“It has almost been a lifetime of pain. A lifetime of looking for answers and hoping for a miracle. For as long as I can remember I have been in and out of hospitals desperately searching for answers. Daily bone dislocations, bruising at the slightest touch of a feather, chronic headaches, fainting episodes, and daily nose bleeds that would last for hours. I knew something wasn’t right. Yet sadly, everyone around me had a different opinion. I was told I was making things up or wanted attention. Time and time again others would look at me and say that I looked healthy.
Nobody believed me until I had a stroke at 13. I had a hemorrhagic stroke that impaired the left side of my body. It took over a year of physical therapy every day, numerous doctor’s appointments, acupuncture, and other herbal remedies to regain my motor function. It was within this year that my doctors finally started to listen and search for answers. After genetic testing, tissue samples, mobility measurements, and A LOT of blood work I was finally diagnosed at Stanford with Hypermobile & Vascular Ehlers-Danlos Syndrome.
Now don’t get me wrong it truly was a sigh of relief to finally have a name to what I have been experiencing my whole life, but I still felt empty. The truth is having an invisible disease opens you up to a lot of heartaches. The most prominent being friendships. While I can communicate how I am feeling to my friends, ultimately, I look ‘healthy’ so at times it’s hard for them to understand why I have to reschedule or leave early, or why there are weeks that I cannot physically get out of bed. At times I almost wish you could wrap my entire body in a cast just to show others how I am feeling and so that they can extend some grace.
Now, after being diagnosed nearly 10 years ago with an invisible disease, I have truly come to terms with having Hypermobile & Vascular Ehlers-Danlos. While life may look different for me, that doesn’t mean that I have to stop living. Modifications are okay and something that I have come to accept. Having EDS has taught me to advocate for myself, trust in my body, and push the boundaries of normalcy. I wouldn’t change it for a thing.”
Bailey
