Pacing can help chronic illness management, but for some, it’s easier said than done
As the tragic numbers of long Covid survivors grows, the notion that fatigue can be helped by pacing has become more widespread among medical practitioners and survivors alike. Yet pacing can be quite hard for many. In this article, I look at how the useful practice of pacing often runs up against ingrained blocks and impeding chronic illness management, impacting life, work and creativity.
Many forms of chronic illness are accompanied by fatigue. To anyone who hasn’t experienced fatigue, it can be quite hard to explain. However, I liken it to having a really bad hangover or that deep-boned aching and exhaustion that comes with a nasty virus, except it never really subsides.
Fatigue doesn’t act like other forms of tiredness. For most people, exercise or activity energises them; or, if they do get tired, a short rest is normally enough for a reset. The fatigue associated with chronic illness, however, can only really be helped by a really long sleep, and even then, sleep doesn’t leave people bright and sparkly. It offers a reset, but often one where you wake up feeling groggy anyway. For some on the harsh end of the fatigue spectrum, nothing helps.
Spoons theory
One important way of managing fatigue is through pacing, otherwise known as ‘spoons theory’. Rather than seeing energy as infinitely renewable, spoons theory asks people to imagine they have a limited number of spoons in a day, which represent energy. Once you’ve used up all those spoons, you’ve got nothing left. A spoon might equal the energy you use getting out of bed and having a shower; another spoon might be used up making breakfast. If you aren’t careful, you can get to lunch and not have any spoons left. If you push beyond the last of your energy reserves, you can end up in a relapse or flare.
Every individual with fatigue, therefore, has to work out what a spoon represents for them and how many they have in a day. Every morning, they have to consider what the priorities are for them — what the spoons are going to be used for — and what can be put off. A person might decide that today they will use all their spoons on doing a few household chores alongside basic self-maintenance, or to focus on work and neglect housework, taking naps where they can.
Sounds reasonable. But for many, fatigue-management through pacing can be a practical difficulty as well as bring up what author and physician Gabor Maté relates to deep-seated emotional and psychological habits.
A life of labour
Let’s consider the practical difficulties. One of the causes of fatigue is autoimmune conditions, and prevalence is distributed by sex. 80% of autoimmune disease survivors are women, and many of those women are of child-bearing age. As we know, it is not so easy to slow down when you have to juggle work, childcare, household management, and general living. Doing too much is the epidemic of working-aged adults, particularly women.
Even taking out sex differences in everyday labour, the demands of work, parenting, caring and everyday chores show no sign of abating — indeed, they are getting worse. Many people with chronic illnesses say dealing with their condition — either by self-management or communicating with the health service — is a full-time job in itself.
So by any objective criteria, pacing — in the context of modern life and work — is tough.
Emotional blocks
And then we can add in the psychological and emotional difficulties associated with pacing. One of these is the long process of dealing with the grief of losing one’s identity as a ‘healthy person’ that can follow the Kübler-Ross five stages of grief: denial, anger, bargaining, depression, and acceptance. So a person might not be ready to accept their life has to change in order to regain another, different kind of life.
Another might be what Maté argues is endemic to chronic illness — that we feel our acceptance is conditional on our performance, perhaps as a result of upbringing. Certainly, many of my fellow ‘lupies’ (people with lupus) report always being very driven (‘strivers’ with a powerful work ethic) before they got ill, and have continued struggles with doing too much and enduring frustration with their bodies. It doesn’t help that our society is very work-orientated, and there is plenty of stigma attached to those who aren’t constantly striving for more.
Add to that beliefs about what productivity or creativity looks like (gruelling hours of work, sometimes late into the night, head down) and those with chronic illness can find themselves hugely frustrated and conflicted.
Another still might be the presence of too many toxic people in one’s life, a particular problem if you are a highly sensitive person. Uncovering that some people in your life are simply a negative drain and that you deserve better can be a revelation.
Processing that emotional content is a central part of being able to manage chronic illnesses, and that’s where counselling or coaching can help to bring insights about one’s own patterns to the surface — discovering why, in Maté’s words, your body is saying no. It doesn’t necessarily entail a cure, but it can help with disease management.
A life with chronic illness
About three years into being diagnosed with lupus, I came across a book called Despite Lupus: How to Live Well with a Chronic Illness by Sarah Gorman. In it, she describes her journey from driven workaholic in deep pain and exhaustion to someone who stopped channelling her identity through work and so regained a measure of life and pain-free existence. She did this by accepting — after a long struggle — her limits and finding a daily pattern that helped her maximise her sense of fulfilment (to the degree she ended up writing a book!).
Her approach was deeply embedded in a coaching framework related to time planning, accessing resources, accepting help and identity change. Most importantly, she acknowledged that she was not offering advice, but simply telling her story. Everyone’s way of managing their condition will be what works for them — and of course, that is what coaching should be.
As Gorman says, she was lucky to have understanding employers, a supportive family and a doctor on call, and not everyone has those ideal conditions. A report published in March 2021 by the Centre for Social Justice illustrated just how far we have to go when it comes to equal access for those with disabilities. And not everyone with a chronic illness who instigates these changes has such a remarkable stabilisation of health as Gorman did.
However, I’d argue that by exploring one’s psychological blocks and optimal (for us) life patterns when it comes to chronic illness management, it is possible for anyone to make marginal improvements to their everyday lives which can, in turn, help improve health and quality of life. And maybe more.
I would absolutely acknowledge that finding a good balance is a process of ongoing conscious effort, certainly for me. And letting go can be hard. But listening to our bodies and accepting our limits might just set us on a path to a fulfilling and productive life, even with a chronic illness.
