I am a chronically ill writer. If you read my earlier blog entries, you’ll know that I suffer from Crohn’s Disease, Hypermobility Syndrome and Polycystic Kidney Disease amongst other things. This time, I’ve decided to take a more positive look at things, and give you my top tips for writing with a chronic illness. I hope this will be useful to those of you who also suffer from any sort of illness, and perhaps even for those who don’t.
I use the term “spoonie” a fair bit – if you’re unfamiliar with this, it refers to The Spoon Theory, a post by Christine Miserandino where she used spoons to demonstrate her energy rations to a friend. “Spoonie” is now used by many chronically ill people to refer to themselves.
I’d also like to point out before I start that, often, I’m useless at following my own advice. I sadly don’t spend all my time in the glowing bubble of positivity. But it’s great to visit for a while, and I hope you’ll agree. So let’s begin!
- Build a routine
Building a routine is important for any spoonie, but especially so for writers. Back when I was diagnosed with ME/CFS before my underlying conditions were discovered, I learnt a lot about how managing your day to day activity can help with fatigue. The general idea is that, by carefully rationing out your spoons, you can avoid having peaks of high activity followed by days of payback. The same is true for writing – you will have more success if you write little and often than if you spend all of your energy on a splurge of genius only to find yourself unable to write for the next few weeks.
It’s all about your daily routine as well – eating meals at the same time, getting dressed at the same time, writing at the same time. Things become easier for your body when they’re a habit, though we all get thrown off by bad days, so the more set in stone your routine is, the easier it will be to return to it. Having a solid sleep pattern is super important (I have achieved mine with the help of carefully configured sleeping arrangements, a soft alarm and sun lamp, lest I feel like I’ve been woken by being hit repeatedly with a hammer), so don’t be tempted to keep writing until 3am if you know it will make you feel awful. It’s actually great to leave your story hanging in a place you’re excited about, because it will make it SO much easier to keep going the next day.
- Don’t be afraid to let your goals be flexible
When I’m drafting a novel, my goal is to write 1000 words a day. In the past, I used to beat myself up on days where I felt too sick to write, feeling like a failure. I’d seen the advice so many times: “if you want to be a writer, all you have to do is write every day”. If I couldn’t write every day, then I wasn’t a real writer, surely?
But being so hard on yourself doesn’t get you anywhere, and I soon realised that. I learnt that although it’s important to have a goal, it doesn’t need to be set in stone. I am to write 1000 words a day – sometimes I write 500. Sometimes I write 3000. Sometimes I can’t write at all. The important thing is that it balances out in the end. And if it doesn’t balance out when you’re on deadline, that’s when tip #3 comes in.
- Be open and honest with the people you work with
There’s still a lot of stigma surrounding chronic illness. Back when I was at school and university, I worried so much about being labelled as “lazy” or “just not wanting to go to school” that I would force myself to go in even when, in retrospect, I was probably too ill to get anything out of it. But I was lucky in a sort of horrible way that my worst flare-ups always happened in the summer, when the year’s work was already done. Unfortunately, when it came to my year-long MA, the flare-up hit right in the middle of my final project. I was forced to ask for my first ever extension. And I was terrified. I’m sure if I’d had something more readily understandable, like broken bones, I wouldn’t have felt the slightest bit afraid or ashamed. We need to start looking at chronic illness in the same way we would treat these other, more “normal” ailments.
So I got my extension, and it was fine. Nobody judged me, and I eventually completed my manuscript (which became Scarlet and Ivy – The Lost Twin). When I got my book deal, I found myself having to explain my health problems to my agent and editor. But again, I needn’t have worried. They’re wonderfully understanding and accommodating. When my last MS was delayed a few weeks by my illness, the kind folks HarperCollins even sent me flowers. If you let people know upfront about your difficulties, I’ve found that (in the publishing world at least) they will usually be totally sympathetic and more than happy to help you out.
- Put your health first
I joked when I was thinking of writing this blog that the tips might just be “take painkillers and have a nap”. But seriously, if that’s what you need to do, that’s what you need to do. There’s no sense in trying to force yourself to do things that you know you’re too ill to do – you risk just making yourself sicker. I’ve learnt to make sure I prioritise and use my spoons for self-care – washing, dressing, eating, taking my meds etc. – before I start on work.
On your worst days, that might mean that writing is completely off the cards. But in that case, you could maybe challenge yourself to a tiny goal: one sentence, or a paragraph. Or perhaps just try brainstorming some ideas in your head, or daydreaming about your characters. Anything that keeps your foot just in the doorway of your writing world, so that you can come back to it when you’re ready.
- Find ways to adapt
What you need to do for this tip will vary a lot depending on what kind of illness you suffer from, but the important thing to take away is that there are things out there that will help make your writing life that little bit easier. In my case, I have a lot of adaptations for writing with hypermobility: a proper chair with a back support, a wrist rest, wrist supports, an ergonomic keyboard. I have painkilling gel and ice packs on standby for bad days. I also do physiotherapy exercises, which I think have helped over time.
Another thing that’s been massively important for me is having a laptop and a phone that I can write on in the event that I’m not feeling well enough to get up and sit at my desk. I have to be careful with them because they’re not great for my joints, but it’s so useful to be able to stay connected in this way. Again, if you have a very different type of illness, there may be other ways you can adapt things to help you. Find what works for you!
- Try not to compare yourself to healthy folks
It’s a fact of life for nearly all writers (and indeed humanity in general) that we can’t stop comparing ourselves to others. You might find yourself looking on Twitter and thinking, “how come everyone else has an agent and I don’t?” “How come so-and-so has a book deal and I don’t?” And it doesn’t get any better once you are published, because then your goalposts shift and it becomes “how come everyone else is winning awards and I’m not?” We always seem to be looking for ways to put ourselves down, and it’s not good for any of us.
This is doubly bad when you’re a spoonie and a writer. You will see writers posting about how they get up at 5am to write, followed by a 3 mile jog and 6 school events, and that’s all before they head off to their full-time job as a brain surgeon (or something like that, you get the idea). It’s super impressive, but you have to try not to let it negatively influence your own self-image – for most spoonies these are unrealistic and unattainable things. You need to set your own mileage. I’ve never got up early to write in my life, I can’t jog and I did about 6 school events total in the whole of the past year, and my publishing career is going just fine!
One of my favourite pieces of writing advice is this: you can never be JK Rowling, all you can do is be the best YOU you can be.
- Use the internet wisely
As a spoonie, the internet is your friend. It’s a vital lifeline for many of us to stay in contact with friends and family (see tip #8) but that’s not its only use. Thanks to the internet, it’s now easier than ever to research, plan and workshop your writing from home. You may be too sick to manage doing a lot of author events (which are my favourite part of being an author, though my body doesn’t thank me at all and I have to take pretty much a whole medicine cabinet with me) – but now you can have a Skype event or an email interview instead. You can promote your book on Facebook and Twitter, with Goodreads giveaways and Mailchimp newsletters. You can interact with your readers through a website and email.
The only downside is that it’s tempting to spend all your time doing these things, and not enough time actually writing…
- Find a support network
One of the worst things about chronic illness is the feeling of being alone – feeling that everyone else is happy and healthy and normal, while you’re weird and sick and broken. I struggled with this for many years growing up, and I think there are two ways to start seeing around it: firstly, to start walking in other people’s shoes and realising that most other people are struggling with life a lot more than they’re letting on. And secondly, to surround yourself with other chronically ill folks. Life becomes a lot easier to deal with when you have somewhere you can go to say “hey, does anyone else get this weird pain?” or “who’s tried this medication?” or “who else is crying under a duvet instead of working right now?”
As with tip #7, I’ve found the internet is the best place to find this kind of group. Take a look on Facebook or on websites dealing with your illness, and you’ll soon find something. There may also be local support groups that meet in person. The same goes for the writing side of things, too. I take part in a lot of Facebook and Twitter chats, and I’m a big fan of r/YAwriters on Reddit. We also have a monthly local writing group. The more you get involved, the more you’ll find that there are SO many other people who share your problems, and you begin to feel a lot less alone.
- Make a To Do list and reward yourself
This is such a simple thing that has actually made a huge difference to me. I used to have trouble with remembering to do things, with prioritising and motivation. I found that having a To Do list was really helpful, but originally it was just something I’d keep on scraps of paper or a note file on my computer. I’ve recently discovered that there are some awesome free websites/apps out there that are even better for keeping track of this stuff – Habitica is the one I use, and it’s been great for my productivity. You can set your own challenges and rewards, and there are fun little extras like outfits and pets for your avatar to collect.
I find that rewarding myself is a really key part of the process, both for general life stuff and writing. When it comes to the carrot or stick approach, I’ll take carrot every time! You can tailor your rewards based on what you’re doing and what you know motivates you. There’s all sorts of things you could use – a favourite food, going on your social media, buying yourself a present, having a bubble bath, watching TV or reading… So in my case, I might say to myself: “if I write 500 words, I can check my Twitter” or “if I finish the book, I can buy that dress I really want.” (Sometimes I buy the dress anyway. Oops.)
- Celebrate every success
It’s important to remember that when you have a chronic illness, you are facing a whole extra set of obstacles that healthy folks don’t usually have to face. When you got out of bed in the morning, you did it despite your depression. When you finished writing that short story, you did it despite your pain. When your book is finally published, you did it despite days or months or years of fatigue. YOU DID IT!
Celebrate every single one of those moments. It’s great if you can have big life goals and things to look forward to, but it can be easy to build those up too much and feel disappointed if they seem like they’ll never be in reach. Take a look at what you’ve already done instead. See how far you’ve come. You’ve survived every one of your bad days so far. Be proud of yourself!
This article was originally published on my old blog, on May 25th 2016.