Running on empty? Here is how to manage the ‘work’ of chronic fatigue

“One of the things that people routinely say in the clinic is: ‘It’s really difficult because we look okay and people around us just don’t get it’,” says health psychologist Vincent Deary, who also serves as professor of applied health psychology at Northumbria University.

At the UK’s first transdiagnostic fatigue clinic, Prof Deary gets it and I am surprised. As someone who has suffered from extreme fatigue, I might have once stayed away from psychologists like Prof Deary, fearing they would tell me my fatigue was some kind of “mental” substance – one that could be banished with sufficient reserves of steely resilience.

Prof Deary has spent decades working with people whose energy-limiting autoimmune diseases, fibromyalgia, myalgic encephalomyelitis (ME), and most recently, Long Covid, have left them with empty tanks. But his understanding extends beyond the purely conceptual, emanating from first-hand experience of almost a year of post-viral fatigue.

“I had to learn, ironically, to do all the stuff I’ve been telling people in the clinic to do,” Prof Deary says. “And it’s a lot easier to tell people than to do it.”

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In his new book, How We Break: Navigating the Wear and Tear of Living, the health psychologist translates the raw, almost incomprehensible experience of deep fatigue – that unwelcome roommate I have lived with for almost a decade – into language. “My main role at the clinic is to help people manage the work of being chronically exhausted,” Prof Deary says.

The irony is not lost on him: the very individuals who judge themselves for a perceived inability to do “work” are already working at full capacity. The hidden labour of chronic fatigue is trying to prove the legitimacy of a symptom that eludes straightforward explanation and objective measurement.

Many of Prof Deary’s post-cancer patients, while lamenting their intractable fatigue, have been met by quizzical looks from their doctors who simply could not understand why they were not happy to have survived the war. It seldom occurs to us that survivors – shell-shocked, physically depleted, and even missing parts of their bodies – might still be in the trenches. This time, however, the battle is against unrelenting exhaustion, and a seemingly unending demand for accountability.

As someone who lives with unremitting fatigue, I must routinely account for why I’m not working (or working only part-time), why I still have a bedtime of 9pm sharp, and why – factoring “post exertional malaise” (worsening of symptoms after exertion) into my calculation – I can meet you in approximately three days but not now. That will be because I used up too many “spoons” – a metaphoric unit for counting energy – writing this article.

It is clear that people living with profound fatigue continue to labour, even when societal norms fail to recognise their efforts as real “work”. Naturally, this begs the question: what is the meaning of work?

One of the things that Long Covid has done for us, the kind of meagre silver lining, is that it’s focused our attention on the long-term management of fatigue

According to Prof Deary, work is the active attempt to close the gap between what is and what you think ought to be. For those grappling with chronic fatigue, this can involve trying to explain away the discrepancy between what you are able to do and what society expects you to be able to do. For people suffering from non-clinical levels of tiredness, let’s call work the gap between wanting to run a 5k or play Let it Go on the piano, and actually doing them.

Closure of this gap demands time, motivation, and energy – the ingredient most of us take for granted, but is indispensable. Without it, the whole undertaking becomes a biological impossibility – one which is rarely, if ever, due to a lack of will or desire.

According to Prof Deary, “the most common sort of emotional concomitant of fatigue is often frustration because of that mismatch between aspiration and capability”. And that, in his view, is part of what differentiates fatigue from depression: that sinking sensation at the pit of your stomach as you stare at an unbridgeable chasm between wanting and doing.

If fatigue is not the same as depression, what is it? Quite simply, Prof Deary defines fatigue as a mismatch between our demands and our capacity to meet them – a mismatch which, “when pushed too far for too long” leads to “breaking” or, in biological terms, “allostatic overload”.

Contrary to the notion that our fatigue is something that can be psychologically overcome, Prof Deary tells me that our “breaking point” does not respect tidy divisions between the “physical” and the “psychological”. Instead, fatigue tends to be the common end point of a complex interplay of factors – some psychological or emotional, and others physical. Regardless of the catalyst, be it a virus, a high-pressured work environment, a break-up, or more likely, some combination of them all, this common end point involves the dysregulation of our multiple biological systems.

“That’s why, with fatigue, you need to attend to the biological. People often have to learn how to effectively manage what energy they have without consistently overdoing it,” he explains. “One of the things that Long Covid has done for us, the kind of meagre silver lining, is that it’s focused our attention on the long-term management of fatigue.”

It was in the early days of the Covid-19 pandemic that Amy Arthur, science journalist and author of Pace Yourself, suffered a severe relapse of the ME that had left her wheelchair-bound at the age of 15. Ultimately she recovered to the extent of being able to walk unaided, graduate from university, and become a science writer for BBC Science Focus, but the relapse threw her back on what had been her crutch during adolescence, the staple energy management tool of the ME community: pacing.

“Pacing is about understanding your body’s energy, where it comes from and what depletes it, and using that information to set a pace of life that is able to sustain energy use,” Arthur says. Though traditionally prescribed exclusively for people with chronic, energy-limiting conditions like ME, and more recently, Long Covid, Arthur sees the value of pacing as a universal tool, in the face of economic strain and the demands of productivity-driven work culture.

[ Irish people are struggling to cope with relentless demands, research finds ]

I’ve always liked to think of pacing as my own personalised energy map – it guides me towards achieving my goals within the boundaries of my physical and cognitive limits. By thinking in evolutionary terms, Arthur gives me a fresh way of looking at it: “Survival of the fittest is also survival of the most able to conserve energy or use their energy in a smarter, more sustainable way.”

While getting to know your own landscape of energy drains and energy replenishers involves a lot of trial and error, Arthur says pacing has helped her not only to avoid the “crash-and-burn” cycle, but also to reflect upon her own energy as currency.

“We each wake up with this bank of energy – yours is going to be different to mine – and everything we do costs us an amount of energy. When we get to the end of the day, we can ask ourselves, ‘Have I gone into debt with the energy that I’ve spent? And if so, how can I avoid doing that?’”

Though the currency analogy can be helpful, Arthur cautions against assigning negative moral judgments to the way we spend our energy. “I think having those negative judgments actually does us a disservice and seems to miss the whole point of pacing,” she says. “Pacing is meant to empower us to use our energy, not to hoard it, in doing the things that bring us joy and a sense of accomplishment, but in a sustainable way.”

The key thing is not to see it as a zero sum game. It’s not that it’s either work or rest, it’s that each entails the other

With all this talk of energy, I’m curious to know how Arthur defines it. In her view, pacing can become easier when we distinguish between energy as a biological fuel and our own “subjective feelings” of energy, which she divides into “physical”, “emotional” and “mental” components. These subjective feelings of energy, she points out, vary substantially throughout a day, susceptible to what she describes as hidden energy drains.

In Arthur’s view, learning about what drains and replenishes our emotional energy is of particular value, since it is an energy category we tend to overlook. “If, say, I wake up and I have an argument with someone straight away, being in that heightened state of stress has an emotional toll that drains our energy,” she says. “That [emotional drain] is likely then to affect my cognitive output later in the day, when I find that I am more distractible and less able to focus.”

The dynamic nature of our energy levels is precisely why traditional time management techniques, assuming a constant supply of energy, do not work for Arthur. Time may tick on steadily, but our subjective feelings of energy are far from constant, especially across activities that have different demands on our physical, emotional, and mental energy reserves. Pacing, at its core, requires that we discern these nuances when deciding the timing, duration, and order of our daily activities. “We need to think more closely about the energy that any given activity demands from us and how we can put that energy to best use at the right times,” Arthur explains.

For the science journalist, long-term pacing has always been about “finding happiness and feelings of achievement in attaining [her] goals, while not causing [herself] excess pain or exacerbating [her] symptoms”. And so, it seems, we have come full circle, revisiting that undeniable tension between aspiration and capability that fatigue so often brings to the surface.

In navigating this tension, Prof Deary challenges our cultural tendency to view work and rest as opposing forces: “The key thing is not to see it as a zero sum game. It’s not that it’s either work or rest, it’s that each entails the other.”

Rest, a non-negotiable precondition for human flourishing, looks different for everyone. “The way that we address this [variability] in the clinic is to prescribe some of the people we work with ‘Project Rest’,” he says. “Paradoxically, we ask them the question: ‘How can you devote all your energy, your capability, your skill, and your work, to rest?’

Think of what you value in the people that you care about. I’ll bet you don’t say, ‘I love you because you’re so darn productive’

“What people begin to learn, through this exercise, is that rest is a skill, and it’s a skill that needs practice. Experimenting with different forms of rest allows you to identify the unique conditions in which your body can really truly recharge.”

With ample rest and a commitment to recalibrating the pace at which we work, it is often possible to achieve our goals without pushing ourselves to the brink. From Prof Deary’s perspective, all that need change is the rhythm that we set ourselves. Rather than keeping pace with the tempo of an unforgiving work culture, we can choose to march to the beat of our own internally calibrated drum.

As idyllic as this may sound, Arthur acknowledges the reality that, regardless of all these reorientations, “our energy is never going to be 100 per cent our own”. By embracing her own insuperable limits, she has discovered the power of choosing how she will spend her energy.

“This gives me a sense of agency and self-efficacy back, which are so important for our feelings of care towards ourselves. I feel better about my body when it responds to what I choose to do because I have chosen it,” Arthur says.

Choice applies equally to the realm of relationships, where Prof Deary warns us to beware of “energy vampires”. Here, Arthur has a distinctive take on the meaning of rest, inspired by the physicist’s view of an object at rest. When a force is acting on an object, that object is still technically at rest when an equal but opposite force is exerted. For the journalist, this translates to “applying your own resistance, your own returning force” amid demands from your boss, your partner, your mother-in-law.

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Confronted by external pressures and a seemingly endless to-do list at work, finding rest is regularly finding the strength to say, “No”, or at a minimum, “Not right now”.

In those moments when we may be tempted to do it all anyway, Prof Deary offers a thought experiment that just might be a game-changer: “Think of what you value in the people that you care about. I’ll bet you don’t say, ‘I love you because you’re so darn productive’.”