Rare Disease Day
Image description: Kae is on the right side, linking her left arm with her friend walking down an accessible beach ramp in Toronto, while using a cane with her right hand.
Today, we celebrate those living with rare diseases and people who advocate for them, including researchers and scientists helping to find a cure. It feels like a lifetime ago that I felt shy or ashamed to talk openly about my journey with MD. If you told me four years ago that I would ultimately end up dedicating my platform to it, I would’ve snarked at you.
It took me a long time to get here, not only because I wasn’t ready to talk about it but because it felt like I was speaking a foreign language. No one had heard of Muscular Dystrophy, and no one seemed to know how to respond or care. I was on my own.
My struggles stayed silent with me for a long time, and I internalized ableism alongside society until recent years. I never want anyone to feel the way I felt for most of my life. I guess you can say raising awareness is part of my life’s purpose now, and I won’t stop educating because ignorance breeds prejudice. Being diagnosed with a rare disease feels like a big f*ck you; it constantly tests your will and it makes your journey to finding the right education, health and care support much more difficult. Well, whatever your truth is, you have to make it a big deal because it goes beyond your own ego and existence—it can save a life, including your own.
Happy Rare Disease Day, friends. Stay strong. Stay hopeful. Being rare doesn’t have to mean being alone.❤️🔥
Image Description: Image of large, black, bold, repeat text that says “we cannot stay silent about things that actually matter” against a light beige background.
Image Description: A black and white illustrated meme image of a guy in the corner at a party, with text that reads, “they don’t know I’m living with a rare disease”, edited by Kae.