validating the grief that comes with becoming disabled

I recently found this note in my notes app, and I think it is a reminder that some people might need. I know I needed it, so I hope this can be of some help to y'all!

I’m thinking about my pain and fatigue

and about my disability

and I’m thinking about the fact that it didn’t used to be painful to wash the shampoo out of my hair

but holding my hands above my head takes effort now

I’m reminded of how it’s not supposed to be painful to shower

I’m reminded of how things used to be and how they're just not like that anymore

I’m reminded of how young I am

and I’m reminded that I should never downplay my symptoms and the effect they have on my life

because they are very real and very painful and very not normal for a 16 year old girl

and I never want to be the kind of person who says, “oh, I’m just used to it,” or “It’s not that bad.”

because I need help and accommodations

and that’s okay

I’m not going to go through life saying it’s okay when it’s not because it isn’t

my addition:

I'm 16 years old, and I've honestly forgotten what it was like to not be in pain constantly; something's always hurting. It's beginning to be hard to remember what it was like to not have to prepare for days before overthinking everything before going somewhere because how am I going to accommodate myself without anyone noticing and I get that sometimes I just don't want to draw attention to myself but like I don't want to be scared to accommodate myself if I need something to be more comfortable and to be able to focus on whatever I'm doing and find joy in it then I should do that.

I hope this brought you some encouragement/motivation/comfort! See you again soon!