Living with Ehlers-Danlos Syndrome (EDS) can sometimes make it seem like all the things you love are just out of reach. But that doesn’t mean you have to give up on your creative passions. It’s taken time, patience, and plenty of trial and error, but I’ve found ways to keep painting, even when I’m not feeling my best.

Whether you have EDS or any other illness that causes chronic pain and limited mobility, I hope these thoughts help you feel less alone and maybe even inspire you to keep creating.

THIS POST IS NOT SPONSORED AND DOES NOT CONTAIN ANY AFFILIATE LINKS. ALL OPINIONS ARE MY OWN.

The content shared on this article is strictly for general informational purposes only. I am not a qualified doctor, physiotherapist, or healthcare professional. I am just sharing my personal journey and experience with Ehlers-Danlos. Please use the information shared here thoughtfully and always seek professional advice when necessary.

This painting speaks of my journey with EDS. The black and white zebra, hiding in the background, is me before my diagnosis, when my pain was disbelieved, my voice silenced, my spirit nearly crushed. The colourful zebra is me after my diagnosis: she steps forward boldly with a smile, empowered by truth and understanding. No more hiding. No more doubt.

PACE YOURSELF

Planning out your days and weeks might feel like you’re giving up your spontaneity. It can feel restrictive and yes, sometimes even isolating. But pacing is one of the most important tools I’ve learned since my diagnosis. At first, I didn’t understand what it really meant, or how to make it work, especially as a mum of two young children.

Even now, it’s something I’m still learning. Some days I have to choose between painting and doing anything else I enjoy, knowing that whichever I pick will likely cost me the next day or two. I’ve learned that prioritising one thing often means letting go of two or three others. Breaking tasks into shorter, more manageable intervals, and giving myself space to rest in between, makes a big difference. It’s not always perfect, but finding a rhythm that works for your body can help you use your energy more wisely and still make room for your art.

EMBRACE THE SPOON THEORY

Imagine waking up each day with only twelve spoons, each spoon representing a slice of energy you have for the day. That’s the Spoon Theory by Christine Miserandino, and it sums up the reality of living with chronic illness better than anything else I’ve read.

Every little thing, getting dressed, making lunch, meeting a friend, or painting, costs a spoon or two. And how many spoons you start with can vary wildly from one day to the next. Some days you might have more. On flare-up days, you might wake up with none at all.

The goal is to plan ahead and avoid using all your spoons too early, but let’s be honest: flare-ups happen even when you’re careful. Lack of sleep, back-to-back appointments, Mast Cell Activation. Sometimes your body has other plans. And that’s okay. You’re still showing up. You’re still making something beautiful, even if it’s just in your head for now. That counts.

OPTIMISE YOUR ART STUDIO

As artists, our imagination has no limits, but unfortunately, our bodies do. If neck, back, or joint pain makes painting difficult, there are small adjustments that can make a big difference:

Plan your session in advance, and take regular breaks once you start. I use a timer on my phone every 30 minutes, so even when I get lost in the painting, something gently pulls me back. You could also create a playlist the same length: when the music ends, it's time to pause.
Use a table easel. One of the best bits of advice I got from a physiotherapist was to avoid looking down for long stretches. She described my head as a bowling ball balanced on a straw, and she wasn’t wrong! Now, while I still use a flat surface for wet-on-wet painting, all my detailed work is done upright, with a table easel.
Consider a height-adjustable desk. Mine lets me switch between sitting and standing, which helps a lot when my lower back acts up. A good ergonomic chair with adjustable height and armrests has also been essential.
Support your body. A coccyx cushion helps reduce tailbone pressure, especially during long sessions. I also use a small footstool to keep my posture in check and avoid crossing my legs (which I still do out of habit!).
Talk to a professional. If your joints need extra support, a physiotherapist can guide you through the safe use of braces or kinesiology tape. I use both depending on the day, but always under advice.

“That is what chronic illness is – a disconnect between what our souls can do and what our bodies can do.”

— Barbara Lieberman

STAY CREATIVE, EVEN WHEN YOU CAN’T PAINT

There are weeks I can’t paint at all and yes, it’s frustrating. But I’ve found other ways to stay connected to art during those times.

I keep a sketchbook by my bed so I can draw when I’m resting, sometimes with a hot water bottle or an ice pack on my joints for comfort. If I have more energy, I use my iPad and play with digital watercolours on Procreate. And when I can’t create at all, I watch tutorials, read art books, or even just scroll through inspiring images.

It’s about staying close to your creativity, even if your hands aren’t moving. Some days, just mixing colours or swatching a few paints is enough to lift my mood. If all you can manage is ten quiet minutes at your desk, take them. That’s still creating.

FIND YOUR BALANCE

Living with chronic pain is all about balance. You learn over time where your limits are and how far you can push before you tip over into the “point of no return.” It’s tempting to do everything on a good day but the crash that follows can set you back for days. That Boom and Bust Cycle is something I’ve come to know well.

To help with balance, I plan my daily activities and set alarms to remind me to take breaks, small things that really help prevent burnout. I also try to do physio and keep my body moving most days, which helps strengthen the muscles that support my joints.

And on the days I forget and the pain takes over, I’m learning not to be too hard on myself.

BE KIND TO YOURSELF

Managing chronic pain and EDS as an artist isn’t easy but it’s not impossible either. Every body is different. Every day is different. You’ll have to find your own rhythm, your own limits and honour them, even when it’s hard.

The most important part? Be kind to yourself. Not just physically, but mentally. That quiet voice inside the one that cheers you on when things feel tough, listen to it more often. Give yourself credit for showing up. That’s the foundation for everything else.

For me, painting has become more than just a creative outlet. When I paint a butterfly, I feel free. Like I’m flying with it. Even on the days when getting started feels impossible, I remind myself that the art is already in me. And it doesn’t have to be perfect. Because art isn’t just something we do. It’s part of who we are.

Don’t give up on your vision. Keep going, at your own pace, with whatever energy you have.

AND WHENEVER YOU CAN… JUST CREATE.

HELPFUL RESOURCES ON EHLERS-DANLOS

Ehlers-Danlos Syndrome is a complex genetic disorder that’s often misunderstood and frequently misdiagnosed, leaving many people to navigate years, sometimes even a lifetime, of confusion, incorrect advice, and ineffective treatments.

My own path to a diagnosis was long and difficult, full of unanswered questions, uncertainty and frustration. It took over four decades to finally piece everything together. That’s why I’m committed to raising awareness of this rare disease, and I hope the links below can offer support to anyone still searching for answers or coming to terms with a recent diagnosis.