Can You Have A Work-Life Balance With A Chronic Illness?

If you’re new here, welcome! My name is Pippa, I’m based in Yorkshire (UK), and I’m in the final year of my twenties. I was diagnosed with my chronic illness as a teenager which has completely altered my path in life, but I’m one of the luckier ones who’s experienced improvement and is now capable of working and having a career – as long as it’s approached flexibly with reduced hours and plenty of adjustments, of course.

Over the last four-ish years, I’ve documented my journey of moving from stable work in the charity sector to becoming self-employed. These days, my work mainly involves writing, speaking, and communication consultancy, and some disabled influencer shenanigans too. At the end of each year I share a reflection on the past twelve months (you can read the latest one here), and although it’s never without its challenges, in more recent years I’d been starting to feel as though I’d cracked it – I’ve found a career I love, and a way to earn an income that covers my costs of living while somewhat fitting around my condition management.

But here’s the elephant in the room, and one I haven’t been ready to admit until now. Working and pursuing a career alongside a disabling chronic illness often requires huge sacrifices in other areas of life. And when you have only a finite amount of energy per day and most of it is gobbled up by work, how do you hold space for… everything else?

Over the years, and through plenty of trial and error, I’ve found ways to adapt and embrace the things that make me happy alongside living with my disability. In fact, I wrote a whole book about how I ‘Do Life’ alongside my chronic illness. However, even alongside game-changing adaptations and adjustments, the fact remains that my present work-life balance doesn’t allow me to lean into the things that bring me joy as much as I would like to.

In the past, this lack of balance never seemed like a big issue to me. I enjoyed my work and it brought me a huge sense of purpose – it became my way of coping with the losses of all that chronic illness had taken away from me. During the early years, leaving the house or spending an hour with friends took everything I had. Many friendships and relationships faded away, my hobbies and interests were no longer doable, and my sense of identity took a huge tumble as well. Working from home was something I could do, even when there wasn’t much else that was possible. I told myself that I could still be content and fulfilled in life, no matter how much I had lost, as long as I had an enjoyable career and realistic goals to work towards.

However, lately I’ve finally had to admit that this cannot continue to be my approach to life. Putting so much value on accomplishments serves you well when you’re thriving and feeling like the best version of yourself, but it isn’t humanly possible to thrive all the time. Difficult things happen in life. That’s not something within your control, no matter how diligent you are. Over the last couple of years and the last twelve months in particular, life has delivered quite a few blows that have made it necessary to take my foot off the gas a little. And when your feelings of self-worth are tied to your accomplishments, and you’re not capable of accomplishing at the same rate, you soon realise that there must be more than this that influences your quality of life. But making space for this more isn’t as simple as you might think.

Like many people with chronic illnesses, I’m one of the in-betweeners. I’m not ‘ill enough’ to access social support, but not ‘well enough’ to work a regular job or full-time hours. I have to cover the costs of living and the additional costs of my disability, but do so in about half the number of hours a non-disabled person would work per week. And arguably the biggest factor that comes into play with my particular condition and the toll it takes on my work-life balance is a pesky little thing known as post-exertional malaise.

The Dreaded Post-Exertional Malaise

You may know post-exertional malaise (PEM) as ‘payback’ – it’s where your chronic illness symptoms significantly worsen following a period of activity, leaving you struggling even more than you were before. Pacing your activities helps to reduce the PEM, but even in a well-balanced life, it’s hard to dodge the bullet completely. PEM can grasp hold of you after physical exertion, such as leaving the house and spending time with friends, mental exertion such as sitting at your desk and completing working tasks, and even emotional exertion from dealing with conflict or difficult situations. And as you may well know, it’s an extremely unpleasant experience.

After plenty of trial and error, I’ve managed to reach a place where the post-exertional malaise from my job is minimal. However, it’s the PEM that comes from trying to live a more well-rounded life that’s an issue for me at the moment. There are still lots of things that bring me joy and make me feel like ‘myself’ – spending time with friends, reading and writing, going on little adventures, painting with a podcast on… but at present, I have to severely limit when and how much I engage with these activities to ensure that I’ll be well enough to work. Working has been the priority, and truthfully it does still have to be a big priority, but it’s time to be honest and say this comes with huge costs to my broader quality of life. If I didn’t enjoy my job, it would be a very miserable way to live. And more than that, I think that having the balance skewed this heavily in work’s favour is limiting my ability to try new things and to grow. And I’m not okay with that anymore.

Reaching A Turning Point

I’m on a bit of a journey with recalibrating my sense of self at the moment. There are lots of things that I want and need to change, and my subconscious mind is quietly working on those in the background. But honing in on work-life balance, the existential crisis that led to this turning point took place because of some chocolate chip cookies.

Let me paint the picture for you. In the latter half of last year, I was having quite a tough time. Lots of truly terrible things have happened over the past couple of years that I’m not at liberty to share, and at this time it had finally all caught up with me. The online world also seemed to be in quite a hostile state, so I was keeping myself away as much as possible. One afternoon, I felt the urge to bake some chocolate chip cookies. This is by no means a regular occurrence for me – I don’t even enjoy baking, I just enjoy the eating afterwards – but as soon as I had that thought, I knew it was exactly what I felt like doing.

But, while putting the dry ingredients into the bowl, the realisation hit me. If I carried on and baked these cookies, even if I did everything seated and broke down every component task to pace and spread out over the day, I would still experience fairly intense post-exertional malaise afterward. I can’t tell you why, but there’s something about mixing ingredients or anything that uses my arm or back muscles in a certain way that absolutely floors me and leaves me with pain and malaise all through my body. And for me, this PEM usually hits me the hardest 48/72 hours after the fact. So if I did this baking now, on a Friday afternoon, there was a very real chance I wouldn’t be well enough to work on Monday, a day when I had commitments and tasks that I couldn’t justify rearranging. So with reluctance, I stopped what I was doing. I couldn’t bake the cookies, because I had to work in three days’ time.

None of this was news to me, but having this happen at that exact time in my life forced me to confront the reality of the situation. It reminded me just how much joy that I, and many others, have to sacrifice because of energy-limiting conditions, and the ongoing sense of grief and loss that comes with that. In fact, I’ve no doubt there will be other people with chronic illnesses reading this now and rolling their eyes, because people more severely affected have to sacrifice so much more than me simply to survive. I’m well aware of the privileges I have, even in having this problem to start with. But the fact remains that during a time when I need some joy more than ever before, it seems impossible to make that happen within these circumstances. How could I add more to my life without threatening my physical health? How could I establish a better balance in the knowledge that I need to work hard to maintain my career and cover the costs of living independently?

It all seemed quite futile, when I thought about it. But after a few weeks of mulling it over, I realised that there was something I could try… although it would require some risk-taking.

Pink and blue graphic featuring selfie of Pippa in the car, with her Cavapoo puppy Ruby on her knee. Text reads 'experimenting with working patterns to find a better quality of life'.

Adjusting My Working Patterns

You may know that alongside my freelance writing and speaking opportunities, I also work regular hours per week, every week, for a few disability organisations. From experience, I know that having this regularity serves me well from both a health and financial perspective. However, although I’m self-employed and work flexibly when I need to, it’s usually the case that I have meetings and commitments scheduled in my diary just like everybody else. But what if I gave myself one week at the end of each month where there would be no inflexible responsibilities that I needed to uphold, and less of a need to micro-manage my life around to make sure I was well enough for them?

At first, I wondered whether I could treat this hypothetical week as time off – seven glorious days at the end of each month where I could step away from work and live my life, while also giving myself all the rest and recovery I needed to do that. Even if I did get it wrong and brought on a big bout of post-exertional malaise, it would be less of a catastrophe if it took a few days to recover. However, it wasn’t long before my feet were back on the ground. I can’t take twelve holidays a year. I’m not a Real Housewife of North Yorkshire, for crying out loud.

So instead, I wondered about reframing this as a ‘respite week’. I’d avoid my scheduled hours and commitments like meetings and deadlines, but I’d continue pursuing personal projects and I wouldn’t turn down amazing opportunities if they cropped up. I’d probably still be doing things that counted as ‘work’ (the grey areas of what’s work and what’s not when you’re a writer and freelancer are also hard to define – again, let’s save that for another time), but without the rigidity of the regular hours and commitments of a typical working week. This time could perhaps serve as a circuit-breaker for me, and could also alleviate another big issue I’m quietly contending with – making the time and space to support my loved ones who need me, and accommodating their needs as well as my own.

When I’d thought this through, at the end of last year, I nervously approached the organisations I work with to get their thoughts on whether it might be viable. I genuinely expected there’d be at least one ‘hell no, this ain’t gonna work for us’, and I’d put the idea to bed. But instead, I received prompt responses that were so supportive that they almost made me cry. Each of my contacts told me that my plan made perfect sense, that I’d spent many years going above and beyond what was asked of me, and that being able to hopefully find some joy again would only serve as a positive thing for our working relationship. And so there I found myself, beginning 2024 with a hypothetical idea of a monthly ‘respite week’ that had somehow become a reality.

Is A Monthly ‘Respite Week’ A Solution?

I’m not naïve enough to think that this experiment with my working patterns is going to be seamless. I’ve already blocked out each week in my diary, which in itself felt a little bit surreal, but so far, the challenges and risks circling my mind include:

  • The risk of booming and busting. I cannot attempt to condense four weeks’ worth of work into three weeks in order to ‘justify’ the time away. This is something I’ve been guilty of before, reducing my hours for my health but still trying to complete just as much as I was doing before the reduction. There cannot be a situation where I’m booming and busting – there’s zero point in even having a respite week if it has to be primarily spent recovering from overdoing it at work the week before.
  • A change in routine. As much as I wish it were otherwise, consistency and routines are the things that serve you best when you have an energy limiting condition. Mentally I may thrive from having a regular week of respite, but my body might not be quite as on-board with a disruption to usual operations. It may be that I still need to keep the structure of my days as similar as possible, even when I’m not completing the same tasks.
  • An insatiable need to fill my free time with writing. From experience, I know that whenever I have free time and feel well enough to do it, all I want to do is write. It’s the thing I choose over and over again. It’s also a fact that this proposed change has come about just as things have started to feel quite exciting with my writing career. Some of my biggest dreams are coming true, there are more deadlines I’m working towards, and hopefully there may be other projects on the horizon too. At the time of sharing this blog post, I’ve had three of these ‘respite weeks’ already and spent about 80% of my usable energy writing. Again, it’s technically work – but it’s work that makes my heart happy. I just need to remain conscious of not getting carried away and burning myself out.
  • Managing my expectations. The thought of regularly having seven days with more freedom to play with fills me with so much excitement, but I have to remember that my chronic illness doesn’t just cease to exist when I have free time. Already I’ve gotten carried away with thoughts of taking BSL lessons, planning trips with friends, learning to cook new meals, starting up some volunteering again… but there are still limitations. Each of these things may well be possible one day, but energy and financial restraints mean that I’ll still have to approach them very slowly and carefully. There are still many things I’ll have to say no to or miss out on, and I have to remain mentally equipped to deal with that.
  • Finally, I might just… not like it. Simple as that. It might be one of those ideas that seems great on paper but naff in theory, and I might end up regretting it. Time will tell.

But this is the thing – even if it turns out to be utter rubbish, I want to try. I’m not usually a big risk-taker, but I think the potential benefits of this approach outweigh the risk of potential costs. If this is something I can make viable while adding more happiness, joy, and room for growth in my life, then it will be worth it a million times over. I want this for myself, and even if it fails spectacularly, I’m sure I’ll have learned something valuable from the experience.

 An Important Note On Privilege

All while I’ve been thinking through this plan and even more so now that I’m sharing it, I’ve been acutely aware that to be in this position, where trying an approach like this is even an option, is a massive privilege. Having the flexibility to design your working day, week, or month around your circumstances is the ultimate goal for many people… and yet before now, even though I technically had that option, I always strived to do things in a way that was as close to a ‘normal’ working pattern as possible. If I have the opportunity to deviate from this norm and try something a little more unique, I should grab it with both hands.

The situation is very different for people in employment, where even the most forward-thinking employers struggle to understand the toll that working with a chronic illness can take on a person’s broader life. Through our Astriid research in 2021, 66% of chronically ill survey respondents reported that their work-life balance was poor or very poor. Somewhat ironically, part of my career consists of trying to make the world of work more inclusive, so it follows that the people I work with are generally more aware and accommodating of this issue than others. I know that so many people face challenges even in having the most routine reasonable adjustments implemented in their workplace, so anything more creative may be completely off the cards at this time. It’s not right, but that’s the current climate. I’m working on it.

Other people will face barriers such as having financial dependents, like children or family, and having to provide for them. Taking a risk and doing things differently becomes much more complicated when there are other people’s lives and perceptions in the picture. I only have myself to account for financially, and despite increased responsibilities towards loved ones, I still feel I have a decent amount of autonomy to experiment with my way of life. I no longer want the rigid (and probably ableist) expectations I have of myself to stand in the way of seeing what I can do with this.

And finally, there will be people with chronic illnesses who are in paid work and just about coping, but who simply aren’t well enough to pursue their passions even if they did have more time and space to give them a shot. Having been there myself at one point in time, and still kind of being there to an extent, my heart goes out to anybody reading this who’s currently stuck in this place of limbo, where remaining in their job is taking everything they have. Your hard work does not go unnoticed, and I hope there will be plenty more space for joy in your life again soon.

So in short, I know how lucky I am to even have the means of giving this thing a go. I really do. As with many, many things, I feel guilty that I have a level of stability in my health and enough liberty to even have some choice over the issue. But in documenting this little experiment, perhaps I can serve as a sort of guinea pig. If this doesn’t work out, anybody who reads my posts online will be able to learn from my experiences. And if it does work out, you’d better believe I’ll be ready to share my insight and try to put this on the table for anybody who might want to give it a go themselves – whether you’re employed or self-employed.

For so long, work-life balance has seemed like something of a myth when chronic illness is in the picture. It never seemed like a possibility for me, and for many years I had simply accepted that this was the way things had to be and tried to make my working life as magical as possible. Though I’ve had success with this mission and created a career I love, a change is long overdue – both in the culture of work, and for me personally.

So… let’s give this new thing a go. Anybody fancy a cookie?

Where To Next?

Graphic featuring yellow cover of 'How To Do Life With A Chronic Illness' book on a blue background. Text reads 'introducing my new non-fiction book!'

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