Be Unapologetically you

This disability pride I had the honor to be featured on the EDS Society's website for my short entry about letting go of shame. I thus decided to give it a home here too.

Here you can find the original post: https://www.ehlers-danlos.com/story/arden/

Hi! My name is Arden (@ardentherat), I am 26 and a Swiss cosplayer and costume maker. I have always loved theatre, music, japanese culture, dinosaurs, and fictional worlds.

I can hardly remember a time in my life my body was not doing weird things. From dislocations and severe migraines to exercise intolerance and atypical allergies; it has always been a “strange medical mystery of the week.” My dad’s family has always been like this, so I spent the majority of my childhood just shaking it off.

It all went downhill around 2018, when I started noticing loss of fine motor skills in my hands. I was finishing high school and remember crying from pain after having written my ancient Greek finals. I could hardly grab anything afterwards. Sight and small precise movements have always been fundamental to my work and my passions – as I persued writing, painting, costuming and guitar playing. That year, I still managed to get into my dream University but developed excrucitating back spasms and spent the two coming years mostly bedbound, one more hardly leaving the house.

After six years of tests and hospital stays, I was diagnosed (among other things) with hypermobile Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome – in a luckier timeframe than most zebras.

My care team has been amazing. They helped me relearn how to write, play, and use utensils. Despite this, it isn’t perfect; I have daily severe nerve pain we struggle to keep under control, the gastrointestinal system is still causing issues unaccounted for by my other diagnoses, and a recurrent chronic retinal detachment still tries regularly to take my eyesight. My abilities strongly fluctuate, as I think many of you will relate.

For the longest time I felt like my conditions were taking away from me my one chance to see and connect with the outside world.I am a moderate support needs autistic person and always struggled a lot to build friendships and socialise. I started cosplaying in 2009 and quickly found myself at home at conventions and meetups. To me, cosplaying has always been a way to find my little pocket of safe reality, a place where I can share my love of fictional worlds, and hEDS abruptly ripped that away from me.

What I wish to tell you during this disability pride month is to not be ashamed.

I learned how to use all kinds of mobility aids, how to adapt my craftmanship and my costumes to my changing abilities – integrating adaptability features in them.

But, most of all, this community taught me how to show kindness to myself and my everchanging body.You are not a burden for needing accomodations, and those who love you will show you that.

And if you are a zebra’s loved one, it starts with you! My family, long-term partner, and best friends have made it possible to reach for the sky. My EDS journey taught my younger lonely self the beauty of community and the resilience of all kinds of people.

In the last three years I managed to complete my BA in philosophy and comparative literature (and start an MA in the same fields), take up sewing, singing and drawing again, walk and roll at ZH pride, return to conventions, found a cosplay collective active locally, qualify for nationals with my selfmade Megurine Luka costume, win prizes, and have the honor to judge a few contests.

But more importantly I started smiling again!

None of this would have been possible if I hadn’t been taught by other zebras to let go of the specific shame that comes with our changing abilities. I am grateful for those voices every day and I wish to share that same message forward.

Shame, may it be nested internally or upheld externally, is nothing else than an ugly rusted cage. Society expects us to walk the fine line between inspirational story and ever-pained martyr, but know you are allowed to have fun, to smile, to experience joy. Smiling will never invalidate the pain and struggles we experience.

Allow yourself to be unapologetically you, regardless of what “you” means today!