Albert Einstein was quoted as saying “Two things are infinite; the universe and human stupidity…and I’m not sure about the universe.”  Well, Mr. Einstein, while I think your hairstylist apparently went to the Cosmo Kramer School of Coif Design, you may have hit the nail on the proverbial head.  I am continually amazed at some of the laughable things that people say.  I know Spoonies aren’t the most tolerant people on the planet when we are flaring…I fully admit to fighting the urge to stab someone with a spork when they smile, nod their head, and say “It’s always darkest before the dawn.”  I know in my heart they mean well…I mean let’s get real; it’s not always easy to find the “right” thing to say to someone who has their face stuck in a casserole dish because they couldn’t make it to the bathroom in time to be sick from their latest dose of chemo. However, throwing an overused and simplistic inspirational cliché at us isn’t the way to commiserate.

I know what you’re saying… “Well Steph, we’re just trying to help.”  Yes, I know this….and while we may love you for your effort and willingness to stick your head into the lion’s den; we’ve heard them all before.  There’s just so many times that we can smile sweetly and act like we have heard something amazing and earth shattering that will change the course of our destiny.  The support and love of our friends is vital…make no mistake about that.  However, instead of spouting off fortune cookie nuggets of wisdom, just simply say “I’m sorry…I wish it didn’t hurt.”  Yes.  Believe it or not, it’s really that simple.  That’s all we want….an understanding that it hurts, there’s nothing that can stop it, but that you love us anyway…even when our heads spin around and fire shoots out of our eye sockets. 

Not long ago, I became so amused at the phrases that were being repeated to me that I started writing them down and putting a tally mark next to them every time each one was said.  I have come to the conclusion that there are just certain phrases that need to be banned from the English language forever, or at least come with the hefty penance of being forced to watch repeats of Jersey Shore over and over until you are bleeding from your eyeballs.  Now I know you are reading this saying to yourself… “Steph, where can we find such a list?” No need to wait and wonder…I have compiled a list of the greatest offenders from slightly annoying to the most absurd, along with a response that I like to call “what I would have said if I wasn’t such a proper southern debutante princess belle”. I implore you to never use them in the presence of someone suffering with an autoimmune disease. Pay attention…there will be a test later. 

*DISCLAIMER* (The following list is meant to be taken as tongue-in-cheek.  It is in no way a script to be negative or an otherwise snarktastic Spoonie…..mostly. ) 

7.   Good thing come to those who wait…technology will catch up.

Really? I waited three years for the sequel to Speed and what I got was a movie so bad that Keanu Reeves couldn’t even be bothered to show up. If I sat around and waited for things to get better, I would never leave the house and end up on an episode of “Hoarders”.  When and if technology DOES catch up, I will be ready and waiting…but until then I’m running this wagon until the wheels fall off.

 6.   Every rose has its thorn so look to the bright side.

First of all, unless you are Bret Michaels in the Poison days singing with a guitar and a smile, you aren’t allowed to say this phrase to me.  Period.  End of story.  Second of all, everyone has their own personal thorns, but mine come in the form of muscle failure, a failing liver and random rashes that cause so much scarring, much of my body looks like a topography map . My bright side is not as illuminated as yours so it will take me longer to see it.  Please just bear with me and hand me a flashlight. 

 5.   You take the good with the bad.

Yeah yeah yeah….you take them both and there you have…the facts of life.  Here’s a fact of life….Spoonies have a lot of bad.  A LOT of bad.  Because we have so much bad, we appreciate the good more than you could possibly imagine.  We are so stinkin’ happy when we get good that we want to put a picture frame around it and hang it above the mantle.  By the way, speaking of Facts of Life, who here doesn’t think that Jo should have hauled off and smacked the bleach out of Blair’s hair at least once during the series.  Girlfriend had it comin’.

 4.   Don’t feel sorry for yourself.  When life hands you lemons, make lemonade.

Nine times out of ten, I’m wearing my Super Spoonie cape in front of you.  But here’s a little secret I’m going let you in on…I’m going to have ‘poor me’ days. The only difference is that I don’t let you see them.  I don’t let anyone see them.  I’m tired of making lemonade, I’ve made lemonade for 10 years and after a while, no matter how much sugar you put in it…it’s still just bitter lemons.  I want something else. I’ve decided that life is just a bad guest bringing the wrong fruit to the party.  Why can’t life hand me grapes?  At least I could ferment them and make wine. 

 3.   What does not kill us makes us stronger

Good point.  There must be a reason that I’m still alive and kicking although Lupus is a strange bird like that…we never know how much time we have left.  I may die tomorrow, but then again I could outlive most of my friends.  With autoimmune disorders, every day is a roll of the dice. But if Lupus not killing me makes me stronger, I will say that every time it tries to take me out, I genetically mutate and come back with more badassery than the robot from The Terminator.  I may be so strong someday that I will seriously considering throwing my name in the ring for the next UFC smack down. 

 2.   You can beat this disease…you just have to want it bad enough.

For real?  All I have to do is want something and I can make it happen?  Why hasn’t someone told me this earlier?  *squeezes eyes shut* I reaaaaally want a million dollars, a Lexus and a live-in cleaning fairy!  *opens eyes*  Ok, none of those things happened and trust me, I wanted them BAD.  Know what else I want bad?  A day without pills…a summer where I can wear shorts because my legs aren’t scarred and bruised….to go to the pool with my kids and not have to worry about the sunlight throwing me into a flare or the heat making my joints swell up so much I can’t hold a water bottle.  My grandma used to say “Baby girl, wish in one hand, crap in the other….and see which one fills up faster.”  My grandma was an amazing lady…had the mouth of a sailor too, so I cleaned up Grandma’s words of wisdom for a PG audience.  I get much of my sass from her…too bad I didn’t get her cooking skills.

 1.   Everything happens for a reason

Ok….then explain the series finale of the Sopranos to me.  What was the reason for that ‘beat my head against the wall’ ending?  I mean really….did Tony get shot?  Why was Meadow weaving in and out of traffic like she was channeling Frogger?  Who was the guy in the Member’s Only jacket and more importantly is he, indeed, the last member?  Oh, what?  You meant having Lupus?  Sorry…I forgot that I was “chosen” to have it because of my always sunny disposition and obliviousness to sarcasm. Alright, don’t throw things at me…I know that no one is “chosen” to have an autoimmune disease…and I wouldn’t wish it on my worst enemy and maybe this phrase might be the most relevant of them all.  Maybe everything DOES happen for a reason.  Without my illness, I wouldn’t be here…writing this article….hoping that for just a moment I have made someone smile and forget that they don’t have the energy to get out of bed.  If I have truly impacted anyone in a positive way, then everything does happen for a reason.

Written by guest writer Stephanie Kennedy