11 years old, and EDS had struck. I lost my life. Now the meaning of “Hey mom, I’m going to the park with the neighbor kids” doesn’t mean anything. The things that gave me a rush before are pointless. Now going to physical therapy is as normal as going on a picnic. Going to the doctor’s office is as normal as going to the mall. Taking meds is as normal as asking mom for a piece of gum. Putting braces on is as normal as changing clothes 4 times a day for a little girl. Putting a dislocation in is as normal as putting on a bandaid. Putting a hard collar on is as normal as putting your hair up in pigtails. Sitting in a wheelchair is as normal as riding a bike.
And yet I get up everyday. I deal with the same issues everyday. I put a smile on my face. I stay strong. I deal with the pain. Every 5 minutes I have to stop what I’m doing to put a joint back in place. No matter what I do I am still in pain. I can’t walk for long, but I can’t sit in a wheelchair for long. I take medicine 4 times a day. Every single day. Whenever I do something to relieve a problem, I get 15 more. Whenever I put a joint back in place, my skin splits. Giving me 1 more problem to deal with.
You can see that EDS is a real thing. 1 in 5,000 people have it. And yet doctors say we’re faking it. That we have gone mental. That we don’t have pain. We want attention. That we are blatantly lying to their faces. Well, Doc, where’s the proof? We have presented our physical proof to your, where’s yours? We get treated like crap by doctors, and yet we have no choice but to go back to them. They tether us to them using medicine that we have to get renewed every 3 months.
When the outrageous is normal.
When time feels like an eternity when you have chronic pain.
And yet EDS has made me a better person.