- What AS Actually Does to a Writing Life
- Rethinking the Writing Session
- Your Workspace as a Writing Tool
- Working With Your Flare Cycle
- The Unexpected Gifts
I’d only been writing for a few minutes before the words in my mind and fingers on the keys slowed. What had been a creative flow now bungled itself into a mass of words and ideas that weren’t translating to the page. A haze settled into my mind, and a pressure built in my forehead. My hands haven’t started swelling yet, but I know they and my back will be aggravated for the rest of the day, and maybe longer, if I don’t cut my writing session short. My ankylosing spondylitis turning an intended hour or two of writing into a five to ten minute session.
Ankylosing spondylitis (often referred to as AS) is an autoimmune inflammatory disease that is centralized in the spine that leads to unpredictable flares, fatigue, and stiffness. While it’s focused on the spine, many patients, like me, experience peripheral effects in various joints outside of the spine as well.
This post isn’t to be a woe-is-me tale, but something to say that your pain is real and your dreams are still possible. While writing with a chronic illness may be challenging, it is just as valuable and as possible as a normally healthy person. We just require a different strategy.
A quick note, read until the end to get a free writing with AS tool to help you build your plan for success!
What AS Actually Does to a Writing Life
If you have an autoimmune disease you understand that its effects are layered far beyond what people can see from the outside. In the writing life, ankylosing spondylitis impacts not just the physical realities, but the emotional weight of the symptoms. This may seem like a bit of a damper of a section, but it’s good to be honest with yourself about the problems you might face before you can look at how you work with AS instead of against it.
Where ankylosing spondylitis is centralized around the spine, long sessions of writing are more of a challenge, and the exact definition of long varies by person. Depending on the severity and the effectiveness of medication, a long writing session could be one hour or it could be 20 minutes. Other physical pains can include periphery inflammations with arthritic symptoms in the hands, knees, and ankles. Then comes the brain fog, which can block or dampen your creative capacity like trying to find that word that you’ve used a million times, but it never comes to fruition until the next day.
While the physical pain is “fun,” there’s a factor that sits with many writers with ankylosing spondylitis, the emotional weight of lost writing sessions, days, weeks, and maybe even months. You could have your one or two days off work that were set aside for writing when you get a flare up. As soon as you start moving in the morning, you can feel the mental fog or the pain that will keep you stretched out for the day. Suddenly your day of productivity has become a day for recovery. I don’t know about others, but I struggle with grief over my loss of productivity, guilt for not writing, and wondering why I can’t do something that seems so simple but truly requires my body to work with me to produce. Often, writing is dismissed as a simple task that anyone can do, but for those who right, we know that it takes more than a pen and paper to craft a short story, book, or blog post.
While I’m going to give some recommendations on how to get past this in the next segment, I’m going to say that these are the answers I’ve found for my body, my medication, and my life. If it doesn’t work for you, then the best thing to do is experiment until you find what works for you.
Rethinking the Writing Session
With everything going on in your body, it will be important to pay attention and listen to its needs. People with ankylosing spondylitis will share many symptoms, but they may present differently based on the progression of the disease. What I recommend is what works for me, and may not work for everyone.
Shorter Sessions
The first way you can keep writing as you fight your back pain is to write in shorter sessions instead of blocking out eight hours in a day for your writing. You can break your writing into 15-20 minute sprints, and find movement activities to do inbetween. I like to knock out a quick writing session on my days off before I take my dog on a walk, then come back and get a bit more in where I can.
Movement Breaks are Part of the Process.
Now, it may not always be easy to refocus after taking that walk, but if you begin to treat it as part of your process then you can use it to your benefit. Whether you go for a walk, exercise, stretch, or even just walk to another room, you’re giving your body and mind a break to come back slightly refreshed. Practice this by writing for fifteen minutes, then getting up and knocking out the dishes, then force yourself to not get distracted and come back to your writing for fifteen minutes. Doing small tasks between writing sessions can help with small successes and keeping you from doom-scrolling your break away.
Write at Your Best-Body Time of Day
For many with ankylosing spondylitis, the morning is the roughest time of the day. One of the key “fun features” of AS is morning stiffness. Getting up and going can be extremely challenging, even on the best of days, and you may be quick to realize that morning is not the ideal time of writing for you. Just like with exercise, there are a lot of people, articles, and videos that say morning is the ideal time for writing. You don’t have to listen to them. Try writing at different times of the day for the week and write down how you feel after each session in a notes app on your phone. Then review it at the end of the week and try the time of day that seemed the best for the next week. Continue this process until you figure it out.
Dictation
Dictation is a legitimate tool that allows a writer to get their words to text with a simple program or app. There are many who preach it’s efficacy and efficiency, so far as offering “boot camps” to teach people how to use it. Dictation becomes something to consider as it can be done walking, sitting, and hands free most of the time.
I personally struggle with my hands a lot, swelling, joint pain, all the fun. I know that as I grow older and my condition worsens/medications become less effective, I’ll need to resort to dictation for drafting. So I’m starting now with using GBoard on my phone and my notes app to practice. It’s weird and engages my mind in a different way.
Try googling different options to find the best for you. Where I’m new to this, I don’t want to give too much advice, though there are plenty of other writers who specialize in teaching dictation. Just know that you always have an option, and the tools in your workspace can help make you a successful writer even with AS.
Your Workspace as a Writing Tool
One of the biggest wins can come from how you set up your workspace. While writing is something that people do in a lot of different locations, it becomes critical for the writer with ankylosing spondylitis to find comfort over cliches.
Ergonomics
If you’ve ever worked in a variation of an office building, you’ve heard about ergonomics. They preach it, but don’t always follow through on its implentation. For those unaware, ergonomics is the study of peoples productivity in the workplace. It’s often represented as sitting tall with your desk as a specific level, and your monitor height. I’d recommend some searches into different ergonomic set-ups, but I’ll go over what I found that works for me.
Lumbar support is my biggest win. I found a gaming chair that had an emphasized lower back support, but its sadly no longer built and the new models really aren’t better. But I highly recommend looking into gaming chairs as the start of your setup. Gamers are known for sitting for long periods of time staring at a screen. Not too far from us. Regular office chairs often are designed for comfort, but don’t always take into consideration the lower back.
You can also find lower back pads that strap to your office chair. This is what I use at my corporate job and it’s helped greatly with my back pain. I like the wider pads that help support more of my back, but you may like the thinner pads that focus on the lower lumbar. Try a couple different kinds if you can to find what works best for you.
Next you’ll want to look at where you’re writing. While you can write anywhere, the goal is to look at how its impacting your back. It can be hard where you established a routine in one setting, and now find that it aggravates your ankylosing spondylitis.
For me, it’s been sitting at a desk with a comfortable chair. I don’t use a standing desk, but that’s because my ankles like to swell when I stand for too long. You can find the adjustable desks that can transition as you get back pain, feet pain, or just adding variety to your writing routine.
I hate having to say this, but a lot of ergonomics will be body dependent. I can’t give you the perfect checklist to go through besides checking if your current setup is working for you.
Temperature
How hot or cold your writing space is can play a critical role in writing with AS. Finding the right range will depend on your body type, and your AS progression.
Warmth can keep your muscles and joints loose, while cold can help with those warm bodies like me who always seem to run hot. I’ve found that excessive heat causes my fingers to swell, so I try to keep it on the cooler side. You may be lucky enough that you can work in a sauna, though that probably wouldn’t be good for any electronics.
Play with temperature, see how it impacts your writing and your AS, as stiffness and pain during a writing session can distract from the important part, your writing.
Portable Setups
The chair and desk scenario won’t work out every day, and may not even be ideal for you. You may find your bed or recliner as a better option so it’s important to find tools that will help you write in any position.
A lap desk is a cheap option that can often be found in most retail stores. They consist of a plastic hard top with a cushion underneath to rest on your legs. The one thing to consider is if you like typing with your laptop keyboard, or an external keyboard, because that will lead to possible space issues.
Another thing to consider is your positioning. looking down at your screen in a laying or in a recliner can lead to poor body posture. Consider hooking your computer to your television if you can, that way you’re looking up instead of down. This will also enlarge the text to reduce eye strain.
When in doubt, find an ergonomics specialist, or ask your doctor what they recommend you can do to allow for the best writing sessions. I would say start with your doctor, as they know ankylosing spondylitis better than anyone else, and should be able to provide the resources to get you on your path to success.
Working With Your Flare Cycle
Sometimes you can figure out the cycles of your flare, or if your medicine is work well, when you’ll have your down days.
If you can map out your patterns, then it’s important to follow your highs and lows of the AS. For me, it’s aligned more with my medications. I know that the week leading up to, and a few days after, my infusion, my mental and physical capacity lowers. The days of my actual infusion I can’t do much beyond watch movies without getting nauseous. I don’t know if I’m alone in that response to the medications, but being aware of your responses.
In line with that, you probably have your high-output, maintenance, and rest days. Thanks to our wonderful disease, we get to feel them a little more at times.
High-Output Days:
These are the days where you’re mentally and physically feeling good. It may not be amazing, but its a day where you feel you can do the most with your writing. Use these days the best you can for your writing. Take a little extra time to write, maybe work on some plotting that requires a little more brain power, or maybe planning out some marketing stuff to get setup for your maintenance days.
Maintenance Days:
Some days you can do a little, but trying to do too much can lead to headaches, brain fog, or aching joints. It’s not a rest day, but you’re taking it easier and working on smaller parts of your project. This can include things like brainstorming, light outlining, or working on your platform by connecting with potential and established readers.
Rest Days:
These are your days where you allow yourself to rest. Just because you’re having a writing rest day, treat it like an active recovery day in exercise. Read, research, or make voice memos for yourself on what you want to write on your next maintenance or high-output days.
Knowing when you’re having which of those days is important, and allowing yourself to take the maintenance and rest days when you need to.
Closing
While ankylosing spondilitis might lead to moments of abrupt changes of plans in your writing life, it doesn’t mean that your writing life is over. You can take control of how you approach writing, when you write, and your environment to allow you to be the most successful writer you can be. Give yourself permission to work with your body, and communicate with others if you’re answering to agents and editors. That may be another blog post altogether once I reach that point.
I hope you have some new tools and ideas to work with your ankylosing spondylitis. If you find that these don’t work, or if they do, please comment below. This won’t just help me feel good, but also become an ever evolving resource for every other writer with ankylosing spondylitis.
Check out this free resource for trying your writing day types to build your writing plan for success!
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