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Patient: Long COVID
Patient Perspective: Living With Long COVID

Released: January 05, 2023

Expiration: January 04, 2024

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Key Takeaways

  • Each person’s experience with long COVID is unique.
  • It is important for people with long COVID to be believed.
  • It is important to acknowledge the biological and physical impacts of long COVID.

My Initial Long COVID Experience
The hardest part of having long COVID was not being believed. I had friends and well-wishers who would ask, “Well, aren’t you better now?” I wanted to be, but I wasn’t. I would try, for example, to visit my ailing mother, but after 15 minutes at her house, I would have to be driven home because I just couldn’t function.

I experienced a symptom that I call “fizziness.” I know that’s not a very helpful or professional diagnosis, but it’s something that continues to recur, and it almost feels as if all the cells in my body are vibrating. In the early days, it was the most peculiar debilitating symptom—I couldn’t focus.

I had lots of symptoms early on, including reactive arthritis, palpitations, breathlessness, fatigue, and cognitive dysfunction/brain fog. These went on for almost 11 months after my acute COVID-19 illness. Over time, I would have good days where I could walk a little bit more than 5 or 10 minutes—sometimes I’d get as far as 20 minutes—but I would get what I now know to be postexertional malaise (PEM). So, if I went to the supermarket to shop for myself, which is something I desperately wanted to do, I would be bedbound for 4 or 5 days afterward.

Vaccination and Long COVID?
It was a long time after these symptoms that I finally got my first vaccine. I received my first COVID-19 vaccine in March 2021 and felt wretched for 36 hours—as if my original acute COVID-19 infection was back—and then I woke up and it was like a miracle cure. Suddenly I felt full of energy, and I went down to the seafront and found I could walk for an hour. Friends who had been taking me for these short, paced walks were astonished that suddenly I was out there happily walking.

When the PEM didn’t come, I declared myself cured of long COVID. I was on the National Advisory Council to the National Institutes of Health, and I would introduce myself by saying that I used to have long COVID, got the vaccine, and am fine now. By the time I got my second vaccine a few months later, I had finally developed some antibodies.

But then, 2 months after that, the long COVID symptom relapses began. It started with some cognitive dysfunction and fatigue. I kind of denied it to myself because I didn’t want to believe that it was coming back. I felt that I was the person with long COVID who had been cured by a therapeutic vaccine, and that’s the story I wanted to stick with. But a few months into early 2022, it really started to become impossible to deny.

The Long Road to Recovery
So, 2.5 years on, I am learning to live with long COVID and learning to factor in regular pauses throughout the day. I have finally been seen by a team of healthcare professionals at one of our best long COVID clinics. It has been incredibly helpful because they have given me β-blockers, and I am working with physiotherapists on exercises for my breathing pattern disorder, as well as monitoring my heart.

It is somewhat shocking to me that I haven’t recovered from long COVID. One of the positives is that people now believe that long COVID exists, and it was really tough at the beginning when people didn’t.

I’m not able to do the things that I used to do. Before my long COVID, I would travel long distances, across continents, 1 or 2 times a week. Right now, it can be difficult for me to take a 2-hour train journey, and those kinds of changes to my life are very challenging to my sense of self and my career.

Message to Healthcare Professionals
What I’d like to say to healthcare professionals who are involved in treating people with long COVID is something you might consider obvious: Believe your patient. People with long COVID have a really random set of symptoms—as many as 200 have been reported. It seems that different patterns of long COVID occur in different people, although no one has yet come up with a categorization of those different typologies.

The desire we have to find new solutions and learn about options for treating long COVID is really important, and I hope that healthcare professionals treating people with long COVID will take the opportunity to help us by experimenting with new potential medications.

Your Thoughts?
What have been the most common presenting symptoms in your patients with long COVID? Which interventions seem to help? Join the conversation by leaving a comment below.