Inside the Mind of this Chronic Pain Sufferer


Update: Recently, a popular show on Netflix titled, Afflicted, seem to promise to shed some light on the stigma associated with chronic pain sufferers. While no one discounts that there is a mind-body connection to healing, many people are facing some very serious chronic health issues that extend far beyond this approach. Sadly, this show perpetuates the same old stigma that the pain is all in their heads, which has prompted a petition by many of its viewers to end the show. As upsetting as it is, I don’t believe censorship in America is the answer, but I can’t help but wonder if this might prompt the series producers to hear the voices of those in pain and reconsider how they are depicting those suffering. If you've seen it, please feel free to share your thoughts in the comments below. You are not alone. 

Chronic Pain is Real 

Patients experiencing chronic pain, fog and fatigue may have a conglomeration of symptoms that make it difficult to pinpoint one solid diagnosis (see Healing from Pain, Mental Fog and Fatigue). As a result, they are an enigma to physicians who don't see their patients getting better, and a frustration to family and friends who assume they're either being lazy, may be faking symptoms, or simply just depressed, because they appear normal on the outside (see Where did my Wife Go?). 


Although written stylistic different from my other posts, I wanted to write something through the eyes of my own past experiences when I was at the height not being able to function in day to day activities and did not know that I was a carrier of a genetic mutation that may have triggered these symptoms (See Are You a Mutant?)I wanted to give families living with chronic pain sufferers an inside look into the mind of someone experiencing this ailment. It was meant to give them a better understanding of what they go through every day and perhaps a dialogue can be created to help them along their journey to healing. All my best!
Jax

They don’t know…
And…what they don’t know won’t hurt them.
Even if it hurts me, all the time.
I almost sound like a broken record, a retro 80’s song.
You know the one, “Every I breath I take… every move I make…”
Only… every step I take, every move I make,
a searing pain, like that of hot poker, is stalking me.
It shoots up my heels and strangulates my calf muscles.
This pain, a torturing masochist.

They don’t know…
that behind every smile, I’m screaming on the inside,
wanting it to end.

They don’t know…
that behind every handshake,
rests fingers too stiff to curl, too afraid to straighten,
like the appendages of a decrepit, little old lady.

They don’t know…
that behind every memory, another one erases,
like hitting the delete button on highlighted text.
It disappears, into the abyss of cyberspace,
Never to be seen again.

They don’t know…
that behind every thought,
a fog drapes over my brain and darkens it like a thick blanket,
weighed down by blocks too heavy to lift.

pain. Pain. PAIN.
All I feel is PAIN!
don’t touch me. Don’t Touch Me. DON’T TOUCH ME.
It HURTS!!!

Quiet. Shh… stay quiet.
It does no good to complain.
I already know what happens when I speak.
I know the drill.
They hear, but they don’t listen.
What’s wrong with you? they ask.
You look just fine, they say.
It must be in your head.
But I know…

I feel. I wince. I struggle. I force myself out of bed every day.
A pep talk, always with a pep talk.
I picture myself:
The image of a soldier, caught in a battle that never ends, but I won’t quit.
Get up, marine. GET. UP.
Never give in. Never surrender, I say…
and then…
I limp and shuffle my way out of bed.
Each step more painful than the last.

Doctors? HA!
I’m tired of doctors.
A pill here, a pill there, just a visit to a legalized drug pusher.
I see their bosses: Merck, Johnson & Johnson, Pfizer…
all dressed in their freshly pressed little suits,
with their little rolling briefcases,
sitting in that waiting room next to me.

Their drugs have helped some, but why do they hurt ME?
A number. I’m just a number. I don’t fit inside their statistical, bell curve box.
So… doctors say I’m fine.
Nothing’s wrong, they say.
I wonder what they write in their little note pads,
with their scribbly, five-year-old handwriting?
Paranoid? Hypochondriac? Manic Depressive?
Just another label, but no answers.
But I know. I just. Know.
I’m none of those things, so I deal with it in silence.
Shut up. Smile. Nod.
Don’t waste your breath trying to explain.
Not to doctors. Not to family. Not to friends.
Conserve your energy. 
You need it.

It’s just pain, I say. Just. Pain.
I’m used to pain.
I’m used to staying quiet.
I’m used to people not believing.
Maybe that’s why I hurt?
I analyze myself like Freud.
Could this be pain,
pressure cooking on the inside,
waiting to explode on the outside?
 After all, how do you forget,
the cold, hard smack on skin...
How do you drown out,
the screams of a woman,
dragged by the root of her hair, 
haunting my dreams, still.
Sure. It didn’t happen that way. Um… Okay.
It was all in my head.
You may, Deny. Accept. Forget.
It doesn’t matter anymore.
If I survived you, I can survive this.
Don’t you fret.
I forgive you…
You had your own pain too,
but you’re toxic. I can’t be with you.
I hope you understand.

I’m strong now. 
I keep telling myself that.
They must never know…
that behind this wall of strength,
I fear. I cry. I hurt. Sometimes, I yell.
I will get better.
I will survive this shithole called LIFE.
Until then…
I smile. I nod. I don’t complain.
I wince in silence.
I cry in the darkness.
I scream alone and ask, why?

I carry pain.
Sometimes, it carries me.
It’s my nemesis, my nag, my frenemy.
Like a vengeful, oppressive ghost it haunts me.
However…
It will not vanquish me,

and I’ll be damned if I let it take me. 

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