This is not how it looks for reals in engaged patient land.
It’s time to be real here.
Advocacy is hard, whether for yourself or for others.
I love it, and I’ll always do it, but that doesn’t mean it’s easy to share so much of myself.
Many of us who are advocates deal with a lot of extra fun stuff that others don’t always see.
You don’t see me waking up at 2 am sick to my stomach and trying to get back to sleep.
I don’t always talk about how I can’t eat much at all.
You don’t see how difficult it can be when we have super negative comments directed at us, even those that are well-meaning.
You don’t see us scream-crying Broadway tunes in the shower because we didn’t get to participate in something we love.
We can’t do everything either. That’s hard, both for us and for others, to understand and fully grasp sometimes.
And, to be honest, this is rarely a paid venture. I do so much on top of going to graduate school and working full time, on top of having a family that so needs me, on top of my appointments and home exercises.
The doc I work most closely with says I have upwards of six jobs and, truly, she’s right.
I wouldn’t change being an advocate for anything in the world.
Just know that it isn’t easy for any of us, and remember that when you go to make negative and hurtful comments. And that you have a place to share anonymously if needed.