Welcome To Hell

Sam | she/they | 20s catch me complaining about my Crohn’s Disease

[giggle]

this is the offical ‘i care’ symbol this is how it works: basically you reblog this and your followers know that you care and that they can message you about anything anon or not and you will reply back or at least look at there message. if you care about your followers please reblog

[sickbitterandcoveredinglitter]

I don’t think healthy people every really get chronic illness.

I have a friend I know from when we were both 6. She is the only person living nearby and so she saw me go from walking through limping to wheelchair on a daily basis. I keep her updated on my health even tho we rarely hang out anymore. She was gonna come over yesterday and I had to cancel. She asked if I can’t hang out later that day. When I said i won’t feel better later, that if I feel that bad in the morning later will only get worse she got annoyed and “joked” that I’m just finding excuses. And I was surprised, she knows all about me being disabled after all? So, a bit taken aback, I told her it’s a normal thing for me.

“But you got the diagnosis now, aren’t you better?? I thought you’ll get better now”

She was honestly surprised and it made me realize a thing. They don’t get it. They don’t get that getting diagnosed only equals benefits like welfare or parking spot for us, and sometimes better pain meds but that is just like pushing luck. That it’s a forever thing. That that one day we felt good a week ago was just a bright spot and doesn’t mean we won’t need our aids anymore, cause chronic illness is not linear and will make a great comeback in next four hours, and the next good day is planned on when we’re 70. Cause when abled people are sick, they get better. And our illness is just an excuse for them. And when we say we will never get better they think we’re being dramatic and pessimistic. And I don’t think they’ll ever get it, cause to get it you need to live it. And I want my friends to stay healthy and not go through hell.

[sickbitterandcoveredinglitter]

This is definitely okay to reblog and abled people are encouraged to reblog cause maybe it’ll help others understand

[sickbitterandcoveredinglitter]

Hello it’s me Lexa and this post is relevant again as I just had the Legit Same Talk with someone and I exhausted my number of fucks to give

[lunarayletters]

Hi! I'm the crohn's anon from last time :))

I'd appreciate if you could leave out the stoma since I don't have one. I actually just had my infusion appointment and it didn't go so well (I sometimes pass out and/or have seizures when needles or IVs are involved, not sure why) and that happened today. Was a little scary, if I'm being honest :(

I'd love to specifically request a fic where Jack comforts reader after a situation like what happened to me. Maybe he's in the room while reader has a seizure or passes out and he goes full on doctor mode but also like comforting and stuff. Maybe friends to lovers or something. I'm gonna let you decide!

Have a nice day 🩷

initial request here

hiii my darling i'm sorry to hear that it didn't go well :(

I hope this gives you some comfort, sending you lots of love <333

tw: medical settings, needles, seizure, fainting

word count: 2k-ish

Comfort

"Are you avoiding me?" Jack found you one evening hiding in a quiet room.

"No" yes.

"Liar" he smirked. "What's up?"

"What's up, with you?" you attempted to occupy yourself with something so you didn't have to look him in the eye.

"Hey" he said softly as he held your hands "talk to me"

"I don't know what you want me to say"

"Why are you avoiding me?"

"Because Jack.." you choked up "I can't be what you want me to be"

"My girlfriend?" he said quietly

You nodded.

"So... you agree to do on multiple dates with me, then tell me you like me too..." Jack stated, "but then when I make it official, you say no?"

You looked at the floor and mumbled "exactly"

Jack chuckled to himself, "you don't even sound convinced yourself!"

"I'm not"

He rested his forehead on yours. "You usually tell me everything, so why not now?"

"Jack do you know how it feels like to date someone with a chronic illness?"

"Not really but-"

"It's difficult, it's different and... it's exhausting"

"But I knew all of what when I asked you out"

"You can't be a doctor, you- you have to not be... a doctor"

"A boyfriend, yes I know" Jack smiled. "And i'm prepared for that."

You let go of his hand and stepped back, "I don't know if I am, i'm sorry"

Jack watched you walk away from him, but he wasn't disappointed that you did. He wasn't the kind of man who gave up that easily, especially when it came to love.

And Jack had always been a winner.

He knew why you hesitated whenever the idea of dating him 'officially' came up. You saw your chronic illness as a burden, something you believed you had to carry alone. You had convinced yourself that no one would willingly walk that difficult path with you.

But you were wrong.

And Jack wanted to do everything in his power to prove it.

A text came through from Jack the morning of your infusion.

Good luck today

You took a deep breath in, counted to five, then slowly let a shaky breath out. "shit, shit, shit"

You will do great. I believe in you.

"No, I won't!" you yelled to yourself.

The phone buzzed again, but you didn't even look at it. You were far too anxious for the long day ahead, and weren't too sure if you would be able to go ahead with it or not.

Maybe you could cancel the infusion. Maybe you could go back to immunosuppressant tablets. Gosh you'd even take suppositories or the granules that taste like absolute garbage. There were a million maybes, but only one thing for definite - you needed to try out the infusion for 'a better quality of life' as many, many doctors told you.

Thank you, Jack. I don't know how I'm going to get through it.

You put on practical clothing: joggers for comfort, a tank top so they'd have different access points to your veins, and a cardigan. The hospital was far too cold, and the doctor had already warned you that the infusion would make you incredibly chilly.

You packed your bag, let out another shaky breath, tried not to vomit and stepped out of the apartment to hail down a taxi.

But someone was already outside waiting.

Jack leaned against his car, arms crossed over his chest as he smiled at you.

You smiled the second you saw him. "What are you doing here!"

"It's infusion day" he said casually. "You thought I was going to let you take a taxi there? or go on your own?"

You threw your arms over him and he pulled you in for a tight hug. "Thank you, you're the absolute best"

The drive over to the clinic was quiet, because despite your excitement of Jack accompanying you, you were still far too nervous.

Jack also surprised you with a blanket that he had packed because he 'looked up the side effects' and he knew you'd be cold. And he also brought over a lot of snacks, but you felt too bad about telling him that you were too nauseous to eat.

You tapped your pen on the clipboard, leg bouncing up and down so he gently put one hand over your thigh.

"It's just... I hate this" you said quietly, "i don't know what to expect and what they'll do and if it's going to hurt and-"

"hey, hey, breathe" Jack shifted over and cupped your face. "One step at a time. If it hurts, or the side effects are too severe, then we'll ask them to stop it. It's as simple as that"

"It's not... though"

"Sorry, that's the doctor in me talking." he smiled "There might not be a cure to all problems, but there is always a temporary fix. And I can help you find that temporary fix, alright?"

You nodded and felt yourself choke up as they called out your name.

The nurse explained how the infusion would work, a total of two hours, given there are no complications. They'd given you antihistamines beforehand to prevent an allergic reaction. "You might feel sleepy for a bit, but there is a recliner chair you can lie on" she said, and you nodded nervously.

Jack noticed how you instantly tensed up as you sat in the cold, infusion chair. You squeezed your fingers into a fist and closed your eyes, feeling the nausea kick in again.

"Hey, do you mind giving us a minute?" Jack said quietly to the nurse.

"Sweetheart" Jack said as he sat on the edge of the chair "Look at me"

"I can't" you sniffed back tears

"Okay, that's okay. I'm gonna hold your hand and we're gonna slow your breathing down okay?"

You nodded, feeling the anxiety choking you up slowly.

"Pay attention to my hands, just focus on what i'm doing"

He held your hand carefully, resting it in his palm as his fingers moved in slow, soothing circles across your skin. "Don't focus on anything else; just think of what I'm doing"

You nodded again.

"I want you to take a deep breath for me, very slowly are you ready?"

You rasped, "no"

Jack let out a small chuckle, "okay let's just... breathe in normally. One... two...three..."

You did exactly as he said, "good, that's really good. One more you can do it."

"Shit" you muttered, "i've had a panic attack and i've not even started yet"

"Do you want to call it a day? we can leave, get out of here, and pretend that today is a fuck it day."

"A fuck it day?" you raised a surprised eyebrow.

"Maybe... once you get the infusion, we can have a fuck it day. We can do anything and everything we want."

The nurse had now come back and with a soft whisper, she asked if you were ready.

You looked at Jack who smiled and nodded in reassurance.

"Let's do this" you said shakily.

"May I ask who's accompanying you today?"

"Uh.. my boyfriend." You said, eyes glancing between her and Jack.

Jack instantly grinned, like he had just won the lottery.

"He's a doctor so excuse him if he... gets all medical"

You saw how his cheeks blushed as he bit down on his bottom lip in excitement. The nurse took your observations, and then got your arm ready for the infusion.

"Are you usually okay with needles?"

"Uh... sometimes I faint. Haven't in a while." You said nervously. "I'm not scared of them though... it just happens."

"Okay we can adjust the chair if that happens" she said. "Sharp scratch?"

You held onto Jack’s hand with your free hand and looked at him instead of the nurse.

Jack asked, attempting to distract you, "What do you want to do on fuck it day?"

"Uh..." you tapped your fingers nervously, "I've always wanted to get multiple takeouts in one night and just have a bit of everything."

"Like an at home buffet?"

You winced as the nurse adjusted the cannula. "Something like that"

"That can be easily arranged" he smiled, "anything else?"

"I.." you shook your head, feeling yourself get incredibly hot despite the cold room, "i want to-"

"Keep your eyes on me" Jack said as he saw you starting to shake.

But you couldn't see anything because your head tipped back, eyes rolling back as your body started to seize.

"Shit" Jack pushed off his stool. He barked at the nurse, "adjust the chair"

"Huh?" She was confused by his sudden authoritative voice but did as he asked.

"Time it" Jack hovered over your body as it seized, careful to keep you from hitting anything. "She has no history of seizures so this is most likely a convulsive syncope." He looked at another nurse who walked over to help. "Get your attending in please just in case"

Once the seizing stopped, the nurse attached all the monitors back on you. Meanwhile, Jack, felt your strong and steady pulse, sighing in relief. He then pushed your legs up in the air, attempting to increase blood circulation to bring your blood pressure back up.

"BP is 80/60" she said. "HR 45, oxygen 100%"

You opened your eyes slowly, immediately wincing as the bright lights overhead burned against your vision. Jack hovered his hand over your eyes to shield them. "Hey sweetheart, I bet you're feeling dizzy?"

"You can say that" you said faintly "I heard everything but it was all dark"

"Does that usually happens when you faint?"

You nodded.

"You had a seiz-" the nurse said but Jack put his hand out to stop her.

"A few people are going to rush in here, but I don't want you to panic"

"Why?"

"Sometimes when people faint... they seize. But it's harmless. It's scary as fuck though"

"I did, didn't i?"

Jack nodded.

"My legs hurt"

"That would be the muscles seizing up, but it usually goes away pretty quickly"

The attending arrived, a million minutes later, and he explained what Jack had already said. He insisted you'd reschedule the infusion but you looked at Jack waiting for him to say something.

He understood that look you had in your eyes. The look that said i'm too tired to keep making decisions.

"How's the blood pressure doing?" Jack asked.

"Back to normal" the nurse replied.

"Any implications if she does go ahead with the infusion?"

"No... but she probably needs to rest"

"What do you want to do?" Jack asked.

"I want to get it over with."

"Then let's get it over with." Jack said firmly as he turned back to the attending.

He nodded and did as you wanted.

Jack wrapped the blanket over you, and set up an iPad next to your chair. "I pre-downloaded some stuff" he said casually.

You lay back in the chair, watching Jack instead of the movie, admiring everything he had done so far for you.

"Hey Jack?" you asked, "What does dating something with a chronic illness mean to you?"

"It means... the same as dating anyone else who doesn't have a chronic illness but also different." He spoke softly, " it means that I'm not going to treat you any differently than if you didn't have a chronic illness... but I might throw in some extra marshmallows to the hot chocolate."

You chuckled as you said, "what?"

"Okay, say you're making a hot chocolate. Hot chocolate being... dating" he murmured and you just laughed at him. "I'd still make it to perfection but... for someone like you, I'd probably add extra marshmallows. Maybe some extra whipped cream. But I wouldn't tell you that I've done that."

"Can I ask why... you wouldn't tell me about the extra marshmallows?" you smirked as you said it, in disbelief at the silly but wonderful terminology he had come up with.

"Because by treating someone differently based on their illness, that might... sometimes... make them feel like a burden. And I know you already feel that sometimes. You're not a burden, you will never be one. So take the extra marshmallows, and ask for the hot chocolates every day if you want to. I'll happily make you one"

"You would do that for me?"

"Gosh i would do so much more if you let me"

You shifted off the chair slowly and reached for him. "So when's our next date?'

"I thought it's happening.. as we speak?"

"You thought this was a date!" you squealed.

"This was just the appetiser, just wait for the dessert" he smirked as he kissed you.

The drive home felt lighter than the journey to the clinic. You felt accomplished with a huge sense of relief.

The anxiety lingered in the back of your mind, though, as you thought of the next infusion. But knowing that Jack would be by your side might make it a little bit easier.

Extra marshmallows you reminded yourself. And whipped cream.

"Jack, why are there six takeout bags at my front door?" You said as you stepped out of the elevator.

"it's a little taster, for fuck it day" he smiled as he picked up the bags.

You were too stunned to say anything as you followed him into your apartment.

"Would you like me to present?"

Your jaw was wide open in surprise as you nodded.

"Drum roll please..." he said, and so you tapped your hands on the counter.

"A classic..” Jack presented the first bag. "America's favourite. The leading cause of obesity and heart disease. It's a.... McDonald's!"

You tipped your head back and laughed at him.

"Next up is another classic, but probably more in Japan than here. We have multiple platters of sushi!"

He presented the third, fourth and so on.

Jack took care of you that night, and every other night.

He, as you predicted, may have jumped into doctor mode once or twice. But he always made you hot chocolate, and your cup certainly overflowed with marshmallows.

-

note: writing about chronic illness is always so difficult but yet it's my favourite to write about. i have a huge admiration for anyone going through it.

it's unpredictable, it's ugly (i'm not sugar coating shit here), it's difficult. But don't let it define your life. You can define your life however you choose to. chronic illness is a diagnosis on a piece of paper. your diagnosis is a piece of you, but it's not all of you. sometimes it feels like your illness may be dictating your day, but on days when it isn't, don't forget to let that bitch know who's boss ;)

sending lots of love to the chronic illness baddies out there <3

[rubysapphrald]

i feel so defensive and protective of people with ARFID like if i had a disorder that made my brain register 90% of food as poison for no reason and i had a bazillion people on the internet constantly calling me a manchild who needs to just grow up and stop being a picky eater i would start killing people

[rubysapphrald]

people with ARFID and people with very few autism safe foods and people with contamination OCD and people in ED recovery and everyone else with a complicated relationship with food that no one takes seriously GET BEHIND ME!!!!!!!

[kunaigirl]

Me: "Damn people are REALLY BAD at knowing when to tag their eyestrain art/images...either that or they just don't care about photosenitive epileptic people like me. I feel really sad now." Person: "But Allison, what if they just don't know or understand what qualifies as eyestrain and what doesn't?" Me: "You know what? That could be a factor...While it is always better to be safe rather than sorry (so YES people should always tag eyestrain even if they're unsure if it "counts" or not) maybe you've got a point?"

Anyways! HERE'S YOUR HANDY GUIDE TO WHAT CAN COUNT AS EYESTRAIN! I'm pulling this straight from the Artfight rules page about what needs to be labeled and filtered as eyestrain because it's VERY helpful and VERY accurate! I also know not everybody has an AF account and might not always have access to this handy guide, and this is an important resource; That's why I'm sharing it here! (under the cut)

PLEASE TAKE THIS SERIOUSLY!!! THIS IS ABOUT THE HEALTH AND SAFETY OF OTHERS!!!

Full eyestrain AF page link

"But Allison! How were you able to screenshot that example if you're so sensitive to eyestrain?"

I dimmed the HELL out of my computer screen and looked away while taking the screenshot and did the same when putting it into this post, that's how lol. BUT YEAH ANYWAYS!!! Once again:

PLEASE TAKE THIS SERIOUSLY!!! THIS IS ABOUT THE HEALTH AND SAFETY OF OTHERS!!!

[rightdownright]

by the way this is medical. this could save somebody from a migraine all the way to a seizure. this has always been serious. treat this seriously.

[rabbiteclair]

auto immune disorders happen when the immune system ignores regulatory factors and begins attacking healthy bodily tissues, due to what scientists refer to as "sheer love of the game"

[sometiktoksarevalid]

[elexecution]

migraine so bad that im googling help. and it's showing me the beatles IM FUCKED

[segamascott]

shawty's like a malady in my head

[decompose1]

ohhhh shit. target is recalling their up & up baby wipes (fragrance free & fresh cucumber scented) because they're contaminated with Burkholderia cepacia complex and Burkholderia gladioli, multiple people are reporting discoloration & infections. i just got a call about it cuz i had purchased those but i've already gone through them 😅 so no refund for me. but im fine. if you have these they're saying you need to immediately stop using them and bring them back to target for a full refund. this bacteria can cause life threatening infections in children/infants and people with compromises immune systems (ESPECIALLY cystic fibrosis!!) and i know lots of other chronically ill people follow me!!!!

[decompose1]

Hold on i should've been more specific.

First: THIS RECALL IS NOT STATE SPECIFIC. IT IS NATIONWIDE.

here are the specific products and dates:

FDA page on this:

Target Recalls Up & Up Fragrance Free and Fresh Cucumber Scented Baby Wipes Due to Potential Microbial Contamination

Target is voluntarily recalling Up & Up Fragrance Free and Up & Up Fresh Cucumber Scented Baby Wipes following customer complaints of produc

[ojibwa]

[lifeafterpsychiatry]

If you're comfortable accusing anyone of faking disability, you're not a real ally to disabled people

[teaboot]

One time when I was a kid a group of girls and I had to treat another student for hypothermia by ourselves because she had so many invisible health issues that the adults we asked for help didn't believe us. The student in question was actively hallucinating. When I finally ran for help the people I grabbed were slow as shit to respond, casually joking about how "dramatic" the person in question was.

The kid was picked up by an ambulance 30 minutes later.

Now as an adult working in security I get SO MANY folks- upper-middle aged mostly- coming to me to 'rat out' people they think are faking it.

I was once sent into a bathroom because a client demanded that the "fucker won't get out, so go drag them out"- I was NEVER going to do that, so I did a wellness check instead. You know who it was? A person recently released from the hospital after a car accident. They had a hole in their skull and major hearing loss. They couldn't answer the owner because they couldn't HEAR the owner.

Another time about a homeless man who got around town by kicking the ground from his wheelchair. "You know he doesn't actually need that thing, his legs work fine, it's just for pity points"- Oh, so he's not paralyzed, his wheelchair is performative? Funny story Dale, I actually know that guy, he was backed over by a truck and has chronic pain from his shattered pelvis. But sure, let's make him stand up and walk everywhere so nobody feels too bad for him and tries to help him or something.

"She doesn't need that scooter, I've seen her get out of it."

"Look how fat he is, because he just rides around and refuses to get up."

"She doesn't really need that cane- she comes here without it all the time"

Sincerely, truly, from the bottom of my heart- as someone who isn't physically disabled but hears this shit all the time- fuck off

[taylortut]

the “sexy lamp test” but for disabled folks: if you can replace your disabled character with a beloved pet dog that needs an expensive surgery to survive then you have to throw out your manuscript 

[rouge-wall-enthusiast]

“The Family Dog” by Deaf artist Susan Dupor, 1991

[bedupolker]

Interactions that probably happened in California at least once

[enbaluka-tokyo-drift]

[rebel-hunk-enjoyer]

The worst-sounding piece of advice I've ever been given that does actually work is to frame your health concerns as coming from someone close to you, whom you do not believe. Tell your doctor that you've been having pain and your mom/friend/partner thinks it might be an ovarian cyst, but you don't think so because the pain is much more intense and it has to be something else. This gives your doctor an unseen third party to fight instead of you. They can't just tell this third party, who isn't present, that you pulled a muscle, they now need to prove to this third party that it is not an ovarian cyst.

At which point they will find an ovarian cyst, but they now get whatever fucked up satisfaction they derive out of proving you wrong, because you didn't believe it could a cyst at all, but guess what? They did find a cyst! It's such a good thing you didn't listen to your intuition and came to them to verify your lay diagnosis from that third party! Bonus? Doctor doesn't have to feel like they look stupid in front of a patient, which is really what all this is about. Not your health, why would you think your medical diagnosis is about your health? It's obviously about a doctor's potential ego.

And apparently this works. Apparently you just need to be able to always play 4D chess with your medical professionals in order to find an avenue of advocating for yourself and getting you medical needs met. Isn't that great?

I hate it here, actually.

[stealpeanutbutter]

i feel like i do 25% of what an average person does in a day and still it's too much

[mossy-cobble]

crazy how i find myself thinking i've got a handle on it all finally and then i see the ways that other people tangle their lives together so easily and live so easily together with their friends and i feel like that girl at the top of the stairs painting by norman rockwell

[mossy-cobble]

i'll always be here