Drawing Life with Marfan Syndrome

Without meaning to, Lucy drew her life. As the image took shape, she realised it was herself: delicate, resilient, moving through a spiral of symptoms that shape her life without defining it. Symbolism emerged on the page almost by accident: a strong centre surrounded by waves of invisible pain. Read Lucy’s poetic piece:

I didn’t set out to draw my life.

When I started this piece, I wasn’t thinking about Marfan syndrome, chronic illness, or a metaphor. I drew it completely freehand, no reference, no plan- just letting my hand move. It was only afterwards, sitting with the finished image, that I realised I’d drawn myself.

There’s a quiet world beneath the surface, one I navigate every day. It’s not visible in photos, not obvious in passing conversation, and rarely understood without explanation. But it’s real. It’s the ocean of chronic illness.

The shape I drew feels like a sea creature-something made for constant motion rather than solid ground. There’s a centre, and from it everything spirals outward. At first it could be mistaken for a wing or something abstract, but the more I looked, the more it felt undeniably aquatic.

I often imagine myself as a seahorse.

Seahorses aren’t fierce or fast. They’re delicate, easily fatigued, vulnerable to pressure and change. They survive by adapting, moving slowly, anchoring themselves when currents become too strong. Like me with Marfan syndrome, fragility isn’t a flaw; it’s a condition of existence.

In the drawing, the centre feels like me-  the core self that remains, while the surrounding shapes spiral like symptoms: ever-present, always moving, sometimes overwhelming. They shape my life, but they are not my entirety.

People tend to see the surface: the artwork, the smiles, the moments of sparkle. What they don’t see, I swim through. The recovery after a short walk, the planning behind every outing, the mental calculations required to balance joy with limitation. Chronic illness isn’t just a medical diagnosis; it’s a full-body, full-heart experience.

What stays with me most is that none of this symbolism was intentional. My hand knew before my mind did. Somewhere between muscle memory and lived experience, the truth surfaced on the page.

This piece isn’t about fighting illness or overcoming fragility. It’s about living inside a current that doesn’t stop, about adaptation rather than resistance, endurance rather than force.

Like a seahorse, I’m not built for speed or strength. But I am built to endure.

And somehow, without meaning to, I drew that.