81 - Dr Liza DiLeo Thomas - Patient Experience Professional & Long Hauler

Episode 81 of the Long Covid Podcast is a chat with Dr Liza DiLeo Thomas who is a Patient Experience Professional and also has Long Covid. Liza has also worked as an emergency medicine  physician in New Orleans. 

We chat about how she has learned more about her role through experiencing an "invisible disability" such as Long Covid; seeing things through the eyes of a patient as well as a medical professional, as well as what empathy really means.

For more information about Long Covid Breathing courses & workshops, please check out LongCovidBreathing.com

(music credit - Brock Hewitt, Rule of Life)

Transcript

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Jackie Baxter  
Hello, and welcome to this episode of the long COVID Podcast. I am delighted to welcome my guest today, Dr. Liza DiLeo. Thomas, who is an emergency medicine physician in the US and also a certified patient experience professional, as well as being a Long Hauler. So welcome to the podcast.

Dr Liza DiLeo Thomas  
Thank you so much for having me.

Jackie Baxter  
I'm so glad to have you here. And I hope that I managed to get your name right. So to start with, would you mind just introducing yourself a little and what it is that you do?

Dr Liza DiLeo Thomas  
Sure. Well, thank you, Jackie. So yes, I'm an emergency physician in New Orleans, Louisiana. And I've been working as an emergency physician in New Orleans for a little over 20 years, at a large hospital down there. And I became certified as a patient experience professional about four or five years ago. But I became interested in patient experience, about 10 years ago, when the director of my emergency department asked if I could take over responding to the patient grievances, which is basically the patient complaints. And apparently, that was a job that nobody else really wanted to do. *laughs*

But he taught me that that was a job that I could learn a lot from, by hearing the patient's voice, whether that was in the form of a letter, or a phone call, or even on the patient surveys. And that in turn, could make me a better doctor. And so I learned that that's exactly what it did. And so I would read those or, you know, listen to the patients, and I would go back to my colleagues and share that information. And make everybody better doctors by by sharing that knowledge. So I went from just working in that role in the emergency department to taking on a larger role for the hospital of the medical director for our Patient Relations Department. And now I do that for our hospital system.

Jackie Baxter  
Wow, that sounds amazing. And I don't know, we hear like, oh, you learn from your mistakes kind of thing. And it is totally true. You know, the best way we learn is from the things that we don't do quite right, isn't it? But the thought of learning from basically other people complaining is actually quite a positive way of looking at that, isn't it?

Dr Liza DiLeo Thomas  
Yeah. And it can be hard. I mean, it can be hard as physicians to hear about what we may have done wrong, ways that we may have communicated, not necessarily inappropriately, but where we could have done things better. And to look at that in a way where we don't become defensive. But to look at that in a way where - where do we have some opportunities? 

And what I've learned in becoming a patient experience professional and becoming certified was that there's actually research that shows that when we're better at communicating with our patients, that our patients actually do better in terms of patient safety and patient outcomes. So it becomes really important how we communicate to our patients, not just because, yeah, our patients are happier, and they're going to give us better ratings on our surveys. But they're going to be healthier. You know, if we explain things better, if we're better at explaining, this is why you're going to take this medication when I discharge you, then they're more likely to take the medication as directed. So it makes sense that they're going to be healthier.

Jackie Baxter  
Totally. Yeah, and I guess it's not always things that you might have done wrong, it might just be that things could be done in a - I was gonna say better way, but maybe not even better, just a different way, a way that would work better for patients or for a certain set of patients, I guess, because again, it might not even be kind of everybody.

Dr Liza DiLeo Thomas  
Well, a lot of times it's things that we're not necessarily taught in medical school like medical jargon, you know, things that come very naturally to us, that the language that we use. I'll give you an example. I remember speaking with a patient in the emergency department, and I was discharging him and explaining that he was going to take this course of antibiotics and that it was important that he complete the full course and why that was important. And he stopped me and asked What do you mean by course, is there a class that I need to take on this antibiotic? 

And now that had been a term that I had used for years and years with my patients, you know, course of medication, and had never occurred to me that that was a term that we were very familiar as providers with using with our patients, but that that was a term that we knew, that we were comfortable using, but that was part of our jargon, a course of medications, but that to everyone else, course meant something else. And so that's just an example you know, something that makes a little bit more sense, is we have patients that, you know, you tell them, they fractured their arm and they'll say, hey, but is it broken? We have to explain, you know, a break and a fracture the same thing. That's one that a lot of providers will say, Well, yeah, I know, I need to explain that kind of thing. 

But when I want to, you know, I teach an empathy course, or a communication course, to all of our new providers when they come in during orientation. And I give that example about the word course. And when I tell that I see a lot of people say, like, wow, I never even thought about that. But over the years, you kind of gain this knowledge of different words that you need to, you know, put in your mind, oh, well, I'll need to explain that differently next time. And you just gain these different communication skills. So yeah, a lot of it is just the way that we speak, the way that we speak to each other, the way that we're taught to speak, the way that we're taught to communicate is a different way than we should be communicating with our patients.

Jackie Baxter  
Yeah, that's amazing, isn't it, and like you say, it's probably things that you wouldn't, I mean, I suppose the most important things probably would be the things that you wouldn't think about. Because if it was something that was really, really, really complicated, then you would feel the need to break it down for somebody who wasn't also a doctor.

Dr Liza DiLeo Thomas  
And then some of the things that are really complicated, they become so complicated that we can sometimes forget to break it down. I frequently see these patient complaints or grievances, where they'll write in a letter, and they'll say, you know, my mother was in the hospital for 10 days, and they did nothing for her. And I'll look in the medical record, and I'll say, Gosh, this woman was so sick, and look at all the things that they did for her, like, you know, they saved her life. 

But because nobody sat down with the family and said, This is all we're doing for her. This is, you know, we're having the cardiologist see her because her cardiac enzymes are elevated, or we're giving her this antibiotic because she has this infection in her bloodstream, because they're not sitting down with the family, and explaining exactly why they're doing everything that they're doing. The family's perception is that they're doing nothing. And so it's all about the family or the patient's perception of their care that that becomes their reality. And it's our duty to communicate that with them.

Jackie Baxter  
It's yeah, it's so interesting, isn't it? So the patient experience professional, you've talked about, you said you were taking some courses and all sorts of things. That's all underneath that kind of umbrella, is it?

Dr Liza DiLeo Thomas  
Yes. So there's the patient experience Institute, which is affiliated with the Barral Institute, which sponsors this certification, certified patient experience professional, it's just like any certification that you're required to do continuing education credits every three years, and I just recertified for it,

Jackie Baxter  
and what does your role kind of involve then? Can you give a bit of an overview?

Dr Liza DiLeo Thomas  
So I'm the medical director for our patient and provider advocacy for the hospital system, which is reviewing the patient grievances for the clinical information and empathy and that sort of thing. I'm also involved in the orientation of our new providers and teaching them empathy, teaching them communication, as well as doing a intensive communication course for other providers, which is a longer course that's given throughout the year. And then other communication teachings for other providers throughout the year.

Jackie Baxter  
Yeah, that's amazing. And you just mentioned empathy. And I think it's not a word that I had really thought too hard about until I got ill with long COVID and have been speaking to so many people, both with long COVID and helping people with lung COVID, and in the sort of wider chronic illness kind of world. And I would never have kind of thought that a doctor wouldn't have that. But it's not until I had experienced this myself and had heard other people talking about things like gaslighting, that I had never even heard of before, that I kind of realized that actually, how important empathy can be and maybe sort of humility as well, you know, in a medical professional, who maybe doesn't understand completely what is going on with a patient, that the very least that they should be showing is some empathy. But that isn't always the case. I think for a lot of people.

Dr Liza DiLeo Thomas  
Yeah, my definition of empathy has changed since I got sick with long COVID. I used to define it as putting yourself in someone else's shoes. But now I realized that's impossible. Unless you've been in someone else's shoes, and you can't, you know, you can't always put yourself in someone else's shoes. So there was no way for me to put myself in someone's shoes with a chronic illness until now, someone with an invisible disability, until now, someone with chronic pain, until now. 

So now I describe it as the ability to imagine what someone might be thinking, and believing how they're feeling. I think it's, you know, that part of believing what they're feeling is important. And that's a lot of times what's missing. 

And empathy is a big part of what I teach when I teach these courses. And believe it or not, empathy can be taught. And it's something that has been studied in medical professionals. And when they've studied it, they see that it's something that is lost in medical students -that a lot of medical students will come in, and there's a score, an empathy score that they measure when they come into medical school. And then when they start to go into their clinical year; in the US in medical school, usually the first two years are in the classroom. And then in the third year, they go into the clinical rotations. And it's in that third year, when they start to get clinical, that their empathy scores start to go down. In their fourth year, there's a little bit of an uptick in the empathy scores. But it doesn't go up to where they were in those first and second years. And in their residency, when they continue to be all clinical, it continues to erode. 

And they think this is for a number of reasons. There's a lot of pressure on the medical students, the long hours, the pressures of school, the long hours that the residents work, the isolation from family and friends. But they also believe that it's because when the medical students go into their third year, they're going in with this idealism, that they can cure everybody, that they can treat everyone's pain. And when they realized that that's not true, they lose a little bit of that hope. And as a result, they lose a little bit of that empathy. 

So it's sad. But it needs to be addressed, it needs to be worked on. And I think that, you know, as physicians go on in their career, and I haven't seen studies on this, I'm not saying they're not out there, they may be out there, I just have not seen them. But just in my own career, what I've seen is that, as physicians go on in their career, if they're not significantly burned out, which is a whole another podcast, their empathy tends to go up. But one of the things that does make empathy go up is clinical experience. So that could be one of the reasons why we see that.

Jackie Baxter  
Wow, that's amazing, and that you can measure it as well. That's really fascinating.

Dr Liza DiLeo Thomas  
Yeah, I started looking at that, because I was curious about how this illness was affecting me and my own empathy. And I was curious if there were studies out there about whether or not having an illness made you a more empathetic physician. And I found that there was evidence that said that - that having an illness or having a family member with an illness made you a more empathetic physician, which it makes sense, you know, that it does. 

And I'm sure you know, any physicians that are listening to this podcast know that when you've, you know, if you've yourself has been in the hospital, if you've had a child in the hospital, a parent in the hospital, it's different when you yourself are hospitalized, and then you're taking care of someone else your age or a child your child's age or elderly patient your parents age. So it makes sense.

Jackie Baxter  
It's like it brings it closer to home almost. And I'm not sure why that would make you more empathetic to other people. But I think you're right that it does. 

Yeah, it's interesting what you were saying about It being very difficult to understand what someone's going through until you've gone through it yourself. Because I mean, I've definitely noticed that with my own experiences, I do have a couple of friends who I've known before I got ill who had, you know, various chronic conditions. And I sort of have realized, since becoming ill, that I didn't understand their condition at all. I would like to think that I was never not empathetic towards them. And that I, you know, would never disbelieve anything that would say, because I don't think I did. But I certainly didn't understand how completely it can take over your entire life and every single part of you and the things around you, you know, your family, your friends, your you know, everything. 

So, I suppose yeah, when you're then thinking about a doctor, for example, when you go to see your GP, or whatever the equivalent to your GP is, you're talking to the doctor about your condition that they probably don't have, they may have experience of it from other patients, but they probably haven't physically experienced it themselves. And this idea of them being able to maybe not understand, because they haven't experienced it, but definitely believe what you're saying. They're obviously very, very connected. But I'm not sure if they're quite the same thing, the sort of empathy and the believing your patient. Because not being believed. That's dismissive, isn't it? That's, you know, that is like the worst possible thing you can imagine walking into your doctor's surgery and being told that, you know, not only are you feeling terrible, but actually that you're making it up.

Dr Liza DiLeo Thomas  
Yeah, I've been trying to speak to physicians, whenever I can about my own experience. I just recently spoke last Thursday, to a group of Emergency Physicians, the Louisiana American College of Emergency Physicians, about long COVID and how it may present to the emergency department. And in there, I told them my own story. So I finished up by saying that there's not much that we have to offer long COVID patients right now, in terms of treatment, we really have nothing to offer long COVID patients in terms of treatment, other than some treatment for symptoms, but the most important thing that you can tell them is that you believe them. 

And there's actually a quote from Twitter, you know, I've looked again for this guy on Twitter, and I haven't been able to find him, I think he's not on there anymore. I think he's doc Hutchinson, because I want to give him credit, because it's a great quote. He says, it took me 25 years of practice to figure out, the best thing to tell my patients is, I don't know what's wrong with you. But I believe you and I will work to figure this out. And so that's how I finished off the talk, is that telling your patients that you believe them, even if you don't know what's wrong with them, and sometimes it can be really difficult for physicians to admit that they don't know. 

And that's not the doctors fault. That's the way that we've been taught, all through our schooling. It's the way that we've been trained, because we've been trained that patients come to us to be fixed. They come to us for help, they come to us for answers. And our job is to fix them, to give them answers. And so when we can't do that, we feel like we're failing. And so it's really difficult for us to say, I don't know what's wrong with you. And so it sometimes takes a, you know, years, like this doctor said, it took me 25 years of practice, to realize that it's okay to say, I don't know what's wrong with you. I

'm not picking on younger doctors. You know, there's some great younger doctors who realize it's okay to say that, but when you're just outta school, I think it's even harder. Because, you know, all through school, they're saying like, what's the diagnosis? What's your differential diagnosis? And but I think sometimes that's the most important thing. And we as long COVID patients, a lot of times we don't want to hear that either. We, you know, we want to know what's wrong with me. 

But you know, one of the other things that I realized being on this side of things too is, unfortunately I haven't been able to go back to work in the emergency department since I've been sick. But when I do or if I ever do, I'm certainly going to change the way that I did this. Because I had a practice of when I would have a patient who would come in with whatever - chest pain, headache, abdominal pain, and we would do a workup in the emergency department that may have included labs, CAT scan, EKG, maybe a consult with a specialist. And nothing would come back abnormal. I had a habit of going back into the room and saying, great news. Everything's normal. 

And I would be frustrated when the patient would look like that wasn't great news. And I couldn't understand why. And my colleagues couldn't understand why. And we would talk about it. And we'd say, like, do they want to be told that they have a clot on their CAT scan? Do they want to be told they have a heart attack? Do they want to be told they're being rushed off to the operating room for appendicitis? But it wasn't until I was sick, and had normal test after normal test after normal tests, feeling worse than I ever felt that I realized how those patients felt. That no, they didn't want to be told they were having a heart attack. No, they didn't want to be told they were being rushed off to the operating room. 

They just wanted to be told, yes, you're sick. Yes, there's something wrong. No, it's not great news that you're in the emergency department. Okay, your tests are normal. But yes, there's still something wrong with you. We just haven't figured it out today. So there's another way to do that, too. And I'm teaching providers about that now, too. So there's a lot of things that I've learned. I thought, you know, I was certified as a patient experience professional before I got sick. I thought I knew it all. I thought I knew all there was to know about patient experience. But this illness has taught me quite a bit more.

Jackie Baxter  
Yeah, it's so interesting how you can just see it through different eyes. And I find I see so many things through different eyes. And you know, not just in the medical system, either, you know, all around, you know, I look at buildings now and think, oh, there's no wheelchair ramp, or, well, that event doesn't have like an online option for people who aren't able to physically be there for whatever reason. And it's just all these things that you're starting to see through this slightly different lens from having experienced it yourself. 

And I guess that's where the kind of experience thing is so important, isn't it - that you know, you might think that you have thought of everything. But until you've actually asked your patient who is experiencing it, you know, they're going to come up with all sorts of other things that you haven't thought of, just because why would you? You haven't experienced it. So I guess that is why having patients involved at all levels as well, isn't it - is so important?

Dr Liza DiLeo Thomas  
Yeah. And we have, you know, we have a patient family advisory board at our hospital who serves that purpose. But yeah, having patients who are, you know, in my role, I think is invaluable. And there's actually another member of the patient experience team, who I've been in close contact with. She's one of our patient ambassadors, which is one of our patient facing patient experience people, she actually rounds on the patients who are boarding in the emergency department and that type of thing. And, she called me yesterday about an encounter she had with a physician where she said that he walked into the room with her discharge papers in his hand before they had even had the encounter. 

She's found me because somebody said, I think you have long COVID, which it sounds like she does, but she's just getting hooked up with the system. And she happens to be seeing a cardiologist for chest pain. But she called me the other day. And she's like, do you think I might have PoTS? And I was like, Yeah, I think you do, why don't you mention it to your cardiologist? But he was planning to discharge her because all of her tests came back normal for chest pain. So he walked in with the discharge papers in his hand, planning to discharge her from the clinic before she even had a chance to say like, Hey, I think maybe I have PoTS. What do you think about that? But that was what she was faced with was like, I'm discharging you from the clinic, because all your tests are normal. 

So yeah, so she's kind of sharing these encounters with me too, about the patient experience. And it's definitely eye opening and a good position for us to be in to hopefully make improvements for all of our patients throughout the system.

Jackie Baxter  
Yeah, and I guess, you know, with something like long COVID, you know, it's sort of, I guess, because it's hit so many people all at once, and the sheer kind of number of people all suffering at once, and not to negate people who've been suffering for decades with things like MECFS and you know, all sorts of other things. But I think this kind of long COVID movement and you know, the sort of people. You know, there seems to be huge numbers of people in the medical profession, for example, that do have long COVID, like yourself, and having these people in these positions, I have to hope that that can only make things better for people with chronic illness in the future. You know, having these people like yourself able to input in even more of a way than you were before?

Dr Liza DiLeo Thomas  
Yes, I would definitely think so - it does seem like we still have a ways to go. I'm hoping now to start working more with our learners, our medical students and residents. I just had a meeting with the head of the medical school and the residency program earlier this week to start working with them. Because I think that's where we need to start. You know I mentioned that study about the loss of empathy when they become clinical. And so I think starting with them is of the utmost importance. And but yes, I think, hopefully, that we can gain momentum with the long COVID movement and certainly help all the other chronic illnesses.

Jackie Baxter  
Yeah, and it's not that everybody is awful, either. I mean, I've encountered some very good doctors. I mean, when you were talking earlier about the doctor who admits that he doesn't know, and, and I had that happen to me with one of my doctors, you know, he just said to me, Look, I don't actually know what's going on with you. And it was so incredibly refreshing. You know, it was just like, Oh, my goodness, I've heard about people being gaslit and being treated awfully. And I've gone to my doctor, who I put up on this pedestal that he probably didn't deserve, expecting him to fix me. And he turned around and said, Actually, I don't know. And I'd gone. Wow, I needed that, actually, you know, it was that kind of like breadth of kind of honesty that I really wasn't expecting. So you know, you do hear of people having good experiences. And there are a lot of good doctors out there, I think, medical professionals in general, not just doctors. Yeah, I think it's not that everybody is doing things wrong. It's maybe more that everybody can do things better.

Dr Liza DiLeo Thomas  
Yeah, I think you're exactly right. I think there's plenty of good doctors out there. And there's plenty of empathetic doctors out there. And doctors who are using excellent communication skills, I think that we can all learn from each other. And when I do these courses, that's exactly what we do. And you know, it's very interactive. And people say like, Oh, when I have that encounter, I tend to do this. And people share ideas that I've never heard before. And I hear every day in my role of great experiences too, positive feedback from patients. 

I myself have great doctors, my primary care doctor, every time I see her, I'm going to see her later today. Every time I see her. I feel like she's spending too much time with me. I feel like I'm taking too much of her day because it feels like she's not rushed at all. But I feel like, oh my gosh, shouldn't you be seeing somebody else, like you're in here way too long with me. But she doesn't, you know, she feels like she's so relaxed, and just has all the time in the world to spend with me. And I don't know how she does that. Because I know she's terribly busy. But she gives me the impression that she has all the time in the world for me. So, yeah, there are some doctors that are great. And we love those doctors, and they don't need my help. They don't need anybody's help. They're doing just fine.

Jackie Baxter  
Yeah, but absolutely - your appointments with your doctor where you don't feel rushed, where you don't feel like you're on a timetable, and it's kind of like we've got to get you out of the door. And I'm sure every doctor is feeling that pressure. You know, we all know how much pressure healthcare systems are under at the moment. So you know, every doctor you go and see is going to be clock watching and thinking, Oh, my goodness, I've got 20 million patients to see after this one. 

But the fact that you don't feel that coming off them, I think is quite important, isn't it, because you feel valued, you feel like you are important in that moment. And that doctor is thinking about you. They're not thinking about the next patient or the previous patient, actually what they're trying to do is the best for you. And I think, again, I don't know if that's part of empathy, but I think it's a very important part of a doctor and how they kind of are perceived from the patient's perspective.

Dr Liza DiLeo Thomas  
Yeah, it's certainly part of what we discuss in the course, is how to kind of reset your mood and reset your face. If you leave a difficult patient encounter maybe, and you're going into another - because some patient encounters can be really difficult for physicians too, and so leaving one encounter and going into another. You know, sometimes you need to take a moment and reset. And that can be difficult. But it's important to do for the next patient who may have been waiting months to come see you, may be waiting months for this appointment, may have a list of things that they want to discuss with you. This appointment may be really important to them. So yeah, it's definitely something that we discuss. But certainly, especially primary care physicians are under a lot of pressure for time these days.

Jackie Baxter  
Yeah, I think that is probably the same kind of across the world, isn't it? You know, all healthcare is under a huge amount of pressure. And that is obviously going to take its toll on those working in those professions as well. 

Dr Liza DiLeo Thomas  
I think so. 

Jackie Baxter  
Yeah. Looking after the doctors as well as the patient. 

Dr Liza DiLeo Thomas  
Right. Right. 

Jackie Baxter  
I would love to talk a bit about what we want change to look like - in terms of kind of doctors and medical professionals in general, and empathy and understanding and the way that we treat patients. And I guess, what can the sort of surge in long COVID and chronic illness patients - what can we teach doctors or help doctors with? I guess, in order to do this?

Dr Liza DiLeo Thomas  
Well, I mentioned burnout. And I think that that's something important to mention again, at this point, because I think that it really should remain at the forefront of conversation when we talk about patient experience, because you can't have happy patients without happy doctors. And right now across the board, doctors are not happy. And they weren't happy before the pandemic, and the pandemic did not help things, obviously, for a lot of reasons. 

There's a lot of pressures on physicians. Physician suicide is a problem, mental health in our profession has a stigma that it shouldn't have. And there's some work being done to improve that. But there's still a lot of work that needs to be done there. So I think that that's a big issue that needs to be addressed. 

But beyond that, I think that we do have a lot that we can teach physicians. I think that sometimes we may need to be a little patient with physicians and understand that especially the younger physicians, understand that when they are trying to pigeonhole us into a diagnosis, that's because of how they were taught. That's because of how they were trained. It's not because they're mean people or, you know, it's not necessarily their personality. But that's their education. And it's okay to question those things. 

In addition to improving physician wellness, another change that needs to occur is education about illnesses like long COVID and MECFS. And I think we have a long way to go there as well. It seems like there are small factions of people doing that. But even when I gave this lecture last week, and I was talking about the neurologic and cardiac post COVID complications, and some physicians came up to me afterwards and was like That's so interesting, I didn't know that could happen. So there's a lot of education that needs to happen. 

I feel like you and I and other people who are reading about this stuff all the time are like, Oh, everybody knows this, because we're reading the articles as they come all the time. But other people are just, they're reading the articles for their specialty and that are pertinent to them, but not necessarily these articles that are so pertinent to us. So there needs to be more education for the physicians. I know that here in New Orleans, Tulane University Medical School is having a symposium. It's going to be the first symposium in New Orleans on long COVID, all day at the end of April. So I'm excited about that. I'm going to be on a panel there. Hopefully there's a good turnout for that. But we'll see. Hopefully, we'll have a lot of people show up for that.

Jackie Baxter  
Yeah, that sounds really exciting. And I think you're right about education because there's not like a "cure for long COVID" you know, that doesn't exist. But there are so many things that physicians need to understand, like you were just saying about the, you know, heart related complications, for example. So you know, understanding that that can be a thing to start with, but also how many things that actually can be done to help different things. 

So just because there isn't a "long COVID Cure" doesn't mean that somebody who has PoTS, or dysautonomia, or breathing pattern dysfunction, or, you know, any of these other things that we know that happened to all sorts of people as long COVID can't be tackled individually. And that that can hugely help the kind of quality of life of a person, you know, just because they aren't, quote unquote cured, doesn't mean that they can't be helped in many, many different ways. And I think that is important.

Dr Liza DiLeo Thomas  
Yeah, I feel like the recognition, I mean, it can happen from person to person even, so, you know, just to give you an example, so this woman who calls me and said, Do you think I could have PoTS? And I said, Yes, I think you might, mention it to your cardiologist. She mentioned it to her cardiologist, he's referring her to an autonomic specialist. So you know, that otherwise would not have happened, you know, she's not going to get referred to an autonomic specialist without getting education from me and then to her cardiologist, and then. 

This lecture that I gave, in preparation for that I went on the body politic group on Slack, and I made a post and said, if anybody would like to share, if they've been to the emergency department or the a&e for any symptoms, would you share what you have been for? I had about 21 different people share. The majority of the symptoms were for dysautonomia type symptoms, and one woman said that she had an emergency physician say that she believed she had PoTS because she had seen a lot of people with it. 

And so, you know, I spoke for a while in my talk about dysautonomia, because I said, chances are every single one of you in this room, and there were maybe, I don't know, maybe 80, or 90 people I spoke to last Thursday, I said, chances are every one of you in this room has seen somebody with autonomic dysfunction, but didn't recognize that that's what it was. Because the symptoms are so varied. So if after this talk, you can recognize someone and say, I think this is what you have, then they can, you know, you're not gonna be able to make the diagnosis in the emergency department, but at least they can go out and tell their doctor get a referral to a cardiologist, and we can maybe get somewhere. 

So education doesn't have to be a lecture, it can be through the community, it can be you telling your friend like, Hey, I saw this article and your symptoms sound like you might have, you know, I saw that the lady on the Housewives has PoTS. I mean, my mom sent me that - I don't know if you saw that on on Instagram, a lady on New Jersey housewives or New York housewives or whatever posted that she has PoTS from long COVID. So that, you know, lots of people probably saw that. And so I mean, that's going to be education too. And then people go to their cardiologists, and maybe their cardiologist will read about PoTS. So I mean, that counts is education, too.

Jackie Baxter  
Yeah. And it's everybody listening to everybody as well, isn't it, a lot of what I've kind of taken from what you've just been saying is that patients need to obviously listen to doctors, but doctors need to really, really listen to patients, partly, you know, when they're describing their symptoms, and you know, to believe them, and all of the things we were talking about earlier. But also this idea that doctors can learn from patients, because what I have noticed over the last couple of years, is that I have had the time, and obviously a vested interest, in reading things like research papers, and looking up different doctors and different specialties and looking at my symptoms and thinking, right, this collection of symptoms, looks an awful lot like that, let's research that. 

So then I've been able to take that to my doctor, and my doctor wouldn't have the time to do that, because he's seeing 300 million patients a day and you know, then going home and looking after his children or, you know, whatever it is that he's doing. So, you know, I have that time to do that. And I'm obviously not a medical professional. So I, you know, can't diagnose and prescribe stuff in the same way that he can. But you know, if he's able to then say, well, actually, that's really interesting, what you've brought to me, I'm going to look at that, then, you know, it's that kind of sharing thing isn't that is so valuable. And like you were just saying, you know, patient to patient, patient to doctor, doctor to patient. Everybody can learn from everybody, which actually takes us full circle back to what we were talking about earlier, wasn't it?

Dr Liza DiLeo Thomas  
And I mean, that's one of the interesting things about this disease, right, is that, you know, this whole group that formed on social media that gave it the name and then gave the name long hauler. Now, I will say that your physician may look at you funny if you come in and say, I think I have the same disease as the Real Housewife, you know, I'm not going to say that it's going to be easy for your physician to believe you right off the bat, if you come in with that story, you might have a little bit of trouble with that belief and that empathy, you might have to work a little harder for them for that one.

Jackie Baxter  
Yeah, brilliant.

Dr Liza DiLeo Thomas  
You know, I said I learned a lot about patient experience being ill, one of the things that I did notice is the people around me that have true empathy. Because one of the things that we teach in this course, we teach these, and I don't want to give away a real trick of the trade, but we teach these empathetic phrases for providers to use. We call them the "must be" and "sounds like". That must be awful. That sounds like it's painful. That can, you know, give them a pause and can really be empathetic and make make a connection with the patient, make them pause and show some empathy. 

And I've noticed that when my friends, when my family use those phrases, that they are truly empathetic, as opposed to the sympathetic phrases like, Oh, I'm so sorry, which is kind of our gut reaction when you hear that someone is suffering, or someone's going through something difficult. It's a lot easier. And it takes a lot less effort to give that sympathetic phrase than it does to give that empathetic phrase. That it takes a lot more thought and a lot more effort to give that empathetic phrase. So that's something that I've noticed that I had been teaching before I got sick, but I've noticed it a lot more on this side.

Jackie Baxter  
Yeah. Well, I've learned a lot today. 

Dr Liza DiLeo Thomas  
Thank you. 

Jackie Baxter  
Yeah. Well, thank you so much for joining me today. It's been such a pleasure chatting with you. And like I said, I have learned absolutely loads. So thank you so much for your time and all the best with your recovery. 

Dr Liza DiLeo Thomas  
Thank you. Same to you.

Transcribed by https://otter.ai