Tuesday, December 4, 2012

I'm Not Fine.

A normal family.
Oh, but wait, look closer, one child has a jack o' lantern face.
(He has Aspergers, but you can't tell to look at him.)
Another is in pjs - and her shoes don't match.
Look closer - the smiling one in the bandanna and brown sweatshirt
is in excruciating pain. Oh, but wait. You can't SEE that.

I have psoriatic arthritis, a form of autoimmune arthritis much different from osteoarthritis. I don't look sick, but I'm not fine. I'm ill. I'm in pain. I'm exhausted. My body is battling this disease every single moment of every single day day of my life.

"But you look and act fine!"

Why yes, yes I do. Thank you for noticing that I try not to suck others into the misery that is my physical state. 

People with cancer often look and act fine, too.
Sure, the chemo (which many people with PsA take)
and the cancer make them tired (like people with PsA),
and sometimes they need assistance walking or getting around (like people with PsA),
and often need to rest more than normal (like people with PsA),
but they often look and act fine (like people with PsA).


I'm definitely not saying that living with psoriatic arthritis is at all ike living with cancer. But for any person living with a chronic illness or condition, it's the same - just because you can't see the disease attacking their body doesn't mean it's not there.

When people tell me "You don't look sick!" or something similar, my mind goes blank and it's difficult to respond. Realizing I need a cheat sheet, this is what my oh so tired brain came up with...
"Thanks! I'm glad I don't look as bad on the outside as I feel on the inside!"

"It's one of my many talents - being in agonizing pain, yet looking fabulous."

"I find that acting normal helps me feel more normal, even though my body is causing me great amounts of pain and exhaustion."

"That's the thing about autoimmune arthritis - it sucks my energy and destroys my body on the inside, while I look ok on the outside."
Picture my four year old informed me needed
to be in this blog post.
"I wish I didn't FEEL sick."

"I wish I felt as good as I looked!"

"I could act as ill as I feel, but that would be too depressing for both of us."

"I know it's hard for you to remember how ill I am since I don't talk about it or act ill all the time, but my autoimmune arthritis will be around for life, so I appreciate you keeping that in mind."


Now, if I could only stop myself from occasionally thinking things like, "Well, you don't look like an inconsiderate jerk."



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