EDS and POTS are like an evil car

Having a body with Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome is a lot like owning an evil car, which randomly fails you, without warning. It makes alarming noises, but when you go to pull over, the steering wheel won’t let you, the brakes fail at that exact moment and the hazard lights won’t come on to warn other motorists.

Your delightful car can sometimes changes its size suddenly. Instead of small and compact, it morphs into a truck, bashing into other vehicles, fences and obstacles. You can’t even tell how wide it is, so navigating in small spaces such as car parks is virtually impossible without hitting something.

Your evil car likes and enjoys randomly breaking down, right when you are relying on it to carry an important item or take you to an emergency. The seat slips about, changes height or drops suddenly so you can’t see above the dashboard or scoots backwards, so your feet can’t reach the pedals. The temperature controls are erratic and unreliable. The windows get stuck or fail to move at all when you’re freezing your arse off or boiling hot. It makes alarming clunking noises on and off, which no mechanic seems to understand or be able to identify.

Some days it looks quite presentable, with a nice, bright, shiny colour and clean interior. Other days it looks like it’s been through a tornado and had a family of giant rats nesting inside it and requires hours of cleaning and repairs before you can take it anywhere. It frequently runs off the road or into the path of oncoming traffic, without warning, and refuses to respond to your frantic efforts to control it.

It’s a nightmare.

But you need it. You are contracted to keep it for life, so trading it in for a better, more reliable model is out of the question. You wake up every morning not knowing what it’s going to do or how you can get through the day with it and still managed to achieve some of your necessary goals. It doesn’t care what you need. It is evil and enjoys your suffering and confusion. It is schadenfreude personified. And yet you are forced to accept its eccentricities and forgive its failings. After all, you need a car. Life is impossible without one. And this, your unreliable friend, is the one you have been given.

You clean it and polish it lovingly, hoping it will appreciate the care and effort you lavish upon it. And sometimes it responds with gratitude and takes you where you need to go without too much drama. But then, every day is a lottery. And no amount of planning or careful preparation can guarantee your car will behave as you need it to, when you need it to. The only choice you have is to accept what it offers - give it space to be what it is going to be and try not to be too resentful. After all, it may not be perfect, but it is yours.