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Sometimes
I burn a little inside,
The pain
It strikes me, dives right into my core
I smile a little shakily
Talk a little less
So that others don't fear my sadness, offer sympathy on a platter

Sometimes
I need 8 coffee's
Just to start my day
I can't get up with a spring in my step or just pass the time away
My shoulders are tight
My limbs are heavy
I just want to get on with my day

Sometimes
I try with all my might
Still fragile
With a flicker of hope to make it through today
Vellichor Mar 23
You wanted a battle
So I gave you a war
I fought with such force
That it rattled my core

You thought it’d be easy
But I proved to be strong
You thought I’d surrender
But oh you were wrong

You swung with your sword
So I learned to wield mine
You told me I’d crumble
But I held my front line

Each day drawing my sword
Just to fight for a breath
You held nothing back
So we fought to the death



I wish it was over
I wish that you’d died
I tell them I won
But we both know I lied

Because you can’t die
Until I die too
The truth hurts to swallow
But pain’s nothing new

My sword briefly falters
You mock my despair
But one thing’s the same
And you seem unaware

I’ll fight till my death
But when all’s said and done
I won’t die for you
This war’s just begun
Sydney V Jan 31
Living,  
with chronic
pain,
is like sharing a space  
with a younger version  
of myself.  
At night,  
I let her  
come into my room,  
she is slow, delicate  
like a child sneaking
into bed.  
Her nature
knows, no
childish mischief
like that of a child  
up past bedtime.  
She knows–  
all the corners
of my tired mind
where my nerves  
sag like telephone wires.  
She knows–
where to lay
an icy touch
and play  
in the realms  
of my life, before  
we met
and,
she knows–  
how to go
to bed, at night
and wake with me
in the morning.
I am still here, in pain, but still here.
Kat Feb 1
She says, I’m sorry.

She says, I never asked for this -
What have I done wrong?

She says, is anybody out there?
I want help
But sometimes it feels  
Like no one knows my name.

She says, I am broken.
Please, can somebody show me
How to fix me?

She says, they can take my body
And my hope and my heart,
But they can never take my words.

She says, I want to break my body
Until my skin runs red and my bones bleed black  
And I no longer feel the pain.

She says, sometimes I stand for hours in my shower
And wish it were a tsunami
That would swallow me whole.

She says, give me a reason to live
And laugh and love and I will not daydream of lying
A cold corpse in the frozen ground.

She says, I want to live and I want to die
Cause this world is too hard, too broken, too cracked
At the seams,
And  sometimes I think life is just a ruse,
And we are all puppets in the end.

She says, can you be an idealist and a pessimist?
Cause sometimes I think
I am both - I strive for what cannot be
And I scorn what can.

She says, is anybody out there?
I need help,
But to them I am a ghost.

She says, I never wanted this
And I don’t know how
To change it.

She says, I’m sorry.
Just to clarify - I don’t mean for this poem to come across as saying people should apologize for dealing with mental illness or pain, which is definitely not true. I just wanted to provide insight into how someone dealing with these things might be thinking.
Peter Hark Jan 7
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.
When I park in a disabled spot or go out in public wearing my braces, I feel like people look at me as if I'm a strange exotic creature. My lovely inspiration for this poem came from when I was watching old Steve Irwin documentaries while I was stuck in bed on a bad flare day.
I am weak
And wobble as I stand
Like a baby bird
A phoenix, perhaps
Rising from the ashes
With a bit too much smoke
Left in its lungs.

The old husk
That shell built over many days
Of spring and rocks,
Gentle grass and balmy river
When it forgot it’s name was phoenix
Has been torn off
Too soon, like a scab
And the new skin underneath
Is tender in its infant stage
Under thin and ashy feathers.

Yes, it lives
Yes, it is rising

But one cannot go
From flames to flight
In an instant.

Let it instead be overnight
And let you, sweet bird
Rest
In the meanwhile.
I had a really bad reaction to something I ate a couple weeks ago. tried to capture some of the pain and weariness I was feeling afterwards in this piece. i long sometimes for a world where I'm not always on edge waiting for the next mistake that will leave me debillitatingly ill for hours
Kat Dec 2019
I thought I had my life
Planned out;
But as my friend once told me,
“Life rarely goes as planned.”
See,
I used to be healthy,
But now I am not.
I used to go to university,
And now I go to doctor’s appointments.
I used to look forward to the future,
And now I often dread it.

A year ago,
I wrote a poem called “The Uncertainty of Not Knowing”
About my unexplained health symptoms,
And I guess I am more certain now
Than I was before —
After hundreds of doctor’s appointments
And three hospitalizations
And countless phone calls to insurance,
I have found a name for the conditions I have.
And I enjoy having diagnoses -
Enjoy having a name
For the pain, the fear, the isolation,
For the lack of my life as it was before.

But with these labels comes also the fear of uncertainty
That continues to plague me every day —
The uncertainty of not knowing
When and how and if
I will get better;
Of not knowing  
How I will manage school or a career;
Of not knowing
If I will develop more symptoms,
More illnesses
More pain;
Of not knowing
If I will know how to proceed
If I do;
The list goes on and on.

And the worst part is,
It’s so **ing hard to talk about it;
I don’t know anyone with my health conditions;
Don’t know how to convey
My fear, my frustration, my isolation, my regret  
To my acquaintances, my family, my friends.
I read narratives of people going through similar things,
But many are far older and far sicker
Than I am, and when I see their stories
I fear for what I might experience in the future.
My friends post about their sports injuries
On social media,
And I think it’s great -
Great that they feel comfortable
Sharing the parts of their lives
That are not just food and fun times with family
And travels around the world;
Great that they can get support
And inspiration from others.
But I do not post about my illnesses
Because I do not feel comfortable telling the people
Who knew me when I was completely healthy
How I have changed;
Worry that future employers
Will discriminate against someone
With conditions that may never be fully cured;
Do not want to be “the sick girl,”
The girl with mental illness,
The girl with chronic pain;
Do not want my illnesses or my disabilities to define me,
Even though sometimes I feel defined by them.

Life with multiple chronic conditions
Is hard.
But I know I am strong,
And I need to keep fighting -
To keep self-advocating
When doctors tell me different things
Or minimize my pain;
To reach out
Even if people might not truly understand,
And continue to find a community
Of those who do;
To search for answers in appointments
And comfort in company
And purpose in pain -
Purpose that drives me
To help others
Going through the same thing.

There is so much uncertainty
In my life,
But part of life
Is to exist in a state of not knowing.
And I must take solace in the realization
That however hard it gets,
I am not just “the sick girl.”
I am not the sum of my suffering.
I am not locked into a life of pain.
I am not living a life without purpose.
And I am not going to give up.
Dealing with  unexplained symptoms and multiple physical and mental health conditions is rough, but I am very lucky to have a great support system of family and friends, and to live near excellent medical care. If you are going though something similar, I feel for you and wish you all the best.
Kit Scott Nov 2019
you are the end and beginning of everything, did you know that?

shouting and whispering in turn after turn with bullets clenched between your teeth misfiring at will and never knowing how to draw the muzzle back, how to flick the safety on only screaming over and over that

       i am here!

so bitter and angry and with frustration crawling up your spine and making your neck crack, weighing down on your back til you can't walk and every step is a defiance of nature you are everything when every morning you perform a feat of necromantic proportions raising the dead with your waking you snap and snarl and spit whenever anyone tells you

       it's impossible

you creature made of everything you hate, breathing air back into collapsed lungs and bolstering shattered ribs with spite you cannot quite decide whether you are alive or dead or which you want to be you forget how to breathe between breaths and they call you lazy when you are lifting mountains on your shoulders and working miracles with every step you zombie living dead or dying alive turning every bone shard into a weapon and biting down on every complaint til they all burst out at once you

        monster

running on nothing but will you stitch yourself into one thousand and one different forms changing shape like it's the new thing trying so hard to be everything in a body falling apart you add part after part wing and tail and feather but you are rotting from the inside out

     if you replace every board of a ship, is it still the same ship?

turning yourself into one thousand and one different things to try to get away from the very fact that

     your body is not your own, is it?

what a tragic creature, what a tragic thing, so awful that it can't recognise it's own desperation, yet so self pitying, convincing itself it's still the same after being so little the creature it was before, after ripping itself apart to try and find the answer, it's made of everything but itself, it longs for identity

      you snap at everyone who tries to help you, don't you?
      poor thing, do you even know how pitiful you've become

yet, yet! you keep fighting, don't you, you vile never-should-have-been thing, dying from the inside out and still so determined. every day is a challenge, every day is a miracle; you wonderous monstrosity, you beautiful freak, rolling down hills instead of walking

     and you'll keep going, won't you?

                                                          ­  won't you?

.
I feel I should note that this is directed towards myself and is an extremely personal experience of CFS/ME (as all are, honestly) that interplays with my own emotional state and therefore is far more, ah, hateful? Rude? -than I would make it were I writing generally, especially as this is about a more general overview of my particular experience in 'I feel like ****' than just cfs; a mixed bag, basically.
TheRhymeRenegade Nov 2019
Some days it's going to hurt
Its going to feel like my body is a stiff, unforgiving cocoon
And my vibrant colors are trapped deep inside and aching
Some days my bed feels like a cage of comfort
Self soothing but at the cost of others
I **** on a pacifier at night sometimes
Dipped in honey
So I can just barely connect with my cousins
Maybe tomorrow I'll fly with them

Sometimes I get real sad
That I don't have hard edges, and defining lines
I have dimples and ripples
Covered in marks and scars and hair
Take refuge in a branch that appreciates me
Enveloped from the sun
Barely audible whispers through growing tangling veins
Saying I'm enough
But others think I haven't hatched yet
That I have work to do
A droplet catches
I'm sensitive

Sometimes I understand it deeply
as deep as I'm inside myself
Other days I fantasize about breaking out
Vibrantly, with elegance
But at the end of the day
Beauty, and what that means
Isn't exclusively me
or you
There's no right way
Or wrong
I'm not a project
Or an unfinished song
At the end of the day
Its every single piece

And when it comes to yours, someone sees
a poem about the frustration with my body, both with the chronic pain I experience with my disabilities, and my appearance
Misha Kroon Oct 2019
Body, forgive my anger.
I know this illness is woven in your foundations.
I know you know no different.
This useless shell I have been gifted is only genetics.
You try your best,
I understand.
I try to.
You do only as you know how,
This pain is the only tool you have to break.
I know this.
Forgive my frustration.
My existence has been wrought with this suffering.
I cope the only way I know how.
I am not angry at you,
How could I be,
You have carried me like a mother.
Understand this loose host of elastic joints is just temporary,
This unholy soul is just unsettled.
Body, forgive my anger,
I know you don't know what else to do.
I suffer with a connective tissue disorder called Hypermobility Syndrome. The chronic pain it has caused me over the years has often times been horrendous, and this time of year as the seasons change rapidly, it's frustrating to live in my own skin sometimes.
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