Let’s highlight Autoimmune Diseases [or Disorders] this week:
- Autoimmune diseases include a broad category of related diseases in which the person’s immune system attacks their own tissue with symptoms that can vary from mild to severely affecting daily life
- Autoimmune disorders are chronic (ongoing) illnesses; there are no cures, only treatments and symptom management
- In many cases autoimmune disorders are inherited, but it is not known why some people have them
- AD are frequently classified into organ-specific and non-organ-specific types, though some of them fall between the two
- Patients can experience multiple organ-specific diseases at the same time
- Sources vary on an exact number of autoimmune disorders, but the current number ranges from 80 -140+ different types and can prove difficult to diagnose
- Autoimmune diseases and their effects on mortality and morbidity are significant
- Everyone experiences their illness differently
The Global Autoimmune Institute and the Autoimmune Association have a non-comprehensive, searchable database of autoimmune diseases.
Sources: “Autoimmune Diseases - an overview”, “What is autoimmunity?”, “Human autoimmune diseases: a comprehensive update”
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“Disability” is an umbrella term which encompasses physical disabilities, emotional/psychiatric disabilities, neurodivergence, intellectual/developmental disabilities, sensory disabilities, invisible disabilities, and more. You do not have to have an official diagnosis to consider yourself disabled.
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New Mega
My weird allergy problems have been getting significantly worse recently.
They’ve been getting worse for years with more and more things causing reactions but I had such an awful time with doctors not caring about or believing me when I first started having issues ive just been trying to deal with it on my own for like 7 years now.
I think it’s too much for me to handle on my own now but im afraid ill try and get help and get the same reaction as before, or get scammed by some “specialist” that preys on people needing help for complex health issues, or they’ll figure out whats wrong but treatment doesnt help or there is no treatment, or ill actually get help and itll be so expensive and fully out of pocket that my entire paycheck will be dedicated to paying for something that should be free.
I need to do another elimination diet in the meantime but there’s a few things in my adoptive parents house that I’m allergic to that could mess with the results and I hate having to eat so much meat for the early stages of it.
When things weren’t so bad I was trying to go vegan and now that feels impossible
I’m fucking unemployable.
I ace every technical assessment, my work when I’m focused is great. I’m a ticketed journeyperson who can get hired on that simple fact alone.
I have been fired from so many companies. I cannot get into a routine. My ADHD is so severe when i finally saw a specialist they said it might be one of the worst cases they’ve seen and were surprised at how far i got in my career unmedicated for 30+ years.
Even medicated I struggle to follow schedules and struggle to give 2 shits about the rules. I leave early because my brain cannot handle being on the job anymore.
Does anyone care that i got more done while i was here than most other workers did in the day? (not a brag, just in relation to an employer’s expectations) no, I’m reprimanded for not giving even more of my labour power away for essentially free.
Oh someone said i took an hour for lunch? What did that person do today? No they’re more valuable because they act as your eyes and ears for disciplinary actions…
Fuck working. Fuck bills.
I got hired the same day i got fired. The only thing keeping my family above water is the decision i made to actually get my ticket. If i was unlucky enough to be in an uncertified trade or career I’d be a pariah and have to move away
My buddies are saying I could get an achievement for being let go from every mechanical insulation company in the province and they’re not far off
My teacher in trade school said i was the fastest at doing math of anyone he’d met before. I got perfect scores on everything.
Doesn’t matter because school isn’t 8 hours of production a day
I can’t even fake it. When a supervisor catches me slipping i sometimes won’t even get back to work. I have no respect for authority which might sound cool but it’s not fucking good for my quality of life.
My hummus/shredded carrots/fried onions/beansprouts/fried silken tofu/cucumber and potato crisps sandwich is built in part as a thought experiment on food texture sensitivity exposure and in part because it would be fun to eat. Thanks @Acute_Engles@hexbear.net
I am not gonna need to eat anything else today . Honestly I may be in a calorie surplus for the week
Glad i could help
I’m making a texture sandwich. I’m putting as many weird textures in it as possible. Suggestions welcome.
Fried onions, beansprouts, zucchini
Oooh. Good suggestions.
Ngl sounds almost like a full dish
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If I had a nickel for every time Sarah Anderson made a comic that misunderstood the basic function of major organs and in which the punchline is her anxiety disorder, I’d have two nickels. Which isn’t a lot but it’s weird that it happened twice.
My flavor of small talk be like:
-Ranting about people buying the store’s entire inventory and flipping through hundreds of coupons at checkout✅
-Talking about the weather ❌
I’m having a bladder flare up. Now I’m actually starting to regret not taking the hysterectomy when it was offered. (I have a fibroid that has enlarged my womb so it’s pressing into my bladder and making it sensitive). I’m wondering now if it’s too late, will I have to go back on the waiting list for a million years again.
Maybe it’s worth pursuing, even if it takes time. If that would get rid of one of your lingering issues, I’d say it couldn’t hurt to ask
I’m still not sure though. Whatever I do, the side effects will be awful. I can either live with this bladder disease which severely limits what I can eat and stops me sleeping as I have to get up to wee all night, or go through a major operation, possibly with complications, with a 15% chance of being left in permanent pain and maybe it won’t even cure the bladder after all this time.
I honestly don’t know which is worse when looking at the bad-outcome-options. But I will say that there is a chance it’ll get better with the surgery. Still, I don’t know if that’s enough to go through with it. You could ask just in general if it’s still possible to get the surgery and make your decision based on how much effort would have to go into the preparation.
My mind changes constantly. Yesterday I was so sure I’d try and get back on the waiting list but today I don’t see myself going through with such a major surgery.
Then maybe now is just not the time to go through with it
I checked with them today. Because it’s been more than 6 month since my appointment, I’ve ben discharged. If I wanted to go through with it, I’d have to go through the GP, be on the waiting list and everything all over again. Could easily take a year. Also I found the letter that they sent me after the appointment with the list of complications from the surgery and it’s worse than I remembered. I could end up needing a colostomy bag and all sorts of other things. They said the complications from the surgery could be “life changing.” I don’t know what to do, I have enough problems already.
Oh fuck that’s a lot. Honestly, if I were in your shoes, I think I’d forgo the surgery too :/ doesn’t seem to me like it could be a big improvement
I frew up :(
Oh no :( are you ok?
i guess i have a cold, i haad a really bad feverr and was only awake for like 3 or so hours yesterday, but i feel okayish now
No diarrhoea at least, right? Remember to get some fluids,
Been trying to, was throwing up water 😔
I remember when I tried one of the meds I ultimately had to stop taking I was also throwing up water. Really bizarre to be unable to hold down the most basic inoffensive thing.
Non-anglo here, had to look it up too, it’s spelled diarrhea (for some reason?!)
Si j’avais lire le character œ, je serai prendre une classe de français
Je suis desolée, ma sœur.
Æøå
Oh my, sweetie, please rest up properly and get well! Do you need some veggie or chicken soup? I’ll make you either, just let me know
Rice soaked in veggie soup sounds so good rn
Coming right up. Get cozy, soup’s on the way
I feel so tired sometimes just from the effort of speaking, either let cook my own food or cook it for me on time
There is one point where I think medical cynicism benefits patients, but it’s not like in a huge way. Still. If you’re ever worried about saying something embarrassing or shameful to your doctor, absolutely don’t be. Don’t worry one bit. They may laugh to themselves later, or they tell your story to the other medical professionals, but they will absolutely not give a singular fuck that it was you who said it. They will not remember that, or care. If you tell your doctor that you once stuck a thing of toothpaste up your butt because you wanted it to smell minty, they’re gonna tell that story, but they will not remember your name, your face, or any other details about you, and the only detail that will get passed around is that a thing of toothpaste was up someone’s butt.
I was listening to doctors swap stories yesterday, which included two people swapping similar stories, wondering whether it was the same patient, and then realising neither one could remember literally anything else about the patient.
I have heard someone say something once that stuck with me for situations of the kind, which is if you ever see someone doing something weird or embarassing in the street, a week later you may remember what they did but most likely not their face
If you tell your doctor that you once stuck a thing of toothpaste up your butt because you wanted it to smell minty,
I never even thought about that, woah. Minty fresh ass… and a trip to the doctor.
That is definitely reassuring to hear, and I also think it’s a very human thing to share these parts of their story. You face a lot of shit each day in the medical profession, there needs to be an outlet. As far as talking about other people in their absence goes, this is one of the things I can accept.
Do you happen to remember any funny stories you heard or experienced?
Oh I have a bunch already. Uhh. Let’s see. Hmm. I don’t want to violate anyone’s medical privacy obviously, or just privacy in general. So I’m gonna keep it as unidentifiable as possible. Let’s go with the wildest story first.
We had a person who got stabbed who was delivered to the hospital by their partner. The partner was besides themselves with worry, but had to be asked to stay outside the patient’s room and away from the patient in general once it was discovered that it was they who stabbed the patient. One of the doctors (There was debate) called the cops, who arrested the partner while they were pacing around waiting for news from surgery. Once the patient was ready to be discharged, they were mighty upset, because the partner had been their ride home.
Also, the partner did not have a driver’s license and was married to someone else.This is wild indeed, holy shit
During the he heatwave some of the hospitals in the area were handing out popsicles and ice cream to staff, but not to patients.
So imagine a child, waiting for someone to pick them up, they’ve been sitting there for a really long time and they’re obviously uncomfortable and they don’t know anyone and nobody is talking to them.
Imagine a doofus thinking this is their chance to be a good samaritan, imagine some doofus “stealing” a popsicle for that child, imagine that child being mad because it wasn’t one of the good flavours (Cola is apparently much, much better than grape), then imagine their mom shows up and gets mad at said doofus for giving their kid sugar.
I hadn’t intended to make another post so soon, but I saw this:
https://www.thesun.co.uk/news/40022943/mum-drags-cop-disabled-avoids-jail/
A policeman’s knee was injured while trying to arrest someone and he’s now not fit for active service. His biggest complaint about this? Not the pain he must be in, not the fact he can no longer do things he wants. No, his biggest complaint is "He was left with permanent injuries to his knee and can no longer work on frontline duties. The officer also said the burden he believes he is placing on others was the equivalent of ”living a death sentence.”
We live in such a sick capitalist society that if you’re injured at work and can no longer do everything you used to, your biggest worry is that you’re now a burden on society. And no wonder, since society does treat the disabled as a burden.
I can only agree with you, I firmly believe nobody should think of themselves as a burden because of a disability.
(This doesn't need a CW afaik but it's dark so I'm putting it in spoilers)
I will say, however, that “an Afghanistan war hero” - cop kinda sounds like he deserved being dragged along the road for multiple car lengths.
Yeah he probably did. And from his comment about being a burden I’m guessing he’s one of those people who has always thought of the disabled as a burden.
I had my irl cake day a couple of weeks back. As I’m currently not in a position to invite people over that I know and love, I had a rather cozy day with my roommates, a bit of cake and homemade pizza.
To my great sorrow, almost none of the people I consider my close friends texted or called me. There are a few acquaintances that I chat with almost only on our birthdays, and they were being really sweet again this year. However, none of the people I talk to almost on a daily basis contacted me - and a bunch of those who forgot about my birthday just texted me regular every day stuff with no acknowledgement or a belated “Oh shit, I almost forgot, happy birthday”. Cried almost the entire morning the day after my birthday and left all their regular messages on read.
So about a week later, after trying to calm down, I decided to make a, granted, little aggressive note in my story saying that there’s a good reason why I haven’t replied to any of their messages. And then only two people asked what was wrong and still didn’t know what I was talking about. I’ve known most of these people for more than 10 years, and it still fucking hurts. I don’t like big birthday parties, I don’t even like getting gifts, but I do like seeing and feeling like my friends give a shit about me. Still feel horrible now and don’t know how to properly communicate that to those people I was expecting more from. If anyone has any ideas, I’d be happy to hear them. Mind you, I can’t talk to them face to face.
Happy birthday.
Sorry no-one called you. It’s the same for me and it can be difficult not to feel rejected but more and more I see just how shallow most people are. Most friendships in normies are really just people using each other. Once you’re sick or disabled and no longer useful to them, people don’t bother with you any more. In fact, have you seen the Black Mirror episode “Nosedive”? It’s about this issue (although not with disabled people, just how many normie people pretend to be friends with each other to use them).
This website, especially here on the disabled thread, is really the only place I’ve found people who understand and experience the same thing.
Thank you
I dislike how me asking about something relating to my birthday always sounds to me like I’m trying to get attention and well-wishes after the fact. However, I really appreciate your congrats.I spend the morning yelling at one relevant friend that my problem really is not that they forgot about me but that they forgot about the “special day” it was. They said the same thing as all the one’s whom I talked to, they’re sorry and and they didn’t forget about me. I feel like I’m talking to a wall honestly, so I’ve decided to not accept the belated wishes and just let some time pass. All they do is apologize and they never really get that as a very poor person (they’re far from rich either), to me this “taking time to talk to me (on my birthday)” aspect is the most important one. I have no idea how to make that clearer to them, and I told them multiple times already. My wealth lies in the relationships I have. If those get discarded or overlooked, I’m lesser for it.
I think I vaguely recall watching that episode. A lot of people are like this, though I will cautiously say that at least a few of those who forgot me literally just forgot me and do give a shit about how I’m doing. It’s a very present-day-horror episode of Black Mirror, one of those that really makes you uncomfortable.
Absolutely! Hexbear is currently probably the only website I frequent where I actually interact with other users. It has its flaws, but it is a beautiful place and always worth coming back to. Happy to know you and all the others here <3
I had to recently come to terms with the fact that an old friend didn’t care about me. I spoke about it on here, how I found an old school friend on youtube, told him about all my issues and how I’d love to see him as I’m very lonely and can’t get out much (he only lives a 45 minute drive away and has a car and doesn’t seem busy) and he didn’t care at all and didn’t respond. It’s hurtful and humiliating, and I think sometimes we need to accept these people aren’t real friends, just acquaintances. After all you told these people multiple time that their presence is what you want, I think they know but maybe don’t care, same as my acquaintance.
People here are (in general) just more real. Maybe we’ve just had harder lives, I don’t know. A lot of people here have experienced serious issues like disability, being trans, extreme poverty, etc. I guess it’s taken us out of the shiny, happy superficial life that many people seem to be leading.
I’m really grateful to know you and everyone here too! I don’t think it sounds like you’re trying to get attention either. Why not treat yourself (if you’re able) to something nice for your birthday, even if it’s just renting a good film?
Oh I remember how excited you were when you found him again, I thought it was just so cruel that you’d get this glimmer of hope and then nothing came out of it. I agree with you, just with the small correction that the “they” I was referring to was just a singular person.
The internet, despite all the efforts of big companies to make it worse, still can be a place where you are less restrained by societal norms and expectations, and thus are liberated to speak more freely. I don’t think I would talk about the stuff I talk on here with a lot of people I actually know, or when I tell them the same story, I modify it heavily just because I know the non-neurodivergent of them get bored by my rants rather quickly. Here, I know people who don’t mind will read and sometimes comment, and the others just can skip over what I write without me feeling like I’m annoying anyone. Hexbear reminds me a lot of old forums I used to be part of where people would get to talking about a lot of different things, even if it was just a forum for a fandom or something. While I don’t talk to any of them anymore, I still remember a lot of these interactions and the people I talked to fondly.
That’s reassuring to hear, thank you - I actually did treat myself to a small new keyboard for my tablet. Originally wanted to buy a laptop but who can afford one in this economy, so now I have a touchscreen laptop and am very happy to have a proper keyboard with it :) I think that does count as a bit of treating myself.
I’m glad you got something nice!
I’m shit at remembering dates but it is the easiest thing in the world to put it in your calendar. I try to be understanding to like, my friends with adhd and what not, but like you it feels really hurtful when someone forgets for me
I hope you have a good belated birthday, you’re wonderful :meow-hug:
You are a sweetheart, and thank you
And it’s not like I don’t forget birthdays either, so I know the other side too, and I feel just as shitty forgetting someone as I do when I get forgotten
My landlady’s family went home last night, finally got taken to the supermarket this morning. And I embarrassingly got misgendered there, and this is not even the first time it has happened. A little girl was in my way and her mum said, “Mind out the way, a man wants to get past.” I know logically I shouldn’t care what people think but it is really embarrassing going out in public knowing I look so rough that people can’t even tell what I am supposed to be.
On the plus side sainsburys finally restored my missing coupons.
I’m really glad you got the coupons restored. That is a huge relief!
The misgendering is heartbreaking, I’m so sorry this happened
Thank you.
You are beautiful and very welcome sweetie
Misgendering is never nice of course, and being regranted your coupons obviously doesn’t make up for that. But it’s nice to hear you’re able to leave the house again.
Thank you.
This physio shit sucks? I’m doing it for back and ribcage related stuff but goddamn, the “light stretching” takes almost an hour and leaves me sweaty & exhausted every day. Whyyyy?
I think they would ideally do more frequent, shorter sessions, but there isn’t enough resources for that
Oh yeah I’m mostly going for like an hour and then taking home instructions to do routines myself, Idk if that’s normal.
super duper normal
