Day 5 of Invisible Disabilities Week: my first time meeting someone with my disability in person!

If you’ve ever felt nobody understands what you’re going through, this is your sign we’re never as alone as we think we are.

That was a main reason I rarely talked about my muscle disability for over 30 years - I figured nobody would care or relate. Then, I connected with Carrie.

Carrie and I both have the same rare muscle disorder, have both worked in the arts and for music festivals, and both love sparkle (her @carrieccduk IG bio is “Invisible Disability | Visible Sparkle” and I WISH I’d thought of that myself!) - I’m pretty sure that makes her my doppleganger somehow?! ✨

She reached out to me in January and we realized we have SO much in common. I was in the UK in August for my cousin’s wedding, and we met up during my 2.5-day trip to London - my first time meeting someone with my disability in person! Check out this reel on my Instagram for how our first meeting went.

I’m now so positive that your Carrie is out there too - you just need to share your experiences and what you’re going through, or at least look for people sharing theirs. Let me know when you find them! 💃🏽✨🫶🏽

Thanks to @thedanshaikh for being our personal cameraman and creative director 😂🥰💖