La fibromyalgie n’est pas vue, elle en souffre. La fibromyalgie est invisible, mais les millions de personnes qui en souffrent ne le sont pas.
Parce que la fibromyalgie est devenue un problème de santé
Bien que les institutions continuent à regarder ailleurs, la fibromyalgie est une réalité qui continue de croître, qui ne comprend pas les classes sociales, le niveau culturel, l’âge ou le point cardinal. Il peut commencer dans l’enfance et s’aggraver au fil des ans, avec l’apparition de nouveaux symptômes.
Loin d’être psychologiques, comme beaucoup ont insisté pour nous faire croire, les dernières recherches dans le monde suggèrent qu’il s’agit d’une maladie neuro-immune et donc compromettent tous les systèmes du corps, et peuvent apparaître jusqu’à plus de trente symptômes différents. Les plus invalidantes sont la douleur et la fatigue chronique.
“La fibromyalgie est une maladie chronique et invalidante de cause inconnue et sans traitement efficace.”
Depuis de nombreuses années, il a évité cette définition et a préféré accuser le menteur patient, geignard, névrotique, dépressif, filou, victimista … à tel point que la plupart de la société a cru que la fibromyalgie est synonyme de cuentista et tout les forums sont parlés d’une manière méprisante et suspecte de ces patients.
Les personnes concernées sont exposées à un «procès populaire» avec un verdict: «emprisonnement à vie», condamné à s’enfermer chez elles, à ne pas se préparer, à ne pas sourire … parce que si elles le font elles sont repensées. “Ce ne sera pas si mal quand tout est réglé”, “regarde comme elle rit, ça ne fera pas trop mal …”
En plus d’être malade, la société remet en question leur droit de vivre et d’être heureux. Les personnes ayant des difficultés physiques qui réussissent sur le plan sportif ou personnel sont des exemples à suivre et suscitent l’admiration, et personne ne doute de leur handicap. Cette admiration et cette empathie se manifestent dans toutes les maladies sauf la fibromyalgie.
Le patient de la fibromyalgie qui parvient à être heureux, malgré la maladie, et parvient à réussir, malgré les très grandes difficultés, n’est pas apprécié pour sa force et son désir d’exceller, ni n’est un exemple de vie, c’est simplement une raison de questionner son diagnostic et, avec lui, le professionnalisme du médecin qui le lui a donné.
Le fait que la dure réalité de cette dure maladie ait été niée depuis si longtemps a causé un préjudice physique et moral irréparable à de nombreuses personnes touchées.
Traitement
Au niveau de la santé, la polypharmacie a été abusée et des toxicomanes ont été créés et le fait de faire croire à leur environnement et à la société qu’ils «n’ont rien» a entraîné des ruptures familiales, du harcèlement, des licenciements et des condamnations défavorables. d’incapacité de travail.
Lorsque, pour tous ces dommages collatéraux, le patient est submergé dans une dépression, celui qui reste obsédé à nier l’évidence est confirmé par le fait que «son problème est psychologique».
Il y a des années nous pouvions justifier ce “traitement inapproprié” dû à l’ignorance de l’origine de la pathologie, mais après trente ans, cela ne marche plus. Bien que nous ne sachions toujours pas quelle est l’origine, bien qu’il n’y ait pas encore de marqueur mesurable, il est temps de prendre ses responsabilités et de commencer à le chercher.
Parce que la fibromyalgie est passée d’un problème de santé à un problème social. Il touche 5,4% de la population, 92,7% sont des femmes à risque d’exclusion sociale.
“La fibromyalgie est une maladie chronique et invalidante de cause inconnue et sans traitement efficace.” Il s’agit d’une phrase directe et facile à comprendre, il est temps de l’accepter, de prendre ses responsabilités et d’agir en conséquence, par exemple en investissant dans la recherche et les ressources pour le traitement approprié de la maladie.
La fibromyalgie n’est pas seulement une douleur, comme certains le disent, comme si ce n’était pas beaucoup. Il affecte l’organisme entier, de sorte que le patient se promène de spécialité en spécialité médicale, pendant des années, jusqu’à obtenir finalement un diagnostic qui n’aide pas beaucoup parce que le médicament prescrit ne fait pas disparaître la douleur.
Le résultat est une dépense extraordinaire du système de santé et du temps perdu pour le patient, ce qui ajoute à ses symptômes les effets secondaires de la polypharmacie et de la frustration. La frustration est également partagée par les médecins qui veulent aider le patient mais se sentent impuissants par manque de temps dans les consultations et les ressources pour les servir de manière multidisciplinaire comme ils le méritent.
La solution est d’avoir la volonté politique d’investir dans la recherche et la formation de médecins experts qui dirigent ces unités. Cette forme de soins serait moins coûteuse pour le système et améliorerait la qualité de vie du patient et donc l’environnement familial et professionnel. Peut-être l’une des raisons pour lesquelles il n’est pas étudié est parce que “la fibromyalgie ne meurt pas …”
Avec la fibromyalgie, vous ne vivez pas, vous survivez
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