Oh wow lookie there!
What a marvelous creature

If you look closely over there you'll be able to see it
a wild hidden disability!

Usually they are invisible to the untrained eye
But I, Stene Irwiv will show you how you can sometimes spot them!

Now all of them look different, but here are a few examples.

See that buddy over there? I've been watching over this lad for a while now
Notice how he walks slowly almost like a waddle?
He also stops to rest more often than the usual guy
He's not lazy! just sore.
Make sure to be careful and don't touch him unexpectedly!
See my friend here has Fibromyalgia, it causes widespread chronic pain.
It can also cause migraines, mood swings, and memory issues
but remember, since these symptoms are usually invisible on the surface
this disability is often overlooked or even called fake by strangers,
but also doctors! ******!

This next one is a doozy
my mate right here looks pretty average on first glance,
but if you look closer you might be able to spot what makes her so special.
This lovely lady right here has Ehlers Danlos Syndrome.
Because of the defect in her collagen,
her skin and ligaments are unusually stretchy.
if you were to touch her skin you might feel that it is very soft and fragile
and when she stands you might see her knees and other joints bend back farther that usual.
She's not just 'double jointed' though,
because of the stretchy ligaments, she and others with EDS are at risk of joint dislocations and chronic pain everyday!
EDS doesn't just cause pain though,
it can also increases a person's risk of ***** rupture or heart problems!
Double ******!

Remember though, these disabilities can't always be seen
so don't judge people prematurely.
You see, the person you think is lazy for sitting in the handicapped seats on the bus,
or maybe the person parked in a handicapped spot who appears to be fine,
or even just the people walking down the street,
any one of them might have an invisible disability.
but just because they are invisible, that doesn't mean they aren't real.
I hope you all enjoyed the show.
I'm Stene Irwiv, and this has been Chronic Illness Hunter.

Mama always said my body is a temple but if this is a temple then I never want to worship again
I was born into this temple with the foundation already cracked
The ceilings are caving in
The floor boards wail in pain even with the most gentle of steps
I reach for the handle of the front door to get out but the hinges crack and break leaving nothing but agony in my wake
the widow screen is ripped and the wires are sticking out
the glass is either in shards gripping to the windowsill or in a pile on the floor
I can’t get out of this **** temple but staying here is killing me
Temples are meant for praising God but I only want to curse him for trapping me here
I wish I could tear down this place buts its already doing a pretty good job of doing that on its own.
Let me out of this **** temple.

I wake up to an alarm set ten minutes before I need to get up because I never know how long it will take me to get out of bed.

My leg is asleep because at some point in the night my hip did the hokey pokey and turned itself around right out of its socket

But hey, my joint problems make me cool because like a transformer I bend and expand putting my joints back into their place.

See I'm like a cheap Halloween decoration,
Because my skeleton is falling apart at the seams
and if that's not bad enough, the only person it's scaring is me.

(Dedicated to my Father, who was totally paralyzed
for 7 years before he died.)

I awake in the early morning darkness
Frozen, motionless, immobilized.
My eyes straining to see into the black void
Looking for any sign of my keepers
Listening for any kind of movement
Phantom images dart around me slowly at first,
Then multiple images spring from every direction
My heart racing, my breathing rapid and shallow,
Byproducts of fear and imagination
Running amok in the dark

My eyes focus on tiny lights incessantly blinking,
Reassuring my heart as the phantoms vanish
My ears register the intermittent beeps
And steady, determined droning
Of contraptions that populate my space,
Their sole purpose to prevent the outcome I crave

My nose catches whiffs of iodoform odor,
Penetrating, pungent, overpowering my sense of smell.
A cruel replacement for what once was
A weekly parade of fragrant flowers
That excited what few senses remain
The brightly colored blossoms
The sweet, fragrant smells
The delightful sizes and shapes
But the beautiful flowers have withered,
As concern for my plight has waned

I watch as the determined, dynamic sun
Deliberately dilutes the darkness,
Revealing the magical birth of a new day.
Is that delightful birdsong I hear?
The beeping and droning are maddening,
But I know there’s birdsong outside my window
I can’t wait until the moment arrives!

As if on cue my keeper appears
Busily going about her assigned tasks
My eyes following her every move
“And how are you doing today?” she asks,
Staring at me as if I could answer.
But I lie frozen, motionless, immobilized
In my mind I replay my daily reply:

"My existence is a never-ending cycle of
Penetrating. . . pungent. . . whiffs
Beep. . . blink. . . drone. . . beep
Blink. . . drone. . . beep, . . . blink
Drone. . . beep. . . blink. . . drone
Penetrating. . . pungent. . . whiffs
Dawn. . . daylight. . . twilight. . . night
Daylight. . . twilight. . . night. . . dawn
Twilight. . . night. . . dawn. . . daylight
Night. . . dawn. . . daylight. . .twilight
Penetrating. . . pungent. . . whiffs
Each boring minute an hour.
Each hateful hour a day.
Each wretched day a year.
Each torturous year a lifetime.
Ad nauseum. . .ad infinitum. . .ad mortem?"

Offering no response to my unspoken thoughts,
My keeper dutifully takes my vital signs,
Temperature, pulse, respiration, blood pressure,
Records the results, then walks to the window
My favorite time of day has arrived!
“We must open the window to freshen up your room.”
As the window opens my spirit soars, and my ears capture
The lovely birdsong, as well as other living sounds,
Along with a veritable potpourri of smells.
I can only imagine what is happening outside,
And I do imagine it as best I can

I close my eyes and try to make out each note,
Visualizing the source of each incredible sound,
Be it bird, animal, human, or otherwise
Who they are, what they look like,
What they’re doing, what they’re thinking,
The blinking, beeping, droning is finally drowned out!
With every breath, I savor each smell
And, with eyes closed, as I visualize
What’s happening in my mind’s eye,
A wonderful peace envelops me. . . comforts me

But, alas, this day will be crueler than most
Another keeper, a newer keeper, enters my room
“Oh, she’s fallen asleep” he whispers,
He closes the window, shuts the shades,
Then quietly leaves, shutting the door
I SCREAM A LOUD, LONG, PRIMAL SCREAM!
... in my mind
As I lie frozen, motionless, immobilized—   
Paralyzed

I say get in the way of that preachers.
Saying ******’s a sin and justifyn’ ****** with fables.
If god’s love (and god’s love), homophobia is sin, turn those tables.

And then abortion’s a sin but there are some expections.
It goes something like “all of life’s sacred but not life of a *******”.
Yeah, dumb joke, but it hurts, it don’t tickle.

But I still pray to saints for love and unity and friendship.
As a goliard in cell I follow Lord while damning all the priestlings.
This is ******* reggae not sounding soft beneath C.I.S. city sellings.

Special is the word they use when they talk about me

They assume that my diagnosis fully defines me

Sometimes I wish I could only be heard and not seen

That’s what I often think about when I daydream

Chronic illness isn’t
Some beautiful
Pale
Girl sitting under a tree,
Book in hand.
It’s no romantic tragedy
Or heartfelt tear-jerker
It’s
Sitting on the floor of your bedroom
2 am
Trying not to cry because
You wanted to be in bed three hours ago
Your body didn’t.
It’s
Obsessively tracking every
Food and drink
Symptom and medication
It’s
Juggling four doctors and work
All at once
It’s
Trying not to *****
Struggling to stand
Fighting
To exist