“More than a year on, I think I’m physically improving, but still feel nowhere near my baseline. I’ve felt a lot of frustration and anger, particularly when my reinfection set me back further, wishing that I could do the things I want to do. Mentally, it’s all taken a big toll, too.”
Abbie, 28, is a nurse working at the John Radcliffe Hospital in Oxford, United Kingdom. She first caught COVID-19 in January 2021, but only experienced very mild symptoms. However, this was not the case when she was reinfected in April 2022.
“I felt really rough for a couple of weeks, but thought, ‘Oh, this will go away, it will get better.’ But it didn’t – the symptoms just persisted.”
For Abbie, the worst of these has been the fatigue, which she describes as horrendous. Nursing can be a strenuous job, but Abbie now becomes exhausted after doing any form of physical activity. Doctors call this post-exertional malaise, and it severely limits what she can do. Abbie has gone from running 10 kilometres twice a week to struggling just to be able to work.
Supportive employers
Abbie has been fortunate to have understanding employers who have been flexible in response to the fluctuations in her health over the last year.
“I've had really great support from my employers. My long COVID got to the point where work became too much, and I ended up having to take 2 months off sick. I then had a slow, phased return back into work, until I was working full time again by December 2022. It was then that I caught COVID-19 for a third time.”
Abbie suffered a relapse and was forced to take another 2.5 months off work. She is now attempting a second phased return, with amended duties carried out in other departments where the tasks are less physically arduous.
“I used to work regular night shifts, weekends, long 12-hour shifts and sometimes take on extra shifts too, but there’s no way I could do anything like that now.”
Help from the Oxford Post-COVID Service
Abbie was referred to the Oxford Post-COVID Service, where specialists help her with managing symptoms and play a part in her safe return to work.
“I've been having remote one-to-one sessions with one of their clinicians, who has been brilliant. We've talked about pacing and planning how to manage fatigue, which has been really good. Not long after my long COVID diagnosis, I also joined in some online group sessions with patients dealing with similar symptoms. It was great to meet and hear from others who were going through the same sorts of things and to know that I wasn’t the only one feeling like this.”
A life made smaller by long COVID
Abbie admits that, like many people, she did not appreciate just how debilitating and isolating long COVID could be until she developed the condition herself. When her symptoms were at their worst, she explains, her world shrank completely, turning her from someone who enjoyed going out and socializing to someone who was isolated and alone at home.
“Unless you’ve had it, you can’t get a true picture of how much it will affect your life, because it's not just a couple of weeks where you feel unwell and then you're back to normal. This is something that’s been with me for more than 14 months, and I still don’t know how much longer it will go on. This uncertainty combined with the fact that there are still so few answers as to how to best manage the condition can be quite upsetting.”
Despite all of this, Abbie has managed to remain optimistic. “My message to other long COVID patients is to just try and find positivity in each day. I know that it can be really difficult to find positives, but I think in every bad situation, you can find something positive. You need to have a little bit of hope and belief that things will get better, which mentally helps you get through the days.”
The shadow pandemic
Research and modelling suggest that of those infected by SARS-CoV-2 (the virus that causes COVID-19), 1 in 10 will go on to develop long COVID, defined as the continuation or development of new symptoms 3 months after the initial infection, with these symptoms lasting for at least 2 months with no other explanation. Long COVID can develop in people of all ages, regardless of severity of original symptoms and previous health status.
It is known that the chance of developing the condition increases the more times a person gets reinfected by SARS-CoV-2, and that reinfection can worsen symptoms for people already living with long COVID.
According to estimates from the Institute for Health Metrics and Evaluation at the University of Washington in Seattle, a WHO collaborating centre, nearly 36 million people across the WHO European Region may have experienced long COVID in the first 3 years of the pandemic. That means approximately 1 in 30 Europeans may have been affected.
Dr Catherine Smallwood, Senior Emergency Officer and COVID-19 Programme Lead at WHO/Europe, explains, “There is still much more to learn about long COVID, which is why WHO/Europe is working in partnership with the advocacy group Long COVID Europe and others to ensure that the voices of those living with the condition are reflected in guidance and to call for our Member States to increase the 3 Rs – recognition, research and rehabilitation.”
Dr Smallwood adds, “COVID-19 is here to stay, and we need to ensure that people continue to protect themselves the best they can. The best way to avoid long COVID is not to get infected, or reinfected, with SARS-CoV-2 in the first place.”