Jessica, 27, was hospitalised with COVID-19 in mid March after her mother fell ill. Though she has mild asthma (often triggered by hay fever), it was never something she considered life-threatening and she has no other pre-existing health conditions. Despite this, the coronavirus hit her like a ton of bricks. Months later, she is still feeling the impact on a daily basis, both physically and mentally.
"I still don't feel 100%," says Jessica. "I said to my doctor only a few weeks ago that it feels like I have a different pair of lungs… Some days I'll be fine but then another day, walking up the many stairs to my bedroom will absolutely knacker me and I have to sit down for a while."
This is what some in the medical profession are calling 'long COVID', whereby those who have had coronavirus do not return to normal health after a certain period. Data on the prevalence of long COVID is very limited although statistics from the COVID Symptom Study app suggest that one in 10 people who are diagnosed with COVID are sick for at least three weeks or more.
Dr Nisreen A Alwan is an epidemiologist and associate professor in public health at the University of Southampton. She tells R29 that as yet there is no formal definition of long COVID but you can categorise it as long COVID if you haven’t recovered after four weeks (whether or not you’ve been tested) and are experiencing certain symptoms. These are varied but she says that common symptoms for most people are fatigue or tiredness, particularly after exercise but also after any emotional or mental exertion. "People tend to describe crashing: it could be immediately after, hours after or even the day after." As well as fatigue, symptoms may include breathlessness, palpitations, chest pains and chest heaviness. Then there are the neurological symptoms people are reporting, like having memory or cognitive problems, or not being able to read. Dr Alwan says that this is what is being called 'brain fog'. What’s bizarre, though, is the inconsistency: "Some symptoms stay, some symptoms go, some stay throughout from the start of illness and some develop a bit later that weren't there in the acute illness."
I still can't wash up pans as they're too heavy. I've not walked for more than 20 minutes straight since before March.
Amelia, 27, is a PhD student who contracted COVID in early March. "It’s been just over seven months since I first fell ill. I still get random muscle aches, particularly in my legs. I still have trouble breathing and shortness of breath after anything a little bit strenuous. Sometimes I find it difficult to remember words and thinking feels much harder than it did before. I still have to do things much more slowly. For anything beyond the most basic of household tasks, I have to really pace myself. I still can’t wash up pans as they’re too heavy. I’ve not walked for more than 20 minutes straight since before March."
The physical symptoms are now abating but the brain fog is particularly pernicious.
"I’m a PhD student, writing a dissertation on the philosophy of work while also writing a book on work. I’ve had to stop – hopefully only temporarily – the PhD because I just couldn’t think at the required level. Recalling even basic nouns, let alone the complex concepts required to write a philosophy PhD has been incredibly difficult. It feels like everything is stuck behind a barrier that isn’t itself visible. Like the kind of impossibility of action or thought you can get when you’re really hungover or really tired and you’re just unable to break down tasks into steps. It takes longer to remember things, they need to be dredged up rather than gently reached for. Nothing feels mentally at hand. I’d previously prized a mental quickness – the ability to make jokes that turned on jokes within themselves or referred obliquely to some clever reference – but I’ve now lost that ability and have had to reevaluate whether it was even worth prizing in the first place."
These symptoms can have a psychological impact too, as can the experience of having COVID in the first place. For Jessica, the fatigue and brain fog had to be managed alongside her mental health, which has been strained by the experience. "I am bipolar and suffer from depression and anxiety, both of which have been made worse by my experience with COVID-19 this year. I am definitely impacted psychologically by my hospital admission, what I witnessed while I was there, as well as the fear I felt when my parents were unwell and not knowing whether they, or myself, would survive. I would definitely say that the psychological impact of it has been really difficult."
It’s important to note that there are many other factors that can contribute to symptoms of this kind. The pandemic has brought with it a seemingly permanent disruption of normality, with changed routines, anxiety, reduced mobility and potential burnout all conspiring to leave us exhausted and disoriented. And there’s the fact that the ‘normal’ we return to when we’re healthy is far from any normal we’ve ever known. "If we want to define recovery, most of us are not doing the normal activity that we did before the pandemic," says Nisreen. "So that makes it really difficult trying to understand ‘am I really back to normal?’ The whole pattern of life is different." Nisreen does emphasise that of all the long COVID symptoms, only the fatigue could be explained by a change in activity levels.
While little is known about long COVID, the most important path to recovery seems to be slowing down and having regular check-ins with your GP. "I needed to learn how to rest," says Amelia. "This is not easy! It’s incredibly boring to rest, or at least it was for me. But I made myself understand it as something I had to really dedicate myself to. It’s really important to avoid, as far as possible, stress while you’re resting. This is easier said than done, of course, and the uncertainty about my health made it very hard not to worry."
As well as rest and check-ups, Jessica has been advised to keep her asthma pump with her at all times and has had some changes made to her meds. "I have had my medication changed for my bipolar and have been given extra medication to manage the anxiety, depression and PTSD (the whole package!)."
Politicians can afford to ignore it, because it's not quantified enough.
Dr Nisreen A Alwan
The most important thing, according to Nisreen, is learning what triggers the symptoms and adapting your life where possible. Clearer advice cannot be given until we know more about the condition, which won’t be possible until the problem is quantified.
"We hear every day on the news about how many positive tests and how many deaths but we hear nothing in terms of statistics on how many people are having this prolonged ill health and long COVID," says Nisreen. "And so, and unless we start doing that, resources won't be poured into studying it. Politicians can afford to ignore it, because it's not quantified enough."
Without a push for recognition and quantification, people will continue to see COVID as a flu-like illness from which you will probably recover within two weeks, rather than what it often seems to be: a virus whose symptoms can change your life for months on end. And long COVID cases will be considered a rare instance or, more worryingly, not taken seriously by GPs. "For people seeking healthcare there's a lot of dismissal," says Nisreen, "especially if they weren't tested. It depends on how your GP is, so it's a very case-by-case basis. And once you quantify it, I think that changes, because you're saying it's real and it's common, so people have to take it seriously."
Only once it is taken seriously and begins to be quantified will people with long COVID get the support they need. The stress and anxiety of being dismissed by medical professionals will be alleviated and the subsequent acknowledgement will put pressure on the government and employers to take people's long-term health into consideration.
If people are really going to recover from long COVID, they need the space and support to really rest and get better. That support will not come unless long COVID is taken seriously.