A day in the life of long Covid
It’s much harder than it looks.
Lazy
Not trying hard enough
All in your head
Hypochondriac
Just anxious and depressed
These are all common judgments about people living with long Covid, and other chronic illnesses, made by family members, friends, and even medical professionals.
Diagnosis with long Covid usually means a dramatic lifestyle change. To healthy people, the amount of rest needed, sometimes complete bed rest, is hard to comprehend. This misunderstanding about sufferers’ lives drives prejudice and a lack of compassion and empathy. The reality is that the work required to live with long Covid feels like a full-time job.
So what is involved in a day of a long Covid sufferer?
Rest and pacing
The primary focus of my day is remaining as rested as possible to avoid relapsing or ‘crashing’. This is not being lazy — there is a biological reason for resting. When my body is in a resting state, the parasympathetic nervous system, often referred to as ‘rest and digest’, is active, and my body can do the work of healing. If my body is stressed or overtired, the sympathetic nervous system is triggered and my body enters the ‘flight or fight’ mode. In this state, the body’s ability to recover is compromised.
Pacing (commonly referred to as “spoon theory” by many people with chronic disease) is critical. Pacing essentially means keeping activities within my energy budget. Like a rechargeable battery, the available energy for the day depends on how much the battery has recharged overnight. For healthy people, the battery charges to 100% most nights. For chronic illness sufferers, this is rarely the case, and very often my battery begins the day under 50%.
The primary objective of my day is to make sure my body has enough rest so it can continue to recover. An average day will see me in bed, either sleeping, resting, or meditating, for between 13 and 15 hours. Another 3–4 hours will be spent on the couch, reading, writing, or watching TV, more if I’m in a crash. Any activity must be gentle and approached with caution. Some people with more severe symptoms are completely bed-bound, and even reading is impossible.
Managing physical health
To support my body while it’s recovering, I must remember to take medications and supplements at the correct dose and time, keep hydrated, and maintain a suitably low heart rate. I also try to keep moving by doing gentle stretches. I’m fortunate that I am not bedridden, unlike some long Covid sufferers, and I try to incorporate some very gentle movements into each day to avoid the negative effects of being completely sedentary.
I have learned from experience that walking is too much exertion, so I keep moving by very low resistance pedalling on a stationary bike. For some, simply walking around the house is too much exertion. A process of careful trial and error is needed to determine individual tolerance to activity. Maintaining physical health takes time and requires considerable mental effort to do enough without doing too much.
Monitoring, experimentation, and learning
Many of us spend time monitoring our energy and carefully pacing. I keep a detailed written diary of every variable each day including what I eat, what I do, and symptoms. This allows me, through trial and error, to monitor what activities and foods trigger a worsening of symptoms.
Wearable devices and associated apps, such as Visible, are extremely useful to provide an objective measure of how my body is tracking. They allow tracking of heart rate, stress levels, and sleep, amongst other things. This data is also very useful to predict crashes and manage energy.
I monitor my symptoms constantly to detect changes that might warn of an impending crash. Many sufferers also run self-experiments, trying different supplements and prescription medications and noting the effects of different doses. I also spend time reading scientific literature about the latest long Covid research, listening to podcasts, and communicating with other sufferers so that I can do everything within my power to recover.
Most long Covid sufferers are far more knowledgeable about their condition than their doctors. All of this takes a great deal of time and mental effort.
Appointments and administration
Medical appointments, scans, and tests took up a lot of my energy in the first year after my diagnosis. Keeping track of the appointment times, results, recommendations, and prescriptions required not only good planning and documentation but also a level of medical literacy. I have been fortunate to receive income protection insurance, which comes with considerable administration involving regular completion of long forms and liaising with my medical team and my insurance case manager.
Diet and nutrition
Like me, many long Covid sufferers have developed new food intolerances or allergies, and food takes careful thought and planning. Eating the wrong foods, eating too late in the day, or eating too large portions can all impact my body’s ability to properly rest. Keeping a food diary has been essential.
Managing mental health
Depression and anxiety go hand in hand with chronic illness. In the past, when I’ve felt anxious, I’ve relied on exercise to manage symptoms. As I am now exercise-intolerant, this coping mechanism is off the table. The best tool I have found to manage mental well-being is meditation, which has the added benefit of giving the body and mind complete rest.
I meditate for at least an hour each day, and through the day I am constantly checking in with my self-talk to manage negative emotions. I focus on my breath throughout the day to keep my stress levels down. Managing mental health requires a level of self-awareness to catch negative emotions before they completely take over.
Acting
On the occasions when we are able to socialise, we may appear to be our normal selves. This leads our friends and family to assume we are ‘better’ or that we are faking our illness. In reality, it’s the opposite. We are faking being well.
Socialising often requires days of preparation, followed by days of recovery. Like an actor preparing for a play, we rehearse the event, planning each detail including timing, what we will eat and drink, and where we will sit or take refuge if we have had enough. We consider how long we will stay, how we will get there and back, and how we will manage the risk of exposure to Covid-19 or other illnesses. It takes a huge effort to plan and execute.
Equivalent to a job
A recently published paper outlined the tasks involved in living with chronic illness in a similar way to a job and person specification. All the necessary tasks, as well as the skills and competencies required to complete those tasks, were assessed. The paper identified 13 different skills and 13 different abilities, as well as resources and support, needed across the following categories: self-care, managing resources, managing relationships, coordination, and research and education.
Skills needed to live with a chronic illness include communication, executive function, and health literacy. Abilities include oral and written comprehension and managing multiple responsibilities at once. Resources include computers, support people, and medications. This highlights the heavy demand placed on chronic illness sufferers at a time when capacity and resilience are already low due to being unwell.
Long Covid sufferers must be their own occupational therapist, psychologist, nutritionist, medical research scientist, spiritual guide, and data analyst, as well as a convincing actor. Some of us also try to hold down jobs, care for dependents, manage a household, and advocate for ourselves and others. The level of physical impairment, cognitive dysfunction, and emotional strain that sufferers must live with means we are working very hard to simply survive.
What can we do?
To my fellow long Covid sufferers, know that it’s valid to feel overwhelmed. Living with this condition is hard and requires more of us than we have to give. It’s important to give yourself the same compassion and kindness that you would give a close friend. We are suffering, but we are not alone. In our darkest moments, we must remain hopeful that treatments will be found to allow us to return to our lives.
If you are a friend, family member, carer, or community member of someone with long Covid (or another chronic illness), it’s important to understand that we are giving everything we’ve got to living the best lives we can. We don’t want to live like this, we did not choose this illness, we want to recover and we want to be more active. The accusation of laziness rankles and with good reason. Rather than judging us, please have compassion for our plight. It will be very much appreciated, and your support and understanding will ease our burden.
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