Hi there!
I thought I’d come back around to my “zebra” roots for this week.
There are a lot of things about having a rare disease, or chronic illness, that may be a bit hard for most people to understand but are just another part of life for us; so I thought I’d talk about some of those things.
Having EDS means;
Having my practically life-long dream of being a ballerina taken from me at 9.
Learning my physical boundaries by age 10, better then most people know them by 25.
Going into an appointment for an ear infection and coming out with scoliosis.
Understanding my condition better than some doctors.
Watching doctors pretend to know about my condition to my face, even saying things like my bad genes were caused by not flossing, (a hygienist, although I paraphrased it a bit.) or that I’d outgrow my genetic condition, or even just mispronouncing the condition name entirely.
Waking up with my wrist swollen to twice it’s normal size, for no reason.
Smiling and nodding at a PT as she tells me things I’ve known for years.
Having to sit down because my knees just wouldn’t behave.
Learning how a storm feels in the bones, as a teen.
Not being able to sleep for 2 weeks after a dislocation because I can’t get that *snap* out of my head.
Now, with that said, it’s pretty hard to think that everything sucks when you have a chronic issue, and sometimes that feels pretty true. But there’s more to being a zebra then I can easily write down, I am a fighter because I needed to learn to fight before I turned 10. I can deal with disappointments because I’ve lived through more than you can imagine. These are hard truths, but they have also helped mold me into who I am.
My whole life, I’ve tried to keep my condition from defining me, but it would be folly to claim that I haven’t been changed by being a zebra. I don’t know who I would be if I didn’t have EDS, but I also don’t feel like I need to know. I am who God made me to be, stripes and all.
Thanks for the read!
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