Ma douleur sans fin: vivre avec la fibromyalgie

Kirsty Young, animatrice de Desert Island Discs, a contribué à la sensibilisation à la condition douloureuse et débilitante, mais reste peu connue

Résultat de l'image pour ma douleur sans fin: vivre avec la fibromyalgie

Je vis avec une condition médicale mal comprise, souvent invisible, ce qui signifie que ma vie est un peu russe. Je ne sais jamais d’une semaine à l’autre, ni même d’un jour à l’autre, comment je serai.

Prenez le dernier mois. J’ai passé deux bonnes semaines où j’ai pu faire des choses supplémentaires, comme rencontrer des amis. Cependant, cela a aussi sa récompense et pendant quelques jours je suis resté au lit sans pouvoir quitter la maison.

Ce phénomène des symptômes est typique de l’expérience d’un patient atteint de fibromyalgie. C’est l’une des maladies chroniques les plus répandues dans le monde, on estime à un million le nombre de victimes au Royaume-Uni, mais elle est encore mystérieuse. La semaine dernière, elle a pris conscience  du fait que l’  artiste du disque de Desert Island , Kirsty Young, a déclaré qu’elle prendrait un congé parce qu’elle en était atteinte. L’année dernière, Lady Gaga a révélé qu’elle était une victime.

Ma fibromyalgie a commencé à l’âge de 24 ans, peu après la naissance de ma fille en novembre 1993. Il s’est passé jusqu’en mai 2005 pour obtenir un diagnostic. Au cours de ces 12 années, on m’a dit que mes symptômes étaient dus à divers types d’arthrite, de dépression et, plus d’une fois, qu’ils étaient tous dans ma tête. Ce fut un moment très frustrant, surtout quand tous les tests et rayons X étaient encore clairs.

Quand j’ai finalement eu mon diagnostic, c’était un grand soulagement d’avoir un nom pour ce que je vivais. Cependant, ce soulagement a diminué lorsque je me suis vite rendu compte que beaucoup de personnes ne considèrent pas la fibromyalgie comme une véritable maladie. Si une condition ne dispose pas d’un test médical pour le confirmer, alors cette condition n’existe pas, ils croient.

Mes principaux symptômes sont la douleur sévère et généralisée, la fatigue chronique, troubles cognitifs et des problèmes de mémoire (nous avons appelé « brouillard fibro »), les troubles du sommeil et le syndrome du côlon irritable, mais il y a beaucoup d’autres qui me touchent à des degrés divers. Comme beaucoup de personnes atteintes de fibromyalgie, je peux voir beaucoup mieux que moi et la maladie est souvent décrite comme une maladie invisible. Parce qu’il est pas malade, ou il n’y a pas de cause évidente pour les symptômes, les gens ne peuvent pas croire que vous êtes aussi malade qu’il dit qu’il est, et ce incroyance peuvent provenir de professionnels de la santé de la famille et des amis ainsi que les personnes étrangers

La plupart du temps, j’utilise des béquilles pour marcher ou mon scooter de mobilité pour de plus longues distances. Mon équilibre et ma conscience spatiale sont très faibles, donc je peux osciller, trébucher et tomber si je ne les utilise pas. Les gens ont tendance à penser que vous devez ou non utiliser une aide à la marche. Mais avec la fibromyalgie, vous en aurez peut-être besoin un jour, puis pas le lendemain.

Heureusement, mes symptômes sont à un niveau gérable, grâce à une combinaison de médicaments, des suppléments, des thérapies complémentaires et des techniques d’auto-contrôle, j’ai appris au fil des ans. J’ai également reçu beaucoup de soutien de la part de ma famille et de mes amis et je suis membre fondateur et secrétaire de mon groupe de soutien local. Cela m’a amené à faire du bénévolat pour Fibromyalgia Action UK, où je travaille maintenant en tant qu’administrateur à temps partiel. Je fais également de mon mieux pour maintenir mon métier d’artisan: crochet, tricot, point de croix et faire des cartes.

Je pense que chaque personne atteinte de fibromyalgie a son rôle à jouer en informant le public de la maladie et de son impact sur nous. Chacun de nous a des symptômes différents et est affecté à différents degrés. L’éducation et la sensibilisation sont les moyens de faire comprendre aux autres ce que nous traversons.

Ce qui me donne l’espoir, c’est qu’à l’avenir la cause sera connue et qu’il y aura des traitements efficaces. À l’heure actuelle, les symptômes sont traités individuellement et les services dépendent de l’endroit où vous habitez. Et il y a encore trop de professionnels de la santé qui dédaignent la maladie.

Un jour, j’espère que quand quelqu’un demande ce qui ne va pas et répond: “Fibromyalgie”, je ne recevrai pas la réponse, “Fibro, quoi?”

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