La fibromyalgie: la condition que personne ne comprend

J’ai souffert de fibromyalgie pendant six ans. À ce jour, je ne suis pas sûr de ce que je trouve le plus difficile; la douleur constante, la fatigue et la myriade d’autres symptômes qui accompagnent le diagnostic, ou le besoin constant de l’expliquer et de le justifier.

En 2010, quand on m’a diagnostiqué, c’était par processus d’élimination. J’avais eu divers tests et scans sans conclusion, et un jour j’ai demandé à mon médecin généraliste si je pouvais avoir la fibromyalgie, après avoir lu à ce sujet en ligne.

Je suis sûr que l’autodiagnostic sur internet est la chose que tous les médecins conseillent de faire, mais ici, ça se passait. J’ai été référé à un rhumatologue qui a confirmé mon diagnostic après avoir passé le test du point sensible, et pendant un moment j’ai ressenti un soulagement.

Résultat de l'image

Mais cette nomination est devenue l’une des nombreuses conversations frustrantes avec les médecins qui ne croyaient pas ou ne comprenaient pas ma douleur. Ce rhumatologue, qui n’avait pas de formation en psychologie clinique à son nom, m’a posé la question la plus clichée de tous.

«Alors, dit-il, parlez-moi de votre enfance. T’es-tu entendu avec tes parents?

Pourtant, cinq ans après, je suis furieux contre moi-même de ne pas le défier. J’aurais dû lui demander pourquoi il me lançait Pop Psychology 101, mais à la place je lui ai parlé de mon enfance.

Il m’a suggéré de subir une série de séances avec un psychologue et je n’ai pas demandé pourquoi, j’ai simplement hoché la tête et pleuré. J’ai posé des questions sur le traitement de la douleur et sur la façon d’y faire face, mais il a dit que le fait de parler avec le psychologue devrait l’aider.

Cette expérience était la première fois que je ressentais un tel manque de compréhension, et chaque fois est aussi déchirante que la précédente.

Mais ce ne sont pas seulement des professionnels de la santé. Lorsque mon ami a été diagnostiqué avec la sclérose en plaques quelques années plus tard, je me sentais jaloux. Peux tu croire ça?

Je ne lui ai jamais dit – ou avoué à qui que ce soit, mais la regarder recevoir des cartes et des fleurs de tous nos amis pendant les premières semaines de son diagnostic m’a fait réaliser combien peu de mes amis comprenaient vraiment la fibromyalgie.

Elle avait rendez-vous avec de nombreux médecins et infirmières, tous là dans le cadre de son «réseau de soutien». Je n’avais eu de nouvelles de personne après ce rendez-vous avec le rhumatologue – à moins de compter le psychologue qui m’a libéré après trois séances car il ne pouvait «voir aucun signe de traumatisme».

Je n’avais pas un tel réseau d’amis, de famille ou de médecins. En fait, à ce moment-là, j’avais du mal à faire comprendre à mon médecin généraliste la douleur dans laquelle j’étais.

Si vous souffrez de fibromyalgie alors je suis sûr que votre chemin vers le diagnostic était aussi horrible et compliqué que le mien. Je n’ai pas encore entendu parler d’une personne qui a été accueillie avec compréhension, croyance et gentillesse du début à la fin.

Je trouve vraiment déconcertant que tant de gens puissent être si malades et pourtant le manque de soutien et le manque de volonté de comprendre est juste une donnée.

Mon conseiller en santé au travail m’a dit: «La fibromyalgie est l’état en vogue des années 90 – dans les années 1990, tout le monde prétendait avoir MOI» et mon consultant à la clinique de la douleur a dit: «Beaucoup de patients fibromyalgiques viennent ici en pleurs et en pyjama – Tu sembles bien aller.

Je ne comprendrai jamais pourquoi des commentaires comme ceux-là sont acceptables, surtout de la part des professionnels du secteur de la santé.

Pourtant, tout n’est pas mauvais. Au fil des ans, j’ai été assez chanceux. Mon réseau de soutien n’a peut-être pas existé au début, mais il a grandi au fur et à mesure que je devenais plus franc au sujet de mon état. J’en parle au travail, je blogue à ce sujet dans mon temps libre et je fais des liens à travers les médias sociaux avec d’autres patients atteints de fibromyalgie.

Mon petit ami est un grand soutien et n’a jamais remis en question la validité de ma douleur; Son père vit avec ME depuis plus de 30 ans et il comprend très bien les difficultés associées à la douleur chronique et aux maladies invisibles.

Mais, malheureusement, j’ai lu beaucoup de discussions sur les forums de fibromyalgie où les patients parlent de leur manque de soutien de la famille ou le manque de compréhension dans leur cercle social, ce qui explique pourquoi les blogs et les réseaux sociaux sont si importants. Ils nous rappellent que nous ne sommes pas seuls.

Il y a plus de 5 millions de personnes souffrant de fibromyalgie aux États-Unis et des millions d’autres à travers le monde et je pense que nos voix se renforceront et que nous deviendrons plus forts, nous sensibiliserons, encouragerons la recherche et l’éducation et la compréhension de la fibromyalgie augmentera.

Au fur et à mesure que la recherche se développe, des essais cliniques auront lieu et qui sait, peut-être qu’un jour il y aura un traitement. Dans ma vie cependant, j’aimerais juste voir notre diagnostic signifier quelque chose.

Je veux que les gens répondent avec compréhension et sympathie quand quelqu’un leur dit: «J’ai la fibromyalgie.

118 thoughts on “La fibromyalgie: la condition que personne ne comprend

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