EDIT: I am going to post this on my main account too because #bravery 😬
On my main account, I post pictures of the fun things happening in my life, nights out with friends, the accomplishments, success.
I don’t know how to balance honesty and attention. I don’t want attention, I want witness. I want to give voice to the endless symptoms / appointments / pain / isolation.
There are spaces within illness that we don’t want to show off. The nights before the mornings where we pick ourselves back up. The spaces where we don’t know how we will keep going (before the moments when we do). It’s not as easy as darkness pulling out light or whatever. It’s the cold, hard, honest truth that sometimes, you do want to give up. I am not suicidal. I want to live with every bit of me. And, there are days when that seems truly and utterly impossible.
Here is the space before the world opens again. This is the closed door, the lights off, #mysickview of the ceiling.
I believe it will all open again.
Until then, I’ll be here.
Today #mysickview was making these healing cards. We cut up old books and magazines and made art out of whatever came to us. The body holds trauma (including medical trauma) on levels that we can’t access through verbal processing. Over and over I am reminding myself “my body does not lie.” Hope you are all finding ways to be fully with your body’s truth today, however hard or light that might be.
I am posting this in an attempt to raise awareness. I am sick. I didn’t sleep last night due to pain. I’m exhausted. I had to drop out of the grad program I adore. And most doctors don’t believe that it could be at all possible this is linked to Lyme. So few people believe me. So many say I’m making it up. #mysickview every day is the same walls, the same room. I’m scared & losing hope. I want things to be different in our medical system and this world in general. I usually end my posts on some kind of cheerful, hopeful not but I have none of that in me today. Just — if you’re here too, I’m with you. ♥️
it’s hard to not get bored & angry during days stuck in bed // it’s cold here & the flannel bunny sheets have returned // image: close-up on a bunny-patterned white flannel sheet, with a fuzzy white blanket lying on top of part of it
Spent the day in the hospital getting an MRI & now I am attempting to finish a paper by midnight. Anyone out there trying to do school AND illness at the same time? Is this possible? Hope you are all making it through. Swipe to see #mysickview
This is my person. Tonight, this is #mysickview . I don’t know how we do this without our people. Without community. Without partners & friends & family who listen as we tell them for the 100th time about things that hurt or are unfair. .
Im realizing this account won’t have any flashy photos or fancy photography. Just this, I guess. Soft gentle moments of gratitude along with all of the fear & frustration & patience & pain that comes with having a chronic illness or disability or illness. Reminding ourselves that somedays there can be both. .
What about you? Who is your person? I’d love to hear about who keeps you held & here. Feel free to tag them or comment or DM. .
The goal here is to try & create community — however small or big that might be, just hoping to create space for people to feel less alone.
this is #mysickview while I try to work up the energy...to get up and take my meds so I can go to bed, lol 😂 // image: various pieces of art on a white wall, including a framed printout of a piece depicting 2 disco rabbits by @ilyachichkan
This is currently #mysickview while I spend 300 hours on the phone with insurance & doctors & nurses trying to get the procedure I REALLY need covered & scheduled soon so that I can figure out if I’m able to stay in graduate school or if I have to drop out. It’s exhausting to be sick.
Anyone else have stories like this?
Image: crossed legs with feet on a chair, blue keds on feet and blurred background
this is my ceiling. I’ve spent a lot of time in bed lately. I’ve been looking up at this ceiling and thinking how this account could function as more than raising awareness for disability and chronic illness - it could ideally be a space where sick/disabled/spoonie folks could share a photo of their day & feel solidarity with others. Maybe a way we could hold each other up from our separate spaces, our separate “sick views.” If you’re out there & this resonates, please comment or follow. We’d love to hear your thoughts. // image: a slanted ceiling with a series of posters and pictures hanging on it
my sick view is a project for chronically ill people to share the views we’re taking in // image: a silver remote control on a bare mattress with a flowery pillow in the background // want to join in? use the hashtag #mysickview and we’ll find you