Lettre Apologie d’un médecin à des patients atteints de fibromyalgie

Par Amanda Shelley

J’ai des excuses à faire.

Je voudrais présenter mes excuses à tous les patients que j’ai vu dans mes années de travail en soins d’urgence qui avaient la douleur chronique due à la fibromyalgie ou d’une maladie auto-immune.

Je voudrais présenter mes excuses pour ne pas connaître, de comprendre, et dans certains cas même pas croire ce que vous traversez.

Vous voyez, en assistant médecin scolaire, un peu comme l’école de médecine, ils ne nous enseignent pas sur la façon dont ces maladies affectent la vie de nos patients. Ils ne nous disent pas épuisant qu’il a été incroyablement pour notre patient à se rendre au bureau ou qu’ils devront probablement se reposer et récupérer pendant plusieurs jours après. Ils ne nous disent pas que assis dans la chaise dans la salle d’attente mal chaque partie de votre corps qui est entré en contact avec le président, ou vos vêtements ou vos chaussures. Ils ne nous enseignent pas sur la façon dont votre famille est touchée par votre incapacité à participer dans les choses, donner des soins et de l’attention aux conjoints ou enfants, ou même faire le dîner.

Mais maintenant, je sais. Et je suis désolé.

Je sais parce que je me bats avec fibro et d’autres encore à être identifiés auto-immune problème depuis quelques années maintenant. Je sais parce que je l’ai dû apprendre à mon jeune fils comment embrasser doucement. Je sais parce que je l’ai entendu ses amis commentent combien de temps je passe au lit. Je sais parce que je ne peux plus garder physiquement de voir les patients dans un bureau (heureusement, je suis en mesure de travailler à domicile dans le domaine émergent de la télémédecine). Et je sais que ce bon vieux « brouillard fibro » fait souvent sonner comme mon téléphone est la coupe comme je lutte pour ne pas oublier les mots que je voulais dire au patient que j’essaie d’aider.

Au début, je voulais cacher mon diagnostic de mes collègues. Il y avait encore tant de fournisseurs là – bas qui ne croyait même pas fibro était un vrai désordre (je l’ habitude d’être l’ un d’entre eux). Mais au cours des deux dernières années de renvois sans escale à des spécialistes, des tests avec excentrique , mais pas de réponses claires, des essais d’un médicament après l’autre, j’ai appris que , même si la communauté médicale ouvre à la réalité que ce qui est réel, « ils » ne comprennent toujours pas.
Cela m’a frappé à nouveau il y a deux jours que je me suis assis dans un rendez – vous avec un rhumatologue qui a dit: « Je ne vois rien d’inquiétude » quatre fois au cours de notre visite. Vraiment? Vous ne pensez pas que d’ avoir à faire mon travail de mon lit quelques jours est en ce qui concerne? Vous ne pensez pas que l’isolement causé par ne pas être en mesure d’aller faire et à voir les choses avec ma famille est préoccupante?

Il est temps passé pour les fournisseurs de cesser de regarder les résultats de laboratoire et commencer à regarder l’image entière. Même si les fournisseurs n’ont pas un remède, juste une simple reconnaissance de ce que les patients vont en fait serait par un grand pas en vue de combler le fossé entre votre réalité et la mienne.

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