The story of Karen
The Invisible Me
“You look great for one so sick” or at least it’s what they say.
“Why do you complain you don’t have to work” I hear it every day.
Whether out of their mouths, or in my head…
These words do torment; these words I dread.
You see, it’s the invisible me.
The invisible me, the one inside…
You can’t see her, she tends to hide.
Hides in a place where critics don’t dwell,
Deep in her thoughts, she knows them well.
How did I get here? Why me? Why now?
Why can’t they help this? Why don’t they know how?
The invisible me, the one inside…
She’s living with fear of what may come.
As her body turns more against itself…
No mind the meds, no mind the help.
See help is what likely is driving all this.
Help is what comes of making a wish.
Please stop the allergies, please stop the pain.
Please stop their doubting; am I going insane?
Rare diseases are not popular, but they are real.
Don’t believe me; just ask how I feel…
Tired, exhausted in fact, but never mind me and never mind that.
My everything hurts I often say.
“But why?” you ask – “You did nothing today.”
The invisible me, the one deep inside…
Fights back the tears she’s wanting to cry.
“You aren’t working, getting paid all the same.”
“Wow, I want in on that Social Security game.”
Rare Disease Family, you know who you are…
How do you find strength when it seems all is lost?
Don’t wallow too long friends, you know what comes next…
She’s sad and she’s emotional, she must be depressed!
God, why can’t they accept what they don’t see?
Why can’t they see, they’re not accepting me as me?
I’m not broken, or weak, or crippled or old.
I’m not faking or making the flu of a cold!
It’s not easy having a rare disease.
A single genetic mutation too, if you please!
I’d stop it if I could, that you must know.
It’s not fair to assume, to just assume you all know!
You eat what you like, you do as you please.
You don’t get itchy, rashy, tingly or wheeze!
You don’t get stiff, red joints all swollen that ache.
Your insides don’t churn out with just one bite of cake!
You can pit-stop your meals; you can spur of the moment.
You grab drinks with your friends; you order out if you want.
You’re not the Meg Ryan at every diner or restaurant…
But me, the invisible me, she hates the attention, she hates the fuss.
Think what you may, do what you must.
I’m a planner, a prepper, a preparer of sorts…
I pack my own food, meds, Epi-pens and spare shorts!
I remember what it’s like to eat pizza, drink wine.
I once knew what it’s like to feel fantastic, even fine.
Closing my eyes, I can even recall…
What it’s like to work out, run or play ball!
Don’t you think I want that again?
Don’t you think that, I pray?
Don’t you think I would quit all my meds; send my docs away?
Why do you choose to grill me? As if I don’t understand…
Why do you blast and question me?
Can’t you see; it’s not in my hands?
I read and I study, I seek and I find…
I’m looking for answers of a far more natural kind.
I’m done with Big Pharma, I’m done with them all!
I just want my life back, I just want it all!
For the sake of my children; my dear family…
For their sake, not mine… Could you just see the invisible me?
Just once take notice of the woman inside,
The one doing her best to conceal and to hide.
Rare Diseases are not made up for the hypochondriac.
They are real, they are strong and for this we have to fight back!
So the next time you think you know what’s really going on,
Just remember it takes more for us to be strong…
We’re living our lives in hopes of a cure, without the pink ribbons.
Without walks, marches or marathons…
Without celebrity faces or jazzy telethons.
“It’s not cancer so it’s no big deal.”
I’ve heard it all, it’s just that real.
The meds I’m on tear my body down, every cell, bit by bit.
It’s chemo in me, “But it’s such a small dose…”
Lord, why can’t they see?!
Poison is poison my friends, no matter the host.
I don’t want this poison in my body at all.
I don’t want it killing my cells as I fall…
More tired and frustrated, foggy each day.
I have a life to live and not this way!
See me, dear ones, see the invisible me…
The one who pushes through, pushes on to just be.
See me, my loves, for all that I am.
For I am Rare…
This is undeniably true.
And I yearn for compassion, compassion from you.
So the next time you see me and you don’t understand…
Just give me a hug, or just take my hand.
No words are needed, no words at all.
For my heart can hear you, whenever you call.
Just be here my loves, be here and see…
This invisible girl, the invisible me.
~Karen DiBrango
#mastcellactivationdisorder #cd8alphaMutation
RARE DISEASES ARE REAL
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