“As the weeks turned to months and now years, I have had days when I have wondered if I will ever be the person I was before, and it makes me a bit depressed. My main frustration is not being able to go for long walks, climb hills or travel long distances because of the fatigue. I also find my memory and ability to recall words have been compromised.”
Susan, aged 63, is a health policy consultant who considered herself fit and healthy before catching COVID-19 in April 2020. At that time, she was an avid hill walker and regularly practised yoga. Both Susan and her husband caught COVID-19 at around the same time, but he was over his illness after only about a week.
Susan, however, was not so fortunate – she continued to suffer from fatigue, headaches, high temperature and muscle aches, with a nasty cough developing 2 weeks later. She remained ill in bed for 3 weeks, only venturing out to get her pulse and oxygen levels checked at a local drive-through test centre.
Two months after having contracted COVID-19, Susan was still coping with headaches and having problems processing information; these symptoms eventually cleared up, only to be replaced by breathlessness and fatigue again.
“In the first few months, I was frustrated that I couldn’t even walk to the local shops, having always been a very active and independent person. My husband was very supportive, but at first he struggled to understand why I wasn’t getting better, particularly as he’d managed to shake off the virus so quickly. Loss of appetite and interest in things because of fatigue worried me, but I was very hopeful that the symptoms would soon clear up.”
As well as having this sense of optimism, Susan was also feeling that things could have been so much worse.
“Given the number of people who were dying from COVID-19 in 2020, I considered myself extremely lucky. I was very aware that as we were all in lockdown, everyone’s lives were being restricted, not just mine. This was also happening at a time of my life when I could afford to slow down a bit without having major financial or family worries. If I’d been mid-career, with a physically demanding job, I’m sure I would have felt much more frustrated and stressed.”
Susan began following the Long Covid Support Facebook page, which made her aware that she was not alone in how she was feeling.
“In the first half of 2020, the Facebook page seemed to be the only form of support out there. A coordinated service for addressing my symptoms didn’t become available in my area until spring 2021. It was reassuring to find that there were many others in the same situation as me and that what I had was real. It also became a really useful source of practical advice at a time when there was very little available.”
Susan adds, “I also found a few people who, like me, had had COVID-19 and were still suffering weeks later, but weren’t admitted to hospital. We had all started trying to build up exercise after the initial infection had gone and then ended up exhausted and back in bed. For me, that was the trigger to realize something was really not right.”
Between August and October 2020, Susan was referred for heart, lung and blood tests, which led to a diagnosis of post-viral chronic fatigue – a classic sign of post COVID-19 condition, commonly known as long COVID.
“My doctor has been very supportive, both before and after the diagnosis. You have to remember that no one really had a clue what long COVID was at that time – and we still don’t fully understand it – so it has been a challenging time for clinicians as well. However, my doctor really listened to me and through the process we’ve both learned a lot about the condition.”
Two years on from catching COVID-19, Susan is still suffering from fatigue, but has adapted and come to terms with the reality of her new life.
“I am often tired by early evening so I have to plan my day accordingly. I find yoga – which combines movement, breathing and mindfulness – is really helpful. My daily life has really slowed down, but in some ways, I find it quite beneficial. I notice and appreciate so much more around me, especially nature and the seasons. So as one door closes, another one opens,” she explains.
“Long COVID can be life-altering, as I have found, so I really don’t understand why people wouldn’t want to get a COVID-19 vaccination to protect their own health and that of the loved ones around them. No one can predict, as yet, who will go on to develop long COVID following a COVID-19 infection; it’s a condition that can affect all ages. And there are many sufferers out there – like me – who were previously healthy, with no underlying conditions.”
Susan continues, “I’d urge everyone to get vaccinated, because people who end up having to have hospital treatment because of COVID-19 infection are also potentially worsening the already significant backlog in treatments available to patients with other serious conditions.”
Increasing recognition, research and rehabilitation for post COVID-19 condition
The scale of post COVID-19 condition and the long-term burden it is likely to have on health systems is only starting to be realized. Studies show that 10–20% of individuals who caught COVID-19 may experience continued symptoms for weeks to months or even years after their original infection, equating to millions of people worldwide.
WHO/Europe is in the process of partnering with Long COVID Europe, a network of patient-led associations that has been gathering information on the condition and sharing it with interested stakeholders since its foundation last year.
WHO/Europe has also been working with patient groups to define priority areas where action is needed. It is now calling upon governments and authorities to focus attention on long COVID and the people it impacts through greater:
- recognition: all services must be adequately equipped, and no patient should be left alone or have to struggle to navigate through a system that is not prepared to, or not capable of, recognizing this very debilitating condition;
- research and reporting: data gathering and reporting of cases, and well coordinated research with full participation of patients, are needed to advance understanding of the prevalence, causes and costs of long COVID; and
- rehabilitation: this cost-effective intervention is an investment in building back healthy and productive societies.