I was 3 years old when I was first told I had growing pains. “Great news! She’s going to be tall!” Plot twist, growing does not cause pain. I did end up being tall, but it’s really F’d up to tell a child to be grateful for their pain because being tall is…good? GROWING DOES NOT CAUSE PAIN.
As I got older (and the symptoms worsened and piled up) I was misdiagnosed, under-diagnosed, brushed off and gaslit. A big floating mouth in the shape of a friendly smile blurting “Congrats! All your blood tests are normal!” became my sleep paralysis demon.
It’s almost my six year anniversary of being diagnosed with EDS and POTS, and I’m so so happy remembering my 2018 self. But. Over 20 years of signs and symptoms pointing to a genetic condition that I was born with, and yet I was sent on this absurd diagnostic odyssey? I am still grieving my 3 year old self and my 5, 8, 7, 13, 19, 22 year old selves. She deserved so much better.
Sending all of my love to my undiagnosed babes. It gets so much better. ❤️
