Rethinking Work with Chronic Illness and Invisible Conditions
There’s a particular kind of exhaustion that doesn’t come from doing too much, instead it comes from trying to fit yourself into a place, shape and system that wasn’t even designed for you in the first place.
I’ve spent years quietly thinking the same thing over and over again. For decades I have been applied, interviewing, landing jobs but never really feeling at home and settling in them at all.
Since 2020 especially, things have felt like they’ve ground to a halt. Or maybe more accurately, I have been trying to move forward in a system that doesn’t move with me.
And recently, I’ve started to wonder: What if the problem isn’t me?
Living, working and thriving
I live with hypermobile Ehlers-Danlos Syndrome. It’s dynamic, unpredictable and often invisible. Unless I tell you about my eyes and my eyesight, all you see is a woman wearing glasses. There is a lot more going on.
Some days I can do a lot. Some days I can’t. Most days exist somewhere in between, requiring constant negotiation, adaptation, and creativity just to exist, let alone “perform.”
Corporate life, as it stands, doesn’t really account for that. It rewards consistency. Predictability. Output. Like some sort of machine.
And well, I offer… none of those in a traditional sense.
What I do offer is something else entirely.
I offer perspective.
I offer lived experience.
I offer creativity born out of necessity.
I offer resilience but less shiny and instagram worthy and more quiet, I can only do my best as when I can sort of way.
And for a long time, a very very long time, I tried to squeeze that into CVs, cover letters, and application forms, now adding AI into the sorting mix as well.
To translate something deeply human into bullet points and “key competencies.” It didn’t quite fit. I didn’t quite fit.
So now, I’m trying something different. Instead of asking “How do I fit into work?” I’m asking, “What if I build work that fits me?”
Work that allows for fluctuation.
Work that values insight over output.
Work that understands that lived experience is expertise.
This doesn’t mean stepping away from the world of work entirely. It means approaching it differently.
Working with organisations, not trying to become one.
Creating conversations around chronic illness, invisible conditions and inclusion that are honest, human and maybe even a little bit light-hearted and humourous because even serious topics deserve room to breathe.
I’m not your typical corporate voice.
And maybe that’s the point.
Because if workplaces are going to become more inclusive, more human, more reflective of the people within them, then the voices shaping those conversations can’t all sound the same.
Some of us are a little more…
whimsical.
A little more honest.
A little less polished
and a lot more real.
And maybe that’s exactly what’s needed.
Are you ready to become more human and empathetic?
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