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Sick Chicks Ambassador: Grace Kully

by Shira Strongin

Safe space. I spent the beginning of my teenage years blissfully ignorant of the concept. My life revolved around the lives of those closest to me. Without a second thought, I would follow my teachers, my friends, or my parents wherever we had to go. At a conference, on a field trip, or at the beach, my only worries were the group’s worries. Where would we eat? Was this spot too sunny? Where would we all meet up in the case of a (very unlikely) emergency? There was little time to worry about my individual needs, and there was little need to do so. But in the early months of my invisible illness becoming not-so-invisible to me, that all changed.

I started to worry about how long we would have to sit, because my back probably couldn't handle it.  How long would we have walk? My back probably couldn’t handle that either. Could I even keep up? How loud was the room we would be in? Would the smell trigger a migraine? Would the lights be too bright? How many stairs can I walk up without getting a headache? How long could I be in the elevator without feeling dizzy? Could my stomach handle the food? Where would I go if I had a personal emergency?

The adjustment to no longer being able to go out anywhere I wanted, whenever I wanted, was difficult. It took a while for me to accept that I can ask to slow down, or cancel plans, or get assistance without feeling guilty about it. And although I have finally adjusted to my new lifestyle, it is nice to know that there are still times when I can go back to not worrying.

I attended my first Ehlers Danlos Syndrome (EDS) Global Learning Conference last year in Baltimore. I had never been around that many people who were sick like me. No one questioned when I had to go back to my room early, or why someone was wearing a brace, or not eating, or walking one day and in a wheelchair the next. For three wonderful days, I had a safe space. A safe space full of brand-new ideas, conversations, and people, and I wanted to hold on to it forever.

But, like most good things, the conference came to an end, and everyone moved back to the daily struggle of being denied safe spaces. But I knew even then that I couldn’t wait a year for only three days of safe-space bliss.

And so, I became a Sick Chicks Ambassador.

I first heard about Sick Chicks (surprise!) at the EDS Conference, and I immediately fell in love with everything that it, and founder Shira Strongin, stood for. The dedication to uniting and empowering ill and disabled women around the world has proven to be, well, badass. A critical part of Sick Chick’s success is the events hosted internationally. They create a “fun, safe, and accessible space for young women to be themselves and support each other”. You might  come to rock out on karaoke night, or watch a movie, hang out and talk, or simply lounge in your PJs. No matter the theme or schedule, Sick Chick events are meant to be easy-going, exciting, and most of all, safe.

I am honored to announce that a fellow Sick Chick Ambassador and I will be hosting our very own event during the 2017 EDS Global Learning Conference at Bally’s in Las Vegas. We are welcoming any Sick Chick who is attending the conference to join us for food, games, and fun.
 Image Description: A young woman, Grace, with long blonde hair stands smiling in the middle of a road with forrest on either side holding a suitcase.

Grace is a 17 year old high school senior who plays piano, lives on a rescue farm, loves to read, and dreams of becoming a doctor. She fights hEDS and AMPS, and hopes to bring awareness to illness and disability through her role as an a Sick Chicks Sister Ambassador.