For a long time, I didn’t even know how to talk about it

For a long time, I didn’t even know how to talk about my disability - I was in my mid-twenties when my muscle specialist finally quantified it to me, and I learned I have about 33% strength of the average person. Not 33% LESS strength, just straight up, 33% strength. A wildly failing grade, finally assigned to what felt like my ability to do literally anything. 

Driving home from my appointment, not only was I surprised, I was mad. I had lived 26 years with no understanding of my own body, but now I finally had an explanation that other people could understand, and it almost felt worse. What kind of life can I have on 33% strength?

I’ve only been ✨open✨ about my muscle disability for 2.5ish years, which is recent enough that it still feels wild to think back on my life when I was undiagnosed (20+ years), or had no easy way to conceptualize/explain it (26 years) or avoided telling people as much as I could (30+ years).

Until recently, I never really thought about the mental health side of living with a rare physical disability. But when I remember having no name of a condition I could research to find out why my body was the way it was, and no terms to Google to find other people living with the same disorder, and not knowing I was part of the rare disease community or that one even existed, I do remember that it was kind of a lonely experience.

I think that’s part of why I like talking about it so much now - especially during Disability Pride Month - because when we talk about disability, we find the people who can relate, and realize that even if our diagnoses or journeys have been different, that we’re not alone in them after all. 💫