Invisible Illness - Blog Posts

this month is july, yall know what that means…

Art fight! …..

Okay, not just that….

Fourth of July?

Well, yeah, that is part of it, but I’m actually referring to

Disability Pride Month!!!

To everyone (but especially other disabled folks);

Whether your disability is physical or mental, visible or invisible, cureable or uncurable, professionally diagnosed or not, or something you’ve been grappling with for a while or just recently…

Always remember these things!:

You are just as valuable, worthy of love, and deserving of respect as non-disabled folks;

There is no such thing as “not being disabled enough” to seek out the support you need;

It’s very okay to ask for help— you are not weak for doing so;

You are not lazy, useless, or a failure for merely experiencing the symptoms you experience;

Your life is not inherently less meaningful or fulfilling, just because you’re unable to do as much as a healthy person;

I’m very proud of you all for pulling through and getting to today, even with all the struggles (yes, even if I’m a stranger to you /gen)

I hope you all have a wonderful July and beyond! Be sure to take care of yourselves and be kind to yourselves!

The Premium Package: Bonus Round

Bloodwork came back positive for GAD65 antibodies. So now my rheumatologist is assuming not just neuropsychiatric lupus, but also Stiff Person Syndrome and GAD65 autoimmune encephalitis, based on my imaging and other test results.

I guess we’re just collecting neuroimmune disorders like trading cards now. Got brain fog? Muscle spasms? Random hallucinations? Congratulations, you might qualify for the rare holographic edition.

At this point, it feels less like getting answers and more like unlocking increasingly cursed DLC. The collector’s set is not supposed to be this complete.

Welcome to the Premium Autoimmune Package

Hi. I’m not new to being sick, but I’m very new to being taken seriously. That only happened because my body is currently collapsing fast enough that doctors couldn’t look away anymore.

I live with overlapping autoimmune diseases, but recently I got upgraded to the “CNS involvement” tier. Think brain inflammation, spinal pressure, hallucinations, cognitive fog, and one healing spinal fracture I didn’t even realize I had. I thought it was just my usual back pain. Turns out it was… a broken bone.

I’ve been hospitalized twice in the last month. A spinal tap showed my brain pressure was way too high, 32 cmH₂O, where normal is typically between 10 and 20. My spinal fluid was full of immune cells , 40% of them, when 0–5% is normal. My MRI has white matter lesions. It’s not MS. It likely neuropsychiatric lupus. It might be a weird intersection of multiple things. No one’s totally sure yet.

What I do know is I’m on IVIG now, possibly headed for a brain shunt, and trying to stay out of the hospital. Also, I’m trans and had to pause testosterone because of clot risks from treatment. No, there’s no workaround. Yes, it sucks.

This blog is my space to document what it’s like to be visibly declining after years of being invisibly sick. No pity required. Just here to tell the truth about what it’s like to have the Premium Autoimmune Package, full access unlocked.

Current Working diagnoses:

• Neuropsychiatric Lupus (NPSLE)

• Myasthenia Gravis

• Psoriatic Arthritis

• Intracranial Hypertension

• Ehlers-Danlos Syndrome

So true. I'll show up to the hospital (and it's bad if I'm at the hospital cause I'm broke ), and I will always, without fail, rate my pain firmly in the middle. Anywhere from a 4 to a 6. Cause like, it could be worse. It has been worse. And yet, here I am.

This is a good way to explain the specific type of disheartening it is to receive "good news". It's not that I want something to be wrong with me, it's that something IS, no matter what the fucking blood work says.

Aggressive Elder: Kids these days have no common sense! This generation has no critical thinking skills!

Me(19 and suffering from cognitive dysfunctions such as heavy brain fog, delayed reactions, memory issues, etc.):

Yes.

Chronic pain and illness really do skew what you consider to be normal.

I'm complaining to a friend about two separate pains I've got going on right now, pains which I would categorize as "annoying," and "distracting," and she's freaking out, like, "Go to the ER!!!!" and it's like, oh, that's right. Normal people go to the ER when it hurts to breathe.

Anyway...

(Just to clarify, I'm, like, 90% sure it's costochondritis, and I'm not actually struggling to breathe. It just feels blegh. The other pain is more distracting and potentially an issue but we'll cross that bridge if we get to it.)

why is accessibility so inaccessible… someone explain how this is supposed to make sense

anyone who thinks health issues end with walking out of the hospital doors, massive reality check for ya. there is no clocking out of chronic illness or disability.

surgery does not cure everything, medication does not cure everything. hospital cannot cure everything.

the amount of people in my life who believe that when i go to hospital, i will be discharged cured or symptom free is astonishing to me.

most of these people have known me long enough to have seen me through multiple hospital admissions and every time they come back to this way of thinking even though its never happened.

one of the worst parts for me about chronic illness is not having answers.

im a very logical and analytical person i love things to make sense i love patterns and reasons.

i have answers for pats of my health, and im so grateful for that, but the parts that i dont have answers for haunt me.

i think about it all the time. what if its not real and thats why theres no answer? what if im not explaining my symptoms right and thats why i havent had the right test that would give me the right answer.

i know logically that its a waste of time to think about, but i cant help it, i obsess over it. not understanding the world is one thing, but not understanding my own body? my own life? thats what gets me.

notalgia is so strange because what do u mean i long for things that remind me of the worst times of my life?

ITCHING to do stuff. ANYTHING lemme cook or clean or write or sew or draw anything please im so bored

reminder that productivity doesnt equal worth because i am forgetting this at the moment

I MISS MY HOBBIES 😭😭😭😭😭

im on day 39 of a migraine, hospital have given up on me, makes it hard to not give up on myself.

people dont understand the boredom of being disabled.

i see a lot of people suggest to people to embrace boredom and creativity will come from it. that to improve your attention span and get your life back from the trap that is quick form media you need to be bored more.

but i dont think that is the case for many disabled people.

its not the case for me.

i am SO bored. EVERY day. i cannot do all the things i want to engage in. i cannot play games i cannot read i cannot do art i cannot bake. these things arent being stopped by a social media addiction, they are being stopped by my health.

and my attention span isnt struggling for the same reasons as many abled people. mine struggles because of my symptoms. my fatigue, my pain, they are distracting and fog my brain.

so disabled people, when youre looking for tips about how to improve your attention span, and engage in your hobbies more, keep in mind that the reason for your struggles may be completely different to the people who are sharing suggestions and tips on the topic.

THIS its so important to understand that while yes absolutely we need support and funding for sick kids - these same kids will likely still be sick as young adults and need support then too.

I feel like people forget that pediatric illnesses generally last into adulthood like…childhood cancer survivors often have medical complications for the rest of their (adult) lives. My juvenile arthritis will be around when I’m 75. Crohn’s disease, cystic fibrosis, congenital heart defects - all of these things, when acquired in childhood, have lifelong complications. Childhood diseases aren’t just cute, happy kids smiling from hospital beds. Theyre pain and suffering and learning to live differently forever.

i want my life back fuck being ill.

its hard to think about world issues when most of my world is just trying to deal with my health.

my world feels so complicated and big and demanding and exhausting.

and then trying to think about the 8 billion other people living lives.. many in countries where there are political wars or genocide or severe environmental damage etc.

its overwhelming.

really struggling with this atm.

ive lost all the strength i fought so hard for the past two years. it doesnt seem fair that it can all be taken away so fast.

im exhausted. trying is exhausting.

disabled consistency prt. 2 prt. 1 here (u dont need to read it to understand this post)

what happens to consistency, to habits, when you have a dynamic disability?

i want us to understand the differences between having a consistent body and having an ever changing one. sometimes you could be so healthy you are working/studying, exercising a few times a week, socialising, and independently caring for yourself. but other times.. you’re bedbound? can’t even shower and brush your teeth twice a day? can’t keep up with texting your friends or social media? what habit is surviving that.

you work so hard to build habits and follow routines you and your doctors have set, and then you achieve it, but then it all gets taken away in a flare-up. you wonder what the point is. its a constant vicious cycle. even abled people know its hard to build habits. it takes time. and you might not have that time.

for abled people, theres no time limit on building a habit. they might have a goal in mind of when they want to achieve it, but theres no actual clock ticking in the background.

for me, and for other dynamically disabled people, we are on a time crunch. you may not be aware of it, but you are. it’s always a race to get things done while you can, build those habits and routines and get consistent and get your life together while you can. because even if you’re not thinking it, you are living on a countdown until your next flare-up. until the next crash, the next time you lose all your progress.

and that cycle, is exhausting. it’s like building a sandcastle right on the shore. you build it and you get to revel in it for a second. then it’s gone. there may be a little bump in the sand where your hard work had just stood, but essentially, you are starting from scratch. while the abled people are up the beach a few metres and their sand is perfectly wet and perfectly dry and the waves never reach it.

then those same people, tell you to just keep building. “eventually you’ll get there!” “keep trying!” “habits take time!” they say. but how? there will always be another wave.

understanding this difference in experience is so important if you want to understand why you can’t just tell a disabled person to form habits or be consistent and expect results.

disabled people!!!

what are some illnesses/disabilities that youve never seen representation for and would love to see?

let me know in replies reblogs asks messages whatever suits you :3

i really cannot understand how people see disabled life as this glamorised lazy life. i genuinely cannot wrap my head around this.

how could ANY of what i go through be seen that way i just dont get it.

disabled consistency prt. 2 prt. 1 here (u dont need to read it to understand this post)

what happens to consistency, to habits, when you have a dynamic disability?

i want us to understand the differences between having a consistent body and having an ever changing one. sometimes you could be so healthy you are working/studying, exercising a few times a week, socialising, and independently caring for yourself. but other times.. you’re bedbound? can’t even shower and brush your teeth twice a day? can’t keep up with texting your friends or social media? what habit is surviving that.

you work so hard to build habits and follow routines you and your doctors have set, and then you achieve it, but then it all gets taken away in a flare-up. you wonder what the point is. its a constant vicious cycle. even abled people know its hard to build habits. it takes time. and you might not have that time.

for abled people, theres no time limit on building a habit. they might have a goal in mind of when they want to achieve it, but theres no actual clock ticking in the background.

for me, and for other dynamically disabled people, we are on a time crunch. you may not be aware of it, but you are. it’s always a race to get things done while you can, build those habits and routines and get consistent and get your life together while you can. because even if you’re not thinking it, you are living on a countdown until your next flare-up. until the next crash, the next time you lose all your progress.

and that cycle, is exhausting. it’s like building a sandcastle right on the shore. you build it and you get to revel in it for a second. then it’s gone. there may be a little bump in the sand where your hard work had just stood, but essentially, you are starting from scratch. while the abled people are up the beach a few metres and their sand is perfectly wet and perfectly dry and the waves never reach it.

then those same people, tell you to just keep building. “eventually you’ll get there!” “keep trying!” “habits take time!” they say. but how? there will always be another wave.

understanding this difference in experience is so important if you want to understand why you can’t just tell a disabled person to form habits or be consistent and expect results.

fellow LSN disabled people, this is coming from a place of much compassion and love. i hear you when you say you’re jealous of MSN/HSN people’s support. how you wish you could have such support. mental health is complicated and it’s hard to see through emotions and trauma.

but i really need you to understand that our higher support needs disabled friends aren’t inherently privileged for having said support. while it may be that if you had that same support your QOL would improve, they most likely need the support you’re jealous of to literally survive.

the point i really want to make here is there is a difference between support for QOL and support to SURVIVE. people die without these supports. that is not a privileged position to be in.

you’re allowed to be upset and angry that you don’t have the life you want and deserve, but please focus those feelings on society and governments. because they are the ones that created a world in which it is so hard for us to exist.

we need to be friends to each other, not throwing around misdirected anger and blame. please take time to listen to MSN/HSN disabled people and learn about their experiences, there are so many people out there begging to be heard.

this i always feel like theres basically two versions of “cant” because sometimes people say cant and they dont actually mean that.. they just mean its hard. and then they assume i also mean its just hard.

it genuinely so. so. no even have word for it. so profoundly exhausting that anytime any disabled person talk about can’t do something—full, wholeheartedly can’t, absolutely can’t, under no circumstance can, if no one help them or do it for them it not get done n they suffer whatever consequence include dying—that it always get FLOOD by so so many “same it SO hard for me but no one help so have to force do by self” n “am i? actually? not low support needs? because all these stuff u talk about so hard for me too n no one recognize it so have do it by self :(“ like you all not get it n not even know you not get it n not sure you all even capable of get it, n, ironically this time do mean, that genuinely, absolutely, no matter what happen, can’t

guys what wards do young people go to, im always the only young adult in my wards, im clearly missing out on the cool areas 😔😔

oh my god i had no idea these were a thing maybe i could bake again 😭😭😭

If you're ambulatory and struggle standing to cook, consider a "perching stool" for the kitchen. They're made to make cooking safer and easier for disabled people and there's a lot of different kinds. I wish I had known about these when I could still stand.