If You Don't Say It, Neither Will I

Having an Invisible Illness, such as RSD is painful, stressful, depressing, enraging, and frustrating … and yet we manage to wear masks of smiles on our faces even though these are the feelings that are always paramount in our lives.  When we are finally able to muster enough strength and energy to venture out into the real world, we become forced to add “suffering at hands of the unaware, unknowing, un-understanding, un-attention-paying public” to that list.  Go to my Facebook page and look at my pictures!!  Do I look sick?  No, not always, because the days that do look sick, I don’t leave my hermetically sealed bubble so that no one sees what I have to go through.  It is really hard to feel all of this pain AND endure the pathetically sympathetic, or questioning glances from the rest of the world.  Please make yourselves aware of the contributing factors/WORDS that do add to our pain.  We know that you mean well (for the most part) but there are certain phrases that are worse than the sound of nails on a chalkboard … and, by the way, that sound increases our pain levels too.

So here we go.  This is a partial list of common phrases and questions to which we, the RSDers and RSD Caretakers, are subjected every time we, the RSDers, cross our own thresholds and embark on a journey outside of our own protective walls.  I am also supplying the responses that we could, quite possibly, use on the spewer.  RSDers, feel free to use my responses for yourselves, if you‘d like.  Normies, be conscious of your words, please.  Be supportive of us and our caregivers, because they don’t like having to answer these statements and questions either.  Being thoughtful of your words can save a lot of people a lot of heartache as well as physical and emotional pain.  (RSDers, feel free to change the words to better fit your situation.)  


~ but you don’t look sick ~ “…and when we first met, I didn’t think that you looked like a jerk!”

~ everybody gets tired ~ “Yes they do, but most ’everybody’ can sleep when they are tired.  I can’t.  Now BACK OFF!!”

~ you’re just having a bad day ~ “…and you just made it worse.  Thanks!!”

~ it must be nice to not having to go to work ~ “Tell you what, I’ll go to work for you today and you can deal with the pain that I’m feeling in my body.  It’ll only be for 8 hours or so.  I’m sure you can handle it.”

~ I wish I had time to take a nap ~ “I could hit you over the head with a 2x4 to oblige you.”

~ what do you have to be depressed about? ~ “Idiotic, sophomoric, inconsiderate people like you who still have full use of your bodies!”

~ if you’d just get out more… ~ “It takes me 2 days to rest my body and prepare for an outing, and then it takes 2-3 days for me to recover from that outing.  So … in 2 days I’ll be showing up at your door to open a can of Whoop A$$ just for you.  And I will willingly subject myself to the recovery time afterward!”

~ you can’t park in that handicap spot ~ “See that handicap placard hanging from my rearview mirror?  It says that I can.  Now please back up so that I can get my cane out of my car and slowly make my way into the store.  Have a nice day.”

~ you’re just getting older ~ “And you’re just getting to be a prick.”

~ if you’d just get more exercise… ~ “I would love to be able to exercise!  Will you go with me, carry me into the gym, and help me get from machine to machine?  And then will you take me to the Emergency Room as soon as we’re done ... and stay with me for 3 hours and watch while I get 9 inch needles stuck into my neck, back and groin area?”

~ it can’t be that bad ~ “You're right!  It’s not!  It’s worse!”

~ it’s all in your head ~ “…and our friendship is all in your head!  Buh Bye!”

~ you’re just depressed ~ “Great!  So when I beat you senseless with my cane, I can use the “insanity” defense.  Thanks!”

~ there are people worse off than you ~ “I’m sure there are … somewhere.”

~ you’ll just have to tough it out ~ “I would pay money to see you have to tough this out for just 1 day.  If you survive that day without going stark raving mad, I’ll pay up and shut up.  Until then, I‘ll just keep hangin' tough, 24/7, so that you don‘t have to see what it‘s really like.”

~ you just need a more positive attitude ~ “What, my <bleep>ing Pollyanna attitude isn’t <bleep>ing good enough for the likes of your sorry @$$?” ... or ... "After a statement like that, my positive attitude tells me to walk away and pretend I didn't hear you say that."

~ this, too, shall pass ~ “Really??  Since there’s no cure yet, when???”

~ you don’t seem like you’re in pain ~ “And the Academy Award for Best Impersonation of a Healthy Person goes to … … … ME!!”

~ …but you’re always happy and smiling ~ “Just because the sun is shining, is it always warm outside?”

~ can’t they just cut the nerve out that’s causing the pain? ~ “That would be great, wouldn’t it?  But then I wouldn’t have a single nerve left for you to jump on!”

~ you’ll grow out of it ~ “I didn’t realize that you graduated from Johns Hopkins.  That’s valedictorian speech material right there!”

~ I read about this new pill that cures RSD, it’s just not available in the States ~  “There is NO cure for RSD anywhere!  In fact, there are over 5 million sufferers worldwide and only 2 million of them are in the States.  So why haven’t the other 3+ million been cured yet?”

I have faith that someday the Normies of the world will realize that not all pains and afflictions are visible.  I have faith that RSDers and RSD Caretakers will stand up against these insolent, hurtful phrases and regain a certain amount of self-confidence and independence.  We are fighting the pain and the clock to raise awareness so that we need not feel the depreciation value of hurtful words that are meant with "good" intentions.  Spread Awareness PLEASE!!  We need it desperately!!