Jeg har unnskyldning å gjøre.
Jeg vil gjerne be om unnskyldning for alle pasientene jeg så i mine år med beredskapsarbeid som hadde kronisk smerte på grunn av fibromyalgi eller autoimmun sykdom.
Jeg vil gjerne be om unnskyldning for ikke å vite, forstå og i noen tilfeller ikke engang å tro på hva som skjedde.
Du skjønner, medisinsk assistent skole, som medisinsk skole, har de ikke lære oss hvordan disse sykdommene påvirker livene til våre pasienter. De ikke fortelle oss som har vært utrolig stressende for vår pasient ankommer kontoret eller sannsynligvis nødt til å hvile og komme seg til neste dag. Ikke fortell oss å sitte i stolen på venterommet skader alle deler av kroppen din som tok kontakt med stolen, klærne eller skoene. De lærer oss ikke hvordan deres familie er påvirket av deres manglende evne til å delta i ting, være oppmerksom på ektefeller eller barn, eller til og med lage middag.
Men nå vet jeg det. Og jeg beklager
Jeg vet dette fordi jeg har bekjempet fibro og noen andre autoimmune problemer ennå ikke identifisert i noen år. Jeg vet fordi jeg måtte lære min unge sønn å klemme forsiktig. Jeg vet fordi jeg har hørt venner kommentere hvor mye tid jeg bruker i senga. Jeg vet dette fordi jeg ikke lenger kan fysisk se pasienter på et kontor (heldigvis har jeg vært i stand til å jobbe hjemmefra i det nye feltet telemedisin). Og jeg vet fordi den gode gamle “fibro tåken” ofte ser ut som at telefonen min blir kuttet mens jeg sliter med å huske ordene jeg ønsket å si til pasienten jeg prøver å hjelpe.
Først ønsket jeg å skjule min diagnose fra mine kolleger. Det var fortsatt mange leverandører der ute som ikke engang trodde at fibro var en ekte lidelse (jeg pleide å være en av dem). Men i de siste to årene med direkte referanser til spesialister, har tester med merkelige, men ikke klare svar, tester av en medisin etter hverandre, lært at selv om det medisinske samfunnet er åpent for realiteten at dette er ekte, “De” fortsatt ikke de forstår
Dette slo meg igjen for to dager siden da jeg satte meg på en date med en reumatolog som sa: “Jeg ser ikke noe av bekymring” fire ganger under vårt besøk. Virkelig? Tror du ikke å måtte gjøre jobben min fra min seng noen dager er bekymringsfull? Tror du ikke isolasjonen forårsaket av å ikke være i stand til å gå og gjøre og se ting med familien min, er bekymringsfull?
Det er på tide for leverandører å slutte å se på laboratorieresultatene og begynne å se på hele bildet. Selv om leverandørene ikke har en kur, vil bare en enkel bekreftelse av hva pasientene virkelig går gjennom, være et stort skritt i å lukke gapet mellom din virkelighet og min.
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