The worst?

 Friedreich’s ataxia saddles you with an awful lot of crap, so I hesitate to declare something “the worst.” 

But hearing groups of loved ones laughing uproariously and not having a clue why, or even just talking and not knowing what they’re saying, is pretty bad. I guess something could be worse — not having those loved ones, maybe.

You feel so miserable for what you’re missing, but you don’t want to show that misery because you don’t want your loved ones to feel bad. I fail at this.

My hearing aids are not too helpful. Neither are captioning tools I own.

You are there but not there, enjoying your people being around but missing much.