Vær så snill, ikke fortell meg hvordan du skal føle når min smerte er betent.

Når jeg setter meg ned og skriver til talsmann for mine sykdommer, føler jeg dette presset at jeg alltid må være positiv. At hvis jeg ikke er, hvis jeg ikke ser de positive tingene jeg fortsatt kan gjøre, ja, jeg er ikke takknemlig eller positiv nok.

Det er kraften til stigma. Og la meg fortelle deg at jeg er lei av det.

Jeg ble ikke diagnostisert med lupus, fibromyalgi, Raynauds sykdom eller Sjogrens syndrom til jeg var 28. Men i årevis hadde jeg medisinske problemer uten å vite eller forstå hvorfor. Jeg kan ikke si at å ha svar eller diagnoser har gjort det lettere. Jeg føler at noen dager forverret ting.

Du vil tro at å ha et svar betyr å ha behandling, behandling forbedrer det, avtaler med legenes slutt, livet til slutt forandrer seg. Som noen som også har en posttraumatisk stresslidelse, har jeg dessverre lært meg bedre når jeg ble diagnostisert.

Det er ikke tilfelle med autoimmune lidelser. Jeg står fast i denne kroppen som en dag, eller i lengre tid, samarbeider, og i en måned eller så gjør det ikke noe som jeg trenger det. Jeg er skuffet Test min tålmodighet. Det skyver meg inn i et hull jeg ikke kan komme ut av. Og mange ganger er det hullet veldig mørkt.

Etter diagnosen min angret jeg personen jeg pleide å være. Jeg gjør det fortsatt. Det er enda vanskeligere å akseptere livet du trenger å tilpasse når du er i et utbrudd. Knoppene er onde for meg. Jeg vil aldri kunne forklare smerten som går gjennom kroppen min hver dag.

For tiden kan jeg ikke spise fast mat, og jeg har vært på flytende diett i mer enn en måned. Jeg har forsøkt å fortsette å gå på treningsstudioet, for hvis jeg ikke gjør det, er smerten i leddene enda verre, men selv når jeg er der, føler jeg at jeg ikke kan gjøre noe. Jeg kan ikke sove fordi jeg ligger på sengen og klager over smerten. Jeg gråter fordi jeg er alene.

Jeg er så sliten at du ikke kan forklare det for noen. Min metotrexat, som jeg tar to ganger i uken, gjør meg syk mer enn vanlig. Jeg vet ikke hvorfor. Jeg begynte å savne arbeid på grunn av det. Og det betyr at jeg er skuffende folk.

Kroppen min skuffer meg. Til gjengjeld skuffer alle andre. Til slutt er det dager da jeg ligger i sengen, og jeg kan ikke forestille meg å fortsette slik.

Jeg har uhelbredelige og smertefulle sykdommer, der behandlingene er mindre enn ideelle og er begrensede. Jeg har mistet venner fordi jeg er “for mye”. Jeg er ikke lenger vennen til menneskene jeg vil være. Mitt liv er noen ganger overhalet av medisinske avtaler og medisinske regninger.

Jeg føler at når folk spør meg hva som skjer med meg, vil de ikke høre hva det egentlig er. De vet allerede at jeg er kronisk syk. Jeg vil være slik for alltid. Så hvorfor snakke om det? Jeg føler meg irritert med andre fordi sannheten er at jeg føler meg overveldende.

Jeg har aldri bedt om å ha et smil hver dag, gå på jobb, prøv så hardt som mulig fordi jeg må sørge for at jeg beholder jobben min fordi jeg vet at jeg skal kaste bort tiden min. Hvis det ikke virker som om jeg er verdt det til kolleger og veiledere, er jeg så redd for å bli utgitt.

Jeg har aldri bedt om å føle smerte hver dag. Jeg spurte aldri om diagnostiske tester av frykt, følelsen av at jeg ventet dårlige nyheter hvert halvår at jeg gikk i mitt lokale diagnostiske senter. Jeg spurte aldri at utseendet mitt endrer seg så drastisk at noen ganger i speilet gjør at jeg vil knuse den. Jeg kan ikke stå på personen som ser på meg fordi håret mitt som jeg har mistet på grunn av behandlingen som vokser, er ikke håret mitt, og likevel kan jeg ikke få noen til å virkelig forstå hvor fryktelig det føles.

Men alle ønsker at det skal være positivt. Fordi jeg tilsynelatende skal “føle meg bedre”.

Det er ikke noe bedre Det er flare, og det er ingen brenning. Og folk trenger å forstå følelsene vi føler når vi slår på. Å ha smerte hver dag gjør noe for deg. Han spiser deg og tester deg slik at du ikke trodde du kunne bli testet.4 Og jeg er sint fordi jeg ikke ba om det.

Jeg ba ikke om å være trist om kroppen min, ikke bare for å føle meg konstant skuffet over dem, men også på grunn av folks reaksjoner på ham. Noen ganger blir jeg sint. Noen ganger blir jeg trist.

Jeg ber folk om å ikke føle at de kan diktere hvordan jeg føler eller hvordan jeg reagerer på min bluss fordi de ikke forstår hva jeg føler i min egen kropp. De kan ikke forstå depresjonen som følger med venner som mister og i siste instans føler at de er tapt på grunn av sykdommen.

I dag, og i denne måneden brenner jeg. Og til slutt er jeg i sorg. Folk må bare ha det bra med det, for det er ofte dårlig.

Vi, som et samfunn, må slutte å gå gjennom negative øyeblikk for å fylle dem med falske, falske positive anførselstegn, fulle av søte og sukkerholdige, motivert av candy som gjør at du føler deg bedre2.

109 thoughts on “Vær så snill, ikke fortell meg hvordan du skal føle når min smerte er betent.

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