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In the mornings my housemates go to work. From bed, I listen to the sounds of the kettle boiling, taps turning on and off, keys jangling in pockets, until the front door is closed. Then depending on my level of energy and pain, I might fall back asleep or I might rouse myself to get up. I monitor my body, take notes for myself – breathless, light sensitive, failed to open the bottle of milk – that presage the day to come. Some days I’m fine and I can spend my days how I’d like. Other days there’s no other option but to close the blinds, retire back to bed.

On ill days when I can tolerate sunlight, I make my way from my bed to the sofa on the front porch. Our front yard is overgrown with tall purple fountain grass and the foxtail plumes shroud me from view. I lie on the sofa, unable to do much else but watch the trees and breathe through pain. Groups of small kids from the primary school down the street bounce across the footpath in green shirts and wide-brimmed hats, letting me know it’s afternoon. I consider how they’ve had a full day and I’m just rising. Occasionally a kid spots me through the grass, and their curious eye contact threatens to unravel me.


In illness, especially chronic illness, the world becomes smaller. Days, weeks can pass without leaving my street: my home, the park, the milk bar. They say we all have the same number of hours in a day but this is not true for those of us who are chronically ill. On a bad day, I might only have one or two lucid hours of ability that I have to use carefully: To work? To see and care for loved ones? To shower and make a meal? To attend medical appointments? To do chores? To create? To protest? Even on a good day my body cannot do all of these things – no matter how much I’d like to, no matter how many of my peers might, no matter how many Centrelink staff or politicians or online commenters say otherwise.

We’re taught, of course, that to be busy is to be worthwhile. A rich life, a life well lived, is one that is bursting with work and events and achievements. It’s nothing new to say our society fetishises productivity and is terrified of wasted time, and therefore terrified of illness.

When I was a teenager a career counsellor told me I had the potential to do so many things. Since then, my resume has barely changed. While friends and peers spent their early 20s gaining degrees, careers, families, or travelling to Europe, I spent time in bed, debilitated by waves of mental and physical illness.

We’re taught that to be busy is to be worthwhile. It’s nothing new to say our society fetishises productivity and is terrified of wasted time, and therefore terrified of illness.

One night during a prolonged flare, I force my body to the pub to meet old friends. In the beer-soaked leafy courtyard, they swap stresses about their jobs. They didn’t get the promotion, or they did and now there’s so much work to do. They talk about their overworked nervous systems, their 5am alarm clocks set to fit more work in. I feel guilty when instead of empathy, I feel envy. They ask what I’ve been doing. Not much, I say, haven’t been well, mostly been at home, mostly been in bed. Wish I could do that, they say, sounds like the dream.


In a society that seems to be on a collective treadmill to burnout, there’s lots being written about the value of slowing down and doing nothing.

I started researching slow living to try and make sense of my life when I first learned my physical illnesses were chronic, without cure. Google gave me articles about ways to embrace a simpler, slower life, filled with photos of glowing women who lived in the country and spent their weeks pickling and preserving homegrown vegetables and cooking meals from scratch.

Of course, this all sounded very lovely.

But my hands had stopped working. I needed assistance with most tasks; cooking meals from scratch wasn’t an option, I survived mostly on cheap microwaveable meals eaten in bed. In everything I read, there was always an assumption of health and ability required. The goal always wellness.

And of course, what’s also missing from these simplistic how-tos, often drenched in unacknowledged privilege, is money. There’s often a dangerous hint that one could simply afford and choose to work less.

I’m privileged enough to still be financially surviving. I’m on the dole, but I have a mother who still pays my medical bills when I cannot. I know I’m lucky – this is not the case for many.


For most people, rest seems to be an impossible fantasy. For people with chronic illness, especially chronic fatigue and chronic pain, it’s more of a dull acquiescence.

I still find myself trying to convince others that my ill days at home aren’t leisurely, to apologise or alleviate guilt for not working as hard as they do. Don’t worry, I seem to say, there’s no joy.

But there are small joys.

Like taking white linen off the washing line – smelling and folding the sheets while they are still stiff with sunlight; pinching blooms hanging over a neighbour’s fence and arranging them in cups in the kitchen and bathroom; rereading a passage from a favourite book; phoning my younger sibling who tells me sweet, goofy stories, even when I’m too ill to respond.

Then the pain arrives and there’s nothing but that. Small joys are dimmed – birdsong suddenly becomes a cacophony, sunlight unexpectedly violent, the idea of reading laughable. I watch the ceiling as pain slices my face, arms, legs. Here, there’s no option but to lie in bed, waiting for it to pass.

For most people, rest seems to be an impossible fantasy. For people with chronic illness, especially chronic fatigue and chronic pain, it’s more of a dull acquiescence.

These pain flares can last for hours or days. Sometimes it feels like they won’t ever end and I just have to trust that they will.

Because on other days, you could never tell there’s anything wrong with me. I work, I jog, I go out dancing. I feel invincible. On these days too, I have to remind myself that the other days were real, that I wasn’t malingering.


One of the specialist clinics I attend is in the Eastern suburbs. The 40-minute drive alone is enough to exhaust me for days. My exercise physiologist is teaching me about pacing. She is teaching me how to rest.

Pacing is supposed to give you more control to manage your illness. We talk about my body like it’s an iPhone: if you completely drain the battery it takes longer to recharge, if you use some of the battery but regularly top up, it’s always ready to use. At least that’s the plan. She gets me planning rest before, during and after each act of exertion. Preparing a meal and social outings are divided into steps with rest breaks. So too are smaller activities like showering and drying my hair.

She gets me to fill out a 24 hour activity diary, highlighting each hour as red, orange or green for the amount of energy I exert or replenish. Red: work, exercise, shopping, cleaning, homework, socialising, sex. Orange: driving, watching TV, reading, gentle walks. Green: sleep, meditation, massage, listening to music, baths, lying down. At the start and end of each day I rate how I’m feeling out of 10. We’re trying to create new patterns so my activity diary looks more like a rainbow, rather than huge chunks of red (exertion) followed by huge chunks of green (bedridden). She encourages me to stop feeling guilty for hours spent not doing anything useful; guilt, or anything that causes an emotional response, is instantly marked as red.

Pacing and graded exercise therapy are still controversial. Many people who get treatment don’t get better. Even more people can’t afford access to treatment at all.

In the clinic’s reception there is a yoghurt-coloured wall collaged with patients’ accomplishments: postcards from foreign cities, mountains hiked, birthday parties celebrated out of bed. I wonder how many clients never make it onto this wall. I think about my chronically ill friends, some of the most caring and clever people I know. I think about all of their invisible, devalued labour and contributions. How many times their friendship has saved my life, and others. How I wish that were celebrated on the wall.


I resisted reading or writing anything directly about chronic illness for so long. I wanted to escape my illness, not relive it.

But I grew weary reading about self care and self preservation by healthy abled people I couldn’t relate to.

Finally, I sought out literature written by chronically ill writers. I went to the library and brought home a stack of books, shocked to see so many of my experiences that I’d shielded, even from myself, on the page.

In Shaping the Fractured Self (UWA Publishing, 2017), an Australian collection of poetry and small essays on chronic illness and pain, Sophie Finlay – the one writer I’ve ever read who shares my autonomic nervous system disorder – writes:

There is a strange sort of wisdom to this illness. It has forced me to slow down, to work part-time. It has put me out of step with the external world, but my inner world glows even more vividly. […]

I have longed for peace, for slowness.
I want to watch trees gently change,
the weather, deep green shadows.
I want this communion with the strange rivers of the interior.

Reading these words rearranged something in my skull. Here was someone who knew my illness intimately and was talking about positive side effects; a cool drink, an alternative to the daily updates I see in chronically-ill Facebook groups about mistreatment, isolation, disability support rejections, cries for help, new deaths.

I realised I too have always longed for a sort of slowness. I have always been naturally introverted and needed lots of quiet time alone. One result of chronic illness has been a gentle turning inward, a sort of narrowing and refocusing of every aspect of life. I choose how I spend my hours of wellness with more clarity and autonomy than ever before. And while I don’t feel grateful for my illness or pain, I’ve started to feel less guilty about living the slower life that I know others crave, and sometimes even finding joy in it.

While I don’t feel grateful for my illness or pain, I’ve started to feel less guilty about living the slower life that I know others crave.

In her wonderful essay ‘In Bed’, Joan Didion describes the ‘convalescent euphoria’ that comes after hours of being in physical pain. For me, it’s true.

Late into the afternoon, when the pain subsides, I rise and go for a long languorous walk. I wend my way around the park and then the oval, with the sun low, everything saturated in sepia tones. I exult in the new ease of my body. I listen to favourite songs in my headphones. I smile at strangers; a woman with a pram by the swings, a man throwing a stick to his dog. I watch the sun sinking gold through the trees. Like Didion, earnestly: I count my blessings.


After seven years, last year I returned to uni to study writing. This time I have plenty of support; my teachers know sometimes I can’t come to class or meet deadlines.

I can only work in small bursts, before I need to take a break to rest, and it takes me much longer to finish something than it might take others. But slowly, methodically, I make my way, and enjoy it too. Things start to feel possible again.

For the first time in a decade, I am busy. I go to uni, work casually in a job I enjoy, write, say yes to projects I’m excited about, leave the house. My new treatments and medications have helped allow this. And though this new busyness has brought excitement, there’s also fear, of what I have to lose. I know I have to be careful not to drive my body into hospital by trying to work the same amount as peers. I know my bursts of wellness only last so long before the pain arrives and I have to retreat to recumbency. I’m still learning the new choreography of my illness. ​

But I don’t want my new busyness to be put up on the wall of achievements. I don’t want to only be worth something when I’m well. Perhaps the quietest revolution to celebrate as a chronically ill or disabled person is simply to exist in this world at all.