Saturday, March 12, 2011

Lying by Omission.

“How are you feeling?”
    “I’m fine, thanks.” (inner eye roll).

It isn’t that I don’t appreciate when friends and family express their concern about my illness, but let me tell you- for the most part (aka 99% of the time) even if I am feeling like complete crap, I’m not going to tell you. 

For one, unless you live with a chronic illness or chronic pain, you won’t understand half of what I’m feeling. I get a lot of comments and suggestions from people more often than I like, and occasionally it takes every ounce of self-restraint that I have to not put someone’s head through a brick wall. 

And for another thing- sometimes a little knowledge is a VERY dangerous thing for people.  After I pronounce my disease verrryyyy slooooowwwlllyyyy for people, first thing they do is google.  In this age of instant information, this becomes a problem.  Some people without brains, you know, do an awful lot of talking.

Reading WebMD does not make you an expert on my condition.  In fact, the only way I may consider taking your suggestions seriously is if you have a medical degree in rheumatology or psychiatry; and even then I will take what you have to say with several grains of salt.  Don’t take this the wrong way... I know people ask because they care, but I say I’m fine because that is the expected answer. 

How often is the “how are you?” comment passed with actual intention?  Do people say it because it is expected? Or because they actually want to know?  Before I got sick, if someone asked me how my day was going, I would tell them the good things that happened and I would tell them the bad things that happened... then I’d be accused of “complaining”.  After a few rather edgy comments of such, I shut up.  Someone asks me, and I’m either “good” or “fine”. 

I mean, come on.  How many of you really want to know every little detail of how I’m feeling?  I can say I’m fine, or I can say “I’m tired of having to take medications every single day.  I’m sick of not being able to hear out of one ear, and I’m even more tired of asking people to repeat themselves constantly because I still can’t hear them.  I’m angry that I got stuck with this stupid disease that ruined my life, I’m sad because I have no idea what the future will hold for me, I’m scared because tomorrow could be the day that I relapse, or flare-up, or worse- get stuck with the world’s most god-awful drug (prednisone).  I’m tired of having my mood blown to bits everytime I take my weekly maintenance chemo dose, and I hate that I lose my appetite when I take said pills.  I’m absolutely tired of fighting with the frizzy mane of hair on my head, with the formerly-straight-now-curly-brittle-post-chemo-hair.  My joints hurt, and sometimes the pain is so intense that I can’t even hold a pencil, or a piece of chalk. I’m tired.  No matter how much rest I get, I’m tired. I’m tired of living a life where I have to hide behind a smile because ultimately, I’m not okay.  I’m not fine, and I’m not good.”  I can say “I’m fine” and try to pretend, even for just a few, short hours that I really am fine.  I say it because I wish, every night, on every star, on every 11:11 that I really could be fine.  I say “I’m fine” because the majority of the time- it is easier to pretend that I am then it is to fight with the demons in my head.  I say “I’m fine” because the looks of pity that I get are so downright depressing that it makes everything in my head that much worse.

So “lucky” for me, I can hide the fact that I’m sick from the outside.  I have no visible scars, or defects, or spots or dots that scream out “I HAVE WEGENER’S GRANULOMATOSIS”.  I’m “lucky” that I can hide it because if I don’t tell a potential date or guy-friend that I have such an affliction, I actually might stand a fighting chance at a relationship- because after all, who wants to be friends/in a relationship with “the sick girl”?

But just like the Wizard of Oz ends up being an ordinary man behind a green curtain, I’m just a scared little girl hiding behind a smile that is beginning to waver.  And maybe someday I’ll wish upon a star and wake up where the clouds are far behind me, where troubles melt like lemon drops...

Oh, and if you really want to know what f-i-n-e stands for?  Go ask Aerosmith.

Additionally, thank goodness for, where I found an article that fueled this post. The author, Christine Miserandino, is far more eloquent than I and really puts all of my emotions into words far better than I could ever hope to do so.

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