“#DisabledAnd” – SOFIA.

“#DISABLEDAND”

hello,

it’s sofia. if you haven’t come across me before, it’s nice to meet you. let’s get into what all this is about, yeah?

i am 20 years old. i have a chronic invisible illness: severe crohn’s disease, with complications of inflammatory arthritis in my hands, knees, & feet. it caused me to put a halt to my plan of becoming a professional violinist.

when i was first diagnosed at 17 (almost 18), i was incredibly ashamed of my illness, & did everything to hide it from people. i’d been experiencing symptoms for years, but hadn’t really said much – until things got bad enough to get me hospitalized.

now, at 20 years old, i am open & honest about my illness. i have used my pain to relate to others; i’ve started making “art” centered around my illness, the person it’s made me become, but also emphasizing my multi-dimensionality as a human being. my illness doesn’t make me one-dimensional, just as being healthy wouldn’t make me one-dimensional.

ever since i’ve had to stop playing violin, i have been writing more. i have been taking photographs of myself at vulnerable moments. i have been making videos, sharing my story & hoping that i’m able to be relatable to other chronically ill young people out there. i know they exist – i am one of hundreds of thousands.

i try to show my strengths as a chronically ill person. i don’t share my vulnerability as often. this is probably the most in-depth i have been to a “larger audience” – & i am incredibly grateful to myself, my friends, & my family for getting me to this point.

i’m also grateful for social media. it has helped me find people who go through similar things; it has helped me spread my message; it has helped me become more comfortable with sharing more, as i saw people responding in a positive manner chronic illness-centered to things i shared. it’s been incredibly validating & encouraging, & i am very grateful for that.

so – you’ve seen some positive videos & pieces that i’ve written. you’ve seen me smiling in hospital beds; now, i’m going to share a more painful, vulnerable moment

i have been nervous about sharing this, but i think it’s valuable – both to me, & to others experiencing similar things – to do this.

i don’t speak as well as i write, but i tried to incorporate a lot of different mediums into this project. there’s photos, there are some “diary entries,” & there is even a video.

before i share everything, let me explain the hashtag “DisabledAnd.”

#DisabledAndCute is a hashtag used on twitter & other social media outlets to raise awareness for those with disabilities, chronic illnesses, & terminal illnesses. it is one of many ways that disabled/chronically/terminally ill people share their stories with the world. it is incredibly important.

however – i am not always “disabled & cute.” sometimes, i am disabled & sad. other times, i could feel disabled & ugly. maybe i wake up one day feeling disabled & powerful. “cute” is one of many ways to describe a disabled person, & i think that the original hashtag is incredibly important, because it shows that disabled people can be beautiful, ethereal, breath-taking…you name it.

i am multi-faceted, & my illness(es) do not make me one-dimensional. “#DisabledAnd” is me sharing more about my illness & how i deal with it. it is me being “disabled & frightened.” it is me being “disabled & vulnerable.” it is me being “disabled & in pain.” it’s also me being “disabled & funny.” it is a lot of things. i took a semester off of university because i wasn’t well enough to attend. that made me feel disabled & weak. it made me feel disabled & tired. it made me – & still makes me – question my future.

i thought it’d be appropriate to share all of these things with the world, as i prepare to return to school in january. i am very proud of myself. i have a lot to work on, but i have overcome a lot.

this is quite frightening to share, but it’s something i have been working on for a very long while – consider it my “final project” for the school term i didn’t have.

i hope you can take the time to look at the “full picture.”

much much love,

SOFIA.

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instagram “live.” 11.22.2017 

VIDEO – RIGHT HERE 

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