How to Treat a Chronically Sick Person

I have a chronic illness. There are good times and bad times. My normal living cycle goes like this –

  1. Beginnings – Alone with nothing because that’s how everyone starts out!
  2. (few weeks if lucky-) Go out! Make friends! Meet contacts! Start work project!
  3. (few months-) get sick
  4. lose friends, lose contacts, work project fails/ends
  5. Start again from nothing
  6. Repeat at least twice a year for 10 years and counting

In there is a cycle of a crippling feeling of loss and its mourning and recovery period, as well as physical pain, loneliness and PTSD, as well as watching your loved ones suffer and experience your pain alongside you, in case we needed some oil and vinegar on that shit salad.

Chances are, if you meet me, my life will be a mess. I will be a mess.

Trouble is, when people see something messy, they get a prissy little urge to tidy it up. You start to get the ‘helpful’ advice – get a daily routine. focus on the positive. it’s going to be okay. join a club. go out make some friends. go for a walk. get out more. talk to someone… Finally! Decades of incurable illness fixed by a few facile words!

Here’s a take away lesson – Don’t tell me to get a daily routine. Don’t tell me to focus on the positive. Don’t tell me it’s going to be okay.  Don’t tell me to join a club. Don’t tell me to make some friends. Don’t tell me to go for a walk. Don’t tell me to get out more. As for that last one, well I’m talking to you aren’t I? Don’t tell grandma how to suck grandad’s fucking balls.

A better idea of how to ‘treat’ a chronically sick person –

recognise and admire the rare immutable human strength and against the odds perseverance

of someone who faces immovable, crippling obstacles each time they draw breath. the same things that would break most people into tiny pieces in week.

The best, most comforting, empathetic and truly loving thing I’ve had said to me about my illness is this –

‘jesus, I don’t know how you do it Sarah.’

Chronic health Condition not self sabotage

I went to see someone about my chronic health condition

She was great

but she mistakenly mentioned that there was self sabotage at work

I want you to imagine she was saying that

To someone with a tumour

That’s it. There we go. Now you understand.

Lesson – *Don’t try and tell someone their physical health problem is in their head*

Love the Medication they Gave me For it

i don’t know what i want to say. i guess i want to say

maybe to people who think i am a normal person with a normal life. that actually I’m a disabled person. i mean i don’t need a wheelchair, but my body doesn’t work. i guess it’s been going on so long and i didn’t tell people about it to start off with. i don’t know what i want from this message…i am on disability benefits, Well, I’m trying to get on them. they won’t believe me. I’m sad, I’m brave. I dunno. I guess if i were gay this would be like coming out. As disabled. Who ever thought of that! I guess I want people to think about a completely different version of life – i live that version. It’s as if I’m staring up through a glass and walking around you guys like a zoo

It’s not something you can imagine. It’s like trying to imagine what it’s like to be in a tribe and you’ve never seen a mirror. I don’t know what normal is. To go around and be 9-5. My body doesn’t want me to be normal like other people, it wants me to be something different. So there i am. Something else. I don’t even know what or how long I’ll be like this. Or why I’m like this. Or how or even if I should try and adjust to one of your normal lifestyles. Because my body doesn’t like it. And if you have questions about me well I will ask them right back at you, because I don’t know either. Some people get this stuff every day. questions. Too many questions.

But I guess it’s just another version of life that I want you to consider. There are people among you who live different versions of reality, no less or more. It’s the way their bodies grew and the places their bodies grew. Some people get this stuff every day.

(i wrote this when i was on the medication they give me. i don’t take it often as it doesn’t do anything and it makes me trip out. the trip was fun though and produced this beautiful essay)


I despise

the life

I am forced

to Live

The people

I am Forced

to Live

it with

And the body

I am forced

to Live in.

It’s a prison.

And I admit it

It’s true

I desperately

Want to escape

And have scratched several ingenious plans onto my cell walls

I guess I’m going

To Hell For Some of Them.

(this is a reflection on being chronically sick for 10 years and counting)


i always keep on smiling
though i don’t know what for
if I’m nailed up on the ceiling
or curled up on the floor

i tried use the handle
but this big old door is locked
there were people on the other side
but they’ve gone away and stopped

don’t give me holy holies
or ‘be good because one day’’s
i know it’s temporary
and all this will go away

but ill always have the memory
of 4000 burned up nights
of people staring at me
wondering if my head is right

if i ever mentioned to you
i was happy then I LIED
so ill have another biscuit
while i await the other side

and even when I’m better
and i wake up and i smile
it’ll never be enough
no where near. not for miles

because I’ll always have the darkness
of 4000 rotted days
of people staring at me
and forgetting all their names

of the wrinkles starting about these eyes
and all the pent up screams
and though you smile and me and love me
you can’t tell me what it means

but now I’m waiting for the knock
on the ever present door
when they burst in, they won’t explain
what this was bloody for

you’ll see blood and hopes and body parts
behind this fucking door

but she’ll always keep on smiling
though she doesn’t know what for

(that was about being chronically sick for 10 years and counting)


I don’t hang out with you no more
Your words were too much
For my little ears
They echo of
Bad eyes
In dark caves

I don’t want to speak with you no more
I’m done with working my way
Through broken pieces
You are spilt milk
And frozen smiles
And bad melodies
To me

I don’t want to hang out with you no more
I’ve grown
And squeezing back in by your side
Would only hurt me now
I don’t want to speak with you no more


(This is about being chronically sick for 10 years and counting)

I’m sorry i didn’t mean to want to
but things happen sometimes
and i ended up like this

don’t look at me with tears in your eyes
i know its contagious and i make you want to die
but crying for me won’t bring me back to life

i never wanted to think it
so don’t be mad,
but here we are
and even if I go
I’ll always be your star

The Dolphins in the Fridge

I meditated the shit out of you
But i guess the message didnt get through
All my chakras are turning blue
I don’t know what that means
But I’m eating more tofu

I’m going vegan
Apart from steak
I’m eating more kale now
And all my cheese is fake

Incense gives me a headache
But I composted all my old sticks
I live in a yurt now
I’m done with bricks

I finally got the Lotus
But then I got stuck
All this yoga’s so much work
When all I need’s a ****

I meditated the shit out of you
But i guess the message didnt get through
All my chakras are turning blue
I don’t know what that means
But I’m eating more tofu
I hope I impress you!

(half lyrics, half poem, half serious)

en francais

desolee mais je ne peut tenir pas ma promesse

je dois faire mon vie et c’est ne pas ici

avec tu

je passe le soleil a mon amie

c’est ne pas une problème

mais je ne jamais l’aime


avec tu

tu ne voir moi

tu voir un dessin que ta esprit as rêvé

gardes mes lèvres

un rêve est mal si elle ne vit pas

et je ne vivre pas

avec tu

personne ne sait

qu’il comme la mort

tous lest jours ici

avec tu

il est mon cauchemar

a mourir dans vos bras


je me réduire

et je deperir

et je me suis perdu

desolee mais je ne peut tenir pas ma promesse

je dois mon vie et c’est ne pas ici

avec tu

(This is about being chronically sick for 10 years and counting, and disliking the people I am forced to live life with. It’s probably a terrible thing to feel, so I wrote it in French.)


Let me step into my Dawn
I want to see the sun
I want to feel the air on my face
And life spread on open plains with
hearts beating
Like stampedes

Let me step into my Dawn
Let me sing freedom

Let me step into my Dawn
Take my hand and send me,
Surefooted and gasping,
With love
On my way
into Life

And with joy in my heart
I will wait for you there

A Shitty Superhero

i can write about
useless boys and
and tears and loneliness and the dark
those are fun
and stupid
and beautiful
in comparison

but knowing
for a heartbeat
what it’s like
to want to leave the party

to sweet talk at
eyes that will never see

and start nobly
once more
from hard beginnings

it took me ten years to get this low
‘i couldn’t do what you do’
but still, here i am

doing it


You were a sad
drag-a-long sack
You didn’t want to give anything back

Or put action to words
Live, or understand
Just sit on your arse
With your dick in your hand.

You thought about flowers
and sunsets and me
but that was like getting up to switch off the tv…

Wish this was less empty
More love and less cruel
But I work with the facts
there’s not a lot I can do

It’s funny how different two people can be
And still think they’re the same…
You’re a joke!
But the punchline is me

We’re Not Cool

I am far too kind
And you are far too cruel
But my saying so won’t help so
Whatever, we’re cool

I think you’re sad and base and crap
And a waste of fucking space and that
But my telling you won’t help so
Whatever, we’re cool

I think you are infinitely pathetic and sad
It’s your fucking fault we had what we never had
But my telling you won’t help so
Whatever, we’re cool

Id love to know what’s in your head
Why I never made it past your bed
But my knowing won’t help so
Whatever, we’re cool

I want the truth and what you feel
About me and if it was lies or real
But it won’t help so
Whatever, we’re cool

And if i shout and give you hell
You’d deserve it, but I’d hurt as well
It won’t help so
Whatever, it’s cool

I refuse to launch a full attack
It won’t give you a conscience or get you back
It won’t help so
Whatever, it’s cool

That’s that
That’s me
And that’s you

Not Un-Kind

i want to bite your fingers off
and push you off a cliff

but thank you for looking after me

i want you to leave forever and never return
i want another home

but thank you for looking after me

i spat at you
and you know you deserved it

but thank you for looking after me

you’re blind and dumb and vacant
you tied my hands

but thank you for looking after me

you are a black out at my window
if i had legs i’d run away
and I will.

but thank you for looking after me

Lost Dog

he’s walled himself in now
from the cold
pulled hard blankets about him
he’s grown long teeth
and eyes that flash

he is growing calloused
from hard things
and heavy weights
and he’s getting dirty from the machine noise

he’s short tempered and cruel
and waiting for soft beds and soft voices
he loved, and life broke its promises

he’s growing deaf
to melodies and sweetness
shouts in the night.
savage and scared
wide eyed, left in a shoebox
he’s started to bite every hand

he’s forgotten to go dreaming
he wonders, he must have been mistaken
it was an imaginary toy – it was such a long time ago
the warm glow of home
and soft steadfast arms
soft beds, soft voices
and her

music was just the shock bang of dustbin lids

i’ve lost him now
in black mac empty streets and spitting strangers
stone cold
and at home
he is small now and faceless
and when he looks, he is ugly

he’s starting to doubt that the sun will come out in the morning
and i can only wait

i wish that i could make him see

I Can be Very Strict

Sadness is
Something that
You will never own
Your days with me will stay

I will bake you all the biscuits in the world
And tie each one up in paper
And give one to you with tea

I will breathe when you stop
And I will speak when you
Have no voice

I will kiss your broken fingers when you
Claw at the walls
And give you honey
When you’ve screamed yourself hoarse

And when you think you have forgotten
I will remember
And when you think you are lost
I will know
I will be your mirror
And show you to yourself

Sadness is
Something that
You will never own
I won’t hear of it
So don’t you dare.


i want to stay up late with you
with the music turned louder than our breathing
and wake heavy-lidded with dripping sheets

ill follow you home from work like a ghost
and put you to bed with your dreams in your arms

we don’t have to pretend
if you’ll give me your word that we will keep one another
forever, for now
in tight clasped sweat and untouched secrets
told between chaste bodies

and sleep
and wake dark and heavy-lidded with dripping sheets


I want to breathe in deep until my lungs hurt
And blood bursts
I want to feel fingertips dig hard into me
And to turn you inside out with
Long hearted lust

I want you to crave
Move worlds unmoving
Long for twinkling lights and voices free in open spaces
And feel over each other and each moment in
Sweet finger-tipped fascination

Ignite heart lights and
Watch eyes shut
With taste and sound
And sweetness
And breathless and alive,
Forget that we will die.

The Collector

You netted me like a butterfly
Another specimen for your jar
Squinting squiff eyed at soft living colours
That transmute into wavelengths
All written in the same dull graphite grey
In the scruffy notebook
You keep in your head

Coming up for air
I gasped as I climbed out of your jar
A steel pin through my heart
Crumple winged from your
Innocent, gift-less fixation
A pattern. A type. A body.

Beneath your cool gaze
I forgot all of my warm beauty
You, a fascinated wide-eyed child
Pulling the wings off fairies

Life is…

life is ripping clothes from crazed bodies
lost buttons under
flatmate’s sofas
rushing up flights of stairs
and dinner going cold on the table

bare feet on filthy floors
fingerprints on communal walls
listening for the sounds of someone
coming in
half way through

it’s leaving the papers unread
and lines drawn all stuttering
and flowers picked so they can wilt
on your desk

it’s jumping and falling and bruises
and you
should have kissed me