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L’errance médicale

Qu’est-ce que c’est ?

L’errance médicale correspond au temps qui s’écoule entre l’apparition des premiers symptômes et la pose officielle du diagnostic. Elle se produit surtout lorsque l’on souffre d’une maladie chronique comme la fibromyalgie, qui ne peut être décelée par aucun examen médical actuel, ce qui implique une multiplication des examens et rendez-vous chez des spécialistes de toute sorte.

L’errance médicale peut durer quelques mois ou plusieurs dizaines d’années. C’est une période intensément éprouvante pour le patient car elle dépend intégralement des médecins vers qui il sera envoyé : si les spécialistes sont les bons, sont ouverts d’esprit et sont au courant de l’actualité médicale, l’errance médicale peut être significativement réduite.

Mais il suffit d’un seul médecin qui y mette de la mauvaise volonté, ou d’une recommandation pour un spécialiste qui n’est pas apte à analyser ce type de symptômes, et c’est tout un parcours médical qui s’écroule.

L’impacte de cette errance sur le patient

Cette longue attente, dont le corps médicale parle souvent peu, a cependant une grande incidence sur la vie des patients.

Si la maladie est « traitable », la pose tardive du diagnostic peut avoir une incidence sur les chances de guérison du malade (traitement qui ne s’utilise qu’au tout début de la maladie, etc…).

Si aucun traitement n’existe encore, les médecins auront tendance à minimiser l’importance de la pose du diagnostic en arguant que savoir de quoi l’on souffre ne nous avancera à rien dans le traitement de la douleur. Ce qu’il faut cependant comprendre, c’est que bien que le diagnostic ne soit parfois qu’un mot donné à un ensemble de symptômes pour certains, pour d’autres, ce simple mot peut avoir une incidence très positive sur le quotidien.

En effet, savoir de quoi l’on souffre peut permettre au malade d’entamer son deuil. Le deuil de sa vie d’avant la maladie, le deuil des choses qu’il ne pourra plus faire à l’avenir car la pathologie dont il souffre est incurable, etc… Bien que le terme de « deuil » soit très fort, je pense sincèrement qu’il s’agit du terme approprié pour désigner le processus d’acceptation qui suit l’annonce d’un diagnostic. Ce processus peut prendre des mois comme des années, mais est essentiel pour que le malade puisse réapprendre à s’aimer tel qu’il est et à vivre conjointement avec la maladie.

Le diagnostic : un nouvel avenir possible

Avec le diagnostic vient aussi une multitude de possibilités :

Le malade sait enfin quoi chercher. Ainsi, même si internet ne devrait pas être la principale source d’information des malades (cela devrait idéalement être le personnel médical), beaucoup de malade profiteront de la pose d’un diagnostic clair pour rechercher leur pathologie sur interneta fin d’en apprendre plus sur les symptômes, les traitement expérimentaux existant, les évolutions possibles de la maladie dans le temps, etc…

Enfin, savoir de quoi l’on souffre, c’est aussi pouvoir rejoindre une communauté de malade ou une association de soutien, cela signifie ne plus se sentir seul et bizarre mais pouvoir désormais se raccrocher à la pensée que des milliers voire des millions de personnes vivent la même chose, partout dans le monde.

Avoir un diagnostic clair, c’est être enfin capable de dire à son entourage de quoi l’on souffre. Malheureusement, beaucoup de personnes auront besoin d’un nom scientifique « officiel » pour commencer à croire en votre maladie ; pour tout simplement croire en vous. Beaucoup ont encore besoin de la validation de médecins pour commencer à penser que les malades ne sont pas fous et n’inventent pas leurs douleurs quotidiennes simplement pour le plaisir de se plaindre ou d’attirer l’attention. Cette façon de penser ne devrait pas exister et pourtant c’est ce à quoi doivent faire face énormément de malades encore en errance médicale.

Alors oui, la pose de diagnostic peut souvent apparaitre comme un simple mot utilisé pour résumer une réalité beaucoup plus complexe, mais c’est surtout un moyen de permettre aux patients de croire de nouveau en eux et en la vie. L’errance médicale tue les patients à petit feu, si pas physiquement, au moins mentalement.

Mes conseils pour limiter l’errance médicale

L’errance médicale dépend en grande partie des médecins, puisque leur diagnostic met par définition fin à l’errance médicale. Cependant, cela ne veut pas dire que le patient ne peut pas faire la différence. Ainsi :

  • Pensez à faire une liste détaillée de vos symptômes, de leur date et fréquence d’apparition et de l’évolution de votre situation personnelle et professionnelle afin que ces deux aspects puissent être facilement mis en parallèle et analysés le plus efficacement possible par votre praticien.
  • Si vous pensez qu’une spécialité est plus à même de comprendre vos symptômes, insistez autant de fois qu’il le faudra pour obtenir une lettre de recommandation de votre médecin pour une consultation chez ce spécialiste.
  • Si vous ne pouvez pas obtenir de recommandation de votre praticien, essayez d’appeler directement le secrétariat du professionnel de santé que vous visez et expliquez votre situation.
  • Si un rendez-vous avec un spécialiste s’est mal passé, demandez à en consulter un second. Plusieurs avis médicaux ne peuvent qu’être bénéfique à votre dossier médical.
  • Osez faire des recherches de votre côté, afin de proposer des pistes d’examens, ou de diagnostics. Les médecins, soit abonderont dans votre sens, soit pourront s’inspirer de vos propositions pour améliorer leur recherche de diagnostic.
  • Si vous avez l’impression de tourner en rond avec des praticiens qui ne cherchent plus activement de quelle pathologie vous pouvez souffrir, osez recommencer le processus de zéro dans une autre ville. Cela pourra vous donner l’impression de perdre du temps car vous devrez réexpliquer votre situation à beaucoup de nouveaux médecins (traitant, spécialiste, etc…) mais c’est souvent le seul moyen d’avancer dans votre parcours de diagnostic en obtenant un regard neuf de professionnels qui ne vous connaissent pas et ne risquent pas d’être biaisés par des a priori.

Un peu d’encouragements

Pour finir, bon courage à vous si vous êtes actuellement en errance médicale. Le chemin est long, éprouvant, difficile tant psychologiquement que physiquement. Vous aurez envie de baisser les bras, vous aurez l’impression d’être seul(e) à vous battre pour connaitre la vérité, vous aurez l’impression que tout est dans votre tête, que tout cela ne vaut finalement pas le coup. Tenez bon !

Au bout du chemin, même si cette errance était injuste, elle en aura valut la peine. Vous finirez par obtenir votre diagnostic et une bonne prise en charge de votre pathologie. J’en suis persuadée.

A bientôt,

La vie en fibromyalgie

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