As anybody with ME/CFS will tell you, life with this condition isn’t exactly a walk in the park. There are no words to describe just how debilitating the symptoms of this illness can be… often while remaining almost completely invisible to outsiders.
For people with severe ME/CFS, the idea of work and employment is completely out of the question. For people with mild ME/CFS, working in a typical occupation may be possible; provided they’re careful and reasonable adjustments are made. For people with moderate ME/CFS, things often aren’t quite as straightforward.
When I think about my own illness experience, I often describe myself as an ‘in-betweener’; you can read more about that concept here. With employment in particular, I constantly found myself caught between two worlds. I knew that when I was vigilant with my condition management, I was well ‘enough’ to engage with employment in at least some capacity. However, the idea of working in a typical 9-5 occupation was completely unthinkable. The exertion of getting up, getting ready, commuting to an office, and spending the day around other people in an uncontrollable environment, even for one day a week, would knock me back and make me really unwell for days and days to follow: a characteristic symptom of ME/CFS known as post-exertional malaise.
By the time I’d graduated from university, I had a good idea of what I needed from employment opportunities for me to cope and perform at my best. I needed part-time, flexible days and hours that I could fit around how I was feeling at any given time and ensure I could pace myself accordingly. I needed employers and colleagues who knew they could trust me to get the job done, even if it meant going about things in slightly more creative ways. And most of all, I needed to be able to work from home, so that more of my valuable energy could be spent on the work itself, rather than being frittered away on getting ready, commuting, and being around other people.
Over the next few years, I was one of the very few people lucky enough to secure flexible, paid employment in the charity sector, whilst also developing my skills and reputation as a freelance writer. Now, the real question is this: where on Earth do you find these magical employers and opportunities who are open to recruiting chronically ill employees and ensuring their needs are met?
It was whilst I was researching for a blog post on finding accessible and inclusive employment opportunities with a chronic illness (you can read that one here!) that I first discovered Astriid. I immediately signed up as a candidate and detailed not only my qualifications and experience but also my health needs and requirements. Before I could begin receiving notifications and offers from Astriid’s database of inclusive employers, however, I ended up chatting to CEO Steve Shutts. One thing led to another, and now, on top of my existing freelance writing and blogging work, I work for Astriid too! Playing even a small role in opening up opportunities for other people like me brings me so much joy, and I truly can’t wait to see what the future holds for this organisation.
Being able to work alongside managing my chronic illness is a privilege and something I will never take for granted, but let me tell you, it’s incredibly tough as well. ME/CFS has no respect for your weekly schedule or workload, and if you have the audacity to think things are going well at any given moment, you can bet it will rear its ugly head and demand your attention again. On those days where every fibre of your being is sore and aching and your head feels too foggy to form coherent thoughts, sitting down to even a small to-do list can feel completely overwhelming. And when that happens, it can have a pretty drastic impact on your sense of self-worth, too.
We still have such a long way to go in ensuring chronically ill people have access to inclusive and rewarding employment opportunities, and I feel that ME/CFS in particular is a tricky one to get right. Life with the condition involves such careful pacing and activity management, and such a wide range of symptoms that vary between individuals, that communicating your needs to somebody with no experience of the condition can be an energy-depleting challenge in itself. However, if you, dear reader, are somebody with ME/CFS, never forget how much you have to offer. No matter what your state of health may be, you are worthy and valuable, and we as a society should be open to learning from you and your experiences.
By no means should we be campaigning for every person with the condition to be in work; anybody who holds this attitude clearly has never seen the day-to-day life of somebody with Severe ME. However, for those who want to find employment and feel capable of exploring opportunities, rest assured that here at Astriid we’re doing what we can. Keep on campaigning and raising awareness of ME/CFS in the general population, and we’ll strive to make sure employers become as informed and inclusive for this patient community too.
Astriid’s mission is to help people with chronic illnesses and long-term conditions find meaningful work, by bridging the gap between the Invisible Talent Pool (people who have long-term conditions but who still wish to use their skills and experience in work), and the UK skills crisis. You can find out more about us, register your skills as a candidate, and sign up as an employer, by visiting this page.
Pippa Stacey is a writer and blogger, who also works for Astriid as their Communications Consultant. She creates content about chronic illness and independent living at Life Of Pippa, and also documents her experiences on Instagram at @lifeofpippa.
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