Let recovery from CFS and Long Covid be your purpose

During the most acute period of my CFS and Long Covid journey, I felt like I was in a wilderness. It was hard not to define my life during those months by the things I could no longer do: work, walk more than a few dozen steps, stand longer than a couple of minutes, sit up for very long, sleep a full night, watch TV, read a book, empty the dishwasher, cook, clean, talk on the phone, see friends. It seemed I could barely allow my mind to think without my brain feeling engorged and my skull pressurised.

The transition from someone who had long derived self-worth from being productive, to becoming an unemployed, housebound, long-term sick person felt a lot like losing myself. Denied all activity that had previously offered me purpose, I came to feel like I no longer really existed in any meaningful sense. At my lowest moments I wondered how long I would be able to continue existing in this lifeless way. I didn’t want to end my life, but I desperately wanted some respite from this purgatory. I started wracking my brain for quick fixes, and so found myself one day googling self-induced coma for CFS. I thought it might be nice to have a holiday from consciousness for a few months.

Perhaps you are in a similar place right now. I wish I could say there was a quick fix for this limbo existence. In reality though, what has helped has been a very gradual process of learning to be with the hopelessness and uncertainty, while learning to find meaning and purpose right in front of me.  

The French writer and philosopher, Albert Camus, wrote an essay during the Second World War called The Myth of Sisyphus. In this essay, Camus boiled down the dilemma of the human experience to what he called the absurd. The absurd is the conflict between our tendency to expect that life will treat us with some degree of fairness and justice, and the reality that the universe is indifferent to our hopes. If this idea is depressing you even more than you already were, bear with me!

I was certainly aware that bad things happened to people all the time, including people close to me. But still, I found it incredibly difficult to comprehend that something seriously bad was happening to me. It felt like some implicit deal I had with the universe had been broken.

Naturally, when we are rocked by a traumatic experience like, say, becoming chronically unwell with a medically unexplained illness, our expectations about the fundamental goodness and malleability of our world can be unceremoniously capsized. Psychologists Richard Tedeschi and Lawrence Calhoun have described these kinds of experiences as being like earthquakes, which shatter our basic understandings about our future, roles, capabilities and the very ways that we make sense of our lives.

In the wake of such psychologically and physically seismic events, we often struggle to rebuild ourselves and our sense of our place in the world. However, in recent years psychologists have started to look beyond post-traumatic stress and have turned their attention to post-traumatic growth. I will post more about this concept in future, but for now I want to emphasise the headline that the very experiences which can feel like they break us down, can over time fuel profound personal growth. As psychologist Scott Kaufman summarises:

It is precisely when the foundational structure of the self is shaken that we are in the best position to pursue new opportunities in our lives.

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Back to the absurd though. For Camus, a powerful illustration of the core absurdity of human hope and suffering was the Greek myth of Sisyphus. Sisyphus was a guy who pissed off the gods in one way or another. And, being spiteful gods, they condemned him to an eternity in the underworld of endlessly repeating a pointless task. He had to haul a giant boulder to the top of a mountain, only for it to roll back down again, and again, and again, and again.

Maybe something in this story sounds familiar. Certainly for me, waking up day after day, to an interminable housebound existence without much on the agenda besides trying my best to tolerate a litany of symptoms, and perhaps a modest stretch if I had enough strength, felt more than a little Sisyphean. But for Camus, Sisyphus’ predicament isn’t just relevant for those of us occupying limbo existences of one kind or another. It is emblematic of all human lives. Whatever your privileges and challenges, there is nothing inherently meaningful about our lives. It is up  to us to imbue them with whatever meaning we can.

And so Sisyphus, confined to his seemingly meaningless task, made his boulder his thing. Though his task is brutally hard, repetitive and thankless, he embraced it, at least in Camus’ retelling. Sisyphus learned to be deeply present with the giant rock in front of him. He came to deeply see it in all its complexity, to feel its ridges and nooks. And in so doing, he created some kind of purpose and meaning for his life. Which speaks to the words of the Holocaust-surviving psychiatrist Viktor Frankl:

In some ways suffering ceases to be suffering the moment it finds a meaning.

To the degree that we can get into the task in front of us, putting one foot in front of the other, we can imbue our lives with meaning. Even if that happens to be recovering from a chronic illness without a clearly understood treatment or pathway to recovery. As painful and uncertain and tedious and traumatic as living with CFS and Long Covid can be, what if we can try to make our recovery our thing, just as Sisyphus did with his rock?

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In many ways, the will to recover can imbue our lives with a very vivid and visceral sense of meaning. This is the purpose of rebuilding our health and restoring our functioning so that we can one day reconnect with all those things that make life meaningful to us. In some ways, recovery offers a more direct line to meaning than healthy existence, in which we can easily become complacent and take things for granted.

There’s a lyric by the band, TV On The Radio, that goes:

I’m scared to death that I’m living a life not worth dying for.

I remember, back in my pre-fatigue days, being slightly haunted every time I heard that line. A part of me knew that I wasn’t living nearly as full or meaningful a life as I could be. But the irony, of course, is that when all those things that make life beautiful are taken away from us, our appreciation of them becomes suddenly painfully visible. In some ways this insight offers us an admittedly tough opportunity.

A person with a terminal condition may find it necessary to eventually accept that they will never again get to enjoy the richness of life. However, for those of us with CFS and Long Covid, we live with the possibility that we may once again come back into the world. The prospect of recovering from CFS and Long Covid, and carrying with us an embodied sense of how easy it is to lose most of what matters to us, feels a little like being born again.

Throwing yourself into your recovery is also throwing yourself into the possibility that your life may yet have many more weird and wonderful chapters. So do your best to hold onto that hope. In the words of German philosopher Friedrich Nietzsche:

He who has a why to live can bear almost any how.