Why chronic illness pacing is political
I realised how my privilege as someone with resources and able-bodied parents who can provide me quality care allowed me to pace diligently.
My debut album will drop on August 29! You can presave it here • I’ve created a playlist on Spotify of Disabled & Chronically Ill Artists. Listen and save it here • My new single is out! It’s called There Are No More Heroes and is a song about the world (and doctors) turning its back on us. Listen and read more here, or listen while you read:
For years, I felt guilty every time I had to rest. Society taught me that slowing down meant failure, but chronic illness demanded it. The more I learnt to pace, the more I realized that rest and pacing are linked to political, economic and cultural systems.
I realised how my privilege as someone with resources and able-bodied parents who can provide me quality care allowed me to pace diligently. It allowed me to stabilise my body over time.
I have friends who are in constant fights with social services (I’ve been there too), who cannot get the right number of care hours or the right kind of care that is suited to their bodies and minds. It is impossible for them to pace diligently and they are constantly forced to over-exert themselves, making them sicker or preventing them from at least stabilising or managing their illness.
It took me many years to truly learn pacing. At first I thought it was about doing as much as you can and then resting when the body was over-exerted and couldn’t do anything else.
But pacing is a radical self-care act that means resting before the body collapses — a long time before. I don’t know about other illnesses, but for ME/CFS, experts often point to the 70% rule: Do 70% of what you can handle. It means doing a bit less than your max capacity.
This is downright contrary to the whole “you can rest when you die” trope in our culture. It feels unnatural to do less than what your body and mind can handle.
In western capitalist society, we value people based on their ability to produce. Our cultural values see hard work as a virtue and rest as laziness. Resting, pacing and slowing down defy these cultural expectations.
But pacing is hard work! Resting is the hardest thing I have ever had to do. The human psyche is not lazy, we want to do stuff. We want to work and contribute. Resting (this much) feels unnatural.
Pacing is labour, but a kind of labour that is devalued, frowned upon even, because it doesn’t generate economic profit. It’s invisible, yet life-sustaining work.
Article 24 of the Universal Declaration of Human Rights states that every human being has the right to rest and leisure. Yet many people living with chronic illness are not awarded this right when they don’t get adequate and quality care hours.
Within our own community we often see sick people blaming other sick people for not pacing well-enough when their symptoms or function worsen. This is not OK.
First of all, pacing is not a cure, it’s a tool in the management toolbox — and symptoms can flare even with diligent pacing. Second of all, pacing is not something everyone can do radically. People need to eat, they need to live in clean quarters, they need to shit and pee. If adequate care is not available, chronically ill people have to use their remaining resources for survival. Pacing is often a privilege. And that’s why it’s political.
Tell me…
Are you able to pace diligently right now?
What does pacing mean to you?
What do you need in order to pace diligently?
I’d love to know your thoughts!
Thank you so much for reading this post. If you know someone who could benefit from this, then please share this page with them. You are also more than welcome to share it in your Facebook or other patient support groups.
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My new single is out! It’s called There Are No More Heroes and is about the world (and doctors) turning its back on us
When I wrote this song, I was mainly housebound, I hadn’t met any doctors who would listen or understand, I had felt ostracised from my present (able-bodied) community, nobody outside fought for my patient group, we were neglected and forgotten. There are no more heroes, but we’ll do just fine on our own, I thought.
All proceeds will go to Open Medicine Foundation for vital ME/CFS and Long Covid research. Please consider purchasing on Bandcamp or iTunes to support the cause.
Pacing literally saved me from the downward spiral I was in. My psychologist taught me how to do it (before I was even properly diagnosed with MECFS).
I too have a lot of privilege. My spouse stepped up in ways I would never have imagined and protects my baseline as if it was his own.
And you’re correct - it’s a tool, not a cure. But if it keeps me from getting worse, it will have to do.
Keep it up!
I’m honestly finding pacing, the most difficult thing to learn. My husband is my carer—he recently gave up work to set up a food business from home—the feelings I am having over my inability to help him are grim. Recent neuro symptoms have forced the penny to drop, prioritising rest(preferably guilt free) is not a whimsical luxury…my body literally stops functioning—meaning I fall(drop attack) or most recently, lose ability to speak.
I’m a mother to 3 children, it’s a near impossible task to balance.