On Living Slow in a Fast World
Is there wisdom to be found within living with Long COVID and Myalgic Encephalomyelitis?
Written Mar 05, 2025
I’ve been alive 11,907 days and continuously sick for 1,530 of them. That’s about 13% of my life. For these 1,530 days and counting, I’ve been living with chronic medical conditions triggered by an infection with COVID-19 — what you may know as long COVID.
Long COVID is a term that was created by patients in the Spring of 2020 who were still experiencing symptoms, even though doctors told them they should be better any day now. Many of those people are still sick & still waiting. The term ‘long COVID’ has evolved as time has gone on and folks remained sick, and many more became and stayed sick. The name covers a dizzying array of symptoms and conditions, affecting every bodily system, and overlapping with many other diagnoses.
My experience of long COVID took a path that was unfortunately well-trodden. I developed a chronic condition triggered by COVID-19 known as myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS). Before the COVID-19 pandemic, there were thought to be over 3 million Americans living with ME/CFS. It’s estimated that this may increase up to 9 million, following all those who got sick with COVID-19 and developed the condition.
ME/CFS is a serious, chronic, complex, systemic disease. In the bodies of those living with ME/CFS, something key to the functioning and operating of our systems is awry. Our cells are no longer able to metabolize energy in the proper way. Our nervous system and brain is no longer able to organize itself effectively. We run inefficiently, building up toxins and waste, and we are unable to clear them. We experience pain, fatigue, difficulty thinking, difficulty digesting, and many more symptoms across every system of the body.
The verdict is still out on what causes this condition, though it is clear it can be triggered by an infection or traumatic incident. Treatments are few, experimental, and difficult to access or afford. The condition has a history of being dismissed, denied, and under-researched.
One of the key symptoms of ME/CFS – and the single most frustrating and debilitating symptom for me, personally – is what is called post-exertional symptom exacerbation (PESE) or post-exertional malaise (PEM).
In simplest terms, PESE is becoming extremely unwell after physically doing something or even cognitively doing something that used to be tolerated. This could be something as simple as taking a shower, using the toilet, driving a car, or using a computer. The only way to recover from PESE is through total rest - horizontally in bed, in the dark, and the quiet.
For me, PESE feels like a combination of the worst hangover I’ve ever had with horrible jet lag at the same time. My body becomes heavy, as if poisoned lead runs through my veins instead of blood. My brain is thick and fogged and I have difficulty thinking or listening. I feel nauseous and have dull and sharp pains in different parts of my body. My digestion slows, my blood gathers in my feet, and various parts of my body become inflamed and hot to touch.
Depending on how ‘big’ the over-exertion was to cause the flare of PESE, it can take days, weeks, or even months for someone to recover to their baseline. It also has a cumulative effect. If we overdo it today and are ill from PESE tomorrow, if we were to overdo it again, we’d become even more ill. It is like quicksand that consumes you — and the only thing that heals it is rest, and minimizing your activity.
The exact mechanism behind PESE is still being researched. But it’s thought to be caused by a complex interplay of factors, including abnormal immune responses, dysregulation of the energy metabolism system, and issues with the neuroendocrine system, that lead to exaggerated systemic inflammatory responses following even minimal exertion.
What’s clear is this — there are real, biological changes and real, systemic bodily dysregulations. People experiencing PESE cannot push through, and must adjust their lives in order to reduce their suffering.
Living with this condition is extremely challenging. I cannot adequately express the depth of pain, the severity of suffering, the level of grief that I have experienced. I have reorganized my entire life to accommodate living with such a condition, and still, I often over do it and experience flare-ups of PESE that leave me horizontal, as sick as someone with the flu, unable to think or move my body.
I’m now in my fifth year of living with this condition. People who I interact with often share that they are inspired by my authenticity – by the ways in which I show up in my body honestly, how I do not pretend to be well when I am unwell, and how I always ask for what I need and speak up if my needs are not being met. People also seem to be refreshed by the ways in which I prioritize my body’s needs and center rest in all areas of my life.
But the thing is – I don’t really have a choice!
I must rest, or I will cease to be. I must show up authentically, because I cannot pretend. I must name my needs, because if they are not met I cannot be present. I must move slowly in an urgent world, because I have no other option.
It seems to me that there is a unique and deep wisdom and medicine that comes from living with ME/CFS. With PESE, we have been relieved of the ability to ‘push through’. If we were to ignore our pain and push through it, covering it with medication or some other numbing agent, it would not be possible to outrun it. We may be able to go a few days, or even stretch it a few weeks with overextending ourselves, but sooner or later our bill comes due. We crash, and we must rest or we would rapidly descend into further and further very severe illness. Our bodies would otherwise perish.
PESE teaches those who live with it to relinquish any illusion of pushing through. It forces us to listen to our bodies, over anyone else. It forces us to prioritize our rest. And it forces us to live at a pace that is much slower than our capitalist and colonial society demands.
And I can’t help but wonder — how might the world, right now, benefit from this hard-won wisdom?
In what ways may we — those who live with ME/CFS — be living examples of a different way, for those who don’t experience the same kinds of bodily limitations?
We are living through a time of great collapse and rebirth. There is so much to be done, and that feeling seems very present for those concerned with justice and liberation. Within my circles of sacred activism, there is often an underlying sense of urgency to meet the demands we face. Within my wider circles of activism, urgency is front and center. There is a feeling present that we must act or we will die. The news certainly reinforces that. The dominant messaging right now that I am hearing and seeing is that we must push through our feelings of grief or exhaustion, because there is simply too much work to be done for us to rest.
I am not downplaying the critical nature of our times. I believe there is an imperative for us each to show up, repeatedly and continuously, in the pursuit of collective liberation. I believe there is a real immediacy and NOW-ness in our work. The work IS now. The work is each day. The time to show up, speak up, and fight forces of darkness IS now.
And.
What costs are we bearing when we deny our bodily needs, ‘push through’, and bring ourselves to a place of exhaustion and depletion?
What do we leave behind when we move only from a place of urgency?
What models for the new world are we creating when our actions are rooted in self-denial and bodily harm?
In what ways can slowness, stillness, rest, and showing up authentically in our bodies benefit the long-term success of the movement for liberation?
As much as I have suffered from living with Long COVID and ME/CFS, I have gained deep wisdom. And I believe I am here now, living with this condition in a time of societal collapse, to be an embodied example of slowness. To hold the energy of stillness, of rest, of alignment with the natural rhythm and season of our bodies. To shine a light into the dark areas within us all where capitalist and colonial ideas of productivity, success, and time still reside.
As things go faster and faster and faster, I will be here, like a counterweight, balancing the speedy unraveling with my slow, steady presence.
I don’t have the option to go any faster.
If you do — I invite you to consider the questions raised here, and how you might benefit from more slowness, even when things appear to be screaming at you to speed up.
