#tw chronic illnesses

[blitzsicedcoffee]

The mind numbing anger of chronic fatigue is getting irritable because you're so fucking tired but you really feel like you SHOULDNT BE.

You SHOULD be able to sit at a desk and do work. You SHOULD be able to just watch a freaking YouTube video. You SHOULD be able to just eat fucking lunch.

But you can't. Because your eyes are closing and it's like temporary death is taking you.

[chronicsymptomsyndrome]

Can we please for the love of god stop telling teenagers they’re too young to have aches and pains. Can we please stop being dismissive about these things. Fakeclaiming is disgusting period, but it is exponentially harmful to youth. Just because you didn’t start hurting until your 20s or 30s or 40s doesn’t mean every teenager complaining of chronic pain must be lying. I learned the hard way that if kids are invalidated enough about this, they will just learn to accept constant pain as a fact of life. And then they will need surgery they can’t afford in ten years bc it turns out constant pain is NOT a fact of life. At any age.

p.s. same goes for mental health

[love-me-love-my-weirdness]

“Don’t let your disorder define you”

Okay but do you support the people whose disorders do define them?

Do you support people with the chronic illnesses who have had to develop whole lives around their conditions? Do you support the intellectually disabled people whose whole way of thinking is defined by their disorder? Do you support the people with personality disorders who literally have a disorder as a personality? Do you support the autism/ADHD people whose disorder you can’t separate from who they are? Do you support the DIDOSDD people who have multiple definitions of themselves because of their disorder?

Or are you just saying that because a disorder defining someone means you can’t ignore it.

[genderqueerdykes]

had the consult for my gallbladder surgery. the doctor told me i need to "lose 10 - 15 pounds" before they'll perform the surgery on me, and that I would need to wait 2 - 3 months before they would schedule it. i told her i have PCOS which makes it difficult to lose weight. she told me that does happen, and offered to refer me to a bariatric surgeon who is used to bigger bodies who could perform the gallbladder removal instead. i asked her for the referral to them instead

i was very angry at her for this, as 10 - 15 pounds do not make any difference when you are 300 lbs. my weight fluctuates between 280 - 340 lbs depending greatly on what i've eaten, how much i exercise, and so on. this will also vary greatly depending on if the stone is blocking my gallbladder completely or partially- if it's fully blocking the neck of my gallbladder, i cannot get enough digestive juices into my stomach to properly digest my food, so i will begin violently vomiting to get the undigested food out, and to get bile flowing into my stomach again. i begin to lose tons of weight when this happens, and i put it back on during the periods where i can get enough bile in my stomach to properly digest my food.

i can't digest my food properly. eating "healthier" will not change this- i can't digest food at all, period. healthy or unhealthy, i can't digest anything, because a good half of my digestive juices are completely missing from my guts. there is a functional issue with the way my guts work, of course i will lose weight drastically and put it back on at times. of course the issues will be episodic.

both her and the student that was working with me kept assuming that i said that my pain got worse after "high fat" meals. both of them put this in my mouth-

the student did it first. she asked when the pain gets worse and i said sporadically, but sometimes after i eat. she literally asked me "so you said it gets worse after fatty meals, right?"

i got frustrated and said "no, it's really random." i didn't get to tell her that raw leafy vegetables and lightly steamed or cooked vegetables make me vomit. broccoli and cauliflower that aren't heavily cooked, salads, raw vegetables, lightly cooked carrots, applesauce and apples in general are all problem foods.

the doctor then came in and said "it gets worse after high fat meals, right? you said that" and i went, again, "no it just kinda happens."

i don't even eat a high fat diet. i cook at home now for every meal now that i have all the tools i need to do so. i make rice, fish, pasta, and certain vegetables that i can digest like potatoes, sweet potatoes, onions, mushrooms, and so on. i eat bread, seeds, nuts, dried fruits, and drink oatmilk. i don't eat land meats, eggs, or dairy. i don't have any of those things. i do eat french fries and fish sticks, but not for every single meal. i don't eat chips because they're too salty and irritate my stomach. i don't eat candy or sweets unless the food bank delivers them to me. i don't eat much sugar other than pancakes and certain fruits

she wouldn't listen to me and went "well when you eat fatty meals, your gallbladder has to contract more and it can cause you a lot of pain." you would not believe how many times she came back to "you need to eat a lower fat diet." "the pain gets worse after you eat a high fat meal, so eat lower fat meals and your pain will go down." "just eat a lower fat diet and it'll help."

i just kind of sighed. there were tears in my eyes. i felt defeated. they made a bunch of assumptions just because i was sitting there, being fat. i was wearing long sleeves due to it being cold and they didn't get to see that i have a lot of muscle in my body mass. quite a lot. i wanted to tell them that i'm on testosterone and physically active when and where possible, and that i frequently lift heavy objects and move, but i never got a chance. i wanted to tell them my BMI isn't what they think it is, but i just didn't bother to try

i despise that people assume that fat people are fat because they eat "unhealthy" foods. i ate high fat foods for a few months while i was homeless because i didn't have the resources to cook every single meal. it affected my liver, i'm dealing with some fatty liver. but my gallbladder has more important issues in the form of the literal stone inside. she would not stop pushing for me to eat lower fat meals. all because i was sitting there, existing, as a fat person. i wish i would've told her i can only eat fish and plant matter

i don't understand how a patient telling you they're vomiting and can't keep down certain foods does not sound like a more pressing issue than an arbitrary number. weight as a number means nothing, it tells you nothing about that person's actual body composition. i have trauma with vomiting and yet i'm going to have to keep doing it anyway despite the fact that it could kill me via dehydration or if i just. can't stop

either way i'm very unhappy with result as i already waited for a month for this consult. now i have to wait for a referral for another surgeon to go through, and to do the consult with them, too. all while being in pain and having GI issues the entire time. just because a surgeon doesn't want to take the time to learn how to operate on fat bodies. i'm tired. what a joke

[araekniarchive]

@mnvart // Kaveh Akbar, 'Calling A Wolf A Wolf' // @PinkRangerLB on Twitter // @kosmogrl // @devinsturk, '15 Proverbs for the Fellow Chronically Ill' // Jasmine Deporta // Anaïs Nin, House of Incest // the gentle wisdom uquiz by @inkskinned // Rora Blue, 'Sweet Dreams' // Hala Alyan, Dear Layal

[21stc3nturyd1gitalb0y]

a lot of you got a kick out of my service dog’s battle jacket, so i thought i’d share some more pictures of the man himself.

i know people have a lot of stereotypes about what service dogs and their handlers are “supposed” to look like, and it confuses people to see a young, seemingly able bodied punk rocker with a service dog.

but i share this to say, that if you as a disabled person don’t see a life for yourself, you can create one. when i started to realize i was disabled almost 10 years ago, i certainly didn’t imagine this is where i’d be now. in fact, i didn’t even plan to making it to this point.

but a diagnosis doesn’t have to mean the end of the world. sometimes your world is just beginning. some people are of the belief that everything happens for a reason. me, not so much. i’ll never be grateful for the suffering i experienced in this world, but i will always, always be glad i chose to stay in it.

[fallenstarcat]

“well it’s good your tests came back normal!”

no. it’s not.

a normal test result doesn’t mean i don’t have symptoms anymore. it just means we’re no closer to an explanation.

i’m still struggling. my symptoms are still getting worse. we just don’t know why, also meaning they don’t take me seriously.

a normal test result is not a a happy thing when disabled.

[island-76]

It's so aggrivating seeing your health get worse while you're helpless to stop it

It's so aggrivating to have to adapt to brain fog when there was no fog a month ago

It's so aggrivating to deal with so much fatigue, when 2 years ago, you were so lively

It's so aggrivating to deal with all of this and find yourself slipping into anger more and more

To find yourself holding your tongue so you don't hurt those around you because you're tired and don't have the energy for it anymore

It's so unimaginably aggrivating

[neuroticboyfriend]

i love you addicts. i love you when you're sober. i love you when you're clean. i love you when you're dry. i love you when you're scared and confused. i love you when you're fighting off relapse. i love you when you're in relapse. i love you when you're detoxing. i love you when you're on maintenance medication. i love you when you're in rehab or the psych ward. i love you when you're in a sober house or group home. i love you when you're homeless or displaced. i love you when you're broke. i love you when you're not broke, including when you spend your money on substances.

i love you when you're you, sickness and adversity and all. i love you when you're you, recovery and strength and all. i love you for being here. i love you because you're a person. i love you more and more; you're the person who needs love the most.

[mothcain]

Nah but let’s talk abt how ppl use disability terms/harmful stereotypes/ derogatory words so casually this disabled pride month (tw ableism below)

The new terms are “sch*zoposting” and “delulu” but shit like this has been around for years and it’s so incredibly frustrating.

Another example is those TikTok POVS about “the weird kid in class” but they are all stereotypes of autistic ppl.

Or the misuse of the word triggered, the misuse of the word OCD, the misuse of gaslighting, of cr*pple, “are you deaf?” “Are you blind?” “Hellen Keller isn’t real.” I could go on and on but I will simply say this.

Disabled people are real people with feelings, emotions and lives. We deserve to use the terms that we need to COMFORTABLY. We deserve to exist without people taking the language used in the context of ourselves and putting it in a negative light.

We deserve to exist.

We deserve happiness.

Check in on your disabled friends.

Don’t assume things about people you don’t know.

[a-totally-reasonable-username]

Stop saying "elderly" when you mean disabled old people. Young disabled people exist. Not all elderly are disabled. You mean disabled people so just say disabled people. It's more accurate and way less ableist.

Disabled is not a bad word

[discordant-daydreams]

Having a lot of feelings about being disabled and hearing over and over that while you feel like you’re dying your labs don’t show that you’re dying so great news!!! You’re as healthy as can be!!!

[4spooniesupport]

[permanently-sprained-ankle]

“I’m chronically ill, not drug seeking! I don’t want to be mistaken for an addict trying to get opiates in the emergency room!”

I totally understand not wanting to be mistreated, bullied, and denied treatment, or being misdiagnosed with a disorder you don’t have (in this case, substance use disorder). It shouldn’t happen, period.

The problem is when chronically ill people act like they’re better than addicts just because they themselves are going to the ER for a “real” reason. (If you don’t do that then I’m not talking about you)

Have you considered that the addicts and “drug seekers” shouldn’t be treated that way also? They too are seeking medical treatment for a disorder and/or withdrawal. Everybody deserves adequate treatment, yes, even if they are doing so because they are addicted to a substance.

[Image ID: White text in a Galaxy background reads If you: Derail my posts; are an “aspie”; run a sh/ed blog; are under 16; are a TERF; think cripplepunk is for mental disabilities; think that autism isn’t a disorder; are pro-transabled, trace, transage, etc; are pro-map or pro-zoo; are a transmed; want to completely demedicalize autism, I will probably block or mock you. End ID]

[genderqueerdykes]

disabled intersex trans lesbian needs help paying for bills while sick with gallstones

hello, i'm equinox. i'm a mixed disabled intersex trans lesbian. i am dealing with gallstones, one of which is lodged in the neck of my gallbladder and causing immense pain and digestive issues. i'm struggling to keep down food, some days i can't at all. i am also dealing with an injury in my left wrist that makes it very difficult to use, flare ups from hypermobile ehlers-danlos syndrome and psoriatic arthritis. i am struggling with my health and am in need of help as working has become very difficult and i'm being urged to rest while i await my gallbladder removal surgery

today i was told that the surgeon i was referred to can't work on patients above a certain weight and that i would need another referral to a surgeon who is used to working with fat bodies. i already waited a month to see this person, now i have to wait again. i have bills to pay, and i'm struggling to make ends meet right now due to my low energy from dealing with my health as is

i have been bed bound lately and my body has been so exhausted to the point of nearly passing out in public several times. i have been so tired i have been falling asleep against my will. i struggle to cook some days due to being so exhausted. i'm behind on housework, and i need certain cleaning items. i'm struggling to eat regularly, as sometimes i can get sick and throw up for no reason at all.

i had 4 GI procedures this month, all of which were helpful and informative, but it's wearing on me. my mental health is very fragile at the moment as my care is being prolonged for no reason. i am frequently in tears due to how tired this has been making me. i am frustrated beyond belief because i just want to be able to eat normal meals again. i can barely eat. i can barely stay awake

i currently have to pay for my electric bill, and my internet bill:

if you are interested in helping me, you can do so in the following ways:

pay pal: glittergraphicnightmare @ gmail. com cash app: $glitterGraphix venmo: $Equinoxian chime: $Equinoxian

Click here for my eBay shop!

[hellyeahsickaf]

The way addicts and chronically ill people are dehumanized is so exhausting

The normalization of this shit in medical and casual settings is genuinely mind boggling. Addicts and disabled people go through so much bullshit. I've dealt with many fucked up doctors when I just needed help

I had a kidney infection, some months back. This is always extremely medically urgent, and I was likely only hours from sepsis. I went to the hospital reporting my pain to be a 9/10. 9 because my 10 was gallstones. I experienced severe malpractice at the hospital and the doctor reported exams that never occured and false information while making me wait with nothing more than tylenol to hold me over (didn't touch the pain) and bring my fever down but that's a whole other story

They did however, deny me the pain medication I needed until it was time to go home. I'm deathly allergic to NSAIDS, but that's something an addict might say so they witheld pain relief because they'd rather me suffer just in case I'm a different kind of sick. An entire night, maybe 6 hours in the ER and they couldn't give me anything, not a small dose of morphine or one norco even a few hours prior to take the edge off of the pain while I was curled up shaking and crying. Just in case I was an addict looking for my fix, and my suffering was just withdrawals and good acting. In that case maybe I deserved it and should be denied my humanity. God forbid in that case I'm so desperate to alleviate unbearable withdrawals that I spend all night in the ER crying. Not the first time I've experienced red tape just to get relief from excruciating pain

But whatever. As per protocol I was asked to follow up with my pcp. So a few days later I called to set an appointment, but I'd also run out of norco and desperate to relieve the pain I asked if I could be filled even enough for a few days, until the pain was bearable. I had difficulty walking, laying down, and I again, can't take most pain relievers. The receptionist was nice and understanding, actually got me in touch with the doctor because she wanted me to be able to get my refill. Probably heard the pain in my voice even. She believed me

She transfers me over to the doctor and I tell him I'd like a follow up and ask if he could fill my painkillers. I would've acceped a no from him, I just needed my follow up. He asked about my condition, I told him my diagnosis and how much pain I was in

And he laughed.

Got a real hoot out of it, like he had me all figured out. Like he caught me trying to cheat the system. I must be trying to get high or make some money with a few days worth of norco as i'm nearly in tears from the pain even while calling

He tells me through his laughter "I don't prescribe painkillers for 'kidney infections'" saying it with a mocking emphasis on those words, as if I'd said "stubbed toe". Follows with "Yeah haha, bye." and hangs up on me. No follow up like I called for. Needless to say I no longer have a pcp but truly if he thought I was an addict trying to take advantage of him he should have still treated me professionally. Maybe not cackled when I said my pain was excruciating for a start

I just don't understand why the hell so many doctors can be so apathetic to people's suffering. Addicts deserve better and so do disabled people- whether you think they're addicts or not. The assumption that we're lying, trying to trick them and are feigning pain to do it is disgusting, listening to your patients is so important. And if that were the case they could have some sympathy and ask themselves what it would take for someone to go those lengths, take such drastic measures and go through that trouble to obtain those substances.

Addiction is not a moral failing. Many disabled and chronically ill people unfortunately rely on medications that have addictive properties. About 80% of heroin addicts first misused prescription drugs. However only about 4-6% of those addicted to prescription drugs switch to things like heroin. And instead of help or compassion for people who just need help (addicts or not), they just figure we're one in the same and treat us like subhuman degenerates, leeches on society. And I think people need to change how they view addiction. Doctors need to change how they view addiction