Du siehst mich gut, ich sehe gut aus, aber ich bin nicht gut. Von einem Patienten verfasst.

Sie sehen mich, wenn ich mich verwandelt habe. Ich schminke mich, meine Haare sind fixiert.

Ich habe alle kleinen Tricks gelernt, um meine Augen ohne unnötige Anstrengung gut aussehen zu lassen. Ich habe alle Tricks gelernt, um trotz der anormalen Krankheit normal auszusehen. Ich lächle, obwohl ich Schmerzen habe. Ich sitze schweigend, während mein Körper innerlich vor Schmerzen schreit. Ich mache es passend. Ich mache es, um mich normal zu fühlen. 

Damit andere sich nicht auf eine Krankheit konzentrieren, mit der sie nicht wissen, wie sie reagieren sollen.

Ich mache es ein für alle Mal, um so auszusehen, als wäre ich nicht krank.

Du hast meine schlimmsten Tage nicht gesehen. Weil ich mich eingeschlossen habe, verstecke ich mich vor dir. 

Damals haben mein Mann und meine Mutter sie gesehen… Weil meine Krankheit mich zwingt, zu Hause zu bleiben.

Das Letzte, was mein Körper braucht, ist, aus dem Haus zu sein, wenn schlechte Tage kommen.

Um mich unnötig mit dem Lächeln zu erschöpfen, das ich innerlich fühle, muss ich es einsetzen oder versuchen, es real aussehen zu lassen.

Ich bin also lieber in meiner kleinen Wohnung eingesperrt und schaue auf die so bekannten Wände.

Es gibt wenige Orte, an denen ich an einem schlechten Tag unterwegs wäre, noch weniger an einem schrecklichen Tag. 

Es müssen Orte sein, an denen ich mich absolut sicher fühle. Orte, an denen ich nicht erklären muss. Ich tue es nicht, weil ich mich meiner Realität schäme. Ich tue es, weil ich Schutz brauche, wenn ich verletzlicher bin.

Aber am Ende gebe ich den Leuten ein sehr verzerrtes Bild von der tatsächlichen Schwere meiner Krankheit. Sie haben mich immer noch nicht gesehen, als ich versagte, aber das bedeutet nicht, dass es nicht passiert. 

Sie haben mich unter der Dusche nie außer Atem gesehen, aber das bedeutet nicht, dass es nicht passiert. Sie haben wahrscheinlich nie das Zittern meiner Hände gesehen, noch wie mein Gesicht grau wird, wenn ich nur beim Aufatmen meinen Atem schlucke Sie sehen diese Dinge nicht, weil ich heutzutage zu Hause bin. 

Aber ich schwöre Ihnen, dass es diese Tage gibt. Ich sage das, weil es einfach ist, den Zustand einer Person anhand dessen zu beurteilen, was Sie sehen, wenn Sie bei ihr sind, aber Sie können sich nicht allein auf dieses Bild verlassen. 

Wenn Sie mich sehen, kann es Ihnen merkwürdig erscheinen, warum ich mich nicht für einen regulären Job bewerben kann. Vielleicht überrascht es Sie, warum ich mit solcher Inbrunst über meine chronische Erkrankung schreibe. Aber wenn Sie mich sehen, können Sie nicht alles sehen. 

Was Sie an einem Tag sehen, ist nicht jeden Tag. Ich versuche, normal zu sein, weil ich kein Mitleid haben möchte. Ich möchte nicht, dass meine Krankheit im Mittelpunkt der Aufmerksamkeit steht. Ich schreibe, weil ich möchte, dass die Menschen etwas verstehen nicht sichtbar. 

Ich möchte, dass sie wissen, was passiert, wenn sie mich nicht sehen, damit sie verstehen können, was mein Leben ist. Es geht nicht nur darum, mich zu verstehen, sondern auch um andere zu verstehen, die wie ich sind. Ich schreibe an die Leute, bevor sie zweimal darüber nachdenken Schlussfolgerungen nur basierend auf dem, was sie sehen.

Danke fürs Lesen!

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