Therapy is such a two edged sword because it does wonders for me, but I can feel desperate when it neglets my physical symptoms.


yeah definitely! it can be really hard to find a therapist that’s knowledgeable about chronic illness and also uses types of therapy that work for you :(


I’m having the same issue a lot lately it’s extremely frustrating and invalidating


i remember one of the times i went to the emergency room my blood pressure was like 80/50 and my heartrate was so ridiculously high. the doctor told me it was normal for females to get so anxious that thjs happens and i was fine. then he told me 2 buy his book about curing anxiety. i was so angry i almost tried 2 throw hands lmao. Constantly thinking about all my friends and family and doctors who told me it was alll in my head and i was crazy is insane.


that is insane, i can’t believe they would just tell you to buy a book??? i’m so sorry, i’m so glad you got through all of that and finally found a diagnosis now though


the gaslighting is very real ://


My heart was at a resting 160bpm. At the er they kicked me out with no one and no walking aid while cognitively impaired....as if I was being dramatic. They are so out of touch with reality. It's sicking, metaphorically and sadly literally sometimes.


i swear some doctors have literally zero empathy. im so sorry that happened


Thank you for your empathy. It was truly traumatic, I couldn't even communicate much. They even took my blood against my will and am x-ray, and gave me benzos without my permission cuz my autonomic system hates benzos. After I was laying all alone on the waiting room floor and I was delirious...the person who stopped first and checked on me to help; they were the janitor. She too empathized and was so upset at how she found me. It meant the world to me, but I also knew if I waited someone would save me for sure. I know because I'm empathetic and nothing in the world would make me walk past someone in need like that. It's really sad. Idk why some are even doctors.


I mean, I had what I assume was a hyponatremia episode, where I had seizures and they tossed me out, after accusing me of taking drugs of course. My family wasn't much better, and refused to drive me to another er and left me seizing for 13 hours.


I'm so sorry you're having to endure all of that. Of course they did 🙄 They accused me of taking amphetamines or laced weed. I take Adderall for my ADHD and I smoke for apatite. My doctor's are all aware and i and had already told them their med list wasn't up to date. It's horrible and only makes it all more stressful so that they then can call us crazy and dramatic. Then the people you should be able to depend on aren't remotely dependable or kind. My ex was the trigger twice and then blamed me and then didn't call 911 not even when I begged. I had to do it, and relay all my medical info and what not while cognitively impaired. A month later he passed out and I did all the care taker things and call 911 and told them all his medical history. Which I now realize I know his and his parents but he doesn't even know all my meds or how many I take. People are fuggin' jerks! I'm so sorry there's a bunch of them around you. I said that I had to help him because "I'm not a monster."....that means he was when he left me unable to move or think for hours on end. So that means anyone who leaves someone seizing is a monster....especially for 13 hours. Wtf. I'm mad for you. ::Hugs:: it'll be alright. We all have each other. Don't forget that. Not everyone is so easily so cruel and selfish.


Take some time to be proud of yourself for listening to your body and for continuing down the road that helped you find your diagnosis! We made it this far, we made it through the crowds of people telling us “it’s just stress/anxiety/being out of shape, stop complaining”


you’re right, thank you so much! i am proud of you as well <3


I have hyperpots one of the first times I went to the ER my bp was 197/140, they freaked out went through some diagnostics, admitted me over night then after a normal echo told me it was anxiety. No explanation of what they were looking for just “congratulations it’s your female hysteria”. Didn’t give me a cardiology referral but gave me a Psych referral.


i’m so sorry that happened to you, i can’t believe they would decide a psych referral was reasonable for that. i’m so glad you were able to find a diagnosis


They told me it was paroxysmal hypertension caused by anxiety.


What would they say when a male person came with this symptoms?


Lol idk but anecdotally my male partner went to the same ER after eating too many Brazil nuts and fearing selenium poisoning (he did eat A LOT of them) and he was treated like literal royalty. They ran every test in the book. Dude just had diarrhea and nausea, his electrolytes were solid. They still admitted him for observation. Doctor gave him his card and told him to call if he had any other symptoms. He was completely fine.


I'm not sure, but I've two male friends with dysautonomia and another male friend has a disorder that causes him not to be able to convert any sugars. They were all laughed at, called over dramatic, talked down to, disbelieved, sent to psych or therapy for it, told it was anxiety or somatic symptoms, expected to do more, called lazy, etc.. Even two of their family's are just as bad. One of them was like me where he would work sick because he's always been the able useful caretaker. Now that he can't provide all that he's learning who his true friends and family are. Which has been so hard for him. I went through the same. I had to remind him that his worth and value aren't based on how able his body is. My guess is when doctors don't find anything (whether or not they tried hard enough) they find it easier to blame the patients mental health as opposed to admitting to their inadequacies; female or not. Perhaps they try harder with men sometimes, but I get the idea that even men mystery cases are treated the same. My friend just check himself into a psych ward probably because his family, job, friends, and doctors all drove him up the walls, not at all because his illness is mental. I did the same about 2 or 3 years ago. I hate that I have to remind my friends that they aren't crazy, and aren't liers, and arent cry babies....it breaks my heart. But I know I needed that badly at one point in my patient journey, and I wouldn't be here without the love, education, and support I recieved from internet support groups and posts like this one. So I give back to the community. My male friends face the same with no empathy just like a lot of us females. I hear you though, being a female is hard for many reasons.


I do wish they would at least listen to your heart before dismissing symptoms as anxiety when you're young, my primary doc just threw benzos at me and sent me away when I was 15. Didn't get diagnosed until last year at 29 even though I had clear symptoms and fairy frequent syncope when I was younger plus GI issues Therapy can be awesome though and sending you hugs and spoons


thank you!! i’m sorry you had to go through that for so long, i’m proud of you for finally getting a diagnosis! sending hugs and spoons as well !!


What I find really upsetting is after you get a mental health diagnosis, doctors are always inclined to think that any physical symptoms you have are caused by your having anxiety, depression etc and defaulting to that and don’t necessarily listen to your concerns. I think for me what really gave it away is that I felt so much bodily “anxiety” (racing heart when standing and after meals and other POTS triggers, sweating, tremors, nausea, GI upset) but I wouldn’t have any thoughts of anxiety in my head at the time of that happening. Like I wouldn’t be worried about anything or scared of anything yet these physical symptoms were still happening. I knew it was a physical thing and not a mental thing but because I got my depression and anxiety diagnoses before I got my POTS one, doctors want to blame it on that. I’m lucky I had a supportive family and we investigated my physical symptoms through the proper channels and obtained the POTS diagnosis. Still working through the damage caused by medical professionals telling me all these things will resolve if I resolve my MH problems, take antidepressants etc. Chronic illness is no joke and yeah it does affect my mental health because it limits what I can do and affects my life - but mental illness does not generate my POTS symptoms.


this!! i often say that my anxiety was caused by the symptoms of POTS and how they affected my life and quite frankly, scared me when I didn’t know what they were. Like you were saying, the symptoms of “bodily anxiety” were happening when I wasn’t scared or anxious, which is why I was so confused!


Im literally crying reading this because I've never been able to relate to anything so much. The second I mentioned it to my doctor she, and all the other specialists, just wanted me to take anxiety meds. My mental health was at the healthiest it ever was at the time my symptoms manifested. After 4 years, I'm seeing a new doctor to get my official diagnosis, and already they want to treat it as POTS not anxiety.


all i have to say is i’m so sorry. because this was me too. and i actually recently looked back at my old therapy notes and saw something i wrote down like this. and then they found out what’s wrong and man.. i’m just so sorry. just know you’re not alone.


I think I super lucked out. I was having a panic attack about some very dysfunctional thoughts I was having and found a therapist who was 5 minutes walk from my house. I told her I was crazy anxious and realised I needed some help. She gave me the modern anxiety questionnaire that ignores all physical symptoms and focuses on what situations trigger you to feel anxious. I went in for my first session and she told me I didn't have anxiety. She said she wasn't quite sure what was going on but let's have a chat and see how we go. Turns out to be a rubbish childhood with POTS leads to a whole load of adrenaline and that's causes me to hyperventilate. Dealing with my childhood issues first made it so much easier to then recognise I was experiencing very physical symptoms getting worse to get a POTS diagnosis.


i’m so sorry you had to go through that as well. i’m happy you found a diagnosis despite everything


Woah, that’s next level. As a former mental health professional, I’m really sorry you went through that.


I went back recently (looking at old medical appointments) and emailed back information to the old medical professionals from last year who had made clear mistakes/oversights. And to the ones who cared but shrugged and gave up in 30 minutes time. Figured sharing what it was would help them better diagnose people in the future. One doc in the ER said “nothing wrong”, “her heart doesn’t go +30bpm”, so I sent in the pics of that same appointment where my heart was low & high on the emergency monitors (40+ bpm difference), with the update on what conditions I had been confirmed diagnosed with over the past yr. Nothing wrong = documented “brainstem compression”, significant drop in cerebral blood flow, possible skull surgery, autonomic system dysfunction, etc. I get it, that this isn’t someone’s specialty. But they need to be aware and not making it worse.


Lol this was me. They kept treating me for an anxiety disorder, I had to fill out these tables just like the ones you pictured to re enforce that it was all in my head. A lot of money wasted on this crap for something that was a real physical problem when I never even had anxiety (other then a normal amount for an 11 year old with severe undiagnosed POTS)


CBT, biggest medical gaslighter lol Helps w some things but man I had pots for years and never got it checked out bc of social workers telling me it’s not physical


CBT is actually very useful but not for POTS.


Yeah I still use it


Between how the Psych profession abused the CFS community, how they treat trans people through most of the world, and my own experiences being misdiagnosed with BPD, I'm pretty prepared to join the anti-psychiatry movement. Medical arrogance is a problem across the board, but in psychiatry they combine that with some piss-poor standards of research and often poor ethics.


i’m sorry to hear you got misdiagnosed and you’re right, psych can be really really harmful. i’m a psych student so i have a lot of cognitive dissonance for these reasons, i personally think much of the harm in psych comes from the fact that it often focuses on making people more productive rather than actually helping them feel better. however i also think that it’s important to have some sort of mental health treatment available- just one that cares much more about helping patients then “fixing” them


Oh my GOSH yes. They started misusing/misapplying CBT so badly, turning it into a tool to gaslight ourselves into simply going back to work and pretending we're not sick. The number of professionals hyper fixated on "getting you back to work" rather than "getting you back to health" is terrifying. My desperate attempts to convince myself I was fine and to just keep working outright disabled me.


Luckily for me heart problems run in the family, so drs took me somewhat seriously on this. Unlucky for me it took my dad having a triple bypass to get a cardiologist seriously wanting to pull things apart. This is when they finally caught I had a global systolic dysfunction and had been losing EF every year. I had been told everything was benign and it was my POTs and anxiety. Its good to listen to yourself you know what’s normal and what’s not. This belief would’ve lead to me being in heart failure before they took me seriously. Unfortunately, the cause is still not completely known but it’s suspected its the CFS weakening my heart. :/


This actually hurts to read. I'm so sorry that this was a part of your experience. Sending you so much love and healing. 🤍


Gaslighting should be illegal.


I had to use google to diagnose and treat myself because every specialist at one hospital kept blaming anxiety. I'm finally getting my official diagnosis almost 4 years later at another hospital and immediately they knew it was POTS.


I wouldn't say this is gaslighting. For like 90% of people with anxiety, their heart palpitations aren't from a heart problem so it's good to remind themselves of that if that's what's worrying them. This is more a problem of trying to apply one approach to every patient, it'll never work for everyone.


yeah for sure, ty for pointing that out! pots symptoms can look a lot like anxiety and this could’ve been really useful if i was someone who was *just* having anxiety! in my case, this was after complaining several times to my dr about all of my pots symptoms and sill being blown off and told it was all in my head- while my dr probably truly didn’t know what was wrong, it wasn’t reasonable to continue treating it as anxiety in my case


I would say it is, since if the doctors had ran the appropriate tests right away they would have found out so much sooner that op has pots.. It shouldn’t be that difficult to diagnose when you’re actually listening to the patient’s concerns.


wow this is so relatable! exactly what everyone around me said too. and i told myself it was all in my head for years and years. so sad


There's a fine line between someone saying you have anxiety as a result of an anxiety condition directly vs because of something like POTS. Most doctors throw their hands in the air and say, "It's just anxiety" and you could have a major disease or issue and it's like they don't care. Yes, lots of serious things can and do cause secondary POTS. Even Neurogenic POTS is caused by nerve damage. That's serious.


https://youtu.be/Fb3yp4uJhq0 This woman tells a story that may sound almost too relatable for some of us. It's pretty inspiring.


I get what you’re saying, but what you wrote is correct. POTS is not a heart problem. Unless you were also later told you have a heart condition, then there isn’t anything wrong with your heart. Palpitations can be caused by anxiety and may also be triggered by the tachycardia associated with POTS, but controlling anxiety can also help control tachycardia and thus palpitations. So it isn’t really wrong, in fact, it’s good to remind yourself that your heart is healthy and that calming down is a good way to control palpitations.


I just don't think there was any way OP could have possibly known that it wasn't technically a heart issue at the time... The main idea here is that they were gaslit into dismissing their real symptoms of a real condition. And no, "calming down" did not bring down my 130 heart rate from just standing up today, my POTs medications did.


We just have different takes on how to view POTS. I don’t see it as dismissive to say that controlling anxiety can help with tachycardia and palpitations. I never said it’s the only way to control it or the best way for everyone. I take a beta blocker, but if I didn’t also take anxiety medication and use mindfulness techniques it would be a lot worse. There are multiple ways to manage symptoms, and anxiety is a real condition than requires real treatment. It often goes hand in hand with POTS and managing one helps manage the other. To say that OP was dismissed because they actually have a “real condition” ignores that anxiety is also a real condition that can make POTS worse.


While I agree that anxiety through stress hormones can of course exasperate POTs, the possibility exists that OP doesn't even have a true anxiety disorder at all. They may have just expressed concern about their unexplained symptoms and got labelled with anxiety. They were obviously told that their palpitations were only the result of only their mental health and not physical. When you've been accused of having anxiety based only on your undiagnosed POTs symptoms and concern over those symptoms, it sours you on psychiatry a little bit. Yeah, anyone with anxiety could benefit from managing it, that is clear. I don't think that is the point of this post though. This kind of thing happens to way too many people with invisible illnesses. It delays diagnosis and proper care, and harms our mental health even more than the actual condition itself.