r/POTS • u/lethalhearts • Oct 14 '25
Accomplishment I won against medical gaslighting
I’m not gonna give too many details but, I had gotten gaslighted over my POTS for years.
Specifically there was this one nurse who was so mean and dismissive toward me, and she got to watch me get taken out of her office by ambulance an entire year later. Over the exact thing she dismissed as nothing. And everyone knows about it too cause I made a big fuss about it at the time. Omg. Embarrassing for her..
Then, I got dismissed as a faker and a liar at the ER and I had to come 3 times via EMS before they admitted me. And I was admitted for a long time.
Guys. I got the top director of the ER to come to my room and personally apologize to me for everything. The biased documentation in my legal medical record got changed by her. And she validated everything.
The director of the fire department apologized to me over the phone and believed every word of my complaint and he agreed to take action against the paramedics who were biased and gaslighting.
It’s a whole thing. I was badly mistreated and I made the biggest fuss about it I complained to everyone I possibly could aboht everything and stood up for myself as best as I could despite being freaking gravely disabled and extremely ill.
I have been treated like a god damn princess at this hospital I swear to god. I am not letting a damn thing slide and people are taking me seriously once they realize that. Nobody is shutting down my voice.
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u/Liquidcatz Oct 15 '25
Just curious what did they admit you for? Here they'd never admit a patient for POTS because it's not a life threatening condition. The only reason they might admit is high BP they couldn't get down.
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u/lethalhearts Oct 15 '25
My HR was staying at 160-170 while laying down for a while. I cannot walk at all without fainting, pre-fainting or atleast falling due to weakness. My symptoms were very severe like, feverish, confused, freezing, disorientated, lethargic. Falling asleep mid convo.
I have never had an episode this bad, I have no support at home, and I am a massive fall risk. Right now I’m on bed alarm, fall risk braclet, wheel chair. There’s times I’ve been needing 2 people to assist me just getting in the wheel chair.
Just couldn’t manage it without intensive care. My PCP had to advocate for me for me to be admitted.
Edit: I also had refeeding syndrome and metabolic acidosis due to not bein able to feed myself for a while leading up to this
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u/Liquidcatz Oct 15 '25
Damn you have a good pcp. They'd never admit for that where I am. Stick with them.
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u/lethalhearts Oct 15 '25
Yeah. I need to write him a thank you card. He’s one of few people that have taken me seriously through all of this. It would be life threatening for me to go home due to being gravely disabled.
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u/Lgs1129 Oct 15 '25
I’m so so sorry that they did not treat you for so long and had zero support. So glad that you finally got the acknowledgement and treatment that you deserve. Hoping that you recover quickly.💕
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u/Michaeltyle Oct 15 '25
Oh my goodness, I feel this so deeply. I have trauma and actual nightmares about one particular nurse in our local emergency department.
A year ago, my GP sent me to emergency and she told me, “We don’t treat diarrhoea here.” As it turns out, it wasn’t ‘just’ diarrhoea at all, it was refeeding syndrome. Because I didn’t stay and wasn’t treated, over a year later I’m still dealing with the metabolic and autonomic instability that came from going through refeeding syndrome unsupported. I actually went through it twice before anyone realised. The third time I ended up in hospital for two weeks, then nasogastric feeds for 6 weeks because my bowel was shutting down from severe hypoglycaemia.
I’m so glad they’re taking you seriously now. You deserved that from the start.
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u/lethalhearts Oct 15 '25
I get it, it’s horrible and traumatizing.
I’m so glad you finally got treated too. We deserve better ❤️🩹
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u/Amk1222 Oct 16 '25
What did they diagnose you with? Thats sounds like way more than POTS. Had anyone ever ordered a long term monitor like at least 2 weeks long?
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u/lethalhearts Oct 16 '25
It reallt does doesn’t it? I don’t have all the answers but, I have gotten a CT, MRI, heart ultrasound, chest/heart X-ray, I had I think a total of 8 days on a monitor. Ect.
My active stand test was very very positive. HR increases with positional changes. Other than that like, I did have refeeding syndrome and metabolic acidosis which is the perfect storm for POTS since there’s lots of overlap and all 3 of them make each other worse.
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u/Little_Television81 Oct 15 '25
HOLY SHIT. You won 🙌 so happy for you. Nurse should be fired. I have gotten gaslit so many times too. Nurse said I had dye on my hand from jeans when I had clear pictures I did not. Fighting against them now to get my medical records amended but probably won’t get further with it.
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u/lethalhearts Oct 15 '25
Thank you. I’m also fighting to get some more records amended. The more we fight against this the less it’ll happen. It’s not ok to falsify documentation I don’t know why it’s so normalized 😒
I hope yours gets amended. 🩵
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u/Weary_Cup_1004 Oct 15 '25
Princess POTS !
👑👑👑👑👑👑👑👑👑👑👑👑👑👑👑👑👑👑👑👑👑👑👑👑👑👑👑
Thanks! We all need empowering hope stories! Feel free to post more victories!
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u/Difficult_Affect_452 Oct 15 '25
FUCK. YES. I am so uplifted and inspired by tbis. Goddamn RIGHT you made a fuss!!!!!! Goddamn right they aren’t pushing you over anymore! Fuck yes!!
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u/Coffee_enthusiast_ Oct 15 '25
Im proud of you that you have the courage to advocate for yourself! 🙏🏼🫡🙌🏼
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u/lilyinnit_ Hyperadrenergic POTS Oct 15 '25
GOOD FOR YOU!!!!!! I am so proud of you for not giving up and advocating for yourself no matter what. Those people that dismissed you have no idea of the hell you live through every single day. You are amazing and you should take advantage of that princess treatment became you deserve it!!
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u/thrwawyorangsweater Oct 15 '25
Maybe a TV or newspaper story about medical gaslighting is in order?
YAY YOU!!!
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Oct 15 '25
[deleted]
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u/lethalhearts Oct 15 '25
What do you mean?
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Oct 15 '25
[deleted]
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u/lethalhearts Oct 15 '25
I’m actually in a larger community. The bias I’ve gotten is mostly because I am young and female or just that my symptoms aren’t constant. One minute I can need 2 person assist and the next I can need no assist. And people are incompetent they see that as “faking”.
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u/3xv7 Oct 16 '25 edited Oct 16 '25
It feels really terrible having something that no one takes seriously or knows how to treat, It feels so awful and scary feeling like you're literally on the verge of losing consciousness nearly all day every day.
I feel like the only way I got a diagnosis and didn't get dismissed for "anxiety" again (of course i have anxiety if my body is failing me) was to literally ask them to recheck my vitals when I stand, that's when I could see them realize something was actually not right and I got hospitalized and diagnosed. It took me 7 trips to the ER and my hr spiking at 170 while laying still in a triage bed before that happened
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u/lethalhearts Oct 16 '25
Omg I can’t believe that worked for you. the amount of times I asked someone to check when I stand instead and they just out right refused and made up some dumb excuse.
I almost think they don’t wanna face the possibility that they could be dead wrong after dismissing me if they checked…
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u/3xv7 Oct 16 '25
I'm also assuming you're a woman and health care workers not taking women seriously is a really real thing, I talked to a nurse when I was admitted who told me she thinks she has POTS too but her husband/doctor keep telling her it's anxiety
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u/lethalhearts Oct 17 '25
HUSBAND?! Oh my god… the state of women’s healthcare makes me so freaking sad.
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u/anonmon7 Oct 16 '25
I’m over the moon for a stranger on the internet rn🎉 You are resilient! Hopefully one day these kinds of wins happen so much that doctors start taking people seriously from the start
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u/rileyswords Oct 16 '25
Good for you, finally getting treated as you should! And I am so sorry you endured all that!
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u/Fantastic_Owl6938 Nov 05 '25
I could sense they would have sent me home from hospital if my heart rate went down because that was the only real visible sign something was wrong. But hours upon hours and it just kept soaring, and despite the doctor saying he doubted I'd need to be kept overnight, I ended up being admitted when my heart rate stayed up.
Saw a cardiologist and she diagnosed me. I feel lucky about that now realising it's probably rare to get that answer pretty fast. I am 100% convinced they would have dismissed it as anxiety had I not made sure to say nothing was worrying me when I was lying there with my heart going crazy. Although they did fortunately tell me they don't like to dismiss these things as simply "anxiety" so that's something. Still troubling to think if my heart rate went down, they would have likely released me and I would have gone on to have the same thing happen again.
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u/ObviousHistorian9209 Oct 15 '25
Good for you for never giving up being your own advocate!!!!!!!