What 'I Am Tired' Means as Someone With Ehlers-Danlos Syndrome


Being tired is my normal, but it means something different to me than it does to most people. “I am tired” means joints that don’t stay in place. It means some of the worst pain I have felt in my life. It’s the feeling of being stabbed or kicked in a joint. Something I wouldn’t wish on the worst person in the world.

Being tired means using a wheelchair at times because walking hurts too much. It’s something most 20-year-olds don’t have to use, and when I use it I feel like people only see the wheelchair — not me.

It means my beautiful English saddle sits in a closet, not on the back of a horse. It means I feel like the money I spent to buy it was wasted, and that my dream of riding on a local college equestrian team is impossible.

It means asking for a ride instead of taking a bus or a train — something that feels shameful to me because I take pride in being able to get around on my own. It means people have to do more for me; it makes me feel like a burden on my friends.

It means wondering if I will be able to handle college, and if I am wasting my time by trying.

It means thinking I might never be able to have a job — something that feels so heartbreaking I don’t want to voice it out loud.

It means going to so many doctor appointments I can’t keep track of them.

It means losing the ability to eat the foods you love because they make you sick.

It means braces and splints.

It means crying when my cat lays on a part of me that hurts.

“I am tired” means feeling like going back to bed before I’m even fully awake.

It means wishing this was all a bad dream and maybe, just maybe, I might wake up from it.

Ehlers-Danlos syndrome is like having your body made of wet noodles, and your mind and body are so tired from just trying to hold it together until maybe, just maybe, you can get to bed and sleep.  

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