I’m writing this post with slight hesitation, because I’ve tried to write about this in some of the POTS and Dysautonomia support groups I’m in on Facebook, only to have them taken down by moderators. I was told that I couldn’t mention doctor’s names or clinics along with a negative review, because if someone who worked for those places were in the support groups and they saw the posts, I could be sued. Imagine a doctor suing you for writing the truth about your horrible experience. A doctor who not only gaslighted you, is the very reason for other doctors not believing your diagnosis, but also the reason your 6 1/2 year disability fight is still ongoing (with several denials). But the latter is for another blog post, which I intend to make next after telling this story.
This appointment left me with major PTSD, and I still have anxiety about going to new doctors all these years later. I never realized you could even get PTSD from a doctor, but it’s absolutely possible, and it’s horrible.
I tell this story, on my own terms, on my own site, all these years later, because I need to. Because it eats away at me. Because I don’t want others to go through the same things I did, and I will try to help them avoid it at all costs. This is being written not only for my own cathartic release, but for every single person who might try to go to this particular place. In NYC. At a university hospital. I name the hospital in my first blog post, A Lifetime of Chronic Illness, and you can put the clues together using a combination of that post and this one. I’m sorry I have to Sherlock Holmes you guys, but unfortunately because of patients being sued for defamation from doctors (Google it, it happens), I have to be very discrete in this post. I’m not naming the place or the doctor, because I can’t afford being sued. If you have any questions about this post, feel free to message me directly and I will gladly talk to you.
I also want to add, before I get into the story, that this blog won’t be purely about the bad stories. There will be positive stories, tips and tricks I’ve learned over the years, and even happy pictures, videos, and adventures along the way. The purpose of the blog is to show what life is like for someone living with multiple chronic illnesses, and I will do just that. But before I get to those other posts, I feel it’s important to tell as much of my story as I can, at least the biggest pieces. I’ll sprinkle more in later on, combining the positive and the negative, after I tell these stories. Yes, a lot of it is kind of a downer, but it’s real life, and I’m not here to sugarcoat anything. I’m here to be 100% authentic, and show the good, the bad, and the downright ugly of chronic illness. Every bit along the way is my story, and for whatever it’s worth, it’s made me who I am today.
After getting diagnosed with POTS in November of 2014 in the Electrophysiology Department at a large hospital in NYC (sent there by my then cardiologist because he didn’t perform Tilt Table Tests himself), I was at a loss. My cardiologist at the time saw my diagnosis and admitted he knew little to nothing about POTS. He passed me off to one of his younger doctors, thinking he would know more about it. He was wrong, but I didn’t realize that at the time. I didn’t have a neurologist yet (and didn’t know I needed one), and I knew next to nothing about POTS. I started Googling, as anyone would, to try to understand the condition better. The more I learned, the more I realized how difficult the treatment part of the diagnosis would be.
While Googling, I came across what I thought at the time was a beacon. It wasn’t, and it was one of the worst mistakes I’ve made to this day. A center for dysautonomia within one of the top hospitals in the world. The same hospital that diagnosed me. It seemed promising, and I brought it up to my cardiologist. He admitted he’d never heard of it, but told me to go. We called to make an appointment, which I learned I had to wait several months for. Knowing how few doctors treated POTS from my Googling, I didn’t mind, as long as I could get on the right treatment plan. I was told that they would need to repeat my Tilt Table Test, even though I’d already had one less than 6 months earlier at the same hospital.
This clinic is associated with and inside of the hospital, but isn’t the hospital itself, so they required their own test. As much as the Tilt Table Test is a nightmare for someone with dysautonomia, I was desperate for this appointment, so I agreed to letting them do their own testing. Then I was told that it would be out of pocket, since they only took Medicare. At this point, I had just left my job recently, and couldn’t afford it. My parents, who also couldn’t afford it, told me they’d pay it for me. It was $1300 out-of-pocket for the testing, and I was told the consultation. I made the appointment, and went into the city in the spring of 2015 for the testing. The testing was extensive, including the QSART (also known as the sweat test), bloodwork, and the Tilt Table Test.
After the testing, I was told the results would be back shortly, and they would call me to make a follow-up appointment. When they called me, they told me my follow-up would have to be 3 months later. At this point it was about 9 months since I first called, and in August 2015 I went in to consult with the doctor and get the results of the testing.
As soon as I walked in, they asked for another $800 for the consultation. I was confused, because they told me over the phone months before that the consultation was included in the $1300 I already paid. They said it wasn’t, and I immediately felt annoyed. I said to forget it, that I didn’t have the money to pay an extra $800, and they could just send my results to my cardiologist. I walked out and was standing by the elevators when my cell phone rang- it was the receptionist telling me that the doctor agreed to see me anyway. I walked into the doctor’s office and sat down. My parents were with me, as I thought it would be an important appointment and I wanted an extra set of ears. I am so thankful I took them with me, because now I have witnesses to what I experienced.
The doctor asked me where I’d heard about their office, and I told him it was found while Googling. He then asked why I went to them, since they only treat Familial Dysautonomia. I insisted that they never told me that when I called. At the time, I didn’t know what Familial Dysautonomia (FD) was. I asked if I could possibly have Familial Dysautonomia, and he said no because it mostly occurs in Ashkenazi Jewish decent. I stated that I was actually part Ashkenazi Jewish, and he told me I didn’t have it because I didn’t have the “look”, or the developmental delays that those with FD have. I later learned that there are only about 350 people living with FD in the world, it’s extremely rare.
I repeated that they didn’t tell me any of this when I called. He then shrugged and told me what no one ever wants to hear. “It’s all in your head.” My stomach dropped, because even though I’d had POTS symptoms for only a few years at this point, I’d already heard this from a doctor before. “What??” I asked. “I’ve already been diagnosed with POTS…. from this hospital.” I added. He shook his head. “You created the POTS in your head. Let me ask you, where did you hear about POTS? Why were you Googling about it?” I told him I didn’t start Googling about it until this very hospital diagnosed me with it. I’d never even heard of it before that!
Then I asked him a question. “If you didn’t know my history of having OCD, would you still come to this conclusion?” He said he likely would, but I didn’t believe it. I then asked where my nightly fevers were coming from, which I’d been getting on and off for months. He doubled down. “You’re creating the fevers. The mind is very powerful.” I shook my head in disbelief at what I was hearing. I retorted “Wow, I must be really powerful. I must be a witch”. My attempt to make a joke in a horrible situation, as usual.
My mom chimed in “So let me get this straight…. she doesn’t have POTS?” This is where it started to get even crazier. “Oh no, she has POTS. But she created it in her head. You see, I’m the only one in the medical community with this belief, but I don’t believe that POTS is a form of dysautonomia”. WHAT?! What did this doctor just say?! That’s like a doctor telling you that you have Leukemia, but it’s not a form of cancer. I sat there frozen while he continued talking. He mentioned that pregnant women have POTS, and so do astronauts who come back from space. I’d actually recently read an article about how astronauts who return from space get POTS symptoms for a few months, while their body readjusts to gravity. I said “No, they don’t have POTS, they have POTS symptoms”, but he just kept saying that POTS was not a form of dysautonomia. How could he not know the difference between a few symptoms and the actual Syndrome?
He then said I should see a psychotherapist. I left in shock, feeling completely defeated. I just spent $1300 (and they wanted it to be $2100) for him to tell me it was all in my head. I’d waited 9 months to be told I was making it all up, after already being diagnosed with POTS previously. I went to him, not for a diagnosis, but for a treatment plan, and his “treatment” was to see a psychotherapist. He’s the one who needed a psychotherapist. I’d been to many psychologists, psychiatrists, and social workers over the years (I was diagnosed with OCD at the age of 8), I think I’d know if I was “making it up”. I also knew anxiety well, as it was something I’d dealt with my whole life. This wasn’t anxiety, I know how anxiety can manifest and present itself, and for me it was completely different than any of these symptoms. My psychiatrist at the time of this ordeal knew about all my symptoms and the new diagnosis, and she also knew I wasn’t making any of it up. She never once even hinted it could all be in my head. She was actually the one who diagnosed me with Chronic Fatigue Syndrome, as she knew my fatigue was far beyond what anyone with depression and anxiety experiences.
Next came the letter from him. He sent my cardiologist a report, stating, of course, that I didn’t have dysautonomia. No mention of the fact that he believed I had POTS and that he’s the only person in the entire medical community with the belief that POTS is not a form of dysautonomia. This left my doctor then believing that I didn’t have POTS, since this man I just saw was the expert. I told him the whole story, but I don’t think he ever believed it. Who would? If I didn’t have two witnesses with me, I would have even thought I imagined it. It was at this point that I started to find the next option for treatment, since clearly this man in the city wasn’t it, and neither was my cardiologist now that he received that bogus report.
That’s when I found my neurology office. I wanted an appointment with a certain doctor who I’d heard had a lot of POTS patients, but I couldn’t get in with him. I went to another doctor in that office instead for my first appointment. I gave him the report from the last Tilt Table Test (along with the results from the first Tilt Table I had), which had all of the results along with the tests themselves, so he could see firsthand. I briefly told him the story, and he shook his head, not too shocked, but disgusted. He looked at the results and said “by very definition, you have POTS.” He also confirmed that it is indeed a form of dysautonomia, which is evident from all the research I’d done at that point. After his suggestions for treatment didn’t work out for me, I called back to try to get an appointment with the doctor who specialized in POTS. Even though they typically don’t let you change doctors, they agreed to let me see him, and I’ve been seeing him since. He’s a brilliant man, whose mind works overtime.
When I told him the story, he too wasn’t shocked. He asked the doctor’s name, and when I told him, he laughed and said that man always was weird. Apparently my doctor taught this man years back, so he knew about him.
Since this all happened, I have seen a couple posts in one of the Facebook support groups I’m in for dysautonomia. Quite a few others have come forward with a similar story (but I’ve noticed the price they’ve paid has varied, which is very curious to me). They’ve said the same exact key things, that they were made to repeat their Tilt Table Test, that this doctor told them it was all in their head, and that he told them that POTS is not a form of dysautonomia. And yet, his name is still on the website, and he still claims to help those with dysautonomia, autonomic disorders, orthostatic hypotension, and more. It infuriates me knowing he is still taking money from those of us who are sick and don’t know better, and he is allowed to get away with it, all the while telling them they’re making it all up.
What’s stranger still is that when looking him up now, I see that he seems to have changed his position on POTS being a form of dysautonomia. I can’t say for sure, but he’s now included in research papers, articles, and even a YouTube video. I can’t bring myself to watch the video, I find it to be too upsetting and nauseating. The articles and research papers include POTS and dysautonomia interchangeably, so it seems like he’s changed his scientific view on the subject. Even if he has changed his opinion, that doesn’t erase the damage he’s done to me and countless others (really, who knows how many), and continues to do to me to this day since he’s one of the main reasons I’m being denied disability. Quite honestly, I find the change in his position to be even more upsetting than I expected, mostly because it makes me feel crazy. I’m so glad my parents were both there with me to witness (and hear) everything he said, and that countless others have had the exact same experience. Otherwise, I honestly don’t know if I’d believe my own memories. I think I’d begin to gaslight myself into thinking I must have heard him wrong, despite him repeating himself in the stance that he doesn’t believe dysautonomia is a form of POTS.
This doctor will come up again when I tell my disability story (a saga, really). It’s like the episode of Seinfeld called “The Package” (Season 8, Episode 5) where Elaine keeps going to different doctors and her file keeps following her around. This is my life now. Although I’m not the difficult patient Elaine was labeled as, I’m just the girl who is making up her own (previously diagnosed) illness and creating nightly fevers like the talented witch I am.
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