Five things I’ve learned from living with long covid

For the Dutch and many others elsewhere, life is back to normal. Face masks are no longer the defining characteristic of our public spaces. Social distancing – our so-called ‘1,5 meter society’ – seems to be a thing of the past. Everyone is eager to forget about the pandemic that swept across the globe in 2020 and much of 2021.

For some however, it’s not that easy. Around 10 to 20% of people develop persistent symptoms following an infection with COVID-19. They experience a wide variety of symptoms, ranging from fatigue and breathlessness, to muscle aches and brain fog. Experts worry there may be tens of thousands of people in the Netherlands who have ‘long covid’, the lingering or resurgence of symptoms lasting anywhere between two months and several years.

There are a number of theories going around about what exactly long covid is. One theory suggests that damage to the blood vessels and tiny blood clots (‘microclots’) are impairing blood flow, restraining cells’ ability to produce energy. Another concerns the idea that the virus continues to replicate in the body, triggering a persistent response from the immune system. A third theory suggests that the immune system is out of whack, prompting a chronic inflammation of the brain. Any conclusive evidence however, is still lacking.

Unfortunately, I am one of the so-called ‘long haulers’. In March, I tested positive for COVID-19. Though I seemed to recover at first, my health declined as the weeks went by. I was increasingly exhausted, easily overwhelmed and couldn’t think clearly. By May, I was unable to fulfil even the most basic of household chores, let alone continue my work.

Seven months in, I’m still wrapped up in a rollercoaster I hope will eventually end in recovery. It’s ups and downs, unyielding cycles of hope and despair, resistance and acceptance. In the hopes of reaching others who might recognize themselves in my journey, let me share five things I’ve learned from living with long covid.

1. No, we’re not all tired sometimes

Fatigue is one of long covid’s most common symptoms. Dutch researchers found that 86% of long covid patients reported being fatigued six months after their initial COVID-19 infection. Moreover, these were patients who had not been hospitalized, had had good health, and were on average only 48 years old. There’s no two ways about it: the myth that (long) covid exclusively hits the sick and elderly is simply that – a myth.

Let’s be clear about something: being fatigued is not the same as being tired. Fatigue is the lingering sense of being extremely tired and sleepy, with measurable physiological changes and reductions in physical and/or mental performance. It impacts every aspect of life. Sometimes everything you do, from getting up and getting dressed to preparing dinner – and sometimes even just sitting on the couch, feels like you’re running a marathon. Sometimes the days feel preposterously heavy and slow, and there’s little you can do about it. What’s more, unlike tiredness, fatigue cannot be alleviated by just getting a good night’s rest. Instead, it often compounds it. Researchers in the U.S. found that as much as 40% of people with long covid also report sleep disturbances.

A particularly unforgiving aspect of long covid fatigue is post-exertional malaise, or PEM: the resurgence or worsening of symptoms after physical or cognitive exertion. We know PEM to be one of the defining characteristics of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Studies show that people living with ME/CFS exhibit a different physiological response to exercise compared to healthy controls. In fact, scientists suspect that ME/CFS patients’ genes related to energy metabolism and the immune system express themselves differently in response to exercise, causing fatigue, pain, influenza-like sensations and cognitive impairment.

Long covid flare-ups can be similarly brutal. Last Summer I tried to take up swimming again, something I used to enjoy a lot. As per the recommendation of my physiotherapist, I simply ‘floated’ in the water for about half an hour. Despite being cautious however, I still spent the next three days in bed completely exhausted.

2. The brain fog is real – and terrifying

Besides fatigue, studies show that the majority of long covid patients experience a range of cognitive problems, from difficulty concentrating and remembering words, to forgetfulness and brain fog. A neurologist explained in The Atlantic that in essence, brain fog is a disorder of the brain’s executive function, in which “anything involving concentration, multitasking, and planning—that is, almost everything important—becomes absurdly arduous”. It’s even been likened to a condition called “chemo brain”, the cognitive deterioration experienced by people undergoing chemotherapy.

Also, it’s measurable. In a 2021 study, long covid patients (who, again, were relatively young and had not been hospitalized) performed worse on a variety of cognitive tasks compared to individuals who hadn’t had the virus.

Brain fog is terrifying. It makes seemingly simple things like having a conversation, driving a car or even writing become frustratingly difficult. On particularly bad days, even the most mundane activities like grocery shopping become impossible. It’s like the busy and noisy environment of a supermarket and the looming task of gathering the items on your shopping list quickly becomes so overwhelming that your brain simply shuts down.

Exploring what is known about the causes of long covid cognitive impairment is not for the faint of heart. In an insightful article that includes her own experience as a long covid patient, Emma Kavanaugh proposes that the persistent presence of virus particles in the body may cause the immune system to become active continuously, inducing chronic inflammation throughout the central nervous system or ‘neuroinflammation’. This may in turn generate learning and memory problems, and possibly lead to or worsen anxiety and depression.

Besides neuroinflammation, a 2022 study found an alarming loss of grey matter in the brains of long covid patients; that part of the brain that is essential to cognitive functions like thinking, remembering, and feeling. This and other studies have highlighted the excessive elimination of synapses in the brain following an infection with COVID-19, a process that has been linked to neurodegenerative disorders like Alzheimer’s and Parkinson’s disease.

3. P is for pace, plan, and prioritise

In the Netherlands, occupational therapy is one of the most commonly prescribed treatments for long covid. Although it doesn’t ‘treat’ long covid, it does help people to better manage their symptoms. The three P’s – pacing, planning, and prioritising – are key. Ingebj?rg Midsem Dahl, author of Classic Pacing: For a Better Life with ME, writes that pacing is:

“splitting activities into smaller bits and taking frequent rest breaks. It also means finding less strenuous ways of performing activities. When less energy is spent on some activities, you’ll have more energy left over to have fun. Although that is an obvious boon, you’re probably not jumping up and down right now thinking ‘Hooray, pacing is what I’ve always dreamed of’”.

Although it definitely isn’t what I’ve always dreamed of, practicing pacing has led me to three important realizations. First, it forced me to recognise that everything – from grocery shopping to having a coffee with a friend – is an activity that requires some level of cognitive and physical energy to perform. Though this might seem self-evident, it’s been quite the revelation for someone who considered anything not career-related to not really count as an activity.

Second, pacing compelled me to up my planning and prioritising game. If I’m having that coffee with a friend, I’ll need to carefully plan how long I can meet them for, make sure the place we meet is not too noisy nor too taxing to travel to. I’ll need to consider what activities I did the day before, what I will need to get done that same day, as well as my plans for the next day(s). It includes making difficult choices every day, because more than ever, doing it all is no longer an option.????

Third, being able to pace, plan and prioritise effectively largely depends on whether I know where my physical, mental and emotional limits are. Ironically, I hardly do: I had always been a ‘I want to do it all’ kind of person, wilfully ignoring any sign that read ‘slow down’. It’s perhaps no wonder that I’m currently working with a psychosomatic physiotherapist on getting back in touch with my body, recognising stress and tension and finding ways to relax and unwind.

It also requires a hefty dose of self-compassion. As one occupational therapist specialised in fatigue management writes, “it is common for clients to repeatedly ignore the body’s signals, citing that they have ‘too much to do,’ ‘feel guilty if they sit down’, or they believe others will think them lazy”. Without tackling such beliefs, recovery will simply be impossible.

4. Don’t underestimate the profound grief

I recently asked a friend who’s about my age and has long covid how she managed the going back and forth between feeling hopeful about eventual recovery to despair about the future. She’s been ill since the first wave of the pandemic hit the Netherlands in March 2020. Having recovered somewhat, she’s now able to work for a couple of hours every day. She told me she no longer hopes for things to go back to how they were before. Instead, she said she has accepted the limitations imposed on her by long covid, and is now looking for ways to make life meaningful within those limitations. Though it makes every sense in the world, it still hit me like a ton of bricks.

A covid charity in the UK recognizes that it’s common for long covid patients to grieve for their former self-identity and lifestyles which are no longer possible. Careers fall away, lives change unrecognizably, imagined futures seem to evaporate. In Social Work Today, Kate Jackson writes:

“a person with a chronic illness [when] Looking backward, he can see everything illness has taken from him or has forced him to relinquish. Looking forward, he can’t see anything quite clearly. There’s no going back to the past, and the future is uncertain.”

It is well known that acceptance of disability is a crucial aspect of well-being. Getting there however, is quite the process, taking you first through denial, anger and frustration, bargaining, despair and hopelessness. It’s not a neat linear process either, there’s a lot of going back and forth between the different phases before there is even a whiff of acceptance.

I still get sad and frustrated, especially on days when the hours I sleep outnumber the hours I manage to be awake. I still despair, especially when picking up on news items like the one in which the Dutch state benefits agency UWV declared 84% of the people with long covid they assessed this year to be no longer fit for work. At the same time, it could be a lot worse. I feel privileged having a strong support network. I’m grateful for the small steps forward I’m taking every day. After all, the small wins count too.?

5. We owe A LOT to the chronic illness community

More and more, scientists are discovering similarities between long covid and ME/CFS. ME/CFS is a chronic, fluctuating condition that affects many different body systems. Like long covid, ME/CFS is characterised by a debilitating fatigue, brain fog and PEM. What’s more, it’s often triggered by a viral infection. According to Jaime Seltzer, Director of Scientific and Medical Outreach at the non-profit #MEAction, the emergence of long covid is not at all surprising; pockets of ME/CFS have always followed the outbreaks of viral diseases. ME/CFS associations were quick to incorporate information and resources on long covid.

Although experts estimate that globally, some 20 million people have ME/CFS – of which 70% is unable to work and 25% are completely homebound – ME/CFS has been structurally ignored, dismissed and underfunded. It affects four times more women than men, and has long been viewed as primarily a psychosomatic issue. Mockingly called the ‘yuppie flu’ in the 80s, researchers were commonly discouraged from studying the condition.

This resulted not only in a lack of knowledge about the biological dimensions of ME/CFS but also the absence of effective treatments. A common prescription included cognitive behavioural therapy as well as graded exercise therapy (GET). The idea behind GET was that PEM was believed to be a form of ‘exercise phobia’, which could be remedied by gradually increasing physical activity. Unsurprisingly, this often did more harm than good.?

As a result of being stigmatized for decades, ME/CFS patients worldwide have had to band together to find support, share knowledge, and convince researchers, doctors and policymakers of the need to better understand the disease. Decades of activism and pioneering work on symptom management has laid the groundwork for clinicians to support long covid patients today. ?

It is hopeful that, if anything, the pandemic sparked a renewed research interest in post-viral conditions, including ME/CFS. It is exactly what a group of Stanford researchers thought sadly necessary for the world to finally start taking ME/CFS seriously.