8:06am June 22, 2013

That didn’t work as planned

I was trying to respond to a tiny bad comment I read on a news site regarding chronic illness.

At midnight.

By writing what a bad day actually entails for me. Like a really bad day. To show it goes beyond what a nondisabled person would call getting tired.

8 hours later…

Maybe I shouldn’t have done that, given I didn’t get much sleep last night either.

Now I’m going to have, not the super bad day I described, but not a good day.

And I never even finished my comment.

Because apparently it takes too much effort to remember how many parts of my body can go wrong at once.

I wish I was making this up. Like… I couldn’t if I tried. Normally I’m not one to try to convince nondisabled people that they don’t know what they’re talking about when they try to compare their experiences to disabled people. Because… too complicated to get into. Basically most times I hear people complain about nondisabled people doing that, they’re saying stuff like “Don’t think you have it bad when you have a cold, I have it even worse, so quit complaining.”

But this person was out and out “I don’t know what disabled people are complaining about, everyone gets tired sometimes.”

And I was suddenly filled with an urge to explain that the kind of thing disabled people mean in this context isn’t “so tired I’ll sleep awhile” but “my body is so run down it’s dangerous”.

Only then I started trying to explain every area my body does that, and learned the uncomfortable truth that my body does that in more areas than I ever prefer to think about.

Oh and one reason it hit me so hard when this person said that, was a lifetime of hearing my brother make similar remarks about disabled relatives, and a sudden realization that I still don’t know if he grasps that my mom and I are actually dangerously sick, because last I talked to him about disability ever, he still thought being 170 pounds could put you in a motorized wheelchair, and when I was growing up he said our parents wouldn’t be so (physically) sick if they didn’t rely on (fairly minimal, as things go) medications, thus making me terrified to even take a Tylenol now and then throughout childhood, and etc. on and on throughout our lives. And I’d been thinking about his comments about family members and later me, in that context, BEFORE I found the comment.

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