Valérie describes her struggles to get her condition recognized.

Written testimony

C’est sûr que moi dans mon cas, j’ai un diagnostic d’encéphalomyélite-myalgique qui n’est pas nouveau. Même si c’est ce diagnostic-là, n’empêche qu’il n’est pas reconnu, même si ça fait des dizaines d’années que ça existe cette maladie-là puisqu’ils connaissent quand même ça, ils ont tendance à rejeter très, très facilement les demandes pour des gens qui ont le EMM. Donc la COVID longue rentre un peu dans le même forfait avec ces maladies post-infectieuses comme on sait, fait que c’est sûr que, de devoir démontrer que ça va être permanent, c’est difficile ! Puis là je suis rendue dans le fond à… J’ai fait une demande de révision, parce que ma première demande a été refusée. Et ils m’ont envoyée en expertise voir un de leurs médecins, évidemment. Donc c’est vraiment des combats, des batailles que je dois mener puis que plein d’autres personnes doivent mener comme moi, pour faire reconnaître la gravité de leurs symptômes puis l’invalidité qui vient avec. La notion de permanence c’est très difficile et ça rajoute encore une fois un stress supplémentaire, stress financier, puis un stress de devoir aussi se battre pour faire reconnaître qu’est-ce qu’on vit au quotidien, puis à quel point la maladie a pu chambouler ma vie, dans le fond, celle de ma famille puis ce qui est vraiment dommage, c’est que c’est vraiment ma seule option sincèrement.

[Of course, in my case, I have a diagnosis of encephalomyelitis-myalgia, which isn’t new. Even if it’s that diagnosis, it’s still not recognized, even though it’s been around for decades, because they do know about it, they tend to reject very, very easily requests for people with ME. So long COVID falls into the same category, with these post-infectious diseases as we know, which means that having to demonstrate that it’s going to be permanent is certainly difficult! I applied for a review, because my first application was refused. And they sent me to see one of their doctors, obviously. So it’s a real battle, a battle that I have to fight, and that many other people have to fight like me, to have the seriousness of their symptoms recognized, and the disability that comes with it. The notion of permanence is very difficult, and once again adds to the stress, the financial stress, and the stress of having to fight for recognition of what you go through on a daily basis, and the extent to which the disease has turned my life upside down, and basically that of my family.] Translation from original French.

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