Brev av unnskyldning fra lege til pasienter med fibromyalgi

Av Amanda Shelley

Jeg har unnskyldninger å gjøre.

Jeg vil gjerne be om unnskyldning til alle pasientene jeg så i mine år med beredskapsarbeid som hadde kronisk smerte på grunn av fibromyalgi eller en autoimmun sykdom.

Jeg vil gjerne be om unnskyldning for ikke å vite, forstå og i noen tilfeller ikke engang å tro på hva som skjer.

Du ser, ved å delta i skolelegen, akkurat som medisinsk skolen, lærer de oss ikke hvordan disse sykdommene påvirker pasientens liv. De forteller ikke at det har vært utrolig kjedelig for vår pasient å gå på kontoret eller at de sannsynligvis må hvile og gjenopprette flere dager etterpå. De forteller oss ikke at sitte i stolen i venterommet skader alle deler av kroppen som kom i kontakt med stolen, klærne eller skoene. De lærer oss ikke hvordan deres familie er påvirket av deres manglende evne til å delta i ting, ta hensyn og oppmerksomhet til ektefeller eller barn, eller til og med lage middag. Lading …

Men nå vet jeg det. Og jeg beklager

Jeg vet dette fordi jeg sliter med fibro og fortsatt andre som identifiseres som et autoimmun problem i noen år. Jeg vet fordi jeg måtte lære min lille sønn å kysse mykt. Jeg vet fordi jeg har hørt venner kommentere hvor mye tid jeg bruker i senga. 

Jeg vet fordi jeg ikke lenger kan fysisk se pasienter på et kontor (heldigvis kan jeg jobbe hjemmefra i det fremvoksende feltet telemedisin). Og jeg vet at denne gode gamle “Tåkefugl” ofte høres ut som at telefonen min var problemet, siden jeg prøver å ikke glemme ordene jeg ønsket å fortelle pasienten jeg prøver å hjelpe.

Først ønsket jeg å skjule min diagnose fra mine kolleger. Det var fortsatt mange leverandører som ikke engang trodde at fibro var en ekte katastrofe (jeg pleide å være en av dem). Men i de siste to årene med referanser til spesialister, tester med eksentriske, men ikke klare svar, bevis på et stoff etter hverandre, lærte jeg at selv om det medisinske samfunnet åpner for virkeligheten av det som er ekte, “de” fortsatt de gjør De forstår ikke  


For to dager siden ble jeg overrasket igjen at jeg satte meg på en date med en reumatolog som sa “Jeg ser ikke noe å bekymre meg for” fire ganger under vårt besøk. Seriøst? Tror du ikke på å måtte gjøre min sengs arbeid noen dager med respekt? Tror du ikke isolasjonen som skyldes at du ikke kan gå ut og se ting med familien min, er bekymringsfull?

Det er på tide for leverandører å slutte å se på laboratorieresultatene og begynne å se hele bildet. Selv om leverandørene ikke har en kur, vil bare en enkel bekreftelse av hva pasientene skal gjøre, være et stort skritt i å lukke gapet mellom deres virkelighet og mine.

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