Becoming sick is similar to an avalanche. It hits all at once and a lot harder than expected. When you think that it can’t get worse, more and more piles on until you are buried alive. This is what it felt like to be diagnosed with Ehlers Danlos Syndrome and its many comorbidities.
My story starts in December of 2014 when I tore my first shoulder. I was at cheerleading practice when I decided to do a backhandspring; little did I know that this simple flip would flip my life forever. I completely dislocated my shoulder and proceeded to have surgery on it in February. Everything seemed fine for the few days after surgery, until I picked up my book bag and tore my other shoulder. These incidences were written off as coincidence. I was told that many young women have naturally loose shoulders and that I would be fine once both were surgically repaired; these doctors were wrong.
In January of 2016, I dislocated my knee walking down the stairs. Nothing provoked this incident or caused me to fall, my knee cap just slipped. Later at my doctor, he picked up my leg to examine my knee, and my hip fell straight out of the socket. This was the first day that a doctor said the words “Ehlers Danlos Syndrome”. Ever since then my life has been a whirlwind of body systems ceasing to function. Diagnoses have stacked up and my medical binder has grown and grown in width.
Since January of 2016, my list of diagnoses has grown to include Celiac Disease, Postural Orthostatic Tachycardia Syndrome (POTS), and Hemiplegic Migraines. All of these diagnoses have been scary in themselves, and each has exacerbated the next. With my celiac disease, I could not eat anything for months which resulted in lots of fainting and migraines presenting as stroked (hemiplegic) which in return seemed to cause many more dislocations. This is when I realized that Ehlers Danlos Syndrome is an avalanche disease, and with every new mound of snow, I will have to continue to dig myself out.
So far, I’ve done a decent job of keeping the avalanche under control. I write, advocate, and tell my story to anyone who will listen. I intern with politicians and spread my story, I have written over 70 articles, and now I am a Sick Chick Ambassador. My journey won’t start here. I plan to continue on solid ground, building myself up and standing tall on the avalanche that is my body. I will continue to advocate and spread awareness for this rare condition, and I could not think of a better way to do that than being a Sick Chick Ambassador.
Katy Brennan is a teenager who fights Ehlers Danlos, POTS, celiac and hemiplegic migraines daily. She has made it her mission to turn her struggle into something positive through her writing and advocacy. Connect with Katy on Instagram at @katy.brennan, on Twitter at @katie_brennan7, and on The Mighty.