Operating while fatigued: What it's like writing with a disability

Normally, I reserve the full text of my reflections for my paid subscribers, but this month I really want to talk about something that I want everyone to be able to read. July is celebrated by many as Disability Pride month, which makes it a really good opportunity to learn more about what it's like to live, work, or create with disabilities. And as a disabled person myself, I'm going to take advantage of my platform here to bring some more awareness to how being disabled affects my writing capabilities.

(This is the point where I should provide a disclaimer and set expectations for what is to come: I obviously cannot write about disability as a monolith, because there are many different types of disabilities and they affect everyone who has them in unique ways. I will consider other diabilities and their presentations as I go on, but I will be focusing specifically on my own personal experiences dealing with chronic fatigue [which is likely ME/CFS]. I will also mention that neurodivergence is considered by many people to be a disability as well, but this tends to vary between people based on their individual situations. In either case, I have already written about how ADHD affects my writing in one of my earliest posts, so there's no reason to go into it all again here except where it intersects with other features of disability.)

Very little energy...

Fatigue is, unsurprisingly, a hallmark of ME/CFS, commonly called chronic fatigue syndrome, but living with a disability can be exhausting even for people whose condition isn't named for it. Some days—most days, if I'm being honest—it takes all of my energy and then some just to get through my regular activities, leaving my brain far too porridge-like to get much creative expression out of it. Trying to work a regular job while disabled further limits my ability to create, because being a functional and useful employee is, like, 90% of my weekly spoons.* My wife handles most of the household responsibilities, fortunately, otherwise I might not have any energy left at all.

This makes it difficult to spend long periods of time working on a project, especially one that requires creative energy, and also more difficult to keep up with regular habits of writing every day. (Having ADHD does not help with either of these, for the record.) All those ideas that pop into my head take thought and effort to put into words, but I often don't have the effort to spare, even on days when I'm not working—that time is quickly filled with a mix of activities I couldn't get to during the week and large amounts of rest. I can still work on writing projects, but not as extensively as I would like. I may decide to stick with things that are a bit shorter (like blog posts!), or I might chip away at a bigger piece of work in small, infrequent chunks (which means I have things sitting around that won't get finished for a good while).

It can be difficult for us to feel comfortable or confident calling ourselves writers when we have so much trouble making progress on our projects, but it is also important that we avoid the trap of linking our value to productivity. It's harmful enough when we tie it in with employment, given how difficult it is for most disabled people to work full-time; we certainly don't need it with creative pursuits as well.

*NB: when I mention "spoons", this is in reference to spoon theory, which uses spoons as a visual metaphor for energy and capacity to perfom activities, which use up varying numbers of the spoons a person has available. This metaphor is commonly used in disabled circles, particularly in reference to chronic illness.

...But more time

When someone becomes disabled, the first activities that they're likely to drop are ones which require a higher level of energy and/or mobility, or which require them to leave the house. In my case, I had to cut down a lot on socialising in general, and specifically had to pull away from my beloved local theatre community. My schedule is precarious enough that I have a hard time just getting to see all the shows I want to see; I certainly haven't got the spoons to be in one.

This does, however, leave me with a lot of unoccupied time. Most of this needs to go towards resting, but I still have the odd hour or two of capacity spare and a great itch to be creative. The solution, then, is to redirect my focus away from the things I can't do anymore to more fatigue-friendly activities which I can do from the comfort of my own home—even my own sofa—such as crochet or writing.

Writing in particular can be an incredibly portable activity, depending on your set-up; I know of plenty of people who write just on their phones. It can also be done in small bits and pieces reasonably effectively, even if many writers would prefer to work in longer chunks of time, and may not necessarily require any sort of monetary investment to get started with, so long as you have a method of writing up and keeping your work. This makes it comparitively accessible as a creative pursuit, and far more achievable than many other activities we may have once had designs upon (alas, that I never learned to fence!). Even if we don't have much time and energy to write, it's still something we can do, and that's precious.

Managing fluctuations

One of my least favourite things about being disabled by a chronic illness is that it's so darn unpredictable. One week I'm feeling pretty good and can manage myself well, but then I get smacked in the face with Symptoms and have to struggle through the next fortnight, barely dragging myself through the day. For many chronically ill people, our lives are chained to how we're doing at any given moment as we try to navigate around the ever-present pain and/or fatigue. And committing to things? Oof.

Over time, I've gotten a rough idea of what I can expect to be able to do, and what is likely to trigger a flare-up of symptoms. I am, however, still taken by surprise when activities or situations I expected to be fine turn out not to be, and it's impossible to really anticipate the details of how unwell I might become, with which symptoms, and how long they last. Trying to stick to a routine as much as possible helps to keep me in line with expectations, but it's certainly not a foolproof system. Unexpected changes to my usual schedule or a poor night's sleep might be all it takes to turn my plans on their head and send me groaning to my favourite armchair.

Having fluctuating health means, naturally, that my capacity and ability to write is also highly variable. I can shoot through a couple hundred words in the evening if I'm feeling good and my brain is cooperating, but this doesn't usually happen on consecutive nights or more than a once or twice a week. I try to write a bit on the weekends as well; I've had full days of writing that have been highly productive, but I've also had whole weekends where I haven't written a word.

It helps to have a couple of things to switch between, as I find it easier to focus for short periods before switching to something else. I also have to really pay attention to my priorities while also giving myself grace, taking the opportunities to write when they come but not trying to force myself to push through when it's not happening. As far as the blog goes, I keep to my schedule by writing my posts as far in advance as I can and giving myself a buffer so that I can work through difficult patches more slowly when I need to. Of course, this only works when I also have holidays where I can reliably smash through multiple posts at once and plenty of pre-existing content to sprinkle through the schedule.

Resetting expectations

There is a particular sort of frustration that comes with finding yourself unexpectedly disabled after having lived a much more abled life. Repeatedly running into difficulties with things that never used to be problems becomes a constant source of annoyance (at best), or despair (at worst). The frustration is further amplified for those of us who have a combination of chronic pain/fatigue and a bad case of boredom-is-worse-than-death disorder (aka ADHD), because we still want to do everything we possibly can for every possible second of the day, and our ability to do anything at all is now significantly reduced.

Before I developed chronic fatigue, I had plans. Big plans. I'd just finished up a Master of Writing degree, during which I'd needed to take a hiatus from community theatre, and having now finished my studies I was ready to jump back into the theatrical world and start making a name for myself as a playwright. I signed up for a short-term mentorship programme which culminated in a professional play reading, which was very exciting for me and a perfect springboard... except that by the time of the reading I had already gotten sick. And I never quite came round. And I just did not have the energy to do what I needed to do in order to leverage the new opportunities dangling in from of me. I started writing a new play, but only managed to get though a handful of pages before my motivation dried up. I don't have the energy to convince other people to produce my plays, and I definitely can't produce them myself right now, so writing more of them is a pretty low priority.

I'm sure that some of you, readers, will have similar stories. It's so hard to come to terms with a sudden loss of ability, and a large part of that is feeling robbed of the futures we'd planned out for ourselves. Instead, we need to try and build up a new, less certain, and perhaps less exciting trajectory for our lives. This may lead us in directions we might never have considered otherwise—I certainly wouldn't have bothered starting this blog if I'd been busy doing shows again—but it can also mean giving up on dreams. We need to re-evaluate our expectations of ourselves, and the expectations others have for us as well (which can sometimes be even more difficult), in light of our new normal.

It's possible that I may recover enough from my fatigue that I can belatedly pick up some of my old plans one day. I definitely want to get back to that unfinished play, for a start. It's impossible to be sure of recovery, though, and in the meantime I'll just have to keep plodding along, taking my opportunities to write and grow and show off where I can, and doing my best to look after myself along the way.

I expect that this article is likely to reach beyond my usual readership; if that's you, welcome! I encourage you to check out some of the other posts on the blog, and consider signing up for a free or paid membership if you like what you see and want more of it.

In any case, thank you for reading and learning about my journey. Don't be a stranger, and happy writing!