"You talk about your disabilities too much."

My name is Dani Disorder and I'm 25 years old. I'm​ chronically ill, physically disabled, mentally ill, and neurodivergent. My pronouns are she/her(s), they/them/their(s), or ~shey/shem/sheir(s)~ ———————————————— Diagnoses time: Ehlers-Danlos Syndrome. Dysautonomia. *POTS with Inappropriate Sinus Tachycardia. Intractable Migraine with aura. Fibromyalgia. Systemic Exertion Intolerance Disease (CFS/ME). Degenerative Disk Disease. Ankylosing Spondylitis. Spinal Stenosis. Spinal Sclerosis. Spinal Tendonitis. Sciatica. Sacroiliitis. Sacrococcygeal Bursitis. Piriformis Syndrome. Chondromalacia Patella. Gastroparesis. Gastro-Esophageal Reflux Disease. Reynaud's. Dysendothermia. Relapsing-Remitting Lupus. **Immunofuckery Disorder. Non-24 Circadian Rhythm Disorder. Autism Spectrum Disorder. Attention Deficit Hyperactivity Disorder. Sensory Processing Disorder. Persistent Depressive Disorder. Major Depressive Disorder. Developmental Trauma Disorder/Complex Post Traumatic Stress Disorder. Cluster B Clusterfuck?? Additional Unidentified/Undiagnosed Problems. ———————————————— *"Dysautonomia Not Otherwise Specified Heart Rhythm Disorder" which I call "Peculiar Obnoxious Tachycardia Syndrome" due to its' incredibly unique presentation/symptoms that set it apart from any documented heart rhythm disorder. **Presently unnamed dysautonomia of the immune system, which can't possibly exist according to the medical world because nobody has ever confirmed a case before, even though no one's ever bothered to do the research necessary to confirm a case.

[rimurutempest-bounced]

repost from twitter

[cogpuppy]

[ID: Cartoon of a light-skinned blind person with sunglasses, a white cane, and a yellow service dog standing next to a sign that says “IMPORTANT NOTICE” in bold red letters. Under this is a wall of black text on a white background, reading:

“I wanted to make people aware... guide dogs haven’t been trained in social distancing and queuing to get in a shop. If you see a guide dog heading straight for the shop door and not joining the queue, that is what they have been trained to do. They’re not being rude or intentionally queue jumping. Also, if you see them walking down the street, remember, they haven’t been trained to social distance, so it is up to us, the sighted people, to give them space. Hope that helps my many guide dog owner friends in these really difficult and challenging times.”

/end ID]

[illness-adnauseum]

[thatsthat24]

Dare to Compare 📏

[purplesparklybabe-deactivated20]

This is for the mentally ill people who stay mentally ill. The ones that medication doesn’t work for, or who medication only alleviates some of their symptoms, or medication makes your symptoms more managable but only just so, just enough that everything is still hard, that you can see the difference between what you can do and what other people can

this is for the people whose doctor said “this is as good as it’s going to get”

who diligently take their meds every day knowing that this is as healthy as they will ever be and get up and face the world anyway

i am so so proud of you

[firelord-frowny]

It really, REALLY bothers me when I hear people frame climate change and other environmental crises as something that everyday, average-ass people are responsible for, and not corporations and entire governments. 

Like literally, how can a regular-ass person ~opt out~ of all damaging behaviors while still being able to function in society? 

You literally can’t. 

The future of our planet is not down to whether or not someone recycles their water bottle. 

It’s down to whether or not governments and corporations decide to quit sucking up all our resources and poisoning the earth with reckless abandon. 

I mean obviously people should still live as cleanly and as sustainably as they can manage where they are and with what they have, but like. THAT isn’t the major issue. 

[lilacbreastedroller]

govts and corporations have deliberately put the onus on yr individual choices so the system can continue being as destructive/profitable

[sopphistries-deactivated2016080]

God bless this post this pisses me off so much Also this hyper-individualist shift of responsibility is largely an American thing and consumerism is framed as a solution- e.g., buy more shit that’s sustainable! That’ll fix the problem (buy a new, green water bottle! buy a new, green car! buy a new, green whatever-the-fuck that’ll just ultimately produce more waste)!

[crybabyhellbutch]

I took a course in sustainable engineering.

The professor mentioned that even if every private individual in the world were to conserve resources and the environment the ol’ Jimmy Carter way- by turning down the thermostat, recycling your glass and plastics and metals, cut down on luxuries, take shorter showers, etc., it would only get us 10% of the way to where we need to be in order to avoid global catastrophic climate change.

The vast majority of freshwater use is from industry and agriculture. http://www.worldometers.info/water/ 

The vast majority of CO2 emissions is from industrial and electrical generation sites and associated vehicles. http://www3.epa.gov/climatechange/ghgemissions/gases/co2.html

Private individuals hardly make a dent, even in ideal conditions.

[howling-fucking-fantods]

Thank you.

[cutlerydeficient]

Extra important note for spoonies. Please don’t feel bad for needing disposable medical equipment, pill bottles, long showers, micro fiber blankets, packaged pre-made food, straws, paper plates etc. You’re not individually ruining the environment, you’re doing the best you can while taking care of yourself. The blame is on corporations.

[spooniestrong]

This is so important!!!

So many things that people are leaping on bandwagons to ban ARE NEEDED BY DISABLED PEOPLE.

But no one cares! It’s just like the “Opioid Epidemic” and the knee jerk backlash to just cut them off. It’s ridiculous! It’s solving a problem by making another! But hey, it’ll make some people FEEL like they DID SOMETHING, so who cares who gets hurt? Who cares about the critical life threatening damage and death it causes? Because “Epidemic!” Because “straws are bad!” Because because because!

Because Disabled Lives Don’t Matter to Abled People.

That’s it. We’re already a burden to them. We’re already an annoyance. An inconvenience. We’re different, we’re weird, we don’t fit the mold. So, to hell with us! To hell with caring about us. Even thinking about us. Because it’ll save the precious turtles or birds or something. Because taking away everything that helps us survive is the only way to make people feel like they’re doing something about a huge problem like climate change, when it’s really just screwing people whose lives are hard enough.

[willowofthehearth]

I will forever reblog posts like this, because it’s SO fucking important.

[toadistic]

It’s also interesting how people seem to specifically target the products that disabled people need but get really darn quiet when it comes to the products that abled people just consume for fun. Somehow our lives are inherently wasteful but those of rich people who buy fuel-guzzling private jets and huge caravans…aren’t?

[themadcapmathematician]

Hey i have this cool new idea and its called “people with chronic illness shouldnt have to weed out all sugars glutens alcohol and non organic oxygen and lose 50 lbs and excercise 25 hours a day before theyre deemed deserving of help or have their pain taken seriously or are allowed to even just live their fucking lives and talk about their illness without snide comments from ableds who don’t exercise and would never give up their daily 15000 calorie frappe with enough caffine in it to kill a horse’

[therubbleoroursins]

I am currently both a teacher and a student, and I am of the apparently controversial opinion that late work should always be accepted. Not just if they have a doctor’s note or their mom’s death certificate. Not just for one or two assignments a semester. Always.

“But that’s unfair to the people who submitted on time!”

I didn’t say you had to give everybody full credit. Drop the grade for each individual assignment by 5% for every day late until it gets down to 20%. Never, ever take it below 20%.

Here’s my rationale:

1. If you are a good educator, then you created that assignment in the first place because YOU WANTED YOUR STUDENTS TO LEARN SOMETHING. You still want them to have an incentive to complete that learning experience even if it’s not “on time.”

2. You want to prepare your students for the the real world, right? Well, if you missed a deadline (for example, submitting report cards), would your boss throw away everything you’d worked on, dock your paycheck, and tell you to try again next time? No. They would be upset with you, but they would ask you to take time out of your schedule to finish the project as quickly as possible. It wouldn’t cease to exist.

3. Based on point #2, if you are teaching high school or below, not accepting late work is holding children (who by the way, generally do not have full control over their schedules or what materials they have access to) to a higher standard than adults. 

4. If you are teaching college or graduate school, you are working with adults who are taking years out of their lives and paying thousands of dollars to learn from you. Why make it harder for them than it already is?

5. You have or will teach students with extenuating life circumstances that they don’t tell you about (e.g. chronic illness, caring for children or sick relatives, abusive relationships) because they are embarrassed to share this information or have already been taught to shut up and stop making excuses.

6. You have or will teach students with learning disabilities that they don’t even know about. I was diagnosed with ADHD in high school after years of being treated like I was just a bad kid. I suffered from depression and anxiety for over ten years before I went on medication. I did not even learn the words “executive dysfunction” until I was in grad school.

In conclusion, yes, we all know that being a teacher gives you authority but that’s no reason to flaunt it by imposing restrictions that don’t exist anywhere else in the name of “education.”

[chromalogue]

All of this.  In addition, I have a private and secret policy of not even imposing late penalties.  Between poverty and an undiagnosed circadian adventurousness, my undergraduate career was one gigantic extenuating circumstance, but I was never docked marks when I turned in something late.  For me to turn around and not extend the same grace to my students would be both ingratitude and hypocrisy.  

[saaranghaeyo]

I disagree. When a child hands in their work to me, they’ve essentially made an appointment for me to mark their work. As a teacher in England my workload is so high that I have to tightly schedule exactly when and how I’m going to mark assignments. If a student hands it in late, they’ve missed my marking window and I no longer have time to mark it. And if you think I’m exaggerating, think again. I have to schedule every minute of my day, and that includes huge chunks of break and lunch, too. If a child has a genuine extenuating circumstance then I’ll just schedule a little less sleep into my day so that I can mark it late, but I’m not doing that habitually, just because. Like it or not, the majority of the time a student hands their work in late, it isn’t because of some traumatic circumstance. It’s laziness. Additionally, students in England complete external qualifications. I am not even allowed to give extensions unless the student actually gives me a genuine reason. The sooner they get used to that, the better. 

[youngandaphantommenace]

Yeah you’re probably a bad teacher and I’m willing to bet your students will suffer lasting damage from the way you treat them. Maybe find a different job.

[heyatleastitsnotcancer]

Doctor: I’ve reviewed your case and know how to help you.

Me: 

Doctor: You need to get more exercise! Try yoga

Me: 

[why-bless-your-heart]

HOSPITALS. ARE. ALREADY. REQUIRED. UNDER. LAW. TO. PROVIDE. LIFE. SAVING. EMERGENCY. CARE. REGARDLESS. OF. ABILITY. TO. PAY. OR. EVEN. CITIZENSHIP.

Stop acting like Americans have no access to emergency healthcare unless we socialize medicine.

[kyidyl]

IF. YOU. GO. AND. CAN’T. PAY. YOU’RE. STILL. THOUSANDS. IN. DEBT. THIS. IS. NOT. ACCESS.

[jamaicanblackcastoroil]

This hospital in my city just threw out a homeless man

[bankuei]

The hospital which took me in after I collapsed from the fist sized tumor over my heart, released me after refusing to diagnose it as cancer, which would have forced them to give me some kind of treatment. The doctor at the county hospital which took me in looked at their tests and said, “this is CLEARLY cancer, why didn’t they diagnose it? We can’t let you leave.”

Hospitals find ways when they want to, to avoid helping people when they want to.

“Oh that’s illegal, you should sue” “ with what money and how will I get the time and energy when I’m busy recovering from chemo?”

People who can’t afford treatment also can’t afford to protect their rights.

[landunderthewave]

Absolutely this: “People who can’t afford treatment also can’t afford to protect their rights.”

[julianunes]

“People who can’t afford treatment also can’t afford to protect their rights.”

[dansoldlife]

let it sink in “People who can’t afford treatment also can’t afford to protect their rights.”

[crazy-pages]

Can we also talk about how fucked up it is that the US makes you fund your own legal defense of your rights? Like, if you’re lucky and have the right type of case and win and the judge is kind, maybe they make the opposing party pay your legal bills. But to even begin defending your rights you need to pony up massive amounts of cash and that’s fucked up.

[illness-adnauseum]

Literally all a hospital has to do to deny emergency healthcare is simply state that they do not believe it's an emergency. That's it. "La la la I can't hear you so it doesn't count."

[heavyweightheart]

i’m very wary of the idea of “avoiding other people’s negativity”

if by “people’s negativity” you mean their projecting or attempting to transfer their own suffering onto others, or constant catastrophizing, then yeah, that’s usually best avoided

but if when you say that you avoid other people’s negativity you mean their normal expressions of grief, anger, and fear, or narratives of their own suffering, then what you’re doing is avoiding their full humanity, and likely your own as well

[spoonie-living]

Add “distress” to your pain scale

Pain scale? More like pain in the booty. No two people seem to read it the same way, and chronic folks tend to downplay their pain.

So here’s an idea: when asked to rate your pain, provide a number to rate your distress levels in addition to your pain levels.

Some examples:

“I’m at a 5 on the pain scale, but my distress is basically a 1 because this is my usual.”

“I’m at a 3 on the pain scale, but my distress is a 7 because this is new pain and affects a part of my body that’s very important to my work.”

It’s a great way to consider how your pain is impacting you—and to get a doctor’s attention where it’s actually needed.

[illness-adnauseum]

Hey everyone, here's a little 2-in-1 health update and rare disability awareness post. So, well, umm...

I am literally allergic to walking and standing.

My knees have an allergic reaction to repetitive motion and physical strain. There's nothing anatomically wrong with them that causes this, but rather my immune system sees the strain of walking and standing as threats that need to be attacked. It's very similar to a food, animal, or pollen allergy. When my body tries to attack the perceived threat, my knees get caught in the crossfire. They swell up, they itch and sting, they turn bright red, and they become extremely hot to the touch (4°F hotter than normal, 3°F high than the rest of my legs during a reaction). It's not a specific diagnosis of its own right now, so I refer to the collection of symptoms as Angry Knees when talking to the people in my life.

Compared to my other health issues, this is more of an annoyance than anything, really. I'd call the sensation discomfort, but not pain. However, as most people probably know, when your immune system attacks your own body, it does damage. This damage makes my knees more susceptible to strain during activity, which makes me more susceptible to Angry Knees attacks. It's a vicious cycle. This used to only happen with extensive running and jumping. Then any running and jumping. Then only after several consecutive hours of walking and standing. Then only several total hours in a single day. Then only a few hours. Et cetera until 30 minutes of non-sitting activity within 3 hour period gives me Angry Knees, and it's only gonna keep getting worse.

I am less than 22 years old, and I'm looking at a double knee replacement by the time I'm 30 if I can't get this to stop. None of my doctors can figure it out, so I basically have to stop walking and standing. I have to get a wheelchair. But because my arms are also pathetic, it's gotta be a power chair and it's gotta be ultra lightweight. That means I'm looking at a $2000-2500 chair. It also means I have to move into a fully wheelchair accessible home because I can't even stand to cook in the kitchen or to brush my teeth at the bathroom sink. But I can't afford to do either right now, and I don't qualify for any financial assistance because technically my Angry Knees do not yet impede my ability to walk, and because I have no diagnosis that explains them, and because I'm not on SSDI yet because [screaming eternally into the void].

There's no point in asking for money because I know it'll never be enough, but if anyone knows of cheap but decent chairs or home accessibility quick fixes or diagnoses and/or treatments to look into, I'd appreciate it.

I just hate that I live in a world where any rich ablebodied asshole could buy their way into never having to walk again without a single doctor's note while those of us who can barely get out of bed because our legs don't work have to just fucking deal with it because we're poor.

[illness-adnauseum]

holiday gatherings be like

[maaarine]

MedCircle: ADHD: How Is It Different from Normal Lack of Attention?

“If you can come up with novel ways to make it interesting, they can do incredibly well. They’re fully capable of doing everything that we all can do, but you may have to present it in a different way.”

[qcrip]

not to be that guy but any space that provides medical treatment should be required to be wheelchair accessible 

[crimeronan]

im tired of “psychic powers misdiagnosed as psychosis” stories instead i want actual psychotic characters with psychic powers being constantly irritated as fuck because they cant tell whether their visions are prophetic or hallucinations and if the chosen one thing is a delusion of grandeur or not

[manslauter-er]

They have a portal that leads to a fantastical world in their closet, but they don’t know if it’s real or not. It could be, but it could also be their brain screwing with them by taking forgotten bits of that one time they read Narnia. They low key sometimes throw trash through it and it seems to disappear but also sometimes it comes back like wtf is this, make up your mind fake portal.

[crimeronan]

their best friend comes over and is like holy FUCK dude narnia’s in your closet and they’re like lmao i know and the best friend is like what?? and they’re like i told you about that hallucination right?? and the friend is like no narnia is literally in your closet and they’re like SHIT DUDE I’VE BEEN IGNORING IT FOR MONTHS BC I FIGURED I JUST NEEDED TO ADJUST MY ANTIPSYCHOTICS

[manslauter-er]

They go to their doctor and say “yo I don’t think my meds are working, cuz a giant black wolf is following me around and crowd keeps appearing????” Their doc just looks at them. “So that’s not your dog then?” “Oh shit, it’s real !? So it HAS been stealing the food from the fridge!”

[crimeronan]

i’m so here for a psychotic chosen one who ignores all budding signs of magic because they’re just like “yeah, same shit As Always”

[stream]

Avengers: Infinity War (2018)

[illness-adnauseum]

Doctors trying to put me on treatments intended to improve some of the problems I'm quite used to which fall within their specialty but are likely to worsen other problems I'm barely coping with which fall outside their specialty

Doctors denying me helpful medications over associated abuse and dependency risks that I have no history of when there are also risks of comparable threats to my mental and physical health that I do have a history of which are associated with the issues at hand going unmedicated

Doctors refusing to document my symptoms as I describe them in favor of reductive shorthand to avoid wasting their invaluable healthcare-providing time only to make me elaborate on my initial concerns during every single follow up just to rush through the provision of my healthcare as to not fall behind schedule