Writing Through Fatigue And Pain – Being Disabled And An Author

So. I’m disabled.

I have had severe ME since I was 19 years old, so for… *counts quickly* … over 7 years now. It’s been tough. The fatigue is so completely debilitating that often I don’t have the energy to lift my head up or prop myself upright, so I spend a lot (and I mean a lot) of time lying in bed or on the sofa, completely horizontal.

Yesterday, I was also diagnosed with a hypermobility problem (HSD, but it might be hEDS, but then they’re very similar, it’s complicated and a little controversial – but that’s a topic for another time). The upshot is that my connective tissue is faulty. That means my joints are very unstable; I have a lot of chronic pain in my joints, and I subluxate a lot – which is a partial dislocation. It’s very, very painful.

Add to that gastric issues, autonomic nervous system dysfunction, sleep disturbances, orthastic intolerance, sensitivity to sound and light… yeah, it’s a lot. I’m a wheelchair user outside but I walk around at home, just about, with help. I’m also reliant on a lot of medication.

Me attempting to walk

Anyway. The point of all this is that I spend a heck of a lot of time curled up in a ball of pain, or napping, or trying to nap, or in a dark room unable to tolerate touch or sound or movement. It’s tough.

So how am I ever supposed to get any writing done?

Writing is difficult for everyone. I get that. You can have all the time and ability in the world to write and still struggle with it, because motivation and inspiration are fickle things. But being disabled/chronically ill and being an author is a whole other stinky kettle of fish. How do you write when your head is so foggy that you can’t even make out a sentence? How do you type when your finger joints are swollen and sore? How do you look at a screen to read or edit when you can’t stand any sort of light?

It’s tough.

My answer is that I write in tiny little snippets when I’m able to, which means I spend most of my time… not actually writing. It makes me feel like I’m failing at being an author, because so much advice out there says you must write every day! The story won’t write itself! Make time for a bit of writing every day, even if it’s just half an hour in the morning!

That’s lovely, for people who can do it. Maybe. I’m not actually convinced it’s good advice for anyone, but it is absolutely 100% terrible advice for me and a lot of other people with a chronic illness or disability, of any kind, mental or physical (or both).

How am I supposed to write every day when some days I’m not well enough to open the curtains or put the lamp on? How am I supposed to look at a screen and understand words when it takes me ten minutes to process my partner asking me if I want some water? Brain fog is a huge, huge problem. I’ve done some very strange things when I’m very foggy (leaving my keys in the fridge, saying the wrong word all the time – like calling my partner ‘Sandwich’ instead of Charlotte, naming hot chocolate ‘burny warms’ because I forgot the word, and forgetting whether I’ve asked my partner something so I ask her the same question seven times a day). How am I supposed to get any coherent writing done when I’m like that?

Plus, one of the more delightful (by which I mean awful) things about ME is the post-exertional malaise. That basically means that you don’t feel too bad while you’re actually doing an activity, but it hits later, and it hits hard. I sometimes don’t feel the effects of an activity until it’s 48 hours later. I can sit outside for an hour on a Monday morning and be completely bedridden all of Wednesday.

Jase is wearing a fluffy grey cardigan with cat ears
My usual at-home look: I like to call it ‘Fatigue Fashion’

My point is: if I do try and push through and write a bit even when I feel terrible, then I pay for it the next day, or the day after. I won’t be able to make sense of written words for up to a week.

The important thing to do is rest. When I feel sick or bad or ill, I have to stop everything I’m doing, even if I’m in the middle of a sentence, and go lay in a dark room and rest until the bad feelings become manageable again. This means that most of my writing is done in tiny little snippets where I am briefly well enough to write. I wrote the first draft of my debut novel in half-hour blocks over two years (half-an-hour is the most I can manage of anything before needing a break).

Jase is sitting on a sofa under an electric blanket, holding a hot drink, using her laptop. There is a charmander plush and a water bottle beside them.
A wild Jase writing in their natural habitat

My point with all of this is: it’s okay. It’s okay if you’re a slow writer. It’s okay if you get nothing done for weeks and then have one productive day where you write thousands of words (my record in 24 hours is 16,000 words. I do that very, very rarely). I actually consider myself quite a fast writer – just a writer who can’t write very often.

I’m still a writer even when I’m not writing, though.

It’s taken me a long time to start to realise that the actual act of writing isn’t the only part of being an author. The time I spend dreaming and imagining, when I’m lying alone in a dark room, is a huge part of the process. The worldbuilding that happens in my head; the character conversations I play out in my silent room; the settings that come to life behind my eyes; these are all just as important as actually sitting and typing at my laptop.

So on those days when I can’t write, I try and tell myself: you’re still a writer. You might not be writing right now, but you’re holding this entire, incredible story inside your head, and that’s amazing. You’re still a writer.

I will never be someone who can write consistently every day. I don’t have a body that allows that. But I am a writer, and I will continue to be a writer during my rest and my pain and my exhaustion. Being a writer isn’t something you do; it’s something you are.

I’m disabled. I’m chronically ill. And I’m a writer.