an idea

abstraction trapped in a decaying human body

[amvs]

Do you know what interstitial cystitis is?

yes

no

Voting ended onNov 2, 2024

I wanted to make another informative post about interstitial cystitis as I realized I forgot to in September, which was IC awareness month (thank adhd)

What is interstitial cystitis?

Interstitial cystitis is a chronic pain disorder that causes pain in the bladder (and sometimes pelvis) as well as pressure in the bladder and pain while peeing.

It also includes an increased need to urinate — there are individuals with this disorder who have to pee up to 60 times per day. Some people also experience pain with sex or increased pain during menstruation.

The disorder is often mistaken for a UTI or other infections at first.

A good chunk of people with IC have other similar disorders alongside it in nearby areas, such as endometriosis or IBS.

TL;DR it’s like IBS of the bladder, kind of. You can read more here. There is no cure and the cause is unknown. There are medications and surgeries that can potentially decrease symptoms.

What issues do we face?

Lack of public bathrooms impacts the ability to travel.

Having to pay to access a bathroom because it is customers only, which results from the above.

The disability is often invisible (depends on severity) which leads to judgement and misunderstanding.

Symptoms can greatly increase difficulties at the workplace if accommodations are refused.

There is a ton of medical misogyny both interpersonally and structurally due to many patients being women. This also contributes to a lack of research.

Many people aren’t aware of what the disorder is, even in disabled communities, which can lead to very frustrating situations and conversations.

Being stink-eyed at for having to get up multiple times during a show, proceeding, etc. I understand this can be frustrating, but in my opinion this comes down to venues needing to provide accessible seating on the aisle side close to more bathrooms. It’s not our fault.

Everything else that comes with ableism.

How can you help?

Spread awareness. When organizing community events, make sure there’s an accessible bathroom nearby. Don’t judge people for going to the bathroom repeatedly. Basically, just keep us in mind and be nice.

It would mean a lot to me if people could spread this information.

[tootiredtbh-deactivated20241110]

did you know that approximately 20% of people on the schizophrenia spectrum never hear voices?

also: 20% may never experience any hallucinations at all.

it's really important to mention because not knowing that really hindered me in accepting my diagnosis, and it's likely that there are others out there on the schizophrenia spectrum who may not realise it or accept what they're experiencing (a common thing for people w/ schizophrenia).

i thought that in order to be schizophrenic you needed to constantly hear voices, like my uncle (and like the media often represented), so i kept denying the diagnosis when my psychologist, doctor, and later a psychiatrist, were trying to convince me that it's what i have.

even when i felt like maybe i had accepted it, i was still also really dismissive and in denial because of such a lack of public awareness over how much it really is a spectrum condition.

i experience auditory and visual hallucinations when i'm under stress (and am very sensitive to even the slightest stress too), but overall they are certainly not what i consider my most common symptom.

paranoid delusions, cognitive problems, as well as avolition and what's called the negative symptoms of schizophrenia, are what i experience every day.

hoping that maybe speaking about this will help raise awareness about how people's experiences can be different.

[kelpforestdwellers]

remember: don't chase the pain. if you're lucky enough to have access to an adequate supply of painkillers, use them early. if your pain is episodic, not continuous, hit the pain as soon as you notice it and your chances of avoiding a bad episode improve.

if you wait around to see if it gets 'bad enough' for painkillers, you're more likely to end up in a lot of pain that's difficult to control.

the tricky part is, if you do it right, it feels like you did it wrong. because if you catch the pain early before it gets bad, it often feels like 'it never got that bad so maybe i didn't need the medication.'

but it didn't get that bad BECAUSE of the medication! you did it right. it's okay to use the tools at your disposal. fuck the stigma.

[soberscientistlife]

Where are the Anti-Trust laws when you need them?

[tparadox]

Thank the Chicago School economists for that. They spent a stupid amount of money to take judges and legislators to resorts and tell them that trust busting was an entirely wrong approach to antitrust law, the real metric of if a merger was bad wasn't "will there be less competition", but "will it hurt or benefit the consumer, and the only one you need to bother asking is the company that wants the merger."

At this point they barely even bother asking, just of course it's a win win.

[evilios]

I need you to understand that people-pleasing behavior isn’t limited to any specific group of mentally ill individuals. It’s a trauma response that can happen to any of us.

Narcissists can be people-pleasers too. Hell, a lot of us are because both NPD and people-pleasing behavior aim for the same thing: to get a positive reaction out of others. It might not seem obvious but a lot of us, despite the myth of grandeur we’re expected to perform, are actually very pleasant individuals to be around - sometimes even the “best people you get to meet”. Because a lot of us aim to please you for our own comfort. Because a lot of us are traumatized into being perfectionists and do-no-wrongs that need, crave positive affirmation for our behaviours.

This is one of many reasons why people with NPD become victims to emotional abuse so often and why so many of us have high chances of being trapped in toxic relationships: the fear of being imperfect in the eyes of another, as ridiculous as it is, is a terrific obstacle to overcome. It’s exposing ourselves to potential vulnerability, to judgement, and to a chance of a crash.

[hottyrant-deactivated20230723]

I feel like posts such as "people with no empathy aren't killers and abusers" are more for NTs rather than people with no/low empathy. Idk about you but those absolutely do not resonate with me. Duh, I'm not a serial killer or a monster. I don't know why you would focus so much on this one stereotype of aspd/npd/anything else that is connected to low empathy. Thanks for trying to do some good for us though?

[the-idea]

yeah I'm much more interested in like, how people with low empathy interact with and experience the world, beyond just "we're not monsters!"

[spaghettioverdose-deactivated20]

There's only one real way to categorise disorders and it's when you google it and the first results fit into one or more of the following categories:

1. "Is your child-" "Does your child-" "How to cope with the burden of being a parent for-"

2. "How to get better: Step One: have a lot of money!" "How to get better: Step One: simply stop having it!"

3. "10 Ways To Spot Sickopaths With This Disorder So You Can Protect Yourself" "The Bad People Disease -by Dr. Eugene X."

[loving-n0t-heyting]

Leo kanner: so there’s this weird tendency I’ve noticed among my subjects suffering from my newly discovered Smart But Detaxhed From Ppl Disease that their parents come across as kind of cold and obsessive, but the disease itself seems to be at least largely biological in origin… wat mean?

Some fucking idiots unfamiliar with the concept of “hereditary traits”: so what you are saying is moms not hugging their kids enough makes them into mental defectives

(Bc not everyone is blessed with reading comprehension: no, autism is not a disease or mental defect but this was essentially the attitude of kanner plus responders)

[five-thousand-loaves-of-bread]

“i fail to understand how autistic people are simultaneously seen as struggle w empathy and have a strong sense of justice” said as if it’s a gotcha. look at these these silly silly ignorant neurotypicals contradicting themselves 🙃

hi i am autustic i have no empathy i also have a so called “strong sense of justice.” we exist. what you say is not a gotcha. it just shows how shallow of an understanding of autism is.

if you’re an autistic w high empathy, great! stop punching down at autistic w low empathy or people w low empathy in general.

are you saying people with low empathy don’t have a sense of justice? that we don’t know right from wrong? people with low empathy are incapable of justice? people w low empathy are always criminals or bigoted? that we should just all be locked up? because even if you never explicitly said that, your rhetoric aligns with the rest of people who perpetuate ableism at autistics with low empathy and people w cluster b personality disorders. it can easily be extended.

people need to learn the difference between empathy, sympathy, and compassion.

also, a strong sense of justice isn’t even a great way to put it. autistics online in social justice circles throw this around as if autistics are immune to propaganda and prejudice. as if autistics are always good and pure.

overwhelming amount of incels are autistic men (esp those who is/would be diagnosed as having asperger’s).

strong sense of justice just means many of us, when we believe something, we believe something very strongly. similar to how when we like something, we like something very strongly (special interest). when we feel something, we feel something very strongly (or the opposite).

if your only experience w autistic people are autistic people who are late dx, lower support needs, speaking, and **in social justice circles with the same belief as you**, you can’t reach a conclusion about all of autism based on this very narrow experience of autistic people.

[five-thousand-loaves-of-bread]

also. the same autistic people who uses this “strong sense of justice”. are the same people who will say the most vile shit about actual high support needs autistics, people with ID, people w low empathy, people w schizophrenia spectrum & psychosis, ppl w AsPD HPD BPD and honestly any personality disorders. or any people that vaguely disagrees with you.

[void-ant]

[agentukelele]

I think there needs to be positivity and support and help for people with Munchausen’s. I don’t know enough about it to make any myself, but heres the bare minimum I suppose

You’re not a bad person for having Munchausen’s Syndrome. You’re not some Harmful Faker Making Things Harder For Everyone Else. You’re included in the Everyone Else who needs help and support, and I hope you get it.

If anyone else knows important things to add, please do

[No “but By Proxys hurt people!” Thats literally not what this post is about]

[whalesharkpasta]

Also its insane to me when people think i am or Im saying I am severely autistic or severely intellectual disability or that I cant read or cant speak or need to use AAC or stuff because i talk about it and care about it and say its important

I will say that i only really talk about autism and developmental disability because that is the only stuff I really know about I dont know stuff about mental health and i dont know stuff about physical disability or blind or deaf because that is a different type of special ed to what I was in but I know about and grew up with people with mild and moderate and severe and profound developmental disability so that is what I know about

But about what I was saying yeah Its insane people just decide i am those things or that im saying im those things because I care about it. I can care about people who have things I dont have. And I talk about it because a lot cant.

[the-idea]

well I appreciate a lot that you're talking about it, because not enough people do

[neroushalvaus]

Koko the gorilla didn't know ASL but, like, you could say that without invalidating the existence of speech-supporting signs

[whalesharkpasta]

<- post tags

Yeah that post was bothering me and i couldnt say why but yeah this bit especially

Where people are saying thats not communicating and its just repeating words dont under stand for hope for get it

But those things both are sound exactly like things i signed as a kid and said before and in speech therapy and i still know and go to school with people who are severely disabled and still speak or sign like that even after years of speech therapy and people who saying or signing that would be AMAZING amazing communication people be so happy manage that functional communication actually able to express that hungry or that give me orange

Idk it makes me sad i get its not actually sign language or not fluent sign language but that is communication and it makes me sad to people say its not cause even though for me that was more how i talked natural as a kid didnt need taught for some people i known its take years and years and years and intensive speech therapy to get to be able to say or sign like that and amazing effort and proud of them for able to communicate how feeling or what want even if not use grammar because the meaning is more important than the grammar how can the grammar even MATTER when after years of trying u kid who u never under stand can TELL u THEM SELF what theyre thinking and feeling!!!!????? How amazing how long u waited and hoped that one day they would be able to do that how proud and happy and relieved that they CAN!!!!??? How amazing!! How relieved and happy u kid must be to be able to say what they want or think or feel after a life of having every thing want to say trapped inside u head and frustrated and only ever get to have people guess!!! How success achievement relief happy amazing!!! How can u say its useless?? How can u say its not communicating and doesnt count!!!!

[whalesharkpasta]

It also makes me sad that I saw some one said that making writing accessible isnt just dumbing it down cause some times it is some times there are people that actually doesn't understand cant read complicated things and it needs to be dumbed down made simple easy to get it people talk about making accessible websites and stuff and what ever but only care about text sizes and contrasts and screen readers and stuff never care about people who actually cant understand complicated stuff long words no matter how easy it is to see the letters or hear the words

[freeartzombie]

Meeting The Man: James Baldwin in Paris

(via Mubi)

[therapy101]

What is recovery-oriented care?

Recovery is both a movement and a model. It’s important to recognize that the movement is a consumer/survivor movement, so it is very much about people advocating for themselves and transforming the system so that it works for them. The essential idea is that instead of focusing on eliminating mental health symptoms, the goal of mental health care and of people with serious mental illnesses should be to improve their lives through improving functioning, developing relationships, and seeking a meaningful, fulfilling life, even if symptoms persist. The recovery model recognizes that for many people with serious mental illness, elimination of symptoms is improbable. But this does not mean that they cannot have lives that are meaningful and that they enjoy. Even more importantly, the recovery model recognizes that symptom remission is not the largest predictor of outcomes for people with serious mental illness- it’s about skill improvement and community functioning. 

So recovery-oriented care is a comprehensive model that doesn’t ignore symptoms but also doesn’t focus solely on them. The model focuses more on what sorts of skills and resources each person needs to live the life they want, right now, and in the long term. This can range from supported employment to social skills training to money management to cognitive behavioral therapy and more. Additionally- and essentially -recovery oriented care includes the person in their treatment planning. Recovery is about empowerment, about inclusion, and about seeking the life each person wants, which can take many forms. It is not cookie cutter. It takes each person seriously and does not diminish or rely on labeling. It incorporates peer-run services and evidence-based practice. It’s a great model, and I am a complete advocate. 

Sources: 1 2 3 4 5 6

[autisticadvocacy]

Action Alert: New York residents, support Andre’s Law to Stop The Shock! - Autistic Self Advocacy Network

For years, the disability community has worked to end torture at the Judge Rotenberg Center. While we work towards an FDA ban on the use of electric shocks, there is critical state-level legislation that would affect the Judge Rotenberg Center. The New York state legislature has reintroduced a bill that…

Andre’s Law would stop any more New Yorkers from being sent to the JRC. Our community can’t wait — we must take this critical step. New York members, call your state legislators! Your advocacy will move us towards the day when we #StopTheShock for good. 

[five-thousand-loaves-of-bread]

in case “isn’t JRC in massachusetts not new york?”

from article:

New York banned aversives like electric shock in 2005, but there is currently no ban on sending people out of state to places that use aversives. This bill would close that loophole.