What would you like people
to know about Lupus sufferers?
That they make it hard for us when they don’t
try to understand. It’s hard to be sick when
people keep thinking you can just take a nap
and get over it, when they believe you’re faking
and your whole body aches, when you look so
well, like are you sure you’re really suffering
from a chronic disease? You feel so much guilt
over always cancelling plans, being unable to
participate, over disappointing people, you just
fake being well.
Sometimes I say I’m ok, when in actuality I’m
going to jump into bed the minute I am alone.
When sometimes I get tired just thinking about
the energy I need to take a bath, and I worry
about falling asleep in the bath. Sometimes I
spend all morning trying to talk myself into
getting out of bed, but it’s so exhausting, I just
don’t bother. I wish people understood how
exhausting and painful lupus really is.