Tests and Investigations
Almost all of the people we spoke with, at some point, had tests and investigations related to their long COVID symptoms. Most of these tests came back as ‘normal’ and did not explain what they were experiencing. When this happened, participants were often told their symptoms were due to anxiety. Many felt they were not being taken seriously by doctors because the usual tests and investigations could not explain their symptoms. Some participants requested, or were offered, more specialized tests but only a few had them.
Medical practice typically relies on test results to inform a care plan. But, for people with long COVID, such tests could be unhelpful. As Luna put it, “One of the hardest things about interfacing with the healthcare universe has been the idea that they want to find something they can test for.” Or, as Kirsten told us, “I went for so many appointments with doctors and bloodwork, and they just kept saying the same thing, like, everything was normal.” This was Valérie’s experience as well. She explained, « Le défi que j’ai eu de mon côté, c’est que mes tests sortaient toujours négatifs. Fait que les médecins me renvoyaient chez nous en me disant : « Non, non, c’est de l’anxiété. » « Ah! C’est juste un problème digestif. » « Ah! Un virus inconnu, mais on ne vous gardera pas parce que vous pourriez attraper la COVID. ». [The challenge I faced was that my tests always came back negative. So the doctors would send me home and say, “No, no, it’s anxiety. “Ah, it’s just a digestive problem. “Ah, an unknown virus, but we won’t keep you because you might catch COVID.”] Translation from the original French.
When tests came back as ‘“normal,’” it was not unusual for participants to be told that their symptoms were due to anxiety. As Tanya described it, “They had put the pulse oximeter on my finger when I was triaged, and he said, … “your blood oxygen levels and your heart rate are just fine.” And … he put the stethoscope on my back and had me breathe, and he said, “and your lungs are crystal clear. So … here’s an Ativan (medication to treat anxiety). See you later.” Paulina saw an internist, who said her symptoms were likely due to anxiety, and a pulmonologist (lung specialist) who told her to just “Go enjoy life. Go for a hike. Go canoeing.” Nicole was similarly frustrated. She said, “We know that a traditional blood test is not going to identify the symptoms of long COVID … we need to develop a test that proves that we’re suffering … I would just like them to believe us and to be educated about long COVID so that their patients aren’t starting from scratch every time and having to go through all these tests.” Jennifer 1 had a similar perspective. She said, “Just because a test came back normal doesn’t mean we aren’t still having this effect … that what we’re feeling is still valid. We know our body. We know what we were pre-COVID.”
Emily underwent extensive testing but, in the end, the tests found nothing to treat.
Transcript
They did blood work and they checked all of the inflammatory markers that are commonly elevated in severe cases and mine were all fine. And they did chest X-rays, EKG’s, they repeated them again to see if there was any change and there was nothing. My heart rate was fine. […]
Chris explains why he thinks it's often hard to capture long COVID symptoms at medical appointments.
Transcript
And so interactions with healthcare professionals, might not necessarily capture at that precise moment, every aspect of what’s going on. And some of these things can be hard to describe, or hard to understand, if you’re not seeing them. Some of my appointments – I’ve been fortunate to be able […]
Katherine was relieved to learn that she didn't have asthma or another lung condition but wished someone could explain her extreme shortness of breath.
Transcript
I found myself with referrals to a pulmonologist, a cardiologist; we did a lung function test, chest X-rays. I just usually say a battery of tests, because there were so many, I honestly couldn’t tell you all of them. And, happily, all of the lung function tests came back normal. […]
Violaine feels "disoriented" because she has no idea what's causing her symptoms despite undergoing a battery of tests.
Transcript
J’ai eu des batteries de tests, panoplies de tests pour voir s’il y avait quelque chose d’anormal. Donc tous les résultats sont parfaits, je suis en parfaite santé! Donc la vitamine D, je prends des suppléments de vitamine D. Mais c’est la seule anomalie qui a été constatée, puis j’ai […]
Lyse had extensive testing that failed to provide any answers.
Transcript
Puis là bien ensuite, là à l’hôpital, ils m’ont passé des radiographies des poumons, ils m’ont dit : « Pas de problème, vos poumons sont corrects. Ça ne cile pas, on voit que l’air passe bien, mais je suis essoufflée puis j’ai de la misère à respirer. Puis ils me disent que l’air […]
Specialized Testing
A number of participants requested more specialized testing in the hope of identifying the cause of their symptoms. Only a few actually underwent such tests. William was hoping to get a cardiac MRI because he felt there was something wrong with his heart that other tests did not confirm. Carrie 1 managed to get a cardiac MRI which diagnosed pericarditis, an inflammation of the tissue surrounding the heart. She was then prescribed medications which she feels are helpful.
Jennifer 2 had a specialized test that helped explain her breathlessness.
Transcript
I was clutching my chest just to get up from bed and just walk to the washroom and I didn’t know what was wrong. I was just really short of breath and those were my – the first symptoms that I noticed. I did not know yet about long COVID […]
Carrie 1 was able to access specialized tests as a participant in several research studies.
Transcript
And so I live in Quebec City, and it was – I traveled to Montreal for – actually I got involved in another research project. I was involved in three research projects. So I was involved in [name’s], I was involved in the rehab one, I was involved in Dr. […]