tof\twomen’s\tdescriptions\tof\tpain.\tThe\tuse\tof\tmetaphorical\tlanguage\tto\taccount\tfor\tpain\texperiences\tis\tnot\tonly\ta\tlinguistic\tresource\tbut\talso\ta\twindow\tinto\thow\twomen\texperience\tand\tmake\tsense\tof\tpain,\twhich,\tat\tthe\tearly\tconsultations\tstage\thas\tan\tunknown\tsource\t–\ti.e.\tit\tis\ta\t‘ghost’\t(Overend,\t2014).\tIf\twe\tlook\tat\tthe\tmetaphorical\tdescriptions\tof\tpain\tprovided\tin\ttable\t2,\twhilst\tsome\tmay\tnot\tnecessarily\tfind\tthat\tthey\texplicitly\tdenote\tthe\tmechanisms\tof\tpain,\tthey\tare\tstill\trather\tindicative\tof\tits\tintensity\tand\tlife-altering\tnature\tby\tvirtue\tof\tthe\thyperbolic\tforce\tthat\tthe\tmetaphorical\tconstructions\tconvey.\tStill,\twomen\treport\tfeeling\tmisbelieved\tand\tdismissed.\tThis\traises\tthe\tquestion\tas\tto\twhat\thappens\tin\tthe\tinterlocutor\t(i.e.\tdoctors)\twhen\tfaced\twith\tsuch\tdescriptions.\tThat\tis,\twhether\tit\tmay\tbe\tthe\tcase\tthat\tsuch\tdescriptions,\tas\tOverend\tsuggests\t(2014),\tmay\tsubvert\tthe\tdominant\tor\texpected\tmodels\tof\taccounting\tfor\tillnesses\tand\ttherefore\tlead\tto\tminimization,\tdismissal,\tor\teven\tmisdiagnoses,\tas\twas\tthe\tcase\tin\tGreenhalgh’s\t(2001)\tand\tBaker’s\t(2005)\tstudies\treviewed\tabove.\t\tWhether\toperating\twithin\tpatriarchal\tmodels\twhich\tdelegitimize\tfemale\tpain,\tas\tthe\tliterature\tsuggests\t(e.g.\tMalterud,\t1992;\tKaler,\t2005),\tor\tperhaps\tdue\tto\tlack\tof\tadequate\teducation\tand\tawareness\tthat\tmight\tprevent\tmedical\tpractitioners\tfrom\teliciting\tthe\trequired\tinformation\tthat\twould\tshed\tlight\ton\tevidence\tof\tthe\tcondition\t(which\tmay\tindeed\talso\tshow\tevidence\tof\tthe\tformer),\tthe\tdata\tsuggests\tthat\twomen\tfind\tit\tchallenging\tto\tcommunicate\tendometriosis-related\tpain\tin\tearly\tmedical\tconsultations\tsuccessfully.\tUnsuccessful\tcommunication\tof\tendometriosis-related\tpain,\tin\tmany\tcases,\tleads\tto\tthe\tnormalization\tof\tpain\t(cf.\ttable\t3,\tlast\tentry\tin\tcolumn\t3).\tIf\twe\tconsider\tthe\tliterature\ton\tpain\tand\tmetaphor,\taccording\tto\tSchott\t(2004),\tthe\tuse\tof\tmetaphorical\texpressions\tcan\tlead\tto\ta\tnumber\tof\tissues.\tIt\tmay\tdistract\tfrom\tthe\ttype\tof\tpain\tfelt;\tit\tmay\tbe\tconsidered\tto\tbe\tof\ta\tpsychological\tnature\t(Hodgkiss,\t2000);\tit\tmay\teven\trecall\tmodels\tassociating\t‘women’s\ttroubles’\tto\thysteria\tand\tattention\tseeking\t(Wright,\t2018),\twhich\tcan\tpotentially\tlead\tto\tdismissal\tand\ttherefore\tprolonged\tdiagnosis\tdelays.\tAll\tof\tthese\tpossibilities\twere\timplied\tby\tthe\tqualitative\tdata\t(cf.\ttable\t3).\tThen\twe\tare\tback\tto\tthe\tissue\tof\tidentifying\texactly\twhat\tis\tinterfering\twith\tthe\tsuccessful\tdecoding\tof\tthe\tintended\tmessage.\tAs\testablished\tearlier,\tsuccessful\tcommunication\trelies\ton\tthe\trecognition\tand\tuse\tof\ta\tshared\tcode\tthat\tallows\tthe\tcollaborative\tco-construction\tof\tmeaning\t(Jacobson,\t1960).\tA\tmismatch\tin\tassumptions\tcan\tthen\tgive\trise\tto\tmiscommunication.\tThus,\tthe\tuse\tof\tmetaphorical\tlanguage,\toften\ta\tnecessity,\tincreases\trisks\tof\tmedical\tprofessionals\tbeing\tunable\tto\tprovide\ttheir\t\n\n 16 \nultimate\textra-linguistic\tgoal,\tthat\tis,\tthe\tbest\tand\tmost\tappropriate\tmedical\tcare\tto\tpatients\tin\tpain,\tfear,\tand\tneed.\t\tWhat,\ttherefore,\tin\ta\tseeming\tloop\tin\tthe\tcommunication\tof\tpain,\tconstitutes\tan\teffective,\tand\tbelievable,\tdescription\tof\tpain?\tConsidering\tthe\tlimited\tconsultation\ttime\tin\tsome\thealth\tsystems,\tthe\tlack\tof\teducation\tand\tawareness\ton\tendometriosis\teven\tin\tmedical\tprofessionals\t(as\tindicated\tby\tthe\tfindings\tin\ttable\t3),\tand\tthe\tfact\tthat\twe\tare\tfighting\tagainst\ta\ttendency\tto\tnormalize\tand\tdismiss\tperiod\tpain\t(cf.\ttables\t1\tand\t3),\tas\twidely\tevidenced\tby\tBullo,\t(2018),\tSeear\t(2009)\tand\tWhelan\t(2003),\thow\tcan\tthe\tpain\tdescription\tof\tpre-diagnosed\tendometriosis\tbe\toptimized\tin\torder\tto\tcontribute\ttowards\ttimely\tdiagnostic\ttreatment?\tIt\tis\tclear\tfrom\tthe\tdata\tcollected\tthat\tthe\tstandard\t1-10\tscale\talternative\tis\tsometimes\tproblematic.\tTherefore,\twhen\tprompted,\twomen\tgo\tfrom\tbeing\tspeechless\t(e.g.\t‘when\tI\tgo\tto\tthe\tdoctor,\tI\thave\tsuch\ta\thard\ttime\tarticulating\tmy\tpain\tbecause\tI\tam\tnervous\tand\tI\tfreeze’)\tto\tbuilding\ta\tquasi-sci-fi/horror\tnarrative\t(e.g.\tthe\tquote\tin\tthe\ttitle\tof\tthe\tarticle).\tWhat\tis,\tthen,\tan\teffective\tand,\tmore\timportantly,\tcollaborative\tway\tto\tcommunicate\tendometriosis\tpain?\t\t\tA\tway\tforward\tDemjen\tand\tSemino\t(2017:\t396)\tadvise\tthat\t“what\tis\trequired\tis:\tattention\tto\tone’s\town\tand\tothers’\tlanguage\tuse;\tresponsiveness\tto\tthe\tfeelings\tand\tviews\texpressed\tby\tdifferent\tlinguistic\tchoices;\tacceptance\tand\ttolerance\tof\tindividual\tvariation;\tand\tcreativity\tin\tdevising\tways\tof\tharnessing\tthe\tpotential\tof\tmetaphor\tas\ta\tresource\tfor\tindividual\texpression,\texplanation,\tsense-making\tand\tso\ton”.\tSimilarly,\tOverend\t(2014)\treminds\tus\tthat\tin\tso\tlong\tas\t‘ghostly’\tillnesses\tcontinue\tto\texist\tand\tchallenge\tempirical\tpractices\tof\tdiagnosing\tthem,\tit\tis\tparamount\tto\tdevelop\tan\tunderstanding\tof\ttheir\tintrinsic\tprohibition\tfor\tbeing\taccounted\tfor\tthat\tstops\tus\tfrom\tcoherently\tspeaking\tabout\tthem\t(Schott,\t1992).\tUnderstanding\twill\ttherefore\tenable\tthose\tsilenced\tby\tsuch\tprohibition\tto\tbe\tvisible\t“within\tpositivist\tframes\tof\tvisibility\tand\tlocatability”\t(Overend,\t2014:\t77).\tThis\tis,\tafter\tall,\twhat\tparticipants\tcall\tfor:\tempathy\t(cf.\ttable\t3).\tTo\tachieve\tthis,\ta\tgood\tstart\tmight\tbe\tnot\tto\tdismiss\tmetaphors\taltogether\tbut,\trather,\tto\tunderstand\tand\tcatalog\tthem\tin\ta\tway\tthat\tpeople\tmay\tfind\tthey\t“validate\ta\tfeeling\tor\tview\tthey\talready\thave,\tarticulate\tsomething\tthey\thave\tnot\tbeen\table\tto\texpress\tbefore,\tor\tprovide\ta\tnew\tand\thelpful\tperspective”\t(Demjen\tand\tSemino,\t2017:\t396).\tIf\twe\ttake\tthe\tphysical\tdamage\tmetaphors\tused\tto\tdescribe\tpain,\tlike\t‘stabbing’,\tit\tis\tunlikely\tthat\tmost\twomen\twho\tclaim\tto\thave\t‘stabbing\tpains’\thave\tactually\texperienced\tbeing\tstabbed\t(Schott,\t2004).\tHad\tthey\thad\tsuch\tan\texperience,\tthe\tpain\tproduced\tby\tsuch\tphysical\tharm\tmay\thave\tbeen\tdescribed\tin\ta\tdifferent\tway.\tIt\tis\trather\tthe\tassociation,\tor\tentailments\t(Kovecses,\t2002),\trelated\tto\tthe\tact\tof\tstabbing\t(e.g.\tintensity,\tdepth,\tabruptness,\tetc.),\tthat\tis,\tthe\tcontextual\tand\tassociated\tmeaning,\tto\twhich\twomen\trefer.\tTherefore,\tthe\tunderstanding\tof\tpain\tin\tterms\tof\tthe\tentailments\tassociated\tto\tthe\tact\tof\tstabbing\trelies\ton\tthe\tconventional\tassociation\tof\tsuch\tcharacteristics\tand\tentailments,\tas\tconceptual\tmetaphor\ttheory\tposes\t(Lakoff\tand\tJohnson,\t1980),\trather\tthan\tnecessarily\ton\tactual\texperience.\tAnother\tillustration\tof\tthis\t\n\n 17 \nis\tprovided\tin\ttable\t3\twhere,\twhen\tcontrasting\tthe\tmetaphorical\twith\tthe\tbasic\tmeaning\tof,\tsay\t‘I\thave\tball\tin\tblown\tup\tinside\tmy\tstomach\tthat’s\tready\tto\tburst’,\twe\tfind\tthat\tpain\tis\tdescribed\tin\tterms\tof\tvolume\tand\tpressure.\tHelping\twomen\tmap\tthese\tsensations\tto,\tsay,\tparts\tof\tthe\tbody\twhere\tthey\toccur\tand\tperiods\tof\ttime\tin\twhich\tthey\ttake\tplace,\twould\tallow\tan\tindication\tas\tto\twhether\tthe\tpain\tbeing\tdescribed\tis\trelated\tto\tendometriosis.\tTherefore,\tcollaborative\twork\tbetween\tlinguists,\tdoctors\tand\twomen\twho\tsuffer\tthis\ttype\tof\tpain,\twould\tallow\tfor\tan\tintegrated\ttoolbox\twhere\tthe\tdifferent\ttypes\tof\tmetaphors\tidentified\tabove,\tand\tothers,\tare\tmapped\tto\tdifferent\ttypes\tof\tpain\t(nonciceptive,\tneuropathic)\tand\tendometriosis\tpain\tmechanisms\t(cyclical,\tchronic,\tfunctional).\tThis\tintegrated\ttoolbox\tmight\talso\tinclude\timages,\tgestures,\tetc.\tSuch\ta\ttoolbox,\twhich\talready\thas\ta\tprecedent\tin\tthe\tform\ta\t‘metaphor\tmenu’\tfor\tcancer\tpatients\t(Semino,\t2014)\thelping\tarticulate\tpain\tin\tmore\tholistic\tway,\tshould\tbe\tmade\taccessible\tto\tprimary\thealthcare\tpractitioners\tin\torder\tto\tallow\tthe\telicitation\tof\tthe\tinformation\trequired\tto\tdetect\tsymptoms\tin\tearly\tconsultations\tso\tas\tto\trecommend\tdiagnostic\ttreatments\tin\ta\ttimely\tfashion.\tIt\tcould\talso\tbe\tmade\tavailable\tto\tschool\tnurses,\tteachers\tand\tparents\tby\tvarious\tmeans\tof\tdissemination,\tincluding\tthe\tmedia,\tin\torder\tto\traise\tawareness\tand\tknowledge\tof\tthe\tcondition,\tas\taddressed\tby\tthe\tfindings.\t\tConclusions\t\tIn\tthis\tstudy,\tI\tset\tout\tto\tinvestigate\tthe\tchallenges\tassociated\twith\tpre-diagnosis\tendometriosis\tpain\tcommunication\tduring\tearly\tmedical\tinteractions,\tincluding\tthe\tways\tin\twhich\tendometriosis\tpain\tis\tconceptualized\tand\tcommunicated.\tI\talso\texplored\tways\tin\twhich\ta\tlinguistic\tapproach\tcan\tcontribute\tto\timproving\tendometriosis\tpain\tcommunication\tpractices\tin\tearly\tconsultation\tstages.\tThe\tarticle\tquestions\tpain\tcommunication\tchallenges\tand\toffers\tsome\treflections\ton\tthe\tuse\tof\tmetaphorical\tlanguage\tin\tendometriosis\tpain\tcommunication\tpractices,\thighlighting\tthe\tvalue\tof\ta\tlinguistic\tapproach\tin\tpain\tcommunication.\tIn\tthis\tarticle,\tthrough\tan\texploration\tof\thow\tpain\tis\tdescribed,\tI\thave\tquestioned\twhat\tis\tthe\tmost\teffective\tway\tto\tdescribe\tendometriosis\tsymptoms\t(prior\tto\tdiagnosis)\tto\tgeneral\tpractitioners\twith\twhom\tlies\tthe\tpower\tof\treferral\tfor\tdiagnostic\ttreatment.\t\tThere\tare\ta\tnumber\tof\tcaveats\tthat\tshould\tbe\tnoted.\tFirstly,\tthe\tsurvey\trelied\tmostly\ton\tUK-based\tparticipants\twho\tfollow\tthe\tLanguage\tof\tEndometriosis\tproject’s\tsocial\tmedia\tplatforms.\tA\tlarger\tand\twider\tsample\twith\tmore\tinformation\tand\tdemographic\tdata\trequired\tfrom\tparticipants,\talong\twith\ta\twider\tdistribution,\twould\tbe\trequired\tto\tbe\table\tto\tdetermine\tsignificance\tand\tmake\tmore\tgeneralizable\tclaims\tso\tas\tto\tderive\tmore\tdetailed\timplications,\twhich\twas\tbeyond\tthe\tscope\tof\tthis\texploratory\tarticle.\t\tThe\tarticle\thas\talso\tindicated\ta\tnumber\tof\tfurther\tavenues\tfor\tresearch.\tThe\tconceptualizations\tof\tpain\tfound\therein\tconstitute\tan\tinteresting\tfinding\tand\tit\twould\tbe\tinteresting\tto\textend\tthe\tresearch\tto\tdifferent\tkind\tof\tpain\tcaused\tby\tdifferent\tillnesses\tor\ttypes\tof\tdamage.\tSimilarly,\tethnographic\tdata\tdocumenting\tdoctor-patient\tinteractions\tmay\tenable\tthe\tidentification\tof\tstages\tof\tmis/communication\tby\tapplying\tthe\tJacobson\t(1960)\tmodel\tin\tfull,\twhich\twould\tpotentially\tyield\tinteresting\tfindings\tand\t\n\n 18 \nmake\timportant\tcontributions\tto\thealth\tcommunication\tpractices.\tIt\tis\talso\tparamount\tthat\tgeneral\tpractitioners’\tviews\tare\tgathered\tto\tget\ta\tmore\tholistic\tview\tof\tthe\tissues\tat\tstake.\tFor\tnow,\tthough,\tthis\texploration\thas\tallowed\tsome\tinsights\ton\tan\tarea\tof\thealthcare\tthat\thas\tlong\tbeen\tneglected\tand\tit\tis\thoped\tthat\tthe\tissues\tpointed\tout\tby\tthe\tfindings\tof\tthis\tstudy\tconstitute\ta\tstepping\tstone\tin\tthe\tright\tdirection\ttowards\taccelerating\tdiagnosis\tand\tfinding\ttimely\tways\tto\ttackle\tthe\tlife-altering\tpain\tcaused\tby\tendometriosis\tuntil\ta\tmore\tpermanent\tsolution\tis\tfound.\tAcknowledgements\tI\twould\tlike\tto\tthank\tall\tparticipants\tfor\ttheir\tcontributions\tto\tthe\tsurvey.\tMy\tgratitude\talso\tgoes\tto\tthe\tproject’s\tresearch\tassistant\tZoe\tBibbon\t(née\tKent)\tfor\ther\thelp\twith\tthe\tformatting\tand\tdistribution\tof\tthe\tquestionnaire,\tand\tto\tDr\tDerek\tBousfield\tand\tLexi\tWebster\tfor\ttheir\tcomments\tand\tfeedback.\tFinally,\tI\twould\tlike\tto\tthank\tthe\tarticle’s\tpeer\treviewers\tfor\ttheir\tencouraging\tsupport\tand\tuseful\tfeedback.\t\tDeclaration\tof\tconflicting\tinterests\tThe\tauthor\tdeclared\tno\tpotential\tconflicts\tof\tinterest\twith\trespect\tto\tthe\tresearch,\tauthorship,\tand/or\tpublication\tof\tthis\tarticle.\t\tNotes\t1. Available\tfrom\thttp://www.natcorp.ox.ac.uk/corpus/\t2. 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