#~immune disorders~

[mirrorballkt]

boo

[kindnessoverperfection]

Please, if you can, take a moment to read and share this because I feel like I'm screaming underwater.

NPD (Narcissistic Personality Disorder) stigma is rampant right now, and seems to be getting progressively worse. Everyone is using it as a buzzword in the worst ways possible, spreading misinformation and hatred against a real disorder.

I could go on a long time about how this happened, why it's factually incorrect (and what the disorder actually IS), why it's harmful, and the changes I'd like to see. But to keep this concise, I'll simply link to a few posts under the cut for further reading.

The point of this post is a plea. Please help stop the spread of stigma. Even in mental health communities, even around others with personality disorders, in neurodivergent "safe" spaces, other communities I thought people would be supportive in (e.g. trans support groups, progressive spaces in general), it keeps coming up. So I'm willing to bet that a lot of people on this site need to see this.

Because it's so hard to exist in this world.

My disorder already makes me feel as if I'm worthless and unlovable, like there's something inherently wrong and damaged about me. And it's so much harder to fight that and heal when my daily life consists of:

Laughing and spending time with my friends, doing my utmost best to connect and stay present and focused on them, trying to let my guards down and be real and believe I'm lovable- when suddenly they throw out the word "narcissist" to describe horrible people or someone they hate, or the conversation turns to how evil "people with narcissistic personality disorder" are. (Seriously, you don't know which of your friends might have NPD and feels like shit when you say those things & now knows that you'd hate them if you knew.)

Trying to look up "mental health positivity for people with npd", "mental health positivity cluster bs", only to find a) none of that, and b) more of the same old vile shit that makes me feel terrible about myself.

Having a hard time (which is constant at this point) and trying to look up resources for myself, only to again, find the same stigma. And no resources.

Not having any clue how to help myself, because even the mental health field is spitting so much vitriol at people with DISORDERS (who they're supposed to be helping!) that there's no solid research or therapy programs for people like me.

Losing close friends when they find out, despite us having had a good relationship before, and them KNOWING me and knowing that I'm not like the trending image of pwNPD. Because now they only see me through the lens of stigma and misinformation.

Hearing the same stigma come up literally wherever I go. Clubs. Meetings. Any online space. At the bus stop. At the mall. At a restaurant. At work. Buzzword of the year that everyone loooves loudly throwing around with their friends or over the phone. Feels awesome for me, makes my day so much better/s

I could go on for a long time, but I'm scared no one will read/rb this if it gets too much longer.

So please. Stop using the word "narcissist" as a synonym for "abusive".

Stop bringing up people you hate who you believe to have NPD because of a stigmatizing article full of misinformation whenever someone with actual NPD opens their mouth. (Imagine if people did that with any other disorder! "Hey, I'm autistic." "Oh... my old roommate screamed at me whenever I made noise around him, and didn't understand my needs, which seems like sensory overload and difficulty with social cues. He was definitely autistic. But as long as you're self-aware and always restraining your innate desire to be an abusive asshole, you're okay I guess, maybe." ...See how offensive and ignorant that is?)

Stop preventing healthcare for people with a disorder just because it's trendy to use us as a scapegoat.

If you got this far, thank you for reading, and please share this if you can. Further reading is under the cut.

NPD Criteria, re-written by someone who actually has NPD

Stigma in the DSM

Common perception of the DSM criteria vs how someone may actually experience them (Keep in mind that this is the way I personally experience these symptoms, and that presentation can vary a lot between individuals)

"Idk, the stigma is right though, because I've known a lot of people with NPD who are jerks, so I'm going to continue to support the blockage of treatment for this condition."

(All of these were written by me, because I didn't want to link to other folks' posts without permission, but if you want to add your own links in reblogs or replies please feel free <3)

[reasonsforhope]

Story from the Washington Post here, non-paywall version here.

Washington Post stop blocking linksharing and shit challenge.

"The young woman was catatonic, stuck at the nurses’ station — unmoving, unblinking and unknowing of where or who she was.

Her name was April Burrell.

Before she became a patient, April had been an outgoing, straight-A student majoring in accounting at the University of Maryland Eastern Shore. But after a traumatic event when she was 21, April suddenly developed psychosis and became lost in a constant state of visual and auditory hallucinations. The former high school valedictorian could no longer communicate, bathe or take care of herself.

April was diagnosed with a severe form of schizophrenia, an often devastating mental illness that affects approximately 1 percent of the global population and can drastically impair how patients behave and perceive reality.

“She was the first person I ever saw as a patient,” said Sander Markx, director of precision psychiatry at Columbia University, who was still a medical student in 2000 when he first encountered April. “She is, to this day, the sickest patient I’ve ever seen.” ...

It would be nearly two decades before their paths crossed again. But in 2018, another chance encounter led to several medical discoveries...

Markx and his colleagues discovered that although April’s illness was clinically indistinguishable from schizophrenia, she also had lupus, an underlying and treatable autoimmune condition that was attacking her brain.

After months of targeted treatments [for lupus] — and more than two decades trapped in her mind — April woke up.

The awakening of April — and the successful treatment of other people with similar conditions — now stand to transform care for some of psychiatry’s sickest patients, many of whom are languishing in mental institutions.

Researchers working with the New York state mental health-care system have identified about 200 patients with autoimmune diseases, some institutionalized for years, who may be helped by the discovery.

And scientists around the world, including Germany and Britain, are conducting similar research, finding that underlying autoimmune and inflammatory processes may be more common in patients with a variety of psychiatric syndromes than previously believed.

Although the current research probably will help only a small subset of patients, the impact of the work is already beginning to reshape the practice of psychiatry and the way many cases of mental illness are diagnosed and treated.

“These are the forgotten souls,” said Markx. “We’re not just improving the lives of these people, but we’re bringing them back from a place that I didn’t think they could come back from.” ...

Waking up after two decades

The medical team set to work counteracting April’s rampaging immune system and started April on an intensive immunotherapy treatment for neuropsychiatric lupus...

The regimen is grueling, requiring a month-long break between each of the six rounds to allow the immune system to recover. But April started showing signs of improvement almost immediately...

A joyful reunion

“I’ve always wanted my sister to get back to who she was,” Guy Burrell said.

In 2020, April was deemed mentally competent to discharge herself from the psychiatric hospital where she had lived for nearly two decades, and she moved to a rehabilitation center...

Because of visiting restrictions related to covid, the family’s face-to-face reunion with April was delayed until last year. April’s brother, sister-in-law and their kids were finally able to visit her at a rehabilitation center, and the occasion was tearful and joyous.

“When she came in there, you would’ve thought she was a brand-new person,” Guy Burrell said. “She knew all of us, remembered different stuff from back when she was a child.” ...

The family felt as if they’d witnessed a miracle.

“She was hugging me, she was holding my hand,” Guy Burrell said. “You might as well have thrown a parade because we were so happy, because we hadn’t seen her like that in, like, forever.”

“It was like she came home,” Markx said. “We never thought that was possible.”

...After April’s unexpected recovery, the medical team put out an alert to the hospital system to identify any patients with antibody markers for autoimmune disease. A few months later, Anca Askanase, a rheumatologist and director of the Columbia Lupus Center,who had been on April’s treatment team, approached Markx. “I think we found our girl,” she said.

Bringing back Devine

When Devine Cruz was 9, she began to hear voices. At first, the voices fought with one another. But as she grew older, the voices would talk about her, [and over the years, things got worse].

For more than a decade, the young woman moved in and out of hospitals for treatment. Her symptoms included visual and auditory hallucinations, as well as delusions that prevented her from living a normal life.

Devine was eventually diagnosed with schizoaffective disorder, which can result in symptoms of both schizophrenia and bipolar disorder. She also was diagnosed with intellectual disability.

She was on a laundry list of drugs — two antipsychotic medications, lithium, clonazepam, Ativan and benztropine — that came with a litany of side effects but didn’t resolve all her symptoms...

She also had lupus, which she had been diagnosed with when she was about 14, although doctors had never made a connection between the disease and her mental health...

Last August, the medical team prescribed monthly immunosuppressive infusions of corticosteroids and chemotherapy drugs, a regime similar to what April had been given a few years prior. By October, there were already dramatic signs of improvement.

“She was like ‘Yeah, I gotta go,’” Markx said. “‘Like, I’ve been missing out.’”

After several treatments, Devine began developing awareness that the voices in her head were different from real voices, a sign that she was reconnecting with reality. She finished her sixth and final round of infusions in January.

In March, she was well enough to meet with a reporter. “I feel like I’m already better,” Devine said during a conversation in Markx’s office at the New York State Psychiatric Institute, where she was treated. “I feel myself being a person that I was supposed to be my whole entire life.” ...

Her recovery is remarkable for several reasons, her doctors said. The voices and visions have stopped. And she no longer meets the diagnostic criteria for either schizoaffective disorder or intellectual disability, Markx said...

Today, Devine lives with her mother and is leading a more active and engaged life. She helps her mother cook, goes to the grocery store and navigates public transportation to keep her appointments. She is even babysitting her siblings’ young children — listening to music, taking them to the park or watching “Frozen 2” — responsibilities her family never would have entrusted her with before her recovery.

Expanding the search for more patients

While it is likely that only a subset of people diagnosed with schizophrenia and psychotic disorders have an underlying autoimmune condition, Markx and other doctors believe there are probably many more patients whose psychiatric conditions are caused or exacerbated by autoimmune issues...

The cases of April and Devine also helped inspire the development of the SNF Center for Precision Psychiatry and Mental Health at Columbia, which was named for the Stavros Niarchos Foundation, which awarded it a $75 million grant in April. The goal of the center is to develop new treatments based on specific genetic and autoimmune causes of psychiatric illness, said Joseph Gogos, co-director of the SNF Center.

Markx said he has begun care and treatment on about 40 patients since the SNF Center opened. The SNF Center is working with the New York State Office of Mental Health, which oversees one of the largest public mental health systems in America, to conduct whole genome sequencing and autoimmunity screening on inpatients at long-term facilities.

For “the most disabled, the sickest of the sick, even if we can help just a small fraction of them, by doing these detailed analyses, that’s worth something,” said Thomas Smith, chief medical officer for the New York State Office of Mental Health. “You’re helping save someone’s life, get them out of the hospital, have them live in the community, go home.”

Discussions are underway to extend the search to the 20,000 outpatients in the New York state system as well. Serious psychiatric disorders, like schizophrenia, are more likely to be undertreated in underprivileged groups. And autoimmune disorders like lupus disproportionately affect women and people of color with more severity.

Changing psychiatric care

How many people ultimately will be helped by the research remains a subject of debate in the scientific community. But the research has spurred excitement about the potential to better understand what is going on in the brain during serious mental illness...

Emerging research has implicated inflammation and immunological dysfunction as potential players in a variety of neuropsychiatric conditions, including schizophrenia, depression and autism.

“It opens new treatment possibilities to patients that used to be treated very differently,” said Ludger Tebartz van Elst, a professor of psychiatry and psychotherapy at University Medical Clinic Freiburg in Germany.

In one study, published last year in Molecular Psychiatry, Tebartz van Elst and his colleagues identified 91 psychiatric patients with suspected autoimmune diseases, and reported that immunotherapies benefited the majority of them.

Belinda Lennox, head of the psychiatry department at the University of Oxford, is enrolling patients in clinical trials to test the effectiveness of immunotherapy for autoimmune psychosis patients.

As a result of the research, screenings for immunological markers in psychotic patients are already routine in Germany, where psychiatrists regularly collect samples from cerebrospinal fluid.

Markx is also doing similar screening with his patients. He believes highly sensitive and inexpensive blood tests to detect different antibodies should become part of the standard screening protocol for psychosis.

Also on the horizon: more targeted immunotherapy rather than current “sledgehammer approaches” that suppress the immune system on a broad level, said George Yancopoulos, the co-founder and president of the pharmaceutical company Regeneron.

“I think we’re at the dawn of a new era. This is just the beginning,” said Yancopoulos."

-via The Washington Post, June 1, 2023

[thoughtportal]

are we on the cusp of a breakthrough in endometriosis?

[skullingwaydraws]

A recent illustration I made to submit to a show about disability

I wanted to depict pain and work. It wasn't selected, but I still wanted to share for any who relate 💕

[kirby-the-gorb]

[birdsong-warriors]

I realize I haven't shown any previews for future pages in a long while, so here's one from page 249! uwu

[like-this-post-if-you]

Like this post if you are allergic to anything

-🐍

.

[chronicillnesshumor]

My Immune System Got Run Over By A Reindeer Hoodie

On Etsy as shirts and mug [ https://www.etsy.com/shop/ChronicIllnessTees?ref=dashboard-header&search_query=reindeer ]

[swaglet]

that post about people treating autism like a personality quirk instead of a developmental delay that affects your whole body is so true. i would tattoo that shit onto my body

[echo-goes-mmm]

Juno in "Pet Shelter"

My Writing Masterpost

Juno Collection Masterpost

Warnings: lightly BBU adjacent 

“And that’s about it,” finished Jack, leading the new volunteer back to the front desk. “Any questions?”

Daniel shrugged. “It seems simple enough. Feed the pets, give out meds, play time is two hours a day,” he rattled off.

Jack smiled. “Just about, yeah. Although some pets have dietary restrictions, so be careful with that. It’s all in their charts.”

“Right. Oh, do employees get to adopt from the shelter? Just curious.”

“Yup! There’s a waiting period of six months, though. In fact, I'll have officially adopted a kitty tomorrow. I’m really excited.” Jack beamed, proud.

“Kitty?”

“Oh,” waved off Jack, “it’s a term we use to describe personalities. ‘Kitties’ are shyer, quiet, more independent. ‘Pups’ are more energetic, playful, outgoing. You know the type.”

“Makes sense,” said Daniel. “I guess I’m more of a dog person, but, like, real dogs.”

“Fair,” nodded Jack. “Most people don’t want human pets, hence their rarity. I think there’s only one store in the county, and we’re the only shelter. Hey, since we have a couple hours, you want to meet my kitty?”

Jack pulled out a set of keys from the front desk drawer. “I’m thinking of calling him Juno. He’s really great, and I already love him.”

“Sure, why not?”

The two men turned back down the hall, passed the ‘employee only’ doors. 

“So how come Juno didn’t get adopted yet? I hear pets get adopted really quickly here.”

“Well… he’s got some medical stuff a lot of people don’t want to deal with.”

“Like what?”

Jack swung the keys around his finger.

“For one thing, he���s trans.”

Daniel shot him a look. 

“I know, I know,” Jack said, “but the reality is, that turns a lot of people off, in a manner of speaking. I don’t think it should matter, but it does. And although lots of pets like having sex, Juno has a severe aversion to anyone or anything near his vulva that isn’t himself and his menstrual cup.”

They reached another door at the end of the hall, and Jack flipped through the keys trying to find the right one.

“Usually that isn’t an issue; most people don’t care. Unfortunately, Juno also has an expensive diet. It’s either buy the pricey pet food, or cook for him. I don’t mind the cooking- I like cooking- but the combination of everything makes him pretty unlucky in the adoption department.”

Jack fit a key into the lock of a second door, which opened into a smaller hall with fewer stalls. 

An acidic smell hit them as soon as the door opened.

“Shit,” muttered Jack.

“That can’t be good,” agreed Daniel.

Jack jogged through the hall, and came to stop at a stall. A whine sounded from the poor pet inside.

“Hey, buddy,” cooed Jack, crouching down.

Daniel peered over his shoulder.

A pet was curled up in a far corner, stale vomit in a puddle on the opposite side. 

The pet had dark brown hair, and his eyes were screwed shut. He looked feverish, and he was trembling. His breathing was quick and shallow, and he had top surgery scars on his chest.

Daniel glanced at the sign on the wall.

Juno, it read. Owner: Pending.

“Did somebody give you the wrong food, honey?” Jack asked quietly as he unlocked the stall.

Juno whined again.

“Okay buddy, don’t worry.” Jack pulled out his phone and snapped a picture of the stall, pet and vomit and all. “I’ll take good care of you, I promise.”

Jack approached the shivering pet. “Take a look in his food bowl, would you?” he called over his shoulder.

Daniel looked inside. “It’s halfway empty.”

“Fuck,” muttered Jack. The pet whimpered. “Not you, sweetheart. You’re doing so good; making sure you didn’t get messy. There’s a good boy. You didn’t eat it all cause you figured it out, yeah? Such a smart kitty.” Jack pet the boy’s hair, and Juno leaned into his hand.

“Can you sit up for me?”

Jack helped the pet lean against the wall, his face tacky with tear tracks. “I know your tummy hurts, sweetheart, but just stay right there, okay?”

Jack pulled away and turned to Daniel. “Dump out the food in the trash,” he ordered. “Get a new bowl from storage, and fill it with the gluten-free bag. Make sure it’s a new bowl, or he’ll get sick again.”

“What about the water? Won’t that be contaminated?”

“Go ahead and take that to the sink. I’ll take care of getting him some liquid,” Jack said. “I need to brush his teeth anyway.”

They left the stall. “Not going to lock it?”

“He’s not going anywhere,” Jack said with a grim face. “He can’t move much when he has a reaction.”

Jack pulled out his phone, dialing a number as he went to the med cabinet.

He opened the cabinet, looking for the stock paste he kept on hand and the shelter-supplied disposable toothbrushes as the phone rang.

“Hello?”

“Hey boss, it’s Jack. One of the pets got fed an allergen again. Sent you some photos.”

“Dammit. Which one?”

Jack found the brushes. They were on the wrong shelf.

“Guess.”

His boss sighed. “And you’re sure it’s Ethan doing it?”

Jack switched his phone to the other shoulder as he filled a bottle with hot water.

“He hates me,” he complained, scooping a tablespoon of the stock paste into the bottle. “And he really wanted Juno. He was on food duty earlier. He’s trying to sabotage the adoption. You know, make him sick so he has to do a round of isolation.”

His boss sighed. “I’ll check the tapes.”

“Thanks. See you tomorrow.”

Jack shook the bottle until it was a dark brown and the paste had dissolved.

“Hey, Juno,” he said quietly, pulling open the door. “I’m back.”

Juno looked up at him with teary blue eyes. Poor thing.

“I got you a toothbrush, and that soup you like.” Jack set the bottle off the side, kneeling in front of him.

Juno opened his mouth, still weak and miserable, and Jack scrubbed the stomach acid off his teeth.

“You get to come home with me tomorrow,” he said, cupping the back of Juno’s head for support. “Won’t that be nice?”

Juno made an ‘mhm’ as soon as Jack was finished. 

Jack picked up the bottle. “Do you think you can hold it for me?”

Juno didn’t look very sure.

“Alright, that’s fine.” Jack unscrewed the cap, and held the soup to Juno’s mouth.

Juno took a couple of sips, and turned his head away. His stomach probably couldn’t handle much more.

“That’s okay. You're doing great.” He brushed Juno’s sweaty bangs away from his forehead. He wanted to give him a bath, get all that sweat off, but Juno probably wouldn’t appreciate that right now. “You wanna go to sleep?” 

The pet nodded, clearly exhausted. He must have been vomiting for hours.

Jack helped him lay down on his cot as Daniel came back.

“What's that?” he nodded towards the bottle.

“Stock,” Jack explained. “The salt and fluid is good for nausea and he needs the calories.”

Jack stroked Juno’s hair.

“He’ll be okay, right?”

“Yeah. He just needs to rest.”

___________________

Jack stirred the fried rice in the pan. It smelled great, and it was a new recipe. His aunt had recommended it, and she had Celiac disease just like Juno. 

Honestly, it wasn’t that hard to switch everything over to be gluten free. And it was worth it to keep his pet healthy.

Juno pressed himself against Jack’s back, his arms wrapping around Jack’s waist. He laid his head on Jack’s shoulder.

“Hey, bud. Ready to eat?”

“Mhm.”

Jack spooned two portions into bowls, and sat on the couch to eat.

Juno ate from his bowl with gusto, and Jack smiled as he watched. His kitty had put on a lot more weight, and the doctor was really pleased with his progress. 

Juno finished before he did, and got up onto the couch, shoving his head onto Jack’s lap.

Jack absent-mindedly carded a hand through his hair. It was so soft and wavy now that he had proper conditioner. 

He focused on the nape of Juno’s neck, just where he liked it, and Juno nuzzled into his thigh.

If Juno could purr like real cats, Jack knew he would.

He looked so much better: well-rested, well-fed, and with a handsome leather collar.

Adopting him was the best decision Jack had ever made.

taglist: @paintedpigeon1

[swagging-back-to]

it should be a cut and dry case if you go to a restaurant and get glutened by them. and by case i mean criminal. not just suing for damages and distress.

[hollypies]

A BIG CHUNK OF MY BACK TOOTH JUST CAME OFF. FUCK BRO WHAT THE HELL

WHAT

WHY 😭

[tumble-tv]

No one:

Me and my eight boxes of masks:

[sitting-on-me-bum]

A recent study in Nature Communications suggests that by 24 months, signs of heightened immune activity in most long-COVID patients will have returned to normal levels. Pictured above is a composite colored scanning electron micrograph of immune cells—including a single macrophage, two dendritic cells, and numerous white blood cells—involved in a cytokine storm, a life-threatening immune disorder. Cytokines are important for normal immune response, but when too many are released simultaneously it can be harmful.

COMPOSITE MICROGRAPH BY STEVE GSCHMEISSNER, SCIENCE PHOTO LIBRARY

[kirby-the-gorb]