Community Munchausen's by Internet (Malingerers, Munchies, Spoonies, etc) - Feigning Illnesses for Attention

[Flourishing Pinecone ❧]

Spoiler: PL tachycardia

when I was a younger pinecone, I used to get bouts of tachycardia that I mostly ignored but saw a Cardiologist about and he was just like "it's not going to kill you, but if it bothers you you can try x, y, z". Over time it mostly went away.

But I wonder if the Potsies had been prevalent, or the Cardiologist had fed into the delusion, could I have ended up like this lot with tubes and powerchair and longings for Disney.

 

[tinybip]

It deeply frustrates me to see people claiming hyperextension or connective tissue disorders insist this makes them fragile angels who need to sit and never move again. Ask anyone with hyperextension and they’ll tell you to get orthotics for your feet and do exercise to strengthen the muscles surrounding your joints. It’s like bendy person 101. It’s not just mental deconditioning, it’s targeted, purposeful physical deconditioning and it’s SO dumb

 

[Otterly]

is there anything that can cause someone not to be a candidate for antibiotics of last resort? i just feel like someone like her would be a great vector for spreading colistin resistance, her doctors must know that, so can they deny her? n.b. no idea if colistin would work against her specific bacteria, just an example, not a dr etc.

About a year after they gave the colistin class to the world, and told them last resort only guys, ok? They found the Chinese feeding it to pigs on an industrial scale.
We really are fucked unless we find whole new classes of antibiotics fast.

 

[glioblastoma multiforme]

We really are fucked unless we find whole new classes of antibiotics fast.

the annoying thing is that academics have found loads of pathways that could be targeted by novel antibiotics, but pharma companies aren't interested in developing them. any new class would be an antibiotics of last resort so not profitable, even if it would be for general use, a medication that you only take for max a few weeks isn't that profitable compared to drugs you could put someone on for life.

if the EU or US had redployed some of their funding used for studying AMR genes on actually developing new antibiotics, we might have some by now. they are now using pull incentives to try and motivate pharma, such as: https://amr.solutions/2021/06/24/horizon-europe-2021-2027-initial-amr-focused-calls-now-posted/

we have studied AMR in the north sea ffs (e.g. https://www.frontiersin.org/articles/10.3389/fmicb.2022.883081/full), any environment with a high microbial background will have lots of AMR due to competition, regardless of human influence- its how we developed antibioics in the first place, looking at how bacteria survive. while that knowledge might be useful i just don't see why that is a higher priority than developing new antibiotics, though obviously that would require a very different skill set.

that said, i know a tiny bit about the academic side, but nothing about the pharma side. maybe things are better than i'm aware, but situation looks fucked to me.

China claimed to have stopped giving colistin to their livestock a few years by, but i don't trust them.

eta: i've had pretty much this exact rant in the SRS thread so sorry for repetition.

 

[std::string]

They are 100% right and I love the term "mental deconditioning". It's the reality of personality disorders as well: they aren't truly disorders or purely trauma responses, they are impulsive, habitual problems with the sensation of mild discomfort.

There's a whole book that could be written about the intersection between modern society, marketing and medicine. If you experience any discomfort there's something you can buy that will fix it. When it comes to health, doctors are the gatekeeper between you and the thing you can buy.

The fact that either a. you can be diagnosed with something and there is no medication for it or b. the medication is some free plebian shit like exercise is just an anathema. For many, many patients. Not even just munchies.

 

[The Sea Witch]

They are 100% right and I love the term "mental deconditioning". It's the reality of personality disorders as well: they aren't truly disorders or purely trauma responses, they are impulsive, habitual problems with the sensation of mild discomfort.

Deconditioning POTs, pain, and "EDS" has to be the most frustrating shit as a doctor. When they plop onto a wheelchair and make it worse, it's just.... holy shit. I talked to a person that pulled this shit, just got so fat and so deconditioned she insisted it MUST be illness, she MUST be in a wheelchair. Now she's a BMI near 60 and can't figure out why her limbs are going numb while literally not moving all day. She has run to the Mayo clinic and screams at pain doctors, and with test after medical test, proves NOTHING WRONG. Fuck, they don't even get a positive on a tilt table ... everything can be cured by standing up and putting down the fork, but they go to doctors as a fucking full time job.

Entirely dismissing POTs/dysautotomia and non self-induced is kind of dumb though, there's literally no reason dysfunction of this system cannot exist. It's like any other neurological system, but more complicated because of the direct interface with broader systems. That's like saying heart defects don't exist because most cardiac issues are behavioral or age dependant. They are just rarer.

But even in "genuine" POTs, exercise, fluids, and electrolytes are going to kick its ass.

My personal favorite munchie, Kitty Anne (Kat Loosmore aka barf queen) is currently in hospice with basically all that. Add gastroparesis and interstitial cystitis and it's a munchie's full house. I don't think she's anywhere truly near terminal, so I am enjoying watching the saga unfold. So far as I can tell she has moved out of her home in PA and is now in MD near her family and it looks like the boyfriend visits at least sometimes. I wonder what she's going to do once the 6mo is up and she's not dead. They won't recertify her indefinitely.

 

[BunchofMunch]

It deeply frustrates me to see people claiming hyperextension or connective tissue disorders insist this makes them fragile angels who need to sit and never move again. Ask anyone with hyperextension and they’ll tell you to get orthotics for your feet and do exercise to strengthen the muscles surrounding your joints. It’s like bendy person 101. It’s not just mental deconditioning, it’s targeted, purposeful physical deconditioning and it’s SO dumb

I think this is what's going on with most people nowadays, EDS or not; don't you DARE suggest that someone try better themselves! Whether it's physically (fatties) or mentally (troons), you're only supposed to ever validate and never question someone or you are basically genociding them.

 

[SNU]

It deeply frustrates me to see people claiming hyperextension or connective tissue disorders insist this makes them fragile angels who need to sit and never move again. Ask anyone with hyperextension and they’ll tell you to get orthotics for your feet and do exercise to strengthen the muscles surrounding your joints. It’s like bendy person 101. It’s not just mental deconditioning, it’s targeted, purposeful physical deconditioning and it’s SO dumb

Munchies only care that it's vague (so they can shop around until they get a diagnosis), not definitively curable (so they can milk it forever), and it's an excuse to get new toys signaling they are sick (even if it's a weak excuse).

If, hypothetically, they discovered a nice clean lab test for the condition or some miraculous magic treatment that cured it instantly then all the munchies would just move on to another illness that fits the above requirements.

For example. Just imagine if there was a single gene mutation responsible for hEDS and for whatever reason no one knew about it. Then someone discovers this and there's suddenly a genetic test that can say you have or don't have hEDS. Munchies won't just suddenly snap out of it. They'll have a moment of panic, mention their hEDS less and less over time, then find some other illness where there isn't a definitive test.

So it pays not to get frustrated at the whole "there's clearly something you can do to improve your situation!" thing. They don't want to ever get better. You can get frustrated or you can laugh at them. Either way nothing will change but if you laugh at them then you'll have more fun

 

[Kate Farms Shill]

My personal favorite munchie

HAH! She's an old fave of mine but I don't have access to her accounts. Post em if you got em please.

or some miraculous magic treatment that cured it instantly

And they'd concoct some reason that they, personally, couldn't take the treatment. There's a CF account called Battling2Breathe. She definitely, without a doubt has CF and was told her entire life there was no effective treatment and she would die. When effective treatments like Orkambi hit the market she started to panic because her whole identity is wrapped up in "rare disease, lives in hospital, will die" so she shunned them and instead did a clinical trial for a treatment that failed in Phase II. When Trikafta came out, she claimed it caused a new neurological disorder she never had before and refused to continue treatment. In the three years since then she has slid into munchie diagnoses, been "fired" by her lifelong CF clinic for non-compliance and drug-seeking, started seeking bowel surgeries for what was obviously drug- and lifestyle-related impaction, etc etc. If she's called on this she starts throwing her real CF treatmetns in peoples faces and screaming about how you don't get pulmozyme and tobramycin for nothing.

 

[Sparkling Yuzu]

My personal favorite munchie, Kitty Anne (Kat Loosmore aka barf queen) is currently in hospice

Is that the girl who used to be fat and have dyed hair?

 

[Aunt Carol]

the annoying thing is that academics have found loads of pathways that could be targeted by novel antibiotics, but pharma companies aren't interested in developing them. any new class would be an antibiotics of last resort so not profitable

Someone's gotta start kidnapping rich people, inoculating them with MDROS, then releasing them and letting the free market do the rest~~

 

[SNU]

And they'd concoct some reason that they, personally, couldn't take the treatment. There's a CF account called Battling2Breathe. She definitely, without a doubt has CF and was told her entire life there was no effective treatment and she would die. When effective treatments like Orkambi hit the market she started to panic because her whole identity is wrapped up in "rare disease, lives in hospital, will die" so she shunned them and instead did a clinical trial for a treatment that failed in Phase II. When Trikafta came out, she claimed it caused a new neurological disorder she never had before and refused to continue treatment. In the three years since then she has slid into munchie diagnoses, been "fired" by her lifelong CF clinic for non-compliance and drug-seeking, started seeking bowel surgeries for what was obviously drug- and lifestyle-related impaction, etc etc. If she's called on this she starts throwing her real CF treatmetns in peoples faces and screaming about how you don't get pulmozyme and tobramycin for nothing.

The ones that verifiably actually having something wrong are the worst. They still do the usual shit of claiming to have other shit or making things worse on purpose but are somewhat immunized from criticism. More people defend them. There's usually a way higher bar for proof when saying their latest claimed diagnosis is bullshit. They also actually have specialist doctors caring for them that aren't just the local ED or some specific doctor that all the munchies go to to buy a diagnosis.

Theres a munchie I know that fits in this category. A friend of a friend kind of thing. They genuinely have one chronic illness. There is proof of it. But they claim a whole list of other rare ones. There's no proof of any of the others and any time someone shows even the slightest bit of doubt they just bust out the evidence of the one they do actually have

 

[Flourishing Pinecone ❧]

Is that the girl who used to be fat and have dyed hair?

I feel like this description doesn't narrow it down in this forum.

 

[Sammies#1Fan]

I feel like this description doesn't narrow it down in this forum.

Lol I thought the same thing. Like, they're pretty much all like that.

 

[fishercat]

I've had interactions with a (legit, accredited) service dog training organization. I asked them why their Facebook was private, and apparently it's because people were stealing photos of the dogs and posting them on social media, pretending that it was their dog. SD organizations hate munchies who fake service animals.

 

[JanuaryViolet]

Theres a munchie I know that fits in this category. A friend of a friend kind of thing. They genuinely have one chronic illness. There is proof of it. But they claim a whole list of other rare ones. There's no proof of any of the others and any time someone shows even the slightest bit of doubt they just bust out the evidence of the one they do actually have

I have a friend who is in danger of this, it's hard to watch, I feel for you. The person I know started with a real, serious illness. She had breast cancer. Had a mastectomy, got reconstruction, then apparently had a bad reaction to the implants and had them removed. She has been declining ever since, and I get the feeling it may be because it's easier than trying to reclaim what she can of her pre-diagnosis life. Not a word about any cancer returning (good!), just decreasing mobility, POTS-type complaints, complaints about the medical field, being 'disabled', significant weight gain, what seems to be an elective use of mobility aids plus a lot of complaints about things being 'accessible'. I really, really do not want to see her go down this path. She's not forum material (and she's significantly older than our Reigning Princesses, early 50s), maybe reading here has just made me notice the stuff more, but man, I REALLY don't want to see her go this way. I think this may have been the effect of having people intensely concerned about her (she was a normal and fun person before becoming so fragile, people liked her just fine) when she got sick, and she just doesn't want it to end.
Yes, I know this isn't a support group, give me hats, I'll take it.

 

[The former Jack Donaghy]

I have a friend who is in danger of this, it's hard to watch, I feel for you. The person I know started with a real, serious illness. She had breast cancer. Had a mastectomy, got reconstruction, then apparently had a bad reaction to the implants and had them removed. She has been declining ever since, and I get the feeling it may be because it's easier than trying to reclaim what she can of her pre-diagnosis life. Not a word about any cancer returning (good!), just decreasing mobility, POTS-type complaints, complaints about the medical field, being 'disabled', significant weight gain, what seems to be an elective use of mobility aids plus a lot of complaints about things being 'accessible'. I really, really do not want to see her go down this path. She's not forum material (and she's significantly older than our Reigning Princesses, early 50s), maybe reading here has just made me notice the stuff more, but man, I REALLY don't want to see her go this way. I think this may have been the effect of having people intensely concerned about her (she was a normal and fun person before becoming so fragile, people liked her just fine) when she got sick, and she just doesn't want it to end.
Yes, I know this isn't a support group, give me hats, I'll take it.

Sounds like she's having a hard time adjusting to her post cancer life. I agree she probably got used to the attention and care, and there's nothing wrong with that! Sick people should be cared for! But now she doesn't want to be independent anymore. Poor dear. Munching is a young person's game!

 

[SNU]

I have a friend who is in danger of this, it's hard to watch, I feel for you. The person I know started with a real, serious illness. She had breast cancer. Had a mastectomy, got reconstruction, then apparently had a bad reaction to the implants and had them removed. She has been declining ever since, and I get the feeling it may be because it's easier than trying to reclaim what she can of her pre-diagnosis life. Not a word about any cancer returning (good!), just decreasing mobility, POTS-type complaints, complaints about the medical field, being 'disabled', significant weight gain, what seems to be an elective use of mobility aids plus a lot of complaints about things being 'accessible'. I really, really do not want to see her go down this path. She's not forum material (and she's significantly older than our Reigning Princesses, early 50s), maybe reading here has just made me notice the stuff more, but man, I REALLY don't want to see her go this way. I think this may have been the effect of having people intensely concerned about her (she was a normal and fun person before becoming so fragile, people liked her just fine) when she got sick, and she just doesn't want it to end.
Yes, I know this isn't a support group, give me hats, I'll take it.

The one I know had me suspicious from the start. When I first met them they put on a medical mask. This was quite a while before covid was a thing so it wasnt a common thing. When I didn't comment on it or even ask about it they took it off. Could you make it any more obvious you only wore it so the new person would ask about your health? They'd also imply things without saying it. So they'd have an appointment for a steroid infusion for their autoimmune thing and they would tell people it was an appointment for chemotherapy. The implication being cancer. When pressed for details they could show they were going to an appointment where a medication will be administered into their veins. So to normal people its believable that it would be chemotherapy for cancer. There's always a sickness Olympics too. Like if someone's talking about a sick family member this person will start talking about how they are even sicker. Like they'll ask what medication the family member is on then when you answer they'll say something like "oh I was on that but now I'm on this more serious medication because I'm sooooo sick and that one wasn't strong enough"

 

[Colonel Gaddafi]

They are 100% right and I love the term "mental deconditioning". It's the reality of personality disorders as well: they aren't truly disorders or purely trauma responses, they are impulsive, habitual problems with the sensation of mild discomfort.

Deconditioning POTs, pain, and "EDS" has to be the most frustrating shit as a doctor. When they plop onto a wheelchair and make it worse, it's just.... holy shit. I talked to a person that pulled this shit, just got so fat and so deconditioned she insisted it MUST be illness, she MUST be in a wheelchair. Now she's a BMI near 60 and can't figure out why her limbs are going numb while literally not moving all day. She has run to the Mayo clinic and screams at pain doctors, and with test after medical test, proves NOTHING WRONG. Fuck, they don't even get a positive on a tilt table ... everything can be cured by standing up and putting down the fork, but they go to doctors as a fucking full time job.

Entirely dismissing POTs/dysautotomia and non self-induced is kind of dumb though, there's literally no reason dysfunction of this system cannot exist. It's like any other neurological system, but more complicated because of the direct interface with broader systems. That's like saying heart defects don't exist because most cardiac issues are behavioral or age dependant. They are just rarer.

But even in "genuine" POTs, exercise, fluids, and electrolytes are going to kick its ass.

Mild PL:
I have a close friend who we think might have POTs or a related cardiac illness. He’s been through the ringer back home, but healthcare in the motherland is nearly non existent, so he’s had to come to the States for a diagnosis, which he’s working on. The doctors can tell something is up, it’s a matter of figuring out exactly what. The dude is young, underweight (no ED, just a crazy metabolism, kinda common for our people), and desperately wants an active lifestyle with his wife. The problem is that he’s lived with this problem for so long, whatever it is, that he’s actually terrified of doing anything. He seems to get very ill after any activity, and it’s visible. Poor fuck can’t even sleep lying down. It’s going to take a lot to convince him to come out of that fear response during recovery. I feel like shit being a confidant because his family knows very little about any of this, he’s embarrassed by the whole ordeal.

The fact that people actually suffer from stuff like this and need to be brought down from crippling fear and anxiety is terrible. It’s what makes munchies so deplorable to me personally.

 

[JanuaryViolet]

Quote isn't working, so

" It’s going to take a lot to convince him to come out of that fear response during recovery. I feel like shit being a confidant because his family knows very little about any of this, he’s embarrassed by the whole ordeal."

This guy sounds like he is actually sick. Not pretending like our Princesses here. I wish him much luck and recovery.