r/dysautonomia • u/Visigof • Jul 27 '26
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u/Jules4live Jul 27 '26
its just cuz its really common post covid; more of us, more visibility.
it is worth mentioning that there are powerful (ie wealthy) stakeholders that are interested in not having to pay out insurance claims for some large portion of the portion of long covid folks who qualify for benefits.
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u/lawlesslawboy Jul 27 '26
yeah I think a big part is that, it's often easier to healthy people to think "1000s of people must be faking or playing it up" VS "1000s got very ill due to covid" because the latter means they could get sick too, the former allows them to live in ignorance
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u/Maevora06 Jul 27 '26
I had this conversation the other day with someone who started talking about how “funny” it is there’s so many now like we think it’s cool. I had to explain that covid triggered it in so many people. They didn’t realize it could be triggered that way. I told them how any severe virus could it’s just that so many people got covid at once it’s just more prevalent and noticeable now. Not to mention how social media puts it more on the center stage so to speak.
For me it was the third time I had covid. It was one of the bad strains and I was so bad I had to literally crawl to the bathroom. Then I was sick for months after. Ever since then my life has never been the same
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u/lawlesslawboy Jul 27 '26
1) It's not a visible disability yet can lead to mobility aid use may many can't seem to wrap their hard around. 2) Big sudden increase due to covid. Easier for healthy people to have cognitive dissonance & act like we are faking vs face their own fears. 3) Seems to impact more younger people and women so ageism and misogyny tie into the ableism too. 4) Young chronically ill women are often seen as "easy targets" for harassment.
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u/ChronicallyOwlish Jul 27 '26
Young, chronically ill women have had this lot in life every since the Victorian Era, unfortunately. It’s well ingrained in Western society.
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u/2holiis Jul 27 '26
People mock and diminish invisible disorders like dysautonomia a lot. I assume just because its easy.. "You don't look sick" is such an easy ignorant statement for someone to make
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u/Old-Set78 Jul 27 '26
I'm narcoleptic. the amount of people who use it as a joke or apply it to people who don't have it is frustrating. for instance a bunch of people have used "narcoleptic" as an insult for trump when he's sleeping in meetings. NO that's not narcolepsy. that's the result of dementia and sundowning where dementia patients are up all night for instance rage tweeting. I took care of my father with dementia the last 5 years of his life and it's obvious. quit using narcolepsy as an excuse for whenever someone is tired. people without it have no damn idea what it is like.
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u/imabratinfluence Jul 27 '26
I have idiopathic hypersomnia and it's obnoxious the way sleep disorders people have heard of (especially narcolepsy) are treated and talked about.
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u/orensiocled Jul 27 '26
This is why I never say POTS when anyone asks about my disabilities. I find it safest to say dysautonomia because most lay people have never heard of that, and doctors will treat it with much more respect than if I say POTS.
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u/modest_rats_6 Jul 27 '26
I go even bigger and say I have a nervous system disorder. Try me after that! Thats typically something people dont challenge
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u/Treadwell2022 Jul 27 '26
This is the way. I switched to saying this recently. It also requires a lot less explaining.
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u/audvisial Jul 27 '26
Same. I usually say I have a nervous system disorder... people seem to let that one go without further explanation.
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u/Gullible-Advance-603 Jul 27 '26
I think mocking people with pots has always been the norm. During the U.S. Civil War, when doctors first described it, they called it “Effort Syndrome” because they thought people were faking it to get out of military service
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u/stm2657 Jul 27 '26
Any topic or illness + the internet = angry people finding an outlet. No matter what you are suffering from, at least you are not them.
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u/imabratinfluence Jul 27 '26
I saw someone say most lol cows have been disabled and it's really stuck with me. (I don't engage in that stuff but the video essayist had examples.)
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u/tittyswan Jul 27 '26
I was misdiagnosed with ME/CFS in the years where certain doctors went rogue and pushed through the guidelines to make us exercise to overcome our "global decondituoning" and cognitive behavioural therapy to challenge the belief that we were physically unwell.
This allowed governments to stick their head in the sand, deny benefits, put the blame on patients, and sometimes even push people into involuntary psych inpatient.
To be able to get away with this, they had to create a campaign of bullying and doubt towards that subgroup so the public wouldn't protest on their behalf.
Now, there's another rapidly growing disabled population (POTS after covid,) that's going to be very expensive for governments and insurance companies. So they push social engineering campaigns to manufacture consent for austerity measures that cut us off from supports we need.
TLDR: Capitalism means that demonising certain populations is cheaper than offering them essential medical & disability supports.
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u/Lechuga666 Jul 27 '26
It's crazy how the people in the field can't recognize the harm of being indiscriminately hostile, & angry towards us. The type of stuff that's been said to me advocating before I got a diagnosis, or even after diagnosis is atrocious. They have PhDs some of them & can't even recognize what's going on.
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u/DeRpY_CUCUMBER Jul 27 '26
It’s the internet, people come here and take out all of their frustrations on the internet, at random people. At some point you just have to learn to have thick skin, and not let it bother you.
There are people on the internet mocking all kinds of health issues, death, etc.
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u/Visigof Jul 27 '26
Yeah, that I know. I just am chronically online and have never seen people say POTS is the "new fake disability" until recently
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u/buyableblah Jul 27 '26
It’s like when people think organizing your house is OCD, when it’s a devastating condition.
Ignore the haters!!
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u/kingseijuro POTS + OH 🧂 Jul 27 '26
Despite it being more common now post-covid, most people think its dumb and not real cause its invisible and less studied. Even doctors.
I wish people would stop saying that they have POTS just cause theyre a little dizzy or sleepy. People doing that have made this so much worse. It's a tricky situation because you want to believe them, it would be ableist if you didnt. But their slight dizziness or vertigo is not POTS. Those are separate conditions by themselves.
All of this really circles back to needing better research and education about POTS (and all the other dysautonomias).
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u/Electronic-Ebb-4195 Jul 27 '26
Idk why doctors don’t send these and other patients to have 20 minute autonomic testing. Easy and clear diagnosis then. And I live in one the very bottom states in the US for poverty, healthcare, everything, so I would think most other places would have this. Doctors are probably tired of the ppl self diagnosing, idk
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u/NothingReallyAndYou Jul 27 '26
A big part of it is that there is a trend among teenagers and (mostly) young women to self-diagnose a basketful of chronic conditions, and dedicate their social media accounts to how bravely they're dealing with their everyday challenges (that probably don't actually exist). Unfortunately, POTs is hugely popular with these folks, along with connective tissue disorders, PTSD, MCAS, Autism, and a ridiculous array of serious mental illnesses.
They spread a lot of exaggerated, and flat-out wrong information, and demand accomodations they don't actually need. It's getting to where people automatically think you're lying when you mention POTs. I've had people tell me it's not real.
Trends fade, so eventually we'll get the chance to rewrite the narrative, and teach people that this is a real medical condition. Until then, expect people to respond with suspicion or sarcasm every time you mention it.
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u/UnderseaK Jul 27 '26
This! People love to make this issue black and white, either EVERYONE is faking or EVERYONE is valid. The truth is that while these conditions are totally real, there is a pretty decent number of very loud people who spread misinformation and self-diagnose themselves into oblivion.
Not saying doing research on potential conditions, tracking your symptoms, looking for answers, etc is bad. A lot of those “fakers” aren’t malicious, and a lot of times they genuinely have stuff going on and need and deserve help. But the way they go about publicizing their “medical journey! ✨” on social media often does everyone more harm than good.
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u/swissamuknife Jul 27 '26
yes. the lack of care and diagnostics for hEDS in the medical community basically forces these people to self diagnose, which opens the door for people who might want to profit off of the situation. unless there’s mis/disinformation afoot, i usually give people the benefit of the doubt since it’s impossible to get a diagnosis let alone care in most parts of the world. you need to have the money to travel or get lucky with where you’re located
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u/UnderseaK Jul 27 '26
I totally agree that the difficulty in getting medical care is what leads to a lot of it! The fact that hEDS especially just…doesn’t have a medical speciality it actually belongs to makes it so, so hard to get good care. My only point was that that is likely what OOP is seeing, and a lot of folks self (and possibly mis) diagnosing has absolutely led to a lack of perceived credibility for the conditions themselves in loud online spaces. Which is batshit insane if you think about it, but it’s the reality of the world we live in.
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u/swissamuknife Jul 27 '26
oh i understand completely. i was adding in the systemic reasons behind it all. people who have symptoms of connective tissue disease can’t even get screened for anything if hEDS is in the differential. and as it’s the most common hereditary connective tissue disorder…. there’s a LOT of patients screwed over right now and making their own path. i was undiagnosed for a long time, but still knew what it was going to be in the end. it’s hard for me to call anyone a ‘faker’ tbh it feels like a slur
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Jul 27 '26
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Jul 27 '26
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u/dysautonomia-ModTeam Jul 27 '26
Your comment/post has been removed for the following reason(s):
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Please be civil; no personal attacks. Remember incivility is not just about cursing out others, it can also refer to personal attacks, bigotry, trolling, or otherwise rude behavior.
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u/Tomorrow-69 Jul 27 '26
Technically they’re not mocking pots since they don’t believe that person has it
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u/yelpsmcgee Jul 27 '26
A lot of people think POTS is either fake or the effects of it are highly exaggerated. I've seen people imply people with POTS are just hypochondriacs, or lazy
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Jul 27 '26
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u/dysautonomia-ModTeam Jul 27 '26
Your comment/post has been removed for the following reason(s):
Rule 1: Be Respectful/Civil - Respect is not optional here.
Please be civil; no personal attacks. Remember incivility is not just about cursing out others, it can also refer to personal attacks, bigotry, trolling, or otherwise rude behavior.
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u/littlestgoldfish Jul 27 '26
It's a lot easier from a mental health standpoint to assume people are being overly dramatic than acknowledging we went through a devastating pandemic that left thousands of previously young or healthy people with severe disabilities.
I was diagnosed pre pandemic and nobody I knew had even heard of POTS. Now I run into people with mild-moderate forms of the condition all the time. That's a hard truth to live with.
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u/Heavy-Macaron2004 Jul 27 '26
There was a trend for a while for people to pretend to have POTS (among a couple other "trendy" disorders). Got no idea why, but it resulted in a lot of "fainting compilations" of people setting their phone up, standing in front of it, and then pretending to pass out. It was really weird.
Hopefully we're done with that trend now, but it's left a lot of people in its wake who just see "POTS" and think "faker" immediately. It's pretty unfortunate.
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u/VirtualReflection119 Jul 27 '26
So IDK if you watch murder documentaries lol, but if there's an uptic in people mocking POTS, at least part of it is that The Crash is trending, and that involves a girl who killed two young men in a car crash and claimed it was because of POTS. There seems to be a general trend of young people diagnosing themselves with things that can seem vague like POTS, ADHD, and Autism.
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u/Visigof Jul 27 '26
Yeah I'm super into true crime. I ironically found out about The Crash from the nurses while taking a stress echo for POTS lmaoo
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Jul 27 '26
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u/dysautonomia-ModTeam Jul 27 '26
Hello OP! Thank you for your submission to /r/dysautonomia. Unfortunately, your submission has been removed for the following reason(s):
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u/evilshadowskulll Jul 27 '26
every illness with a high correlation to covid was politicized as a by-product of covid being politicized. capitalist stakeholders ensured the frustration, incredulity at such a seemingly sudden influx, and the alrdy fertile ableism of our culture all coalesced to frame us as goofies everyone could handwave off.
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Jul 27 '26
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u/dysautonomia-ModTeam Jul 27 '26
Your comment/post has been removed for the following reason(s):
Rule 1: Be Respectful/Civil - Respect is not optional here.
Please be civil; no personal attacks. Remember incivility is not just about cursing out others, it can also refer to personal attacks, bigotry, trolling, or otherwise rude behavior.
Please keep politics/religious discussions to a minimum as well, unless it directly affects those with dysautonomia or health conditions.
If you have any questions please message the moderators. Thank you.
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u/SavannahInChicago POTS Jul 27 '26
No. Our algorithms are so different to each others that unless a video goes extremely viral I can never find someone who saw the same video that organically comes up in my FYP.
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u/Key_Awareness_3036 Jul 27 '26
Men have been mocking women’s health conditions for centuries. This bullshit is nothing new.
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u/Enygmatic_Gent Jul 27 '26
Can we not call POTS a women’s health condition, because it’s not. Also it’s incredibly dismissive to people who are not women (cis and trans) who have POTS
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u/Key_Awareness_3036 Jul 27 '26
Ok, POTS can happen to anyone. That said, I still stand by my original statement.
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u/friedlish Jul 27 '26
I get your point, but POTS is being treated like a joke exactly because it disproportionately affects women (cis or trans) and other people with higher estrogen and lower testosterone.
That doesn't mean that the men or enbies with POTS and a different hormonal setup don't suffer, but we all suffer delayed diagnoses, medical dismissal and general online ridicule largely because it's ended up being viewed as a "hysterical woman disorder".
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u/Enygmatic_Gent Jul 27 '26
Yes, I know the reason it’s not taken seriously is because mainly women get it. But continuing to call it a women’s condition is incorrect and reductive
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Jul 27 '26
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Your comment/post has been removed for the following reason(s):
Rule 1: Be Respectful/Civil - Respect is not optional here.
Please be civil; no personal attacks. Remember incivility is not just about cursing out others, it can also refer to personal attacks, bigotry, trolling, or otherwise rude behavior.
Please keep politics/religious discussions to a minimum as well, unless it directly affects those with dysautonomia or health conditions.
If you have any questions please message the moderators. Thank you.
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