#actually autoimmune

[transpiled]

I desperately want to connect with more people who were affected with hsp (henoch-schönlein purpura) as children, especially those who have become afflicted with other (physical) disabilities and autoimmune diseases later on in life. despite my wording, I do mean to include people who were diagnosed with hsp later in life, its just a very small minority of an already small group

[cosmiccripple]

if you are sick, i don't give a shit if it's just a cold, wear a FUCKING MASK!!!!!!!!!!!!!

[kalethemonster]

what neurotypical abled people cant seem to get into their heads is aids and medication dont stop people from being neurodivergent and/or disabled. hearing aids dont stop deaf or hard of hearing people from being deaf or hard of hearing, it just makes hearing easier mobility aids such as canes or crutches dont stop people with arthritis, chronic pain, or just general mobility issues from having arthritis, chronic pain, or just general mobility issues, it just makes getting around easier

pain medication doesnt stop people with chronic pain stop being in pain (specifically in the long term), it just makes pain management easier

fidget & stim toys and fidget & stim jewelry dont stop people with anxiety from having anxiety, adhd-ers from having fucked up exectutive function, and autistics not being able to automatically regulate emotions and sensory responses, it just makes dealing with them all easier

various adhd medications doesnt make people not have adhd anymore, it just makes it easier to regulate their executive function.

anxiety medication doesnt get rid of anxiety, it just makes it easier to deal with.

white canes and sight specific service animals dont stop blind people and people with sight impairments from being blind or having sight impairments, it just makes living with them easier.

trauma and emotional support specific service animals dont stop people from having trauma and emotional issues, it just makes dealing with them easier

anti-depressants dont stop people with clinical depression from being depressed, they just make it easier to deal with by stabilizing mood.

immune suppressants dont stop people with any autoimmune condition(s) (such as crohn's, psoriasis or psoratic arthritis, rhumitiod arthritis, myasthenia gravis, fibromyalgia, ect.) being affected in any way affected by their autoimmune condition(s), they just make living with the condition(s) easier.

medication and aids arent magic. they dont make the disabled and/or neurodiverse person not disabled and/or not neurodiverse, they dont entirely cancel out the thing they are used/pescribed for, they just make it easier to exist in a world where whats considered "normal" or "independant" or "a regular human being" doesnt automatically include them.

[pyjamacryptid]

This flare-up’s taking its sweet time stg

[detentiontrack]

It's an easy mindset to fall into, especially when you're first diagnosed, but I need everyone to know that just because your illness or disability is lifelong, it doesn't mean that your life is always going to be bad. I just passed my 8 year anniversary of getting diagnosed, and tonight I baked a batch of my favorite chocolate chip cookies sitting on the kitchen counter while my wonderful girlfriend handed me the ingredients. Disability does not doom you to misery and isolation forever.

[st0rmy-sleeps]

• - - Just a Reminder - - •

In case you need it:

You’re the only one who knows what you’re going through

Your pain is “enough.” Your illness is “enough.” You shouldn’t have to prove that to be taken seriously

It’s okay to not be productive. You are not less of a person for struggling/being unable to work, or go to school, or maintain friendships

You are just as deserving of love as any healthy, Neurotypical or able bodied person

Your needs and accommodations are not a burden or an annoyance, and anyone who actually cares would do what it takes to make sure they get met

It isn’t your fault if others treat you poorly for things you can’t control, that says more about them than you

You are just as deserving of a good life as anyone else

You deserve love, and even if it doesn’t feel like it, there are people out there who don’t mind and won’t see it as an obstacle

Just because you go through something regularly doesn’t mean it’s any less upsetting/traumatic/scary

Your life is not worth less, you are still a person, and you are still alive

Even if you haven’t done anything today just being here at all is an achievement. No matter what you’re going through, I’m happy you’ve made it this far, because I can’t imagine what you’ve had to go through to get here

[chronic-lee-lizard]

MY FOREARM CRUTCHES!!

[cupidreamexe]

this disability pride month i wanna give a shout out to the people who 100% KNOW theyre disabled but have to deal with going through the tedious process of getting a proper official diagnosis. especially if youre just barely on the cusp of not quite meeting the diagnostic criteria so they dont want to diagnose you just yet. the ones who have to monitor their symptoms for months, even years, but the symptoms have melded so much in your daily life that its hard to keep track of whats a symptom and whats 'normal'.

i see you. you are strong. you are not overreacting. you are not faking it. you will get through this. you are not alone.

you are your own best advocate and you deserve to be heard.

[spoonfulofhannah]

As a chronically ill person, I’m not resting because I want to. I’m resting to avoid getting worse and because my body has given me no choice.

[seraphsfire]

any other spoonies or people with fibro/chronic fatigue/myalgic encephalomyletis/adhd/etc start just *trying* to think of the steps to a complex mental task have an immediate brain shutdown and get sleepy/fatigued/feel drugg/ed and physically exhausted immediately after doing so bc i feel like im going crazy and googling/duckduckgo-ing yeilded only like, mayo clinic articles defining chronic fatigue so. lol

[crimeronan]

been thinking about the rabies condition in writing lately, which is a GREAT post about stakes and characterization. basically exploring how if there's a 100% chance a character is doomed, then they can and will do extremely dangerous/damaging/contraindicated things for the slimmest hope of survival. which is one of my Favorite narrative devices

but while we're using health metaphors, i've been thinking about another somewhat complicated means of introducing character stakes, which i'm tentatively calling 'the autoimmune condition' for reasons that are. obvious

the premise itself is simple: the character has Something that they need to survive. they either can't live without this thing or they will lose something vital about themselves if they lose this thing. there is no replacement or alternative for the thing. what's most important are that the consequences for losing it are Extreme, rabies-condition-style

in the real life allegory, this is the immune system. which is great for being alive!

then the problem is introduced when this thing starts killing the character.

the character still needs it to live.

so: there is a 100% chance that you will die if you destroy the thing killing you. if you impair it through other means, there is a 100% chance of consequences, though the severity of those consequences is up to the author. (these are medication side effects in the real life allegory.)

if you do everything you're supposed to then you'll PROBABLY survive, but you're gonna have to play lifelong tug-of-war to balance everything, and you are often going to have to choose between two shitty options. bc there is no alternative.

this is a counterpart to the rabies condition in terms of stakes; with this condition, your character has to make complicated and difficult decisions about what they're sacrificing for their future. it's not the immediate life-and-death stakes of rabies, it's a slow decay instead.

what side effect consequences are they willing to take on?? and what are they NOT willing to take on?? where do their priorities lie in terms of symptom management?? what other solutions are they looking for?? what are they willing to sacrifice??

and perhaps most importantly: what exactly do they need to lose before they'll Accept the side effects / sacrifices that used to terrify them?? how high do the stakes need to be??

at what point is this character going to look back at the choices they've made up to this point, and realize that they no longer recognize themselves??

[cosmiccripple]

asked my friends to wear a mask around me when they're sick and now it's a big thing. i even said i would give them the mask to wear (even though i cannot afford to be providing them daily masks as well as my own) and they're objecting. i just wish they'd fucking care that their cold can derail my whole life.

[multiple-sclerosis-barbie]

saw this doll on the Lottie doll website 🥺

on April 28th I went to the hospital because within the span of a week I wasn't able to take care of myself or walk anymore.

when I got a CT scan the doctor told me it seemed like I had a brain disease. I was really scared, I didn't know what that meant, I didn't know if it was terminal or if it was cancer.

on April 30th I was out into the neurology ward and after getting an MRI, spinal tap, and x-ray the doctors there determined I have multiple sclerosis.

luckily it hadn't spread to my spinal cord yet so they put me on a strong dose of methylprednisolone for a few days, I started feeling much better and I was able to walk, eat, sleep on my back, and brush my teeth again!

it was very scary to know that if I had developed multiple sclerosis a decade or two earlier, there would be a good chance I wouldn't have survived.

but I was discharged from the hospital on May 6th and have been improving since! I already have started my treatment with natalizumab, I'm able to go back to work, able to walk to places by myself, able to shower and eat by myself, able to do all sorts of things again!

it has been a very difficult year for me, I lost all of my friends, it's overwhelming dealing with disability applications, dealing with ableism, dealing with having to call in sick often to work, feeling tired all the time, the brain fog and bad memory, but I am alive! >0<

but I think I would take that over not being able to eat or shower :')) it is awful when your tongue is numb and you can't taste anything... or when you have vertigo and double vision 24/7... or when you can't walk in a straight like and you keep falling over... 😵‍💫

I was able to celebrate my 25th birthday, go to the concerts with my dad that i had planned at the beginning of the year, I was able to go to the anime and comic book conventions with my brother, and I was able to eat my favourite foods again! >0<

I like this Lottie doll because having multiple sclerosis and going through all of these things by myself takes a lot of resilience. there is no cure for multiple sclerosis, and I have made peace with that. there's no guarantee that I will ever return to how I was before I went to the hospital.

but I am strong and brave, just like this Lottie doll! >0< she even looks like me ehehe

[rigormortisangel]

no semester is complete without me missing at least half the classes because my body doesnt work

[embracingwild]

i don't want to be sick anymore!! but i will be and can't change that so why am i complaining!! end rant

[kirby-the-gorb]