I grew up in a small town in the South of France not far from the Mediterranean Sea.
And from the age of 9, I spent every summer with my grandma in La Rochelle, a coastal town by the Atlantic Ocean.
Water is my element.
Ehlers-Danlos syndrome (EDS) makes me a zebra, but really, I’m more like a mermaid.
I come alive in the water, my body regaining strength with every movement.
Becoming chronically ill and disabled has opened up a new kind of dictionary to me.
One containing the same words as all the other dictionaries, but with different meanings attached to them.
I’m not against the warrior narrative per se – I do sometimes feel the adrenaline and despair of a soldier in battle – but somehow it doesn’t feel quite right.
Instead of talking about wars, I like talking about waves.
The ups and downs.
The resilience that comes with learning to navigate this new life.
The unpredictability of a sea that can be calm one minute, and roaring with fury the next.
Sometimes I’m stuck in the middle of the storm and I can’t fight it.
But sometimes, when I’m at my weakest, even the gentlest of waves can crush my body and soul.
There are four principles that have helped me make sense of this new world:
Learn to know your boat.
It’s not the same as it used to be. You might not understand it fully. You may fear its erratic reactions. But it is your boat. Strengthen the areas you know are most likely to be flooded – physical or mental. The areas that are most likely to suffer once a storm hits. When the sea is calm, work on making the overall boat as resilient as you can.
Communicate with your crew.
Being chronically ill and disabled can be one of the loneliest experiences in the world. You’re alone on the boat. But you can build a crew — your support network, whoever they are (family, friends, partners, doctors, psychologist etc.). You’ll continuously have to learn how to best communicate with them.
Understand the weather.
Understanding your environmental triggers will be key in keeping your boat afloat. What’s most likely to affect you? What can you control and what is impossible to control? Keep asking yourselves these questions.
Never leave your ship.
It is normal to think there’s no hope. No better tomorrow. To think that things would be better without you in this world. Without the pain. Not mentally breaking into a million pieces when you’re chronically ill and disabled is one of the hardest things to do. Even if your ship is falling apart, grab the pieces and hold onto them until you can glue them together again.
Wherever you are on your ship in your journey, remember you are not alone. We’re in this together.
Are there any metaphors you like to use to describe what living with a chronic illness feels like? Leave a comment below.