Tu me vois bien, j’ai bonne mine, mais je ne suis pas bonne. Rédigé par un patient.

Tu me vois quand je suis transformé. Je me maquille, mes cheveux sont fixés.

J’ai appris tous les petits trucs pour que mes yeux soient beaux sans effort inutile. J’ai appris tous les trucs pour paraître normale, malgré la maladie anormale. Je souris tout en ayant mal. Je reste assis en silence alors que mon corps crie de douleur à l’intérieur. Je le fais à ma taille. Je le fais pour me sentir normal. 

Pour que les autres ne se concentrent pas sur une maladie avec laquelle ils ne savent pas comment réagir.

Je le fais une fois pour toutes, pour avoir l’air de ne pas être malade.

Vous n’avez pas vu mes pires jours. Parce que je me suis enfermé, je me cache. 

Ces jours-là, mon mari, ma mère les voient… Parce que la nature de ma maladie me force à rester chez moi.

La dernière chose dont mon corps a besoin est de sortir de la maison lorsque les mauvais jours arrivent.

Pour m’épuiser inutilement avec le sourire que je ressens en moi-même que je dois déployer, ou essayer de le rendre réel.

Alors, je ferais mieux de rester enfermé dans mon petit appartement, en regardant les murs si familiers.

Il y a peu d’endroits où je voudrais aller un mauvais jour, encore moins un mauvais jour. 

Ils doivent être des endroits où je me sens absolument en sécurité. Les endroits où je n’ai pas à expliquer. Je ne le fais pas parce que j’ai honte de ma réalité, je le fais parce que j’ai besoin de protection lorsque je suis plus vulnérable.

Mais finalement, je finis par donner aux gens une image très déformée de la gravité réelle de ma maladie. Vous ne m’avez toujours pas vue échouer, mais cela ne veut pas dire que cela ne se produise pas. 

Vous ne m’avez jamais vu à bout de souffle dans la douche, mais cela ne veut pas dire que cela ne se produise pas. Vous n’avez probablement jamais vu le tremblement de mes mains, ni la blancheur de mon visage lorsque j’avale mon souffle en me levant Vous ne voyez pas ces choses parce que je suis chez moi ces jours-ci. 

Mais je vous jure que ces jours existent. Je le dis car il est facile de juger de la condition d’une personne en fonction de ce que vous voyez lorsque vous êtes avec elle, mais vous ne pouvez pas compter uniquement sur cette image. 

Quand vous me voyez, cela peut vous sembler étrange pourquoi je ne peux pas postuler à un emploi régulier. Peut-être que cela vous surprend, pourquoi j’écris au sujet de ma maladie chronique avec une telle ferveur.Vous pouvez penser que j’exagère parce que j’aime donner pitié. Mais quand tu me vois, tu ne peux pas tout voir. 

Ce que vous voyez en une journée, ce n’est pas tous les jours.J’essaie d’être normal, parce que je ne veux pas de pitié.Je ne veux pas que ma maladie soit au centre de l’attention.J’écris parce que je veux que les gens comprennent invisible. 

Je veux qu’ils sachent ce qui se passe quand ils ne me voient pas, afin qu’ils puissent comprendre en quoi consiste ma vie.Ce n’est pas seulement pour me comprendre, mais pour comprendre les autres qui sont comme moi.J’écris aux gens d’y réfléchir à deux fois, avant tirer des conclusions basées uniquement sur ce qu’ils voient.

Merci d’avoir lu!

283 thoughts on “Tu me vois bien, j’ai bonne mine, mais je ne suis pas bonne. Rédigé par un patient.

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