Ashley Jane describes Life with Lupus through Poetry

In a previous post, I began a series of articles that will feature the work of poets with chronic illness. The first piece featured poems by Rina Bloom that raise awareness about what it is like to live with lupus.

 

I want to spotlight another great writer named Ashley Jane who, like Rina, lives with lupus. I interviewed her about her experience with lupus, and she shared how it has impacted both her personal life and her poetry. She was gracious enough to share her story with me so that we can share it with all of you.

 

Ashley Jane: “I was diagnosed with lupus at age 14. Since then, there have been numerous additions to the list of ailments, but I think I will always be defined by the lupus. It changed me, and I suppose that’s to be expected. I was young, super social, and then all of a sudden I couldn’t be anymore. And so many times, I was told it wasn’t as bad as I made it. Or that I could just will myself better. I can’t tell you how many times I’ve just pretended to feel okay so as not to bother anyone.”

 

I know that Ashley is not alone in how lupus has made her feel, both physically and emotionally. She was so truthful about her struggles, including the struggle of explaining to other people what it’s like to live with lupus. My heart hurts for anyone who has battled an illness and been told by someone on the outside that it isn’t as bad as they’re making it seem. That has to be such an isolating and invalidating experience. I know others like Ashley who have told me that they often pretend that they’re fine because they didn’t want to burden other people with how they’re really feeling. 

 

People often don’t understand what they’re not experiencing themselves or what they can’t see with their own eyes. Chronic illnesses are often invisible to others, and it can be so easy for people experiencing illness to be made to feel invisible too. 

 

Poets like Ashley are giving readers a glimpse into what everyday life is like for people with chronic illnesses. There is so much hope and sincerity in this poem by Ashley, and it helps us remember to truly see the people around us: in their pain, in their suffering, in their humanity. I loved this piece, and I hope that you will too. 

 

AJ: “This piece is inspired by the daily struggle that comes with any kind of illness. Over the years, I’ve had good days and bad. Sometimes, I can almost forget that any issue exists. But, most days, the pain reminds me. It’s hard to stay positive when you hurt. It’s hard to stay hopeful when you’re depressed. I count myself lucky to have a supportive family and friends who understand. They help raise me up on days I cannot raise myself. They become my spoons, and there is a beautiful love to be found in that.”

 

“night comes calling

long before sleep ever does

and i know that even if i manage

to tumble into dreams

i will wake with an ache

still living in my bones

the sunlight shimmers

between the slits of closed blinds

and the birds chirp an alarm

they do not know

that there is no one to rise and shine

 

i push myself to move,

to follow the same routine

and hope that my body cooperates today,

that it doesn’t protest

every footstep

and scream with every breath,

that today will be good

and i will not run out of spoons

before lunch is over 

again

 

i still hear their voices in my head

telling me 

i’m lazy

i’m useless

i’m faking it

i’m expendable,

all the things

that make the panic set in,

all the words

that know exactly how to hurt

this disease may be invisible,

but i try to remind myself

that i’m not

 

i move through the motions,

smile and nod my way

through the grocery store,

wait patiently

in another doctor’s office,

hide the pain from my mother

when she asks how i feel today

“i’m fine, doing great, just working”

she always knows i’m lying,

but it’s just easier to pretend

 

i ran out of spoons before lunch again,

but i’m still holding out hope

for tomorrow”