by Vanessa Huang
Illustrated by Lamisa Chowdhury
Despite the estimated 2.2 million people in the UK that have long Covid, it is, in many ways, a hidden illness. There are the people who don’t know they have it, continuing to struggle with energy and cognitive function but never associating these with long Covid. There are the people that minimise their symptoms due to stigma and misinformation. Then there are the people that cannot hide it – those with symptoms so debilitating they are themselves hidden from society, disappearing from work, school, and social events. And when we don’t see long Covid, it’s easy to forget about it. I spoke to two students and Covid long-haulers, as they describe themselves, who feel they’ve been left behind and let down in every possible way.
Alice*, who is currently completing a masters in Philosophy, contracted Covid in January of this year, thinking at first that it was a bad sinus infection. She already had asthma, but it was never bad enough that she needed an inhaler. She was now “using this reliever inhaler ten times every four hours” and couldn’t speak or swallow either. This “horrendous suffering” eased after a week or two and she started experiencing more significant improvements after a month. But then new symptoms started appearing, different from the ones she initially had.
Maya* recently graduated with a masters in Economics. She contracted Covid at a similar time, in mid-December 2021. She had a mild infection: chills, a stuffy nose, and a strange feeling in her head. She wasn’t worried – it seemed like everyone around her was coming down with Covid then. She was also vaccinated, fit and healthy. Her symptoms cleared within four days and she was out of self-isolation in time to celebrate Christmas. “Little did I know this infection would soon turn my whole life upside down,” she says. Like Alice, symptoms began popping up again. She was flying home to see her family after January exams when she was hit by a spell of chest pain, dizziness, and nausea. She’s had symptoms ever since.
Post-COVID Syndrome, also known as “long Covid”, officially refers to the existence of Covid symptoms more than four weeks after infection. There’s an enormous list of common symptoms: fatigue, shortness of breath, loss of smell, muscle weakness, brain fog, chest pain, heart palpitations, and more. Alice and Maya have each experienced most, if not all of these.
Fatigue is one of the particularly misunderstood symptoms. It’s a term so broad that it can be mistakenly applied to normal variations in functioning. Unlike the tiredness that’s alleviated with a nap or a good night’s sleep, the fatigue long-haulers experience doesn’t go away even when they’re resting or sleeping more than usual. Fatigue also doesn’t just mean cutting out the most energy-intensive activities in your life. Speaking, watching TV, breathing, and eating – these all require energy.
But perhaps the most punitive of symptoms is post-exertional malaise Conventional wisdom suggests the more you practice something, the easier it gets. Long Covid throws all that out the window. With post-exertional malaise, increased exertion doesn’t just fail to bring about any improvements in symptoms – it exacerbates them. As Alice puts it: “The more you fight against it, the worse you get.” These “crashes” can last days, weeks, or even months. Sometimes, the effects are permanent.
Alice experienced post-exertional malaise for herself when she attended a conference in Oxford. “I was doing too much: walking, climbing stairs, using my cognitive function,” she says. “I just did so much that on the second day I felt awful. I couldn’t stand. I didn’t know where I was going.”
Out of the more than two million in the UK that have long Covid, only 23,273 have a formal diagnosis. Maya received hers after two months; Alice hasn’t had any kind of medical acknowledgement yet. The biggest challenge she’s faced is getting doctors to believe her. “The routine exams that we get done don’t show that something is wrong, so a couple did come out abnormal but most came out normal,” she says. “And it was just doctors gaslighting me, saying, ‘Oh, the exams don’t show anything.’” The lack of an established physical biomarker for long Covid means doctors look at patients’ descriptions of their symptoms and conduct tests to rule out other potential illnesses. But symptoms that are difficult to observe from the outside are also easily psychologised, blamed on stress or anxiety. Alice has seen cardiologists, neurologists, psychiatrists, and pulmonologists. None of them have given her any answers.
On the other hand, having a diagnosis doesn’t necessarily eliminate any uncertainty. “I’ve seen so many doctors and specialists, but none of them have been able to help me,” Maya explains. “All they keep on saying is that I need to rest and be patient until we have some kind of treatment.”
Research indeed hasn’t yet determined any viable treatments. The NHS has invested £90 million to establish long Covid clinics, designed to serve as “one stop shops” for long-haulers. But these clinics are plagued by long waiting times and treatment tends to consist of suggestions to try cognitive behavioural therapy. Some doctors are also still keen to suggest increasing levels of exercise, blaming any loss of function on “deconditioning.”
In the absence of comprehensive medical support, long-haulers have to adapt to recovery that’s non-linear, with symptoms that often shift and fluctuate. Both Alice and Maya moved back home after finding it impossible to manage on their own. Maya pushed through the remainder of her degree, completing it in June. She spent her days at home, trying to balance watching online lectures with resting. She also received extra time in her summer exams, something she credits with mitigating the effects of her brain fog. This additional exertion, however, took its toll: “I felt really ill the whole time and my health definitely further deteriorated due to not being able to rest, so looking back it wasn’t a good thing for my health and I’m not sure I’d do it again that way.”
Alice, too, completed her teaching in Lent Term. But submitting her assessments in the summer was inconceivable and she deferred them all to January 2023. She returned to London in September – her condition had improved and she was feeling optimistic. We had a Zoom call at the start of term where she was tired but altogether doing better than she had in a long time. By November she had relapsed, badly. Even looking at a screen was too taxing – the little energy she had was just enough to send me ten minutes of voice messages.
Alice is now hoping to defer her assessments again. She doesn’t know if her request will be approved – they’re assessed on a case-by-case basis and the success of her first request doesn’t mean anything for her second. What she does know is that if this deferral is granted, it’s the last one she’ll get. LSE policy sets a maximum period of registration for all taught degrees: for a masters degree, it’s two years. If she can’t complete her assessments before the prescribed deadlines, with another deferral or otherwise, she’ll be leaving LSE after more than a year of pushing herself to the limit, with neither a degree nor the possibility of returning to complete it. She’s trying to do as much work as she can, but the more she pushes herself the more function she loses. “I’m scared of not being able to sit up, not being able to eat, not being able to shower,” she says. “That’s what’s at stake.”
Long-haulers navigating these challenges without any support are going through an incredibly solitary experience. “It’s really hard to keep your friends and make new friends,” Alice tells me. When she meets new people, they rarely seem to understand what long Covid is, making comments like “What’s that? Have you got Covid right now? Stay away from me.” She believes there’s also an excessive focus on mortality in conversations about Covid. Mortality rates have fallen and the general sentiment has accordingly shifted: Covid is, decidedly, a thing of the past. She points out how there seems to be this illusion of infallibility when it comes to Covid – we never imagine we could be the ones suffering from a “disabling illness that can render [us] ill for months to years.”
Faced with these constant frustrations, long-haulers have built their own support networks, where community and self-advocacy are central. Support groups have become critical sources of information, not just for their members, but for a wider scientific community that’s still coming to terms with this newly-developing illness. One in particular, LongCovidSOS, presented information to the World Health Organisation, while the Centres for Disease Control and Prevention in the US based its guidelines on long-haulers’ firsthand experiences.
Alice founded a long Covid support group here at LSE. Their first meeting was poorly advertised, shared just the night before, yet still attracted seven attendees. They got together and shared their knowledge, suggesting different specialists and talking about meditations they’ve found helpful for stress. “These were the only people that got me,” Alice says.
This is far from the first time a chronic illness has been maligned,and it’s unlikely to be the last. But there will always be a collective of long-haulers, surviving through sheer resilience, using what little energy they have to further our understanding and make things a little easier for people newly disabled by Covid. It’s time we listened to them.
*Some names have been changed to preserve anonymity.
