Invisible Disability - Blog Posts

accommodations

knowing something to be true and feeling like something is true should logically be things that always go hand in hand together, but frustratingly enough feelings aren’t things ruled by logic and so this doesn’t always happen. one of these things that I can’t achieve any kind balance between is me knowing that I deserve accommodations and me feeling like I absolutely do not deserve them.

it’s just that when you have been taught your entire life that if you have the ability to do something on your own, you do not deserve any help making it easier to achieve, it becomes very hard to let go of that lesson even when you know it wasn’t factual. it’s too deeply hammered into you that only the helpless deserve help, so if you can do anything without help you’re obviously not helpless and obviously don’t ever deserve help.

but I now know this to be wrong

and as for what I know to be true is that there is no point in suffering.

there is no merit to taking a perilous road to reach a place you could have reached with another path that won’t force you to pay the toll with anguish.

exhausting yourself to the point of not even being able to appreciate the view of the mountain you climbed is pointless. 

pain is not a virtue. 

not only the mythical helpless but everybody deserves and needs help sometimes. you needing help more than the majority needs it isn’t a moral failing. 

always giving everything 101% of your best is not the rent you pay for being alive. 

living is hard enough without disabilities and illnesses, you shouldn’t make it harder on yourself by not grabbing onto infrequent given opportunities (and unjustly infrequent might I add!) to level the playing field.

I feel wholeheartedly that you deserve accommodations for your disabilities and illnesses be they mental or physical or what have you. I'm looking forward to day I feel wholeheartedly that I deserve them to.

but for now knowing is enough.

recently I've started using the word disabled to describe myself and my autism and I've noticed how uncomfortable it makes people without disabilities. they get this palpable aura of disapproval but they’re too scared to say they dislike how I label myself. and I can’t understand why ya know. do they think I'm insulting myself by saying I'm disabled? the only reason I can think of why they think “disabled” is automatically an insult is that deep down they have linked “being disabled” with “people that always will be less than quote-on-quote normal people no matter what circumstances.” of course you’ll view the word disabled as an insult if you think being disabled is the worst thing you could possibly be. I dunno know it just hurts to think about how the people around me view disability, and by extension me. and it’s even more crushing to know that people with visible disabilities must experience this type of unspoken discrimination way more.

Why does ADHD have to be so hard?

I just wish I could study without chronic procrastination!

Or get myself up in the mornings without assistance.

Or have people understand that ADHD isn't just "quirky little gal" disorder.

It's funny, I get kind of surprised when my diagnosed disability disables me-

I'm working on my graduate thesis at Delta State University (fear the Fighting Okra!) and I'm looking adults with disabilities to take part in an online survey. The survey will probably take 15-20 minutes to complete and it's about how social friction is perceived in interactions between disabled and able-bodied people. So if you're 18 or older and self-identify as disabled or partially-disabled, I would love to hear from you on the survey:

"Let Me Get That For You": Analyzing Frictional Situations in a Disability Context (via Google Forms)

This research survey has received approval (IRB number 2025-037) from Delta State's Institutional Review Board. It will be live and accepting responses for the next 4-6 weeks depending on the number of responses received. But there's also something for you!

The survey itself is anonymous, though you can optionally enter a drawing for an Amazon gift card at the end of the survey. I can't buy a gift card for every response (as much as I would like to be able to do that) but I can give away a token of appreciation to a randomly selected portion of you. Email addresses are collected only for those who wish to participate in the raffle; any collected emails are deleted after each weekly drawing and only used to contact whoever won that week.

If you have any questions about the project, feel free to send me a message on tumblr!

I stand in front of a crowd and tap the microphone. "Disabled people deserve full bodily autonomy," I announce, and the crowd devolves into shouting. I am being asked about every single contingency in which bodily autonomy can possibly be taken away. I am not allowed to ask these people why they want so badly to control disabled people's lives. I am a representative, after all.

A man in the third row calls me a whore. A woman up near the front calls me a filthy god-hating anarchist. I am the villain of the story. I'm ruining their childhoods when I point out the flaws and ableist tropes in media that I never said they weren't allowed to enjoy. I'm policing their language when I ask them not to use slurs.

Someone else calls me a fascist. A Creationist with Calvinist leanings is using the same arguments against me as the literal social Darwinist. The topic of "faking disability" is brought up and everyone suddenly has a story to share and presents it to me. I am horrified by most of these stories because they feature ambulatory wheelchair users being harassed and young people with invisible disabilities being chased out of bathrooms.

I tap the microphone again and announce, louder, "Autism speaks is actually a hate organization." At this rate, I'm never going to get to my powerpoint on the social/medical model of disability and why the intersection is important. But I am a representative, and in between the name calling and accusations, they are asking me questions. And so I answer.

I recently started using a cane everyday and so my previously invisible disability is suddenly visible. I also started medschool. It's been a while since I was properly social so I have questions...

People don't walk next to me. And if they accidentally do, they leave to walk next to someone else even if that means squeezing in three people on the sidewalk. No one talks to me if it's not to ask me "what's wrong". I have really tried to make an effort and talk to people but I don't know what to do.

Can it have something to do with my disability and my cane? Like they're scared to say the wrong thing? Or maybe it's because they've sensed the autism?;)

yay a post about arthritis! thank you!

Seeing people say that arthritis isn't disabling in the year 2023 sure gives me some. . . not great feelings. Like yeah, cool, thanks for completely undermining the decade or so of horrible pain I've experienced, my gradual loss of mobility, the constant fatigue and confusion (because rheumatoid arthritis affects more than just your joints!), the ableism I've faced from everyone in my life, and the degradation of my fine motor skills as the pain in my fingers and wrists especially gets worse and worse.

Also the ageism in it. . . "My grandparent has arthritis, that doesn't make them disabled." Idk how to tell you this bud but pretty much every elderly person in the world is disabled in some way because bodies break down and start doing weird shit naturally. Sorry that you see aging and disability as inherently contradictory but it's not my fault that you're so determined to gatekeep the label of "disabled" from people that you can't show even a bit of compassion to people whose experiences are different from yours.

Anyway @ fellow arthritic people I know this sucks so fucking bad and that no one takes us seriously but I promise you are not alone ily 🪻

Happy Disability Pride Month to people...

Who have been diagnosed and been on treatment...

Who have not been diagnosed, but WANT treatment...

Who have been diagnosed, and know almost everything about their condition/disease/disability...

Who have not been diagnosed, and barely know their triggers or how it started...

Who talk about their disability, and make it a part of their identity...

Who don't talk about their disability freely, and might be too scared to make it part of their identity...

Who have been on a long and hard struggle and finally, FINALLY got into remission...

Who are still trying to get into some 'better' state...

Who have an invisible disability and don't 'feel disabled enough'...

Who have an invisible disability that has been over-dramatized and hear jokes about it constantly...

Who have been in remission for a while, and don't feel like 'enough' while talking to disabled peers...

Who have not been diagnosed, and sometimes feel like their experiences 'aren't enough' to warrant the disability...

Who have a physical disability, but didn't realize the mental toll it would have on them...

Who have a mental disability, but didn't realize the physical toll it would have on them...

Who got diagnosed rather young and have lived with their disability for most of their life...

Who are only just learning how to cope and live with their disability...

Just like me.

Happy Disability Pride Month, ya'll!

Yeah I met someone who had an invisible disability like me and they had just gotten steroid injections into their knees so it was really painful, so they were using the disabled spot on the bus but a whiny lady came up and told them they couldn't use it??? So they had to argue with this lady all along the bus ride about what in invisible disability is.

using disabled stalls, seats, and parking spots without needing them is not innocuous. these aren't just things that make disabled people's lives easier (although that's reason enough). they prevent us from being injured or in distress, and allow us to take care of our needs. removing our access to that can put us in danger. stop it.

also, to the invisibly disabled people reading this - including mentally ill and neurodivergent people - if you need these accomodations, please continue to use them. your needs matter. do what you need to stay as safe and healthy as possible.

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!

This is probably asking a lot, especially because it comes out of nowhere, but I figure if this story is gonna get even an ounce of traction, it'll be on timblr.

I'm a disabled, fat, queer, neurodivergent author who writes about disabled, fat, queer, neurodivergent characters and topics.

My current project, Passing for Fine, is about an agender ex-athlete named Jessie who develops fibromyalgia after a traumatic accident. They end up gaining weight, being totally abandoned by their teammates and people they thought of as friends, and moves to a new city to live with their overbearing, perfectionist mom.

While in this new city, Jessie meets a cadre of new friends who all, in one way or another, fall between the cracks, or don't fit the mold you'd expect.

Ryan is an ex-felon turned baker (literally looks like he could kill you but is actually a cinnamon roll) who struggles with the way he's percieved due to his plethora of tattoos (some of whoch are pretty scary). Ash is a wheelchair-bound transman who works at a gym and is the only one of the group who owns their own vehicle. Alexis is a Black woman who helps manage the local community garden and co-op but struggles to feel welcomed in Black spaces due to her lighter skin tone. Eddie is a non-binary phlebotomist who struggles to be taken seriously as a non-binary person due to xir masculine appearance.

Ultimately, it's supposed to be a rom-com, but the story also deals with Jessie's depression, internalized ableism, and self-doubt (all of which they work to overcome/adjust to/live with throughout the story) while they are also helping to save Ryan's café from gentrification and over reaching landlords.

I'm currently in the process of my second draft, but was thinking if enough people seemed interested by this initial post, that I'd start posting chapters here, too.

The cover was made by Carmilla from carmillacreates.com

[cannot find the photo credits; if anyone knows the artist(s), please help me credit them. I am so sorry]

I'm heading out to the backyard to prep my garden beds for the spring. Gotta get them prepped before the frost hits so that by the time the last frost date hits, they'll be ripe for transplanting my starts.

I think there's something to be said about working with your hands, when able, and being outside whenever you're able, as well.

I have fibromyalgia, so I can't always get outside when I want to, but I'm fortunate enough to be able to when I'm having low-pain days (like today).

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

I get to go to the doctor and be tested for different things. Joint pain really hurts and brain isn’t working right now. Mom thinks I have arthritis but only 22 years old. I know arthritis happens to all ages, just sad. I’m worried if I can write still. Can I draw still? Good news tho! I’m getting a forearm crutch soon. Might help more than a cane. Been using cane for a while, want more stability though so figured arm crutch? I’m sorry if this doesn’t make sense, I’m struggling with words right now.

Also, if I’m putting wrong tags, let me know. I’m sorry, I’m trying

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.