Slow road to becoming disabled.
Hi! My name is Kae (a.k.a. @lettereleven) and I was diagnosed with #LimbGirdleMuscularDystrophy at the age of 17. I first started to experience symptoms at age 14: climbing stairs, walking, running, squatting, tippy-toeing and jumping all slowly became difficult but I was still somehow mobile and able to move around independently—it was a very confusing time, especially not knowing anyone like me. Finally, at the age of 17, I was officially diagnosed with #LGMD2B but I still didn’t know what to do with that information and neither did anyone else, including doctors. I was told there was no cure and no treatment and was sent on my way. With little education and guidance on disability/chronically-ill culture, I didn’t disclose my diagnosis to anyone because I didn’t want to be judged or treated differently. In hindsight, I can now identify a part of this coping strategy as internalized ableism and my silence as being part of the problem All of my teenage years and young adulthood were filled with anxiety, depression, and shame, trying to survive while figuring my place in this world as someone “different”. I encountered and continue to face many unique challenges and barriers today but I am a stronger and better person because of it—I’m now aware the problem isn't me, it's society's perception and lack of accessibility/inclusivity. It wasn't easy but I didn’t let this progressive muscle-wasting disease hold me back from living the life I wanted and I still don’t. I felt very alone on my health journey, and I don’t want anyone to feel the way I did. Today, I am very passionate about dedicating my time and energy to helping others know they’re not alone and that they’re worth every bit of life!