People with Long COVID Advocating for Themselves
According to the people we interviewed, bringing attention to the realities of living with a newly emerging health condition, like long COVID, is not easy. Some of the people we spoke with described the different ways in which they advocated for their own needs, educated their healthcare providers, and worked to raise awareness of long COVID.
Doing advocacy work is hard when you are sick
Despite being chronically ill, several of the people we spoke with had been involved in public advocacy work to raise awareness of long COVID. Lesley sent a petition and, later, a video, to her provincial legislature. She believes that “even … the smallest form of activism … is helpful.” WhiteFeather had been “speaking to the media … to … keep presenting real-life cases of people who are affected long-term by this.” Angela, urged people to, “Talk about it … I am … constantly talking about it because the media isn’t. The media is not talking about just how many people have long COVID. And just how many symptoms there are that people aren’t correlating.”
Violaine is involved in many forms of advocacy work despite having very little energy to spare.
Transcript
Il a fallu qu’on fasse des mobilisations monstres en étant malades, donc le plus de démarches possibles, de représentations pour essayer de se faire entendre. Nos énergies sont extrêmement limitées, donc là je parle des fois d’organiser des manifs, mais … Écrire des lettres ouvertes, des entrevues dans les journaux, […]
Nicole explains how hard it is to raise awareness of long COVID when you're living with it.
Transcript
It’s been really isolating. I mean we were all – the whole world was in isolation and everyone knows how difficult that was. But to have this on top of that was really difficult. To be invalidated and people not even believing that you’re sick is really something difficult to […]
Aislene feels that talking openly about long COVID spreads awareness and encourages others.
Transcript
Advocate for yourself. Don’t let someone tell you that you don’t have it or that you’re being dramatic. Talk about it openly because it will help spread awareness, it will help other people open up about their own struggles. It wasn’t until I started talking about it that I was […]
Advocating to get the care you need
Many of the people we spoke with said that getting the care they needed had been a struggle. Sometimes this was because dedicated long COVID services were not yet widely available or because their healthcare providers were unaware of them. As Tanya explained, “I’ve managed to find a long COVID treatment clinic that is offered as an outpatient program … So I then got in contact with them and figured out what information they needed, and relayed that back to my doctor’s office … my doctor’s office … weren’t even aware of any long COVID clinics in existence.”
Other participants described having to advocate for themselves in order to get their healthcare providers to recognize that they actually did have long COVID and to provide appropriate care. Jennifer 1 felt that “If I didn’t push the way I pushed I don’t think I would have had the care that I have had so far … If you don’t advocate for yourself with something that’s so new like this then you just keep getting told that it’s just long COVID and there’s nothing that you can do about it.” Lesley advised, “You will get doctors who just dismiss you … don’t take that for an answer. If you know something’s wrong with your body, listen to your body and fight for yourself.” Carrie 1 pointed out that healthcare providers can misidentify symptoms. “If you have a racing heart, they might tell you that it’s anxiety, but in fact, it’s probably POTS, Postural Orthostatic Tachycardia Syndrome … it’s very frequent in people with long COVID … it looks like anxiety … kind of looks a little like a panic attack, but it’s not … They’re going to offer you antidepressants instead of medication for dysautonomia. So, learn about your illnesses and comorbidities, and try to get care for them as best you can.”
Kari had to advocate hard to get the specialist test she needed.
Transcript
When I was seeing the pulmonologist, I kept saying, “No, there’s something wrong.” And she kept saying, “No your test is fine.” … Like she kept saying, “No your lung is fine, your lungs are fine, there’s nothing wrong.” And I kept saying, “No, it’s not the capacity of my […]
Valérie is fighting to get her disability recognized after her application for social assistance was refused.
Written testimony
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. Parce qu’il y en a beaucoup… Si j’étais seule, je pourrais avoir l’aide sociale, de l’aide de dernier recours. Je serais admissible pour contraintes sévères à l’emploi. Ça c’est pas mal certain, mais le fait que je sois en couple fait en sorte qu’ils considèrent le salaire familial, puis à ce moment-là bien je ne peux pas y avoir droit, même si on s’entend qu’on est quand même loin d’être riche.
[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 then 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 we 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. Because there are so many … If I were on my own, I could get social assistance, help of last resort. I’d qualify for severe employment constraints. That’s quite certain. But the fact that I’m part of a couple means that they consider the family salary, and then I don’t qualify, even if we agree that we’re far from rich.] Translation from original French.
Cher had to educate her doctor about long COVID.
Transcript
He’s like, “Well, I’m not really sure whether it’s really long COVID or whether this is the depression, and your weight.” And I was so offended, because I’m like, “I have had depression my entire life. You know that. We’ve worked through this. It’s never been a life-altering thing. And […]