“#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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Diary: I AM VERY SICK! & Now That I Have Your Attention – Please Read This! (No, It’s Not Clickbait)

Hello friends! This is just a short diary post & a quick life update.

I am still working! Still working hard at a “real” job. It is very hard; I’ve had some issues with fatigue & treating my hands properly. Since I am now arthritic, it doesn’t take much to get me into an arthritic flare. Usually, I am triggered by cold temperatures. Right now, my circulation in my hands is very bad because of the flare – the inflammation cuts circulation off to my fingers, so they look white or blue much of the time.

Why am I telling you this? For pity? Clickbait? No, definitely not. I’m trying to speak candidly about my illness(es) & raise awareness for them.

I just put out a few resources last night: here’s my YouTube video, titled “My Illness Is Not Your Inspiration!!!” Here’s a short introductory clip – click here to watch all of it. I really hope you do. Disabled or abled, young or old, I hope all of you can either learn something or feel like you can relate to what I am saying (here is a link to the full thing).

Have you heard of Hospital Glam? If not, you should check them out here (on Tumblr)

What is #HospitalGlam? According to the Tumblr:

“#HospitalGlam is a movement for and by people with invisible disabilities that started by appropriating fashion imagery and reinserting it into medical environments using bodies that don’t outwardly present as sick or disabled. #HospitalGlam is about contextualizing ourselves inside an often alienating environment in order to assert our rights as patients & better our treatments. By taking #HospitalGlam photos and posting them on social media, patients increase awareness in their communities and with doctors.”

I cannot emphasize how much#HospitalGlam has given me confidence even when I felt like I had none. It allows you to pretend to be confident. By pretending, you become more confident. This is something I truly believe. Here is something I wrote a while back, pertaining to #HospitalGlam:

“i have crohn’s disease & inflammatory arthritis. these illnesses have crushed some dreams & have ruined many a date/outing/even a vacation. i am not proud of my illness, but i am proud of how i have come to deal with it. every day is a learning process. i still cry many tears over it – i still get angry about the cards i was dealt. but if someone had told me two years ago that i would have shaved my head, dressed up in high-heeled boots & fancy sunglasses to go to a doctor’s appointment – then POSED in front of a chart of the digestive tract…i would have laughed in your face. this seems to be a common thing. the old me would have laughed at the thought of me even daring to do such a thing.

i am proud of the progress i have made – if not physically, then mentally. these are issues that will affect my personal life, my careers, my schooling, my relationships…for the rest of my life. i get joy & confidence for a moment when i make a “glam” pose in front of something that is so funny! no! crohn’s is not a “bathroom disease” – it is a serious, sometimes life-threatening one. some things are getting better, others are not. but my mind is healing, & every day, i learn more about myself, my illness, & how to deal with it. i am grateful for the friends & connections i have made. i am grateful to have a family that supports me. i am grateful to have gotten out of a situation with a manipulative doctor. i am heartbroken over a diagnosis i got over two years ago, but i am still grateful for what i have today. it has shaped me as a person. like it or not, i will give my disease that. for better or for worse, i have learned to be as unapologetic about myself & my illness as possible. & i love myself for it. thank you for creating a platform that inspired me to flaunt my beauty – because beauty is present…even in chronically ill or disabled people! how about that. much love.”

I hope you check out #HospitalGlam’s Tumblr! They are an amazing resouce for people with invisible illnesses. I also encourage abled peopel to take a peek. We can’t continue to raise awareness without abled people listening, learning, & sharing our experiences.

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Much love to all of you! I’m continuing to learn & I hope you are, too. Stay tuned for some posts containing my own writing – mostly pertaining to chronic illness, but also on other topics! Remember: I’m more than my illness & all that, yeah?

Also: check out the hashtag #DisabledAndCute on Twitter – it is filled with lovely photographs of chronically ill/disabled people showing off their beauty – whether in a hospital or out. It’s a great movement, & one I always talk about when I can.

 

I am trying to remain positive despite everything. September will be a hard month. I should be at school, but I am not. That sucks – but I’m making a great effort to make connections with people, meet new people, love new friends/people – & old. I know that I will come out of this a better person.

Have a lovely Friday (& stay tuned for Fenty Beauty reviews when my products arrive).

Love,

Sof ❤

P.S. Don’t call me strong 🙂 or inspirational 😉

P.P.S. I am trying to make more YouTube videos, but have no earthly idea of what topics I should cover. Suggestions appreciated!