Working Full-Time with Chronic Illness
As our social media followers may know already, I started a full-time (albeit remote) job this summer. Before this, I worked about 60 hours per week, on average, as a freelancer in addition to blogging, writing, and running my small press. That was even less sustainable than the thought of working full-time with chronic illness! Fortunately, my role allows a lot of flexibility, rather than a strict 9 to 5 workday.
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That being said, this isn’t making the process of balancing a full-time job with the unpredictability of disabilities any less of a challenge. On the contrary, it’s been nearly a full quarter since I began this role, yet I’m still struggling with the adjustment! In the past few months, though, I’ve learned a lot about working full-time with chronic pain and other conditions. In particular, I’ve been working my head around how to do so successfully, simultaneously being a successful, reliable employee while managing my health and symptoms. So, of course, this is the sort of thing I can’t help but share here, too.
Take advantage of the good days.
As a freelancer, I found myself in a never-ending cycle of burnout, leading to a severe health crisis this past spring. In particular, Arianna Huffington’s experience hits home, along with the lessons she learnt in the process: change is absolutely necessary. In my case, this means I must make more time for rest and—despite my overly ambitious instincts’ protests—recreation, as well. I’m still learning how to reach this balance, but I’ve quickly learnt that making the most of those days when symptoms are minimal is a crucial aspect.
Fewer hours doesn’t mean less effort.
This may be particular to my situation, but I’m technically working far fewer hours as a full-time employee than freelancing. Nevertheless, I’ve also been struggling over the past few months while I adjust to a 40-hour workweek (or slightly over, in most cases). Much to my surprise, working full-time with chronic illness has led to more exhaustion despite being fewer hours than my freelance efforts previously. I know that starting a full-time job can be exhausting, but I had no idea just how tiring it would be!
Having the right team is key.
Of course, you can’t always change the people you work with. But, when that is something you can control, your supervisors and colleagues must be supportive. I’ve been ridiculously lucky on this front—my supervisor and colleagues might not know the innermost details of my diagnoses, but they know that I’m disabled. They’ve been incredible in understanding the struggle and trying to make this job work for me.
Be upfront about your needs and limitations.
I’m still grappling with this point personally, but I’ve realised that it’s essential to be pretty frank about the accommodations you need and the challenges your diagnosis might present. In my case, this was part of the reason I struggled to find a remote role and even failed to get some freelance clients before this. One particular difficulty, for me, is difficulty making phone or video calls. Fortunately, there’s a lot of technology in the modern days that allow me to manage with text-based platforms, whether it’s online ordering or chat service.
Remind yourself of your strengths.
One part of my new job that I’ve especially struggled with is meeting a weekly quota. On difficult days, that struggle has been enough to leave me questioning my abilities and having this job. I’ve had others tell me that I was a perfect choice for this role, but I can’t help but question it on the hard days. When this happens, I stop and try to remember why I’m here. Then, for a few moments, I’ll look through high scores or positive feedback my previous work has received.
Listen to your body.
Arguably, this is just a crucial tip for life with chronic pain or illness more generally. Flexible hours mean that, when I can’t keep my eyes open one afternoon (thanks to what’s thought to be myalgic encephalomyelitis or chronic fatigue syndrome), I can sign off and take a nap, then return when I’m feeling a bit more functional. Likewise, when I’m feeling better than usual, I can push my limits a little more, leaving space for another day to be shorter when I’m struggling.
Take complete breaks.
Working through a bowl of chips between paragraphs doesn’t count as a lunch break. Ideally, I try to maintain a schedule with a full lunch break and two coffee breaks (morning and afternoon). At the very least, I make myself step away from the screen for a few minutes. This is vital to avoiding more significant flares, like a screen time-induced migraine, and staying productive when working.
Find Productivity Tools that work for you.
As spoonies, we can’t always thrive with conventional productivity methods and tools. However, I’ve found that a few productivity systems and productivity tools, in particular, help me get my work done with less stress. Of course, some days require different methods than others, and plenty of trial and error is involved. What matters most, though, is that you find what works for you and take advantage of your newfound productivity.
Keep notes and a to-do list.
If your chronic illness comes with brain fog, this is crucial. I keep an array of to-do lists between GoodNotes, my favourite task management apps, and my pen-and-paper lists. Not everything that comes to mind throughout the day is a task, though. So instead, I keep notes, too. Sticky notes are ideal, while the iOS Notes app or similar programs offer digital tools that do the same.
Create and utilise a flexible routine.
The benefits of routines are vast, especially when you’re dealing with conditions like autism or ADHD. At the same time, disabilities make that sort of consistency difficult. You never know when a pain flare or other symptoms will throw your routine aside! Tiimo is a great tool, particularly for neurodivergent schedulers, and Google Calendar is another fan favourite. I use these to outline my routine (there’s little chance I’d remember otherwise!), but allow myself to adjust it as needed. Leaving a few “free spaces” in my week ensures there’s room to accommodate those adjustments!
Embrace the unconventional.
I use this tip for productivity more broadly, too. Does having a stim toy or weighted lap pad make the workday easier for you? Never mind what others might think. Do what works for you! So long as your unconventional tool or method isn’t harming you or someone else, there’s no reason not to take advantage of it.
Find workarounds when needed.
Sometimes, your illness just won’t let you do the tasks at hand. For instance, when migraines affect my vision, I’ll struggle to type an article, much less edit and format it. In these cases, I turn to Otter.ai to dictate my assignments. I was surprised by just how accurate their transcriptions are! I’ll just have to make edits and format the text once my eyes are working properly once again. Think of where your symptoms cause a struggle and see if a similar workaround can help you thrive despite your illness.
Adjust your expectations.
Chances are, you’ve long since realised that you can’t accomplish things with the same speed and ease as someone healthy. This is especially true when working full-time with chronic illness. So remind yourself that sometimes good enough is plenty. As much as you want to be a reliable employee and impress your boss, you can’t expect every single task to be done perfectly—at least not if you expect to stay [relatively] healthy.
Know your limits.
Some people can’t work full-time with chronic illness or disability, despite their best efforts. If that’s the case, you might consider part-time or other alternative working hours to work with fewer complications. In some cases, you might not be able to work at all. This is undoubtedly a mental and economic challenge, but it’s essential to do what’s best for you and your health. If you need to decrease your work hours or step away from your career path, it’s worth considering whether these are compromises you can make for the sake of your well-being.
Do you work full-time with chronic illness? What helps make it easier?
