#MyBodyStory is a series of reader submitted pieces about what it’s like to live in your body. Because every body has a story, and every story deserves to be heard.
Do you have a #MyBodyStory to share? Send it to Story@DoTheHotpants.com
And now, here is Lucy’s Body Story:
The opinions expressed in #MyBodyStory are the writer’s own.Hi! My name’s Lucy, I’m 14, and my body is a bit different. I was born with a rare genetic disorder called Ehlers-Danlos Syndrome, and it makes my life a never-ending mess of medical things. It means that my body doesn’t produce collagen correctly, and it causes chronic joint and muscular pain, partial and full dislocations of multiple joints, and comorbidities like Mast Cell Activation Syndrome (allergies on steroids) and Postural Orthostatic Tachycardia Syndrome (fainting due to standing up).
I’m also Autistic and Hard of Hearing. I don’t wear hearing aids because I’ve never felt the need to, but I do use sign language as a primary form of communication. Signing with your wrists in braces to keep them from dislocating is a difficult time. My body has changed a lot over the years, but I’ve always kept my kindness and compassion. I was teased for my Autism and how I walked. It wasn’t just from other students, but from physical education teachers as well. I can’t be for certain that that was a major factor in my anorexia developing, but it certainly had some influence on my body image.
It kept getting worse until I was in 9th grade and hit a real low point with my ED. I got help, and I can say that it honestly saved my life. Recovery was kind of a bitch at first, but being weight restored has improved my symptoms from my various chronic illness and mental health issues greatly. Besides the anorexia and Ehlers-Danlos, my body is that of a normal Autistic teenage girl. I stim a lot by flapping my hands, spinning in circles, and using my various fidget toys like Tangles. There’s nothing wrong with being Disabled. I can do most anything that an able-bodied woman can do, just a bit slower.
I advocate for progressive candidates in local, state, and federal elections, gun control, disability and LGBTQ+ rights, and use my voice to uplift those who are often excluded from these conversations. Being a Hard of Hearing, Autistic, and Disabled butch lesbian means that my life never has a dull moment, and I’m eternally grateful to my wonderful body for keeping on fighting through everything that the world throws at it. Here’s to the future! May it be accessible, progressive, and filled with all different types of bodies.
Follow Lucy on Instagram