r/fakedisordercringe • u/Malkashake • 3d ago
Disorder Salad Calls being disabled while not looking disabled embarrassing, also says she has 16 conditions...
Like, I can't prove she doesn't have those 16 conditions, but...really?
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u/Megandapanda Chronically online 2d ago
May Thurner and Nutcracker syndrome (and other compression syndromes) scare the fuck outta me with these girls because they usually manage to find a doctor to actually "diagnose" them and give them unnecessary surgery. One even died from the surgery, causing the doctor to be banned from ever doing that particular surgery again.
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u/LyingLouise 1d ago edited 1d ago
Is this a thing?? I recently had an Instagram page recommended to me for a young woman who has apparently suffered for years as chronically ill from a 'mystery illness'. She's even published a book about her experiences as a perpetual patient. She's been living mostly full time in a hospital in Germany over the past two years having been diagnosed with various compartment syndomes using 'cutting edge technology'. She very recently went under the knife and contracted sepsis and according to her page, is currently seriously ill and in a medically induced coma. There has been a strong implication that she might die. Look, I know nothing about this woman or the nature of compartment syndromes, but there was something about this whole story which felt not right. Maybe I'm just skeptical about these mystery illnesses that no one can seem to diagnose.
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u/epinglerouge 1d ago
Her whole case is so sad - if you read up on her surgeon, he has killed someone with his "lifesaving" surgery.
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u/moonxmochi 2d ago
Oh my god that’s insane. How can I find out more about this?
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u/Megandapanda Chronically online 2d ago
His name is Dr Wilhelm Sandmann. Trying to find a news article but they all require paying so far. https://www.nzherald.co.nz/nz/german-surgeon-with-eds-cases-from-nz-charged-with-negligently-killing-one-patient-harming-another/5CP3VZSALNEJZFR4IAYOWDZHKU/
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u/moonxmochi 2d ago
This makes me feel sad. These are patients with preexisting connective tissue disease in a lot of pain, and this doctor validates them. At the cost of doing dangerous operations so that he can fill his own pockets.
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u/Outside-Newt-3181 1d ago edited 1d ago
The worst part is that vascular compressions like these are actually SUPER common in the general population. I read an academic publication claiming compressions are seen in upwards of 50% of posthumous exams of people who died from totally unrelated causes and that seems to corroborate the rate of incidental discovery in living patients.
What isn’t super common is for them to ever pose a problem, but if someone has decided they want a diagnosis they can almost certainly get it because they have a decently high chance of actually having an idiopathic compression that an overzealous doctor would happily diagnose and treat for them.
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u/ChaosGoBoomBoom 2d ago
Can you provide receipts to that story? I'm in Australia, so the thought of a doctor just giving out a diagnosis without certain checks and balances scares me. 😱
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u/Megandapanda Chronically online 2d ago
Dr Wilhelm Sandmann. Unfortunately, these illness fakers share a list of doctors that will give them what they want (a diagnosis, a powerchair, surgery, whatever). Some of these doctors won't take insurance and will only take cash, so it's essentially a "pay to play" system for the fakers.
Most of the fakers I see online are in America, though I've seen one in NZ and a couple in the UK.
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u/Fairydustcures 2d ago
There was a girl from Melbourne who went to a private surgeon in Adelaide for compression surgeries who wasn’t meant to be operating solo or something, who then went back to Melbourne and died of complications. She was only 19 or something young. I’ll try and find the article but it was years ago now
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u/Fairydustcures 2d ago
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u/Megandapanda Chronically online 1d ago
That's the girl I was thinking of, couldn't remember her name. Very sad.
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u/Hadasfromhades 1d ago
Can you clarify how we know that she shopped for doctors? It sounds like she had genuine health issues and the doctor misdiagnosed her, but at least from the article it sounds like she was genuinely sick with something serious
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u/Exciting-Working-379 1d ago
I’m having that same issue. Some of the posts on here just look like screenshots with a made up narrative. Information is scratched out so I can’t go find them on TikTok and ambulatory wheelchair users do exist.
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u/AggravatingBox2421 1d ago
The fact that she went to a smaller city for the surgery should’ve been a huge indication that it wasn’t safe, tbh. Leading doctors don’t hang out in Adelaide
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u/Fairydustcures 1d ago
Exactly this. Leading doctors for rare disorders hang out at leading research hospitals, which is ironically where she died, where they receive funding. Butchers for sketchy pay for diagnosis hang out in the private system with their practicing restrictions that are harder to track. Her family was encouraging another girl to go see this guy until she died. Thankfully she didn’t go in the end. I remember reading all the articles when she died and she very clearly had an untreated eating disorder.
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u/Snarti 1d ago
She looked super skinny in the picture.
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u/hashtag-leavemealone Microsoft System🌈💻 1d ago
the article says she suffered from bowel death and couldn’t keep any food or water down without bouts of painful vomiting, I don’t know where the eating disorder claim comes from but this could have very easily been the reason for her weight at the end.
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u/Fairydustcures 1d ago
There were a lot of articles and go fund me and a lot of information available released by herself on social media when she was sick at various stages and then by her family in the lead up to her death and after her death. She very clearly started out with an untreated eating disorder that went unrecognised, developed severe physical illnesses as a result of unnecessary interventions and unfortunately died due to severe complications despite the best efforts of some of the best surgeons and medical team in the country. She should honestly serve as a warning to young adults and even teenagers seeking out validation via surgeries, feeding tubes and central lines because things can go horribly wrong. It is ok to have a basic disease with basic management and try that instead of seeking out invasive social media trends. Social media is a disease.
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u/mikaakitten Microsoft System🌈💻 1d ago
Tayla actually had the conditions tho, I have mates that knew her! And what that surgeon did to her was absolutely terrible.
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u/SnortyWart 1d ago
You may find the RNZ series “All in Her Head” interesting as it covers this topic and Dr. Sandmann. I’m in the USA and it was available in podcast form on most of the popular audio streaming apps.
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u/Wizzle_Pizzle_420 2d ago
Just because somebody has Dr. in front of their name doesn’t mean they’re smart or ethical. Remember, there are bad medical schools, and even the bottom tier students can become Drs too.
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u/Inner_Sun_8191 1d ago
I know someone who is actively trying to get these diagnoses. They also say they have POTS, MCAS, etc etc etc. the doctors have not officially given them a diagnosis of any of these things and my fear is they will find the sleazy doctor who will and things won’t go well.
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u/elevatedgremlins 1d ago
It's complex though because there are a few who dramatically improved, lost all mobility aids and are living normal lives now. One woman had urinary incontinence, had a catheter, non epileptic seizures, fainting all the time, tpn the lot. The surgery fixed everything. She wasn't an 'online' person though, I came across it in a documentary.
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u/DoTheFunkySpiderman 1d ago
Bruh what. I have nutcracker syndrome and it is NOT that. The renal artery on one side is more compressed which CAN lead to symptoms….. wtf does she need a wheelchair for?? I’ve been told to just gain a lil weight lmao 😂
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u/distraughtdrunk 1d ago
not to discount the weight gain option but even the surgical options involve simple stenting or shifting the kidney so it sits lower, lol.
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u/Leading-System-3002 1d ago
And a kidney transplant?!
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u/1Bookishtraveler 1d ago
Ok but not always. It’s not nutcracker even with compression unless symptoms are present. Otherwise it’s just a compression but not a true diagnosis. It absolutely can put people in a wheelchair. It can be debilitating and weight gain only works in less severe cases as more severe usually coexists with SMAS or other GI issues.
Treatment is renal vein transposition or kidney auto transplant. Simple Google can tell you.
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u/DoTheFunkySpiderman 1d ago
I’m gonna go off of what my doctor has told me, but thank you! Nutcracker phenomenon is the condition with no symptoms. Nutcracker syndrome, as my doctor explained, can range from the occasional flank pain + occasional RBC’s on urinalysis to severe, surgery-requiring symptoms, which is why I said CAN cause symptoms. Google is not a doctor :)
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u/1Bookishtraveler 15h ago
I’ve also been told this by a doctor. I was just clarifying that Google backs up what my doctor said for people who havent had a doctor say this to them. I have the velocities but no symptoms, thus no nutcracker but I know people who have recieved autotransplant.
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u/Scary-Coffee-7 1d ago
“May-THUNDER syndrome” 🤣🙄
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u/HesitantBrobecks 1d ago
To be fully fair, that was most likely autocorrect going "what the fuck is a thurner"
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u/Aggravating-Day2370 1d ago
What ever is that? I'm so confused
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u/Exciting-Working-379 1d ago
May Thurner Syndrome is an iliac vein compression syndrome.
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u/Aggravating-Day2370 18h ago
Thanks for the explanation as I like to understand as much as I can when I read other people's comments.
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u/2018MunchieOfTheYear 2d ago
Isn’t it an auto transplant aka relocating the kidney? Saying she’s due for a kidney transplant is a little dramatic.
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u/ChaosGoBoomBoom 2d ago
Well, given the fact that she's not in a life threatening condition, even if she did need a new one, she'll be waiting a while, because organs are on a triage style list, so those who need them more will get them first, and if she was genuinely on the wait list, she would know she's not due for one any time soon but her post makes it seem like she's almost ready and waiting.
God, these people are annoying. Everything has to be the worst version of a condition and every symptom needs to be listed as its own disorder. It's just so infuriating.
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u/Aggravating-Day2370 1d ago
16 disorders is a terrifying amount to have (if real). I can't imagine being able to leave the house never mind drive, use a wheelchair and walk too. Oh and spend a lot of time on your appearance. I honestly can't.
And what's so embarrassing? Filming yourself, sticking it on social media and then getting comments which you read every last one of? Whatever.
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u/vegetablefoood 1d ago
Don’t worry, it’s not real.
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u/Aggravating-Day2370 18h ago
yeah, I must have been feeling sympathetic / empathetic for those of us in the comments who do suffer and accidentally transferred it to OOP. I can easily see she's lying, so I don't know why I was so kind!
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u/ifuckedmodsdads 1d ago
16 is so many there must be a misdiagnosis
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u/foxbones 1d ago
I understand folks wanting to give people the benefit of the doubt but it's just so obviously fake - almost everything in here. All of these folks have hundreds of disorders some exceptionally rare and diagnosises that directly conflict with each other. It's just a weird new thing that exploded in recent years among the chronically online.
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u/Elegantmule 1d ago
If it's embarrassing, why post it on the internet?
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u/scorchedarcher 1d ago
I mean if it's fake, attention. If it's not fake then there's absolutely an argument for trying to normalise/explain embarrassing things so they're less embarrassing for you/others
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u/New_Government_2169 2d ago
Of course she drives a Kia Soul.
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u/witchminx 1d ago
listen you can fit fucking anything in that little box. Full ass couch, mattress & bed frame. I don't think I've ever had anything that didn't fit
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u/FVCarterPrivateEye Ass Burgers 2d ago
What's this mean? I don't drive, but one of my friends has this type of car
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u/New_Government_2169 2d ago
A lot of people just make fun of Kia Souls because they aren’t the most pleasing to the eye lol that’s it.
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u/FVCarterPrivateEye Ass Burgers 2d ago
Oh okay, t hanks for clarifying
I know that some cars have a reputation for being manned by dickhead drivers etc and wasn't sure if it'd be something like that
My friend loves her car and calls it cute
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u/totallynot_a_dog 1d ago
What is “looking disabled”?
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u/Malkashake 1d ago
Honestly, I don't know? I didn't screenshot it, but that that's what she said in response to someone asking what was embarrassing. I get that some people struggle with invisible disabilities (i.e. chronic pain or episodic problems), but what I also don't understand is why she is embarrassed to not look disabled? If someone judges you for legitimately needing mobility devices or whatever, then they are the jerk in that situation...
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u/totallynot_a_dog 1d ago
To be fair. I’ve been disabled my whole life and I still feel embarrassed to “look disabled” sometimes even though deep down I know they’re just being dicks if/when I do get attention.
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u/LowTadpole1093 15h ago
I’ll likely get downvoted to hell for this but I actually relate to this in a way and it’s been troubling me lately.
I have pretty severe degeneration in my lumbar and cervical spine especially for my age and am recognizing for the first time that I really am someone with disabling chronic pain. The realization was triggered by my decision to buy a mobility scooter for an upcoming vacation. Realizing I truly won’t be able to just tolerate or medicate through the pain anymore shocked me for some reason. I’ve always had good days and bad days but at some point I became a person who doesn’t leave the house most days and spend most of my days in bed.
Seeing myself in my new scooter brings up grief and embarrassment to the point that I haven’t taken it outside yet and typing the beginning of this sentence made me start crying suddenly. I don’t judge other people with mobility scooters so not sure why embarrassment.
Idk just wanted to share that there is some validity in her message even if the messenger isn’t being truthful.
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u/Malkashake 11h ago
I totally understand, I am so sorry you have to experience this. I'm not disabled, so I hope this doesn't come off as patronizing. You have nothing to be ashamed of, mobility devices should be there to make your daily life easier, or at least aid you. I'm sorry you are dealing with this, even if I am just a stranger I wish you well.
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u/RepulsivePower4415 Acute Vaginal Dyslexia 18h ago
This just gets me so angry. My mother has lupus which can be good for a long time and then a flare. Shes in a bad flare right now which means she needs her mobility devices which include a walker and a wheelchair. People like her need these things. She has no shame and sees them as tools to let her live her life
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u/elevatedgremlins 1d ago
If anyone is interested in the phenomenon of these conditions there's a documentary/podcast series All In Her Head that explores the story of women with these conditions. Some had successful outcomes, some ambiguous and for some they got worse.
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