Patients with POTS are frequently misdiagnosed as anxious. An exploration of the diagnostic process, the gaslighting and barriers patients face when dealing with this debilitating condition.
Wow, what a journey you've had. Much respect to you for using your limited energy to give advice to others. I'm sure I'm not the only person who is very appreciative. Thanks again for posting.
Thank you! My hope is that by sharing my experience other patients will have an easier road to diagnosis - which will make spending my energy on it worth it. No one should have to spend years being gaslit and ignored - we need a lot more education and awareness about these conditions.
I'm 63 years old. I was diagnosed less than 10 years ago when I ended up being referred to a cardiologist because of a pulmonary embolism. In reviewing my extensive medical issues he came to the conclusion. His explanation,testing and tratment has focused primarily on my low blood pressure. I have compression stockings and take salt tablets. How long did my POTS go undiagnosed? When I was in grade school (1960's) we would have annual "check ups" with the school nurse. I have never forgotten the embarrassment when she was trying to take my pulse/blood pressure and screamed at the rest of the kids to BE QUIET!! because she couldn't "find" it (and forever after I was labeled as "zombie", "vampire" "dead girl" by my classmates.) MY first memory of feinting was when I was 12, though my grandmother says it happened even earlier. In school, I was often accused of "faking" my various health complaints to get attention or to get out of class. In my 20's I began to believe I was crazy after being accused of being a hypochondriac so often. Every decade, it seems I got another diagnosis of something that previously didn't have a label. But Thanks to your series I'm realizing that many of them (GAD, Fibromyalgia?, GERD, Vertigo, Light Sensitivity, chronic dehydration) all fall under Dysautonomia. Something that no physician has ever mentioned to me to this day! And I'm wondering which Dr I should discuss this with to get my POTS diagnosis expanded so that ALL my specialists will "GET IT" 🙄 I'm glad that the science and medical community is finally STARTING to piece it all together. I pray that further research into identification and treatment is being done (sooner rather than later) and mass education of the medical community is rolled out so NO ONE ELSE has to go through the psychological trauma of missed diagnosis for as long as most of us have. I can't explain how emotional I am to finally have validation. I can't begin to thank you enough!!!
Thank you for sharing your story (also I was called a vampire girl too!). It's awful how long it can take to be diagnosed - but I think the more we raise awareness the more easily it will be recognized by medical professionals which will hopefully help the patients who come after us.
Thanks for laying it all out for us. It's good to learn, and you make excellent and important points.
I don't have POTS or dysautonomia, but as an early fibromyalgia patient, I've had to deal with some of the same obstacles and issues in getting diagnosis and treatment. Thankfully, I've never had to do a tilt table. That sounds excruciating. I'm sorry for what you had to experience to get a diagnosis and be taken seriously. Personally, my heart would be fine, but with the fibro nerve pain I have to shift around a lot just so the pain levels don't build up too much in any one spot.
I wish society was better about invisible illness. I remember my sister had knee surgery when she was in high school. From the outside, she looked fine. But she was recovering from then-experimental surgery and couldn't put weight on her leg for any substantial period. And yet people would see what looked like a young healthy girl sitting on the bus and pressure her to give up her seat, with no idea of what was going on beneath the surface. That kind of thing happens way too much. "Why do you need a cab to go a couple of blocks?" "Why don't you give up your seat on the bus?" "Do you really need the elevator?" "Aren't you just being lazy?" It's all just ableism, and we need more education and awareness around invisible illnesses.
We also need people to be less afraid of taking the measures they need to protect themselves. I had so much pain and fatigue I could hardly walk. I memorized routes across the kitchen. Where are the handholds? Where can I push off to give myself a boost to get across the gap where there is nothing to hold on to? Where do I need to aim so I launch myself at a handhold without risking crashing into something? I did that for a couple of years before realizing that I really should be walking with a cane. I was in my 20s. I looked healthy from the outside. Wouldn't people judge me for using a cane? Wouldn't they think I was faking it, or looking for attention? You young fool. You need this. And no one cares that you're using it. And the fact that you are using it shows them that there's something going on, so most of them will actually be more understanding, not less. And the ones who do judge you for using an assistive device that you very much need? They're the ones who are lacking.
(Side note: My aunt invited me to have dinner at the clubhouse restaurant where she lived. I barely managed to walk across the room. Exhausted, tottering, leaning on my cane. My head was down the whole time because I could barely see straight. Woozy and short of breath, I collapsed into the chair and paused to rest. An elderly man got up from his table, walked up to me, and told me it was inappropriate for me to be wearing a hat indoors and I needed to take it off. I decided to bite my tongue for my aunt's sake. I didn't want to cause her problems with her neighbors. I was also still woozy and short of breath. I would have taken the hat off once I'd collected myself. But all I can think is... If that guy sees a disabled person wobbling across the room and decides that his top priority is to interrupt his meal so he can chide me for a minor breach of decorum.... I truly, from the bottom of my heart, pity him and the small bitter life he must lead. Besides, I started wearing hats everywhere because I lost my hair in elementary school and I was really sensitive about it. Even after I got used to being bald, with the fibromyalgia hypersensitivity, I very much needed the hat to protect my eyes from overwhelming light levels. It's also a disability aid in a way. But he never stopped to consider that I might have medical needs.)
But what I really appreciate is you calling out medical gaslighting. "It's just anxiety. It's all in your head. Push through it. Cope with it. Cope with whatever in your life is scaring you." No, no. It's that my immune system totally screwed up my nervous system and the tests you've run so far aren't able to show that. I get that doctors have to deal with a lot of patients who really are worried over nothing. And some things really do have simple minor fixes. But too often, doctors just dismiss patient concerns and real symptoms that really are a sign of something deeper going on that really does need to be addressed. They also suffer from tunnel vision. They know their speciality. They completely forget anything outside of it. They don't see the body as a whole. They forget how things interact. And... if the problem doesn't fall within what they're able to detect for their speciality, then they pass the buck. It's some other doctor's problem. Good luck to you.
I know how frustrating it is for doctors who truly want to help their patients, but who have to work within the limits of human capability and current technology. There's so much we don't know and so much we can't fix, for all the amazing improvements we've had over the last century. I have had many doctors tell me over the years that there's nothing more they can do, that they don't know how to help me, that they wished they could do more. I think knowing that my dad is a doctor helped them open up about that. I saw how much it hurt them to have dedicated their lives to learning how to heal people and then just being confronted with a problem they don't have the tools to address.
But too often they simply don't listen. They tell you it's all in your head. They see that the test results are normal, so instead of looking for another test, they gaslight you and dismiss you. When I was 16, my parents took me to CHOP (world-class pediatric specialty hospital in Philly) and the doctor listened to me and my parents and sent me home with two new medications. He took my parents aside to tell them about it. A few days into it, when it was clear it wasn't helping, Mom, wracked with guilt, tearfully confessed that they were placebos. He made her lie to me. Because he thought I was faking it and just needed something to believe in. Even though we'd only come to him after I'd been to a dozen other doctors and tried I don't even remember how many real medications.
The tests show normal, so it must be in your head. How many people have been actively harmed by that? Not just left untreated, but told to ignore their symptoms and their bodies' limits? And shamed for being ill? Infuriating.
I did have one doctor apologize to me once.
The first doctor to correctly diagnose my fibromyalgia. He was the one who developed the test that was used in the 90s (before it was replaced with better ones). He told me the good news. He knew what was happening and if I followed his protocols he guaranteed I'd be feeling better in a matter of months. I did everything he said. I didn't get better. He told me to my face I was lying. He said if I wasn't getting better it could only mean I wasn't doing what he'd ordered, and he couldn't treat a patient who wasn't honest with him. He screamed at me to get out and never come back.
A few years later, I did see him again. After he'd talked to my parents. (He knew them socially, since Dad was a professional colleague.) He sincerely apologized to me. He said he was wrong to do that, and he shouldn't have taken his frustration out on me, and he knew better. And he tried again to help me with what he'd learned in the intervening years.
But, for all the dozens and dozens of doctors I've seen... Neurologists, cardiologists, pediatricians, rheumatologists, sleep specialists, endocrinologists, and I don't even remember what else. Specialists. People in specialty hospitals. In half a dozen different states. Sometimes traveling hundreds of miles for an appointment. ... With all that, he was the only one who ever apologized for anything other than not being able to be more helpful.
He was not, however, the only one who yelled at me, who dismissed me, who accused me of lying or faking it. We traveled 300 miles to see a specialist in Boston, who listened to me lay out everything I'd been through and just ask for his help, and got mad at me, walked me down the hall to the cancer ward, showed me a patient of his who was dying of leukemia, and told me to leave and not come back until I had real problems. I saw an endocrinology researcher who said I don't have the genetic markers he'd identified, so clearly I couldn't be diabetic and if I'd just stop taking insulin my body would realize it needed to make its own. (Thankfully, I knew better than to listen to that claptrap.) I saw him again years later for something else, and he didn't apologize.
Medical science has limits. The tests can only show a limited amount of information, and you have to know what to look for. I get that doctors are pressured to find ways to help and sometimes they just can't. But they need to be honest with us. To step off the pedestal and work with us. Believe us. Listen to us. And say "I'll keep looking. We'll try something else. I'll talk it over with some people who may know more." I've had that happen a few times, and it's been encouraging. Refreshing. So much more helpful and supportive.
I really wish doctors were taught to work with patients instead of handing down judgements and decrees. I also wish they remembered that zebras do exist, even if they are rare and sometimes hard to spot.
Thank you for sharing so much of your story and spending spoons educating people here about what it’s like living with invisible illness.
The story about your mom giving you placebos was heartbreaking - I’m terribly sorry you went through that. I can only imagine how bad she must have felt afterwards too.
I’m also glad to hear someone did say “sorry” to you - though one has to wonder if they would have without the professional connection via your Dad? It’s sad that apologies are so rare in healthcare settings. I wish doctors would realize that most of us aren’t litigious and simply want to hear “I’m sorry” because we’ve suffered and been hurt and that little moment of human kindness can go a long way.
I don't know if it's litigation holding them back. Maybe to some degree. Here in the US, malpractice insurance premiums can cost more than doctors receive from patient insurance, even before you factor in salaries and overhead costs. It's caused most private doctors to sell their practices to large hospital systems, which are better able to spread costs and negotiate with insurers. (It's actually illegal for doctors here to unionize. If Doctor Bones goes to lunch with Doctor Jones, and says, "You know, Acme insurance only pays me $X for doing a macuffin exam," that's a violation of Federal law. This is what happens when insurance company lobbyists write the law.) So they do need to be careful about such things. (Not that it stops people from bringing baseless lawsuits...)
But I think it's more of a cultural thing? Doctors spend nearly a decade earning their MDs (starting with premed classes in college) and it's really intensive study. And then they have to keep up with research as it continues to develop. They understandably see themselves as experts. It can make them arrogant. They can also be taught that they have to project confidence and authority, or else patients won't trust them and follow their directives. It doesn't help that these days there are a ton of patients who will spend 5 minutes on WebMD (or worse) and call that "doing my own research" on par with rigorous medical science. Having to deal with that over and over can reinforce the idea that patients need to be lectured rather than heard.
Basically, apologizing undermines their authority. Which is really not a very productive way to look at things. Anyone can make a mistake, and if you do, it's your responsibility to own up to it. That actually makes you more credible than refusing to apologize. But it's just not the culture of the profession, and that needs to change.
Yeah it’s probably a combination of factors - I know here in Canada they say not to say sorry as it COULD be seen and used as an admission of liability. So I suspect that is a factor - but ego and hubris are likely playing a huge role.
When they missed my post operative bleed and infection - an intern was the only one who said sorry. Not my surgeon who discharged me despite clear signs I was decompensating. Not any of the ER doctors who saw and dismissed me three times as I got worse.
I almost died and it was just that one young doctor who was kind enough to say sorry. Probably because she was young and hadn’t yet learned that she didn’t' ‘need’ to apologize to patients.
Of course, come to think: The doctor who gave me the placebo, the one who told me not to come back until I was literally dying, the one who got my chart notes totally wrong despite my careful and thorough explanation of the case, the one who refused to believe a diagnosis that had been confirmed multiple times by multiple specialists, the one who screamed in my face asking who had told me to go on a 25 hour schedule and refused to comprehend that it hadn't been a clinical recommendation but a circadian disorder I'd worked for over a decade to stop...
Part of the reason none of them ever apologized is simply that I saw no point in ever talking to them again.
Your tilt table test was a true nightmare! I’m so sorry you had such a severe reaction. My POTS was diagnosed via the lean test in my cardiologist’s office. She put me on a beta blocker even though my BP is routinely 90/60. I was on the lowest dose and told to cut those in half. I was on that for a year and my POTS gradually got better, so she took me off of it. I would say at my worst, it shaved maybe 10bpm off of my tachycardic HR. Nothing major. Luckily it didn’t make me dizzy from the low BP either.
As hard as it is to give this advice to someone who experiences PEM, one of the ways I was able to improve my POTS was to build up my walking. It’s a real catch-22 though if your fatigue is severe or you get PEM. It was super gradual, but it really helped over time.
My BP is 70/40 (on a good day - blah) so beta blockers were an immediate no go. I’ve been dipping into the 50s/30s lately and still
Remaining conscious - it’s quite hilarious to watch medical staff run around certain their equipment is broken before realizing nope - she’s really that low.
I was really fortunate and put in a cardiac rehab program that focused on strengthening the legs in a safe and supervised environment. I can’t walk a lot these days because of the PEM and the low BP - but I still do as much recumbent leg exercises as my body will allow.
Will touch on that more in part three! I definitely think having strong legs is a big help!
Oops, I also meant to say that this was an excellent post. I’m so impressed by your ability to collate all of this great info in your condition. People often say that to me as well, but I think you are more symptomatic than I am and so my hats off to you, because I’ve been there and it’s not easy.
Aww thank you! I appreciate it and I feel the same about your writing!
I think for me it helps that I’ve been dealing with it for so long - so I’ve had a lot of time to process and think through ways to communicate what I’m experiencing.
It takes me a LONG time to put together an article though - and I’ve got awesome friends who proof read for me (I would be lost without them!)
I don’t know if it’s pots specifically but I’ve had a massive increase in symptoms similar in recent months & suspect it’s something in the dysautonomia family. Struggling to get help though, as usual doctors seem to know nothing but this time I’m too worn out to research & push so I’m stagnating :(
I'm sorry to hear Vanessa. Have you recently had any infection? Covid or something else? I find my symptoms always get worse following infections.
Have you tried doing a stand test to see what your orthostatic vitals are like? That can point towards either POTS or Orthostatic Hypotension (both in the Dysautonomia family)
A doctor did do the sit stand but I can’t remember how it came out - but that was months before I got so much worse. Trying to get back in with that doctor but she’s trying to take time off so they may not book me in :(
I will say, as someone who was first prescribed an SSRI for my tachycardia (“Must be a panic attack?”), then a beta blocker (“Don’t know what’s happening, but this will mask it.”), you’ll probably develop anxiety and/or depression anyway. Assume it’s a comorbidity.
But be careful about the shotgun therapy with an SSRI like Paxil that is hard to come off, and be suspicious of a beta blocker for the same reason. If you *do* have dysautonomia, a beta blocker may in fact be a good therapy for you, but it can have gnarly side effects if just given out on a guess, and it’s a beast to quit!
This is fantastic advice - and I’m making a note to include it in my third article about treatments (thank you for reminding me!). I was put on Paxil in my twenties in part due to tachycardia - meanwhile the tachycardia was because I was so severely hypotensive from my anemia. It was awful getting off that drug - and I wish they would do more due diligence before prescribing. They act like because it’s not “addictive” that means it’s without risk - which is far from the truth.
As for a beta blocker - I can’t take them because my blood pressure is so low. It’s frustrating because I know they can be quite effective for POTS.
When I write the third article I will be sure to include them but also talk about what I do instead of a beta blocker (like ice packs to the back of the neck lol)
Wow! That's quite a medical journey to diagnosis. I've had many of the same tests, and this is the first time I learned about Cavilon. I have to wear a halter once a year, and I always break out in a terrible rash from the pads. This last time was a 14-day monitor, and I ran out of places to put the pads without going back to irritated skin. I'm definitely going to try that stuff next year!
Oh I’m so glad it might help you! They make me do 21 day monitors now (sob) and I swear the reaction when using Cavilon is less than when I did a 24 hour one without. The stuff really works!
Actually I should have asked - is there a benefit to the loop recorder over a holter in terms of how much data it gets? Do you know? We’re still agonizing over a pacemaker - mostly due to my risk factors from the vEDS. But my heart will go into the thirties which arguably feels worse than the tachycardia.
I used to have a pacemaker with an ICD and it was the size of a bar of soap. I'm a small person with giant boobages so they were limited on where to put it. It was very uncomfortable. The loop recorder looks to be smaller than a AA battery, so I would guess it would be more comfortable. My pacemaker was able to record episodes, and they would interrogate it with a device in the doctor's office. Nowadays, you just use a transmitter and send the information from your home.
Thank you for sharing your experience - ‘boobages’ gave me quite the chuckle. I’m the opposite - incredibly tiny. I don’t know if that would help or not lol. I presume they need some fat to hide it under?
I’ve just read a book on the recovery from pots - a fellow Substack writer, global speaker and patient advocate: Roi Shternin called “Recovery from my bed”. Highly recommend, I’m hoping to meet with him online soon.
Also - going back to our past convo on privilege. Where diagnosis is a privilege, which it is, what is this:
“It can take years before you receive a correct diagnosis - and during that time we are gaslit, dismissed, profiled and unfairly judged.”
I’m going to have to give this some thought! I appreciate you always coming in with challenging comments and questions.
I would lean towards it being abuse - and that abuse directly impacting a person’s privilege. There’s so many factors that go in to privilege - but we are all vulnerable tot his type of abuse and being incorrectly diagnosed puts you at a serious disadvantage within the healthcare system.
Thank you so much for sharing - really, really helpful!
Is there such as thing as MILD POTS? I have done some reading around POTS, and MCAS too, and I feel like I have symptoms that are nowhere near as bad as yours, but they are definitely there. I don't feel I can ask for a diagnosis because my symptoms aren't strong, and usually just get pushed off as anxiety or stress or just not worth looking into. But I'd like to know what to do about them all the same, even if they're not totally life limiting, they can sometimes be miserable.
Absolutely! It’s a spectrum. There have been times in my life my symptoms have been mild and quite manageable - whereas now I’m more severe and mostly bedbound.
Have you tried to do a 10 minute stand test on yourself? That might give you a good indicator of whether it’s worth bringing up to your doctor.
Getting a diagnosis can be hard but really worth it even if your case is mild. Dysautonomia can impact so much more that ‘just’ heart rate. When I had my hysterectomy (for example) … major complications were missed because my vitals weren’t what they expected. Now we know that Dysautonomia can cause blood pressure and temperature to be dysregulated - so doctors know not to rule out serious issues based on vitals alone.
You’re welcome! I didn’t mean for it to get so long! But as I was listing out the tests I thought about how many things I wish I had known beforehand that would have made my life easier - so it morphed into a bigger article than I was expecting!
What an ordeal to go through just to get a proper diagnosis and then, to come to the realization that this is a life long condition you will have to deal with. No gold at the end of the pots rainbow - thank you so much for sharing what sounds like a harrowing experience - Bob
Thanks Bob. Indeed - coming to terms with the lack of cure was hard. But there’s lots of research being done so perhaps one day it won’t be a lifelong condition!
Wow, what a journey you've had. Much respect to you for using your limited energy to give advice to others. I'm sure I'm not the only person who is very appreciative. Thanks again for posting.
Thank you! My hope is that by sharing my experience other patients will have an easier road to diagnosis - which will make spending my energy on it worth it. No one should have to spend years being gaslit and ignored - we need a lot more education and awareness about these conditions.
I'm 63 years old. I was diagnosed less than 10 years ago when I ended up being referred to a cardiologist because of a pulmonary embolism. In reviewing my extensive medical issues he came to the conclusion. His explanation,testing and tratment has focused primarily on my low blood pressure. I have compression stockings and take salt tablets. How long did my POTS go undiagnosed? When I was in grade school (1960's) we would have annual "check ups" with the school nurse. I have never forgotten the embarrassment when she was trying to take my pulse/blood pressure and screamed at the rest of the kids to BE QUIET!! because she couldn't "find" it (and forever after I was labeled as "zombie", "vampire" "dead girl" by my classmates.) MY first memory of feinting was when I was 12, though my grandmother says it happened even earlier. In school, I was often accused of "faking" my various health complaints to get attention or to get out of class. In my 20's I began to believe I was crazy after being accused of being a hypochondriac so often. Every decade, it seems I got another diagnosis of something that previously didn't have a label. But Thanks to your series I'm realizing that many of them (GAD, Fibromyalgia?, GERD, Vertigo, Light Sensitivity, chronic dehydration) all fall under Dysautonomia. Something that no physician has ever mentioned to me to this day! And I'm wondering which Dr I should discuss this with to get my POTS diagnosis expanded so that ALL my specialists will "GET IT" 🙄 I'm glad that the science and medical community is finally STARTING to piece it all together. I pray that further research into identification and treatment is being done (sooner rather than later) and mass education of the medical community is rolled out so NO ONE ELSE has to go through the psychological trauma of missed diagnosis for as long as most of us have. I can't explain how emotional I am to finally have validation. I can't begin to thank you enough!!!
Thank you for sharing your story (also I was called a vampire girl too!). It's awful how long it can take to be diagnosed - but I think the more we raise awareness the more easily it will be recognized by medical professionals which will hopefully help the patients who come after us.
This one rings some bells.
Thanks for laying it all out for us. It's good to learn, and you make excellent and important points.
I don't have POTS or dysautonomia, but as an early fibromyalgia patient, I've had to deal with some of the same obstacles and issues in getting diagnosis and treatment. Thankfully, I've never had to do a tilt table. That sounds excruciating. I'm sorry for what you had to experience to get a diagnosis and be taken seriously. Personally, my heart would be fine, but with the fibro nerve pain I have to shift around a lot just so the pain levels don't build up too much in any one spot.
I wish society was better about invisible illness. I remember my sister had knee surgery when she was in high school. From the outside, she looked fine. But she was recovering from then-experimental surgery and couldn't put weight on her leg for any substantial period. And yet people would see what looked like a young healthy girl sitting on the bus and pressure her to give up her seat, with no idea of what was going on beneath the surface. That kind of thing happens way too much. "Why do you need a cab to go a couple of blocks?" "Why don't you give up your seat on the bus?" "Do you really need the elevator?" "Aren't you just being lazy?" It's all just ableism, and we need more education and awareness around invisible illnesses.
We also need people to be less afraid of taking the measures they need to protect themselves. I had so much pain and fatigue I could hardly walk. I memorized routes across the kitchen. Where are the handholds? Where can I push off to give myself a boost to get across the gap where there is nothing to hold on to? Where do I need to aim so I launch myself at a handhold without risking crashing into something? I did that for a couple of years before realizing that I really should be walking with a cane. I was in my 20s. I looked healthy from the outside. Wouldn't people judge me for using a cane? Wouldn't they think I was faking it, or looking for attention? You young fool. You need this. And no one cares that you're using it. And the fact that you are using it shows them that there's something going on, so most of them will actually be more understanding, not less. And the ones who do judge you for using an assistive device that you very much need? They're the ones who are lacking.
(Side note: My aunt invited me to have dinner at the clubhouse restaurant where she lived. I barely managed to walk across the room. Exhausted, tottering, leaning on my cane. My head was down the whole time because I could barely see straight. Woozy and short of breath, I collapsed into the chair and paused to rest. An elderly man got up from his table, walked up to me, and told me it was inappropriate for me to be wearing a hat indoors and I needed to take it off. I decided to bite my tongue for my aunt's sake. I didn't want to cause her problems with her neighbors. I was also still woozy and short of breath. I would have taken the hat off once I'd collected myself. But all I can think is... If that guy sees a disabled person wobbling across the room and decides that his top priority is to interrupt his meal so he can chide me for a minor breach of decorum.... I truly, from the bottom of my heart, pity him and the small bitter life he must lead. Besides, I started wearing hats everywhere because I lost my hair in elementary school and I was really sensitive about it. Even after I got used to being bald, with the fibromyalgia hypersensitivity, I very much needed the hat to protect my eyes from overwhelming light levels. It's also a disability aid in a way. But he never stopped to consider that I might have medical needs.)
But what I really appreciate is you calling out medical gaslighting. "It's just anxiety. It's all in your head. Push through it. Cope with it. Cope with whatever in your life is scaring you." No, no. It's that my immune system totally screwed up my nervous system and the tests you've run so far aren't able to show that. I get that doctors have to deal with a lot of patients who really are worried over nothing. And some things really do have simple minor fixes. But too often, doctors just dismiss patient concerns and real symptoms that really are a sign of something deeper going on that really does need to be addressed. They also suffer from tunnel vision. They know their speciality. They completely forget anything outside of it. They don't see the body as a whole. They forget how things interact. And... if the problem doesn't fall within what they're able to detect for their speciality, then they pass the buck. It's some other doctor's problem. Good luck to you.
I know how frustrating it is for doctors who truly want to help their patients, but who have to work within the limits of human capability and current technology. There's so much we don't know and so much we can't fix, for all the amazing improvements we've had over the last century. I have had many doctors tell me over the years that there's nothing more they can do, that they don't know how to help me, that they wished they could do more. I think knowing that my dad is a doctor helped them open up about that. I saw how much it hurt them to have dedicated their lives to learning how to heal people and then just being confronted with a problem they don't have the tools to address.
But too often they simply don't listen. They tell you it's all in your head. They see that the test results are normal, so instead of looking for another test, they gaslight you and dismiss you. When I was 16, my parents took me to CHOP (world-class pediatric specialty hospital in Philly) and the doctor listened to me and my parents and sent me home with two new medications. He took my parents aside to tell them about it. A few days into it, when it was clear it wasn't helping, Mom, wracked with guilt, tearfully confessed that they were placebos. He made her lie to me. Because he thought I was faking it and just needed something to believe in. Even though we'd only come to him after I'd been to a dozen other doctors and tried I don't even remember how many real medications.
The tests show normal, so it must be in your head. How many people have been actively harmed by that? Not just left untreated, but told to ignore their symptoms and their bodies' limits? And shamed for being ill? Infuriating.
I did have one doctor apologize to me once.
The first doctor to correctly diagnose my fibromyalgia. He was the one who developed the test that was used in the 90s (before it was replaced with better ones). He told me the good news. He knew what was happening and if I followed his protocols he guaranteed I'd be feeling better in a matter of months. I did everything he said. I didn't get better. He told me to my face I was lying. He said if I wasn't getting better it could only mean I wasn't doing what he'd ordered, and he couldn't treat a patient who wasn't honest with him. He screamed at me to get out and never come back.
A few years later, I did see him again. After he'd talked to my parents. (He knew them socially, since Dad was a professional colleague.) He sincerely apologized to me. He said he was wrong to do that, and he shouldn't have taken his frustration out on me, and he knew better. And he tried again to help me with what he'd learned in the intervening years.
But, for all the dozens and dozens of doctors I've seen... Neurologists, cardiologists, pediatricians, rheumatologists, sleep specialists, endocrinologists, and I don't even remember what else. Specialists. People in specialty hospitals. In half a dozen different states. Sometimes traveling hundreds of miles for an appointment. ... With all that, he was the only one who ever apologized for anything other than not being able to be more helpful.
He was not, however, the only one who yelled at me, who dismissed me, who accused me of lying or faking it. We traveled 300 miles to see a specialist in Boston, who listened to me lay out everything I'd been through and just ask for his help, and got mad at me, walked me down the hall to the cancer ward, showed me a patient of his who was dying of leukemia, and told me to leave and not come back until I had real problems. I saw an endocrinology researcher who said I don't have the genetic markers he'd identified, so clearly I couldn't be diabetic and if I'd just stop taking insulin my body would realize it needed to make its own. (Thankfully, I knew better than to listen to that claptrap.) I saw him again years later for something else, and he didn't apologize.
Medical science has limits. The tests can only show a limited amount of information, and you have to know what to look for. I get that doctors are pressured to find ways to help and sometimes they just can't. But they need to be honest with us. To step off the pedestal and work with us. Believe us. Listen to us. And say "I'll keep looking. We'll try something else. I'll talk it over with some people who may know more." I've had that happen a few times, and it's been encouraging. Refreshing. So much more helpful and supportive.
I really wish doctors were taught to work with patients instead of handing down judgements and decrees. I also wish they remembered that zebras do exist, even if they are rare and sometimes hard to spot.
Thank you for sharing so much of your story and spending spoons educating people here about what it’s like living with invisible illness.
The story about your mom giving you placebos was heartbreaking - I’m terribly sorry you went through that. I can only imagine how bad she must have felt afterwards too.
I’m also glad to hear someone did say “sorry” to you - though one has to wonder if they would have without the professional connection via your Dad? It’s sad that apologies are so rare in healthcare settings. I wish doctors would realize that most of us aren’t litigious and simply want to hear “I’m sorry” because we’ve suffered and been hurt and that little moment of human kindness can go a long way.
I don't know if it's litigation holding them back. Maybe to some degree. Here in the US, malpractice insurance premiums can cost more than doctors receive from patient insurance, even before you factor in salaries and overhead costs. It's caused most private doctors to sell their practices to large hospital systems, which are better able to spread costs and negotiate with insurers. (It's actually illegal for doctors here to unionize. If Doctor Bones goes to lunch with Doctor Jones, and says, "You know, Acme insurance only pays me $X for doing a macuffin exam," that's a violation of Federal law. This is what happens when insurance company lobbyists write the law.) So they do need to be careful about such things. (Not that it stops people from bringing baseless lawsuits...)
But I think it's more of a cultural thing? Doctors spend nearly a decade earning their MDs (starting with premed classes in college) and it's really intensive study. And then they have to keep up with research as it continues to develop. They understandably see themselves as experts. It can make them arrogant. They can also be taught that they have to project confidence and authority, or else patients won't trust them and follow their directives. It doesn't help that these days there are a ton of patients who will spend 5 minutes on WebMD (or worse) and call that "doing my own research" on par with rigorous medical science. Having to deal with that over and over can reinforce the idea that patients need to be lectured rather than heard.
Basically, apologizing undermines their authority. Which is really not a very productive way to look at things. Anyone can make a mistake, and if you do, it's your responsibility to own up to it. That actually makes you more credible than refusing to apologize. But it's just not the culture of the profession, and that needs to change.
Yeah it’s probably a combination of factors - I know here in Canada they say not to say sorry as it COULD be seen and used as an admission of liability. So I suspect that is a factor - but ego and hubris are likely playing a huge role.
When they missed my post operative bleed and infection - an intern was the only one who said sorry. Not my surgeon who discharged me despite clear signs I was decompensating. Not any of the ER doctors who saw and dismissed me three times as I got worse.
I almost died and it was just that one young doctor who was kind enough to say sorry. Probably because she was young and hadn’t yet learned that she didn’t' ‘need’ to apologize to patients.
Of course, come to think: The doctor who gave me the placebo, the one who told me not to come back until I was literally dying, the one who got my chart notes totally wrong despite my careful and thorough explanation of the case, the one who refused to believe a diagnosis that had been confirmed multiple times by multiple specialists, the one who screamed in my face asking who had told me to go on a 25 hour schedule and refused to comprehend that it hadn't been a clinical recommendation but a circadian disorder I'd worked for over a decade to stop...
Part of the reason none of them ever apologized is simply that I saw no point in ever talking to them again.
Perhaps if I had, they'd have learned something?
Your tilt table test was a true nightmare! I’m so sorry you had such a severe reaction. My POTS was diagnosed via the lean test in my cardiologist’s office. She put me on a beta blocker even though my BP is routinely 90/60. I was on the lowest dose and told to cut those in half. I was on that for a year and my POTS gradually got better, so she took me off of it. I would say at my worst, it shaved maybe 10bpm off of my tachycardic HR. Nothing major. Luckily it didn’t make me dizzy from the low BP either.
As hard as it is to give this advice to someone who experiences PEM, one of the ways I was able to improve my POTS was to build up my walking. It’s a real catch-22 though if your fatigue is severe or you get PEM. It was super gradual, but it really helped over time.
My BP is 70/40 (on a good day - blah) so beta blockers were an immediate no go. I’ve been dipping into the 50s/30s lately and still
Remaining conscious - it’s quite hilarious to watch medical staff run around certain their equipment is broken before realizing nope - she’s really that low.
I was really fortunate and put in a cardiac rehab program that focused on strengthening the legs in a safe and supervised environment. I can’t walk a lot these days because of the PEM and the low BP - but I still do as much recumbent leg exercises as my body will allow.
Will touch on that more in part three! I definitely think having strong legs is a big help!
Oops, I also meant to say that this was an excellent post. I’m so impressed by your ability to collate all of this great info in your condition. People often say that to me as well, but I think you are more symptomatic than I am and so my hats off to you, because I’ve been there and it’s not easy.
Aww thank you! I appreciate it and I feel the same about your writing!
I think for me it helps that I’ve been dealing with it for so long - so I’ve had a lot of time to process and think through ways to communicate what I’m experiencing.
It takes me a LONG time to put together an article though - and I’ve got awesome friends who proof read for me (I would be lost without them!)
I don’t know if it’s pots specifically but I’ve had a massive increase in symptoms similar in recent months & suspect it’s something in the dysautonomia family. Struggling to get help though, as usual doctors seem to know nothing but this time I’m too worn out to research & push so I’m stagnating :(
I'm sorry to hear Vanessa. Have you recently had any infection? Covid or something else? I find my symptoms always get worse following infections.
Have you tried doing a stand test to see what your orthostatic vitals are like? That can point towards either POTS or Orthostatic Hypotension (both in the Dysautonomia family)
A doctor did do the sit stand but I can’t remember how it came out - but that was months before I got so much worse. Trying to get back in with that doctor but she’s trying to take time off so they may not book me in :(
Good luck! I hope you can get in without having to wait too long.
I will say, as someone who was first prescribed an SSRI for my tachycardia (“Must be a panic attack?”), then a beta blocker (“Don’t know what’s happening, but this will mask it.”), you’ll probably develop anxiety and/or depression anyway. Assume it’s a comorbidity.
But be careful about the shotgun therapy with an SSRI like Paxil that is hard to come off, and be suspicious of a beta blocker for the same reason. If you *do* have dysautonomia, a beta blocker may in fact be a good therapy for you, but it can have gnarly side effects if just given out on a guess, and it’s a beast to quit!
This is fantastic advice - and I’m making a note to include it in my third article about treatments (thank you for reminding me!). I was put on Paxil in my twenties in part due to tachycardia - meanwhile the tachycardia was because I was so severely hypotensive from my anemia. It was awful getting off that drug - and I wish they would do more due diligence before prescribing. They act like because it’s not “addictive” that means it’s without risk - which is far from the truth.
As for a beta blocker - I can’t take them because my blood pressure is so low. It’s frustrating because I know they can be quite effective for POTS.
When I write the third article I will be sure to include them but also talk about what I do instead of a beta blocker (like ice packs to the back of the neck lol)
Wow! That's quite a medical journey to diagnosis. I've had many of the same tests, and this is the first time I learned about Cavilon. I have to wear a halter once a year, and I always break out in a terrible rash from the pads. This last time was a 14-day monitor, and I ran out of places to put the pads without going back to irritated skin. I'm definitely going to try that stuff next year!
Oh I’m so glad it might help you! They make me do 21 day monitors now (sob) and I swear the reaction when using Cavilon is less than when I did a 24 hour one without. The stuff really works!
Have they ever suggested a loop recorder? It's implanted under the skin and continuously monitors your heart. It's smaller than a pacemaker.
Actually I should have asked - is there a benefit to the loop recorder over a holter in terms of how much data it gets? Do you know? We’re still agonizing over a pacemaker - mostly due to my risk factors from the vEDS. But my heart will go into the thirties which arguably feels worse than the tachycardia.
This link to the mayo clinic will tell you more than I can based on my knowledge. https://www.mayoclinic.org/tests-procedures/implantable-loop-recorder/pyc-20384986
I used to have a pacemaker with an ICD and it was the size of a bar of soap. I'm a small person with giant boobages so they were limited on where to put it. It was very uncomfortable. The loop recorder looks to be smaller than a AA battery, so I would guess it would be more comfortable. My pacemaker was able to record episodes, and they would interrogate it with a device in the doctor's office. Nowadays, you just use a transmitter and send the information from your home.
Thank you for sharing your experience - ‘boobages’ gave me quite the chuckle. I’m the opposite - incredibly tiny. I don’t know if that would help or not lol. I presume they need some fat to hide it under?
They don't need much. Just skin. I was about 100 lbs when they implanted my pacemaker.
We haven’t done that yet. They seem to get good data from the 28 day monitor and with my EDS they are hesitant to do anything that cuts the skin.
🌹🌻🌸💐💚💛💜❤️🌼😍🥰
I’ve just read a book on the recovery from pots - a fellow Substack writer, global speaker and patient advocate: Roi Shternin called “Recovery from my bed”. Highly recommend, I’m hoping to meet with him online soon.
Also - going back to our past convo on privilege. Where diagnosis is a privilege, which it is, what is this:
“It can take years before you receive a correct diagnosis - and during that time we are gaslit, dismissed, profiled and unfairly judged.”
Abuse?
If so, What part does abuse play in privilege?
I’m going to have to give this some thought! I appreciate you always coming in with challenging comments and questions.
I would lean towards it being abuse - and that abuse directly impacting a person’s privilege. There’s so many factors that go in to privilege - but we are all vulnerable tot his type of abuse and being incorrectly diagnosed puts you at a serious disadvantage within the healthcare system.
Thank you so much for sharing - really, really helpful!
Is there such as thing as MILD POTS? I have done some reading around POTS, and MCAS too, and I feel like I have symptoms that are nowhere near as bad as yours, but they are definitely there. I don't feel I can ask for a diagnosis because my symptoms aren't strong, and usually just get pushed off as anxiety or stress or just not worth looking into. But I'd like to know what to do about them all the same, even if they're not totally life limiting, they can sometimes be miserable.
Absolutely! It’s a spectrum. There have been times in my life my symptoms have been mild and quite manageable - whereas now I’m more severe and mostly bedbound.
Have you tried to do a 10 minute stand test on yourself? That might give you a good indicator of whether it’s worth bringing up to your doctor.
Getting a diagnosis can be hard but really worth it even if your case is mild. Dysautonomia can impact so much more that ‘just’ heart rate. When I had my hysterectomy (for example) … major complications were missed because my vitals weren’t what they expected. Now we know that Dysautonomia can cause blood pressure and temperature to be dysregulated - so doctors know not to rule out serious issues based on vitals alone.
Thanks for sharing so many helpful tips.
You’re welcome! I didn’t mean for it to get so long! But as I was listing out the tests I thought about how many things I wish I had known beforehand that would have made my life easier - so it morphed into a bigger article than I was expecting!
What an ordeal to go through just to get a proper diagnosis and then, to come to the realization that this is a life long condition you will have to deal with. No gold at the end of the pots rainbow - thank you so much for sharing what sounds like a harrowing experience - Bob
Thanks Bob. Indeed - coming to terms with the lack of cure was hard. But there’s lots of research being done so perhaps one day it won’t be a lifelong condition!