Snälla, berätta inte hur du känner när min smärta är inflammerad.

När jag sätter mig ner och skriver för att förespråka mina sjukdomar, känner jag detta tryck att jag alltid måste vara positiv. Att om jag inte är, om jag inte ser de positiva sakerna jag fortfarande kan göra, ja, jag är inte tacksam eller positiv nog.

Det är kraften i stigma. Och låt mig berätta, jag är trött på det.

Jag var inte diagnosen lupus, fibromyalgi, Raynauds sjukdom eller Sjögrens syndrom tills jag var 28. Men jag hade medicinska problem i flera år, utan att veta eller förstå varför. Jag kan inte säga att jag har svar eller diagnostiskt du har gjort lättare. Jag känner mig som en del dagar gjort saken värre.

Du skulle tro att att ha ett svar betyder att ha en behandling, behandlingen förbättrar det, möten med doktorslutet, livet fortskrider äntligen. Som någon som också har en posttraumatisk stressstörning, lärde jag mig tyvärr bättre när jag diagnostiserades.

Det är inte fallet med autoimmuna störningar. Jag fastnar i den här kroppen som en dag eller för en längre tid samarbetar, och sedan i en månad eller så gör det inte något som jag behöver det. Jag är besviken Testa mitt tålamod. Det skjuter mig in i ett hål som jag inte kan komma ifrån. Och många gånger är det hålet mycket mörkt.

Efter min diagnos beklagade jag personen jag brukade vara. Jag gör det fortfarande. Det är ännu svårare att acceptera det liv du behöver anpassa när du är i ett utbrott. Knopparna är onda för mig. Jag kommer aldrig att kunna förklara smärtan som går igenom min kropp varje dag.

För närvarande kan jag inte äta fast mat, och jag har varit i en flytande diet i mer än en månad. Jag har försökt att fortsätta med att gå till gymmet, för om jag inte gör det, är smärtan i lederna ännu värre, men även när jag är där känner jag mig som att jag inte kan göra någonting. Jag kan inte sova eftersom jag ligger på sängen och klagar på smärtan. Jag gråter för att jag är ensam.

Jag är så trött att du inte kan förklara det för någon. Min metotrexat, som jag tar två gånger i veckan, gör mig sjuk mer än vanligt. Jag vet inte varför. Jag började sakna arbete på grund av det. Och det betyder att jag är besviken människor.

Min kropp gillar mig. I sin tur, nöjer alla andra. I slutändan finns det dagar när jag ligger i sängen och jag kan inte tänka mig att fortsätta så här.

Jag har obotliga och smärtsamma sjukdomar, där behandlingarna är mindre än idealiska och är begränsade. Jag har förlorat vänner eftersom jag är “för mycket”. Jag är inte längre vännen till de människor jag vill vara. Mitt liv är ibland övertaget av medicinska möten och medicinska räkningar.

Jag känner att när folk frågar mig vad som händer med mig, vill de inte höra vad det egentligen är. De vet redan att jag är kroniskt sjuk. Jag kommer att vara så här för alltid. Så varför pratar du om det? Jag känner mig irriterad med andra eftersom sanningen är att jag känner mig överväldigande.

Jag bad aldrig om att ha ett leende varje dag, gå till jobbet, försök så hårt som möjligt eftersom jag måste se till att jag håller jobbet för att jag vet att jag ska slösa bort min tid. Om det inte verkar som om det är värt det för mina kollegor och handledare är jag så rädd för att bli släppt.

Jag bad aldrig att känna smärta varje dag. Jag bad aldrig om diagnostiska tester av rädsla, känner mig som att jag väntade mig dåliga nyheter var sjätte månad som jag gick i mitt lokala diagnostikcenter. Jag frågade aldrig att mitt utseende förändras så drastiskt att det ibland ser i spegeln gör att jag vill krossa den. Jag kan inte stå den som tittar på mig eftersom mitt hår som jag förlorade på grund av den behandling som växer är inte mitt hår, och ändå kan jag inte få någon att verkligen förstå hur hemskt det känns.

Men alla vill att det ska vara positivt. För att jag uppenbarligen ska “må bättre”.

Det finns inget bättre Det finns flare, och det finns ingen bränning. Och människor behöver förstå de känslor vi känner när vi slår på. Att ha smärta varje dag gör något för dig. Han äter dig och testar dig så att du inte trodde du kunde testas.4 Och jag är arg på att jag inte bad om det.

Jag bad inte vara ledsen om mina kroppar, inte bara att känna mig ständigt besviken av dem, men också på grund av människors reaktioner på honom. Ibland blir jag arg. Ibland blir jag ledsen.

Jag ber folk att inte känna att de kan diktera hur jag känner eller hur jag reagerar på min flare eftersom de inte förstår vad jag känner i min egen kropp. De kan inte förstå depressionen som åtföljer vänner som förlorar och i slutändan känner att de förlorades på grund av sjukdomen.

Idag och denna månad brinner jag. Och äntligen är jag i sorg. Människor kommer helt enkelt att vara bra med det, för ibland är det dåligt.

Vi som samhälle måste sluta gå igenom negativa ögonblick för att fylla dem med falska, falskt positiva citat, fulla av söta och söta, motiverade av det godis som får dig att må bättre2.

96 thoughts on “Snälla, berätta inte hur du känner när min smärta är inflammerad.

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