My pain is going to be different from someone else with EDS because not every zebra has the same stripes. Our symptoms are all different and our pain is all different.
I wanted to know what other people with EDS felt daily because if you ask any of us how the pain is, odds are we are going to say "Fine".
I asked them "in one word, describe your pain".
The answers I received...
- Torturous
- Constant
- Electric
- Excruciating
- Relentless
- Unforgiving
- Lurking
- Endless
- Always
- Permanent
- Hell
- Overwhelming
- Cruel
- Debilitating
- Continuous
- Depressing
- Fear
- Expensive
- Unbearable
My one word to describe my pain? Terrifying.
It's terrifying knowing your pain will never end.
It's terrifying knowing it is only going to get worse.
It's terrifying having no control over your body.
It's terrifying not knowing what days you'll be able to walk and what days your joints and bones will be crushing each other making it impossible to walk.
It's terrifying asking for help.
It's terrifying to need help.
It's terrifying watching yourself slowly losing function.
It's terrifying when your joints give out.
It's terrifying being in so much pain you don't know how to live one more day.
Everything about this pain in terrifying.
