Me in ER with severe dehydration & tachycardia from POTS flare (undiagnosed at time) Dr: “How much did you drink…

Me in ER with severe dehydration & tachycardia from POTS flare (undiagnosed at time) Dr: “How much did you drink last night?” Me: “I don’t drink” Dr: “Tell the truth - if you don’t we can’t help” Me: “I’m allergic to alcohol. I’ve had nothing to drink.” Dr: “Don’t lie” 🧵 /1

I had gone to the ER begrudgingly after spending 48 hours getting progressively worse. My heart rate was nearly 180 and oral fluids were not working to bring it down. I had fainted, was dry as a bone and incredibly dizzy. /2

The doctor who saw me was SURE I was binge drinking the night before. I get it - POTS can look & feel a lot like a severe hangover. But when a patient tells you they’re allergic to alcohol - and when you witness them wheeze & become woozy from hand sanitizer - believe them? /3

It was heartbreaking to be dismissed in this manner. They ran IV fluids including a banana bag - but it was obvious they were doing it because they thought I was drunk - not because they believed that something was wrong. /4

My vitals immediately started to stabilize from the fluids - at which point I asked the doctor WHY I was so dehydrated. I told him - clearly and confidently - that I had not been drinking. That I consumed ample amounts of water & electrolytes and kept getting more dehydrated /5

His response? “Whatever you tell me is confidential - if you have a drinking problem you can admit it. You were stumbling a lot when you came in.” You would stumble too if your heart rate was 180 and your blood pressure was 60/40! /6

I stuck to my guns and told him repeatedly that I don’t drink. That even the smell of booze makes me sick. That I needed help figuring out WHY I was dangerously dehydrated. Eventually he seemed to relent & believe me - perhaps because my blood tests showed no trace of alcohol /7

At this point you would think he would say sorry right? Or perhaps be concerned and try and figure out WHY a seemingly healthy young patient is presenting with severe tachycardia and dehydration? Nope. Once he ruled out alcohol - he told me it must be “anxiety.” /8

He got my blood pressure up to 80/50 and prepared to discharge me - telling me I was “fine” and there was nothing more to be done. People who are “fine” don’t faint for no reason. They don’t have a heart rate of 180. They don’t get so dehydrated they need IV fluids /9

None of that mattered of course. In the span of a few hours I had been accused of being a drunk, diagnosed as overly anxious and then told nothing was wrong. We did blame, misdiagnosis and gaslighting all in one visit! /10

This interaction was admittedly one of the worst ones I had with respect to POTS - but it was far from the only time I was ignored or blamed for my symptoms. HCWs - please realize that you not knowing the answer doesn’t automatically mean it’s the patient’s fault /11

I was undiagnosed at the time - but presenting with classic symptoms of POTS/Dysautonomia. If the medical team had been more focused on my history and symptoms - and less on accusations and judgement - perhaps they would have figured it out. /12

Instead I was sent home frustrated and sad - once again feeling let down by a system that is supposed to help you when you need it. Anxiety is a real diagnosis. It’s not a term to be thrown about whenever a patient looks nervous. /13

POTS patients almost always look nervous. The condition is a literal malfunctioning of your autonomic nervous system. When I’m in a flare I’m tachycardic, breathless, sweaty and shaky. I often stumble and fall down. I’m dizzy and sometimes slur my words /14

I can understand WHY a doctor might think someone presenting this way is anxious or drunk - but at a certain point you have to listen to AND believe your patient. You have to do your due diligence as a medical professional before slapping an incorrect diagnosis on a patient /15

Sadly I went through these battles for years. Multiple specialists and ER doctors dismissed me as either “fine”, “anxious” or both. It took me passing out in public and having an advocate go with me to the ER to finally be taken seriously /16

If you think you may have POTS & you’re struggling to get a diagnosis - please know you’re not alone. Many patients are misdiagnosed for years. The best advice I can give is to bring an advocate to ALL appts & ask for orthostatic vitals. Remind them anxiety isn’t positional /17

If you’re a healthcare worker - please learn the signs and symptoms of this debilitating condition. We are seeing more and more people with POTS following COVID infections - and the longer it takes them to be diagnosed the more harm is done /18

When you tell a patient nothing is wrong - or accuse them of anxiety - you impair their ability to seek help in the future. You make them distrustful of the medical system. You compound their trauma. If you don’t know - say so. We will understand. Just don’t blame us /19

Lastly - listen to your patient. I know HCWs are busy and overworked but we know our bodies best. You can learn a lot from a detailed history. Pay attention to the clues we’re giving you. Withhold judgement and keep an open mind. /20

I am forever grateful to the doctor who finally figured out that I had POTS - as she opened the door to treatment options and lifestyle modifications that restored some of my quality of life. But sadly I will never forget all the doctors who dismissed me. /21

When you work in healthcare you have a tremendous responsibility. Lives are in your hands. Mistakes, misdiagnosis and abuse can maim and kill. One bad experience can wipe out many good ones. Never forget we’re people too - and we need your help and your compassion. /end

POTS (postural orthostatic tachycardia syndrome) can take years to be properly diagnosed. My article examines the LONG road to diagnosis, tips & tricks for the dreaded tilt table, how to handle gaslighting, what tests to expect & more: disabledginger.com/p/its-just-anx…

This experience is why all patients should have an advocate. If you want to learn more about why an advocate is important - or how to be an effective advocate for a disabled patient - I wrote an article about it in my chronic illness guide to healthcare! disabledginger.com/p/how-to-be-an…

I should have included more information on what POTS is - my apologies! It’s a form of Dysautonomia & I basically live my life upside down. Having a letter from my cardiologist to take to the ER has made experiences like this less common My intro guide: disabledginger.com/p/living-life-…