AJ Perez, 36, from Austin, Texas, was diagnosed with Friedreich’s ataxia (FA) in March 2020. He reflects on the ways his symptoms’ visibility have made him fear that his well-being might be disrupted by judgmental attitudes.

The things that I hope that I spread about awareness is just how it affects the body in so many different ways and it affects each person very differently.

I have it. I didn’t get my first symptom until I was about 23. My Disney manager said, “You’re slurring your words a bit.” And I didn’t think anything of it.

From there on, it’s been, it’s … I say it’s been a battle. Because I would go to the doctors knowing something was wrong, but having them tell me, “Oh no, your reflexes are good, you’re a strong person, you seem good.” — but me knowing something is wrong — was one of the hardest parts.

And having people be aware of that, it’s very hard because I feel like we live in an era where it’s “all about me” anyway. Everyone’s concerned about themselves. They don’t want to hear about, you know, what struggles somebody else is going through — only if it pertains to them and can help them in a way.

But the awareness that I try to spread to my coworkers is very important, just how it affects the body, the speech, just so I don’t have judgments placed on me as well. I do work in a school, so when parents see me with their children or something, they’re like, “Oh, who’s that? Who’s that guy? He came up and talked to us. Who is that?”