Managing Long Covid: Expert Strategies from a Clinician and Lived Experiencer

[00:01:34] Mark Kargela: hello, friends, and welcome back to another episode of the modern pain podcast this week. I had the privilege of sitting down with Daria Aller. Daria is one of those people who share a unique perspective. She's both a clinician and a live experiencer of long COVID. Daria shares her personal journey of contracting COVID 19 in March of 2020.

And it's progression to long COVID. We touched on a ton this episode and I asked her about our bias towards exercise and treatment and how that may not align well with people dealing with long COVID.

[00:02:00] Daria Oller: Somebody could come in. Okay one day and the next time you see them, they are completely, and what we call being crashed, the post exertional malaise. And you have to be able to adapt to that and say, like, we really need to pull back and even sometimes, cause you know, we're so used to, we have a little flow chart and we have our ther ex and we know how to bill it and this is so different.

[00:02:18] Mark Kargela: Daria also shared her personal experiences with long COVID and how we need to look beyond just our patient's clinical presentation and into their lives.

[00:02:25] Daria Oller: I'm in the airport going, I need to sit down and there's nowhere to sit.

I can't make the walk from, you know, to get my luggage. What am I supposed to do? I sit on the floor, but not everybody can do that. [00:02:34] And it's just, yeah, it's kind of looking at the whole big picture now, that not just the, in the moment somebody's in front of you, yes, obviously pay attention to them, but. Who is that person for the other, you know, 23 hours a day or whatever it is, how are they interacting with their environment?

[00:02:48] Mark Kargela: We spent time discussing how nerdy science research is great, but it may not resonate with the unique person in front of you.

[00:02:54] Daria Oller: How do I make this click with people?

How do I make this be a little bit more real that it's not just these random numbers that I'm hearing about or mitochondria? Yeah. Reading about mitochondria is going to be very different than reading about somebody who can no longer work, even though it's all, you know, one in the same.

[00:03:08] Mark Kargela: Daria also discussed how it's okay to say, I don't know, and the self reflection it takes to be able to best address this in your practice.

[00:03:14] Daria Oller: What else don't I know if I'm, if I'm missing this, which is not the fault of clinicians, because this is, this is very easily missed by people again, because we're so siloed.

But then you have to start questioning what else don't I know? What else did I miss? Did somebody have post viral illness years ago and I didn't recognize it?

[00:03:28] Mark Kargela: This episode is packed with great pearls and it will have you better helping those in your world who are dealing with long [00:03:34] COVID. Besides our expert guest this week, my daughter decided she was going to make an appearance in the video. For those of you watching on YouTube, you can let her know in the comments.

If she's YouTube material,

I would be grateful if you could subscribe to the podcast, wherever you're listening or watching. So we can spread this information to more people who it could help

as always. Thank you so much for deciding to spend some of your valuable time consuming our content. Now onto the episode.

[00:03:55] Announcer: This is the Modern Pain Podcast with Mark Kargela.

[00:04:00] Mark Kargela: Welcome to the podcast Daria.

[00:04:02] Daria Oller: Thank you for having me.

[00:04:04] Mark Kargela: It's great to have you. I think you're one of the people on social media that I've followed. I followed your journey on social media, on X, Twitter, whatever the heck we're calling it now with, um, what you've dealt with. I think you're one person who I think brings a really unique perspective with being a lived experiencer and seeing the clinical side.

So you get to see both sides of it, which I think is a valuable perspective to bring. But let's bring folks up to speed who may not be familiar with you. Can you kind of share your story and kind of get into how. It, you kind of came about to really specialize in this area around long [00:04:34] COVID.

[00:04:34] Daria Oller: So first my quick little background. I'm a physical therapist and an athletic trainer. Um. And then in March 2020, I contracted COVID 19 and obviously we had no idea it was going to happen. Um, I, at that time, I lived in northern New Jersey and I worked in New York City. So we're in the epicenter of where everything's happening.

Um, and there's a handful of PTs on Twitter who told me to share your story. You know, we don't know what's going to happen. We can learn from you. And I had no idea that post viral illness was a thing. Um, so I didn't understand at the time what I was sharing. And as I'm saying, Hey, I'm not getting better yet.

I still have all these symptoms. And it went from the cute things that we were seeing four and a half years ago, your difficulty breathing, stuff like that, to just progressing to what we'll get more into, um, what is now called long COVID. So I had long COVID. for two months before it even had a name, five months before the World Health Organization recognized it.

Um, so for better or worse have been at this like from the beginning. Yeah. And so from that, um, By like the end of 2020, a [00:05:34] handful of us PTs literally around the world found each other on Twitter and started saying, Hey, we should do something. We should get our stories out because we had individually been tweeting and sharing some things.

So we started Long COVID Physio, which is an international association now, which is amazing. Um, so now I've gotten into a lot of education and advocacy work around Long COVID on one end to help like raise patient voices and then on the other end to help clinicians understand what they're dealing with.

[00:05:59] Mark Kargela: I will link the long COVID site is long COVID dot physio. I have it up here, but I don't have it up on the podcast for those of you who are watching on YouTube, but yeah, we'll link it. It's, it's a great resource. There's some awesome things. If you want to get really up to date and have a good clinical reference to that's probably the site to go to that absolutely.

Isn't there's a bevy of great clinicians all over the world. Some folks who are kind of allies, some folks who are in, in Daria's position where they're unfortunately been a lived experiencer and somebody who's obviously a huge advocate for, for both clinicians and patients to get better understanding and management of the long COVID situation.

I'm [00:06:34] wondering, as you've experienced it as a lived experience or as a person dealing with long COVID, how was your interaction with the healthcare system? I'm always fascinated. Sometimes we have horror stories. I honestly haven't heard your exact story as far as like, I know there's. It's been some challenging, I'm sure, uh, interactions, but I'm just curious what's been your experience and how has that maybe impacted how you look at things as a clinician, um, after kind of going through it yourself?

[00:06:58] Daria Oller: Yeah, this has been interesting. So I have a friend like I don't seek formal medical care and I was it because I understand what the medical system is like, and I don't have the capacity to do all the running around and trying to find people who understand it. So a lot of my experiences come from just the people, the clinicians I know personally, and On one side, it's been great where people were jumping in from the very beginning, saying like, wait, we didn't even know what this was yet, but here's what I know from orthopedics.

Here's what I know from cardiopulmonary or whatever their areas were trying to put all the pieces together versus then on the other side, clinicians who I've personally have known for, you know, years and years saying, [00:07:34] you know, kind of hinting this is in my head or I can't get deconditioned. I have to keep pushing, push through the symptoms.

You know, I'm overthinking it. And even like I have a family member who's a physician who was saying this is all, um, depression and anxiety, which I don't have. Um, so it's really frustrating on that side because I'm saying, you know, I'm, But you know me, like, and I, I know what I'm talking about, even though in the beginning, I didn't have the language.

I didn't have the medical language yet to describe the symptoms, but I could explain still what I was going through. And to just not be believed that all of a sudden I went from somebody who's recognized as working hard and being a distance runner and being like a trained dancer and everything to now people are telling me I can't get deconditioned. It was such a weird thing to start experiencing and I'm just going almost naively like, is this what patients go through? Is it, this is really how bad this is and not being heard and saying, I know that go back to 2020 when we're being told either you die or you get better in two weeks. Like it was so polarized.

I'm [00:08:34] saying, well, I'm alive, but I'm nowhere near better. And people are just saying. It's in your head. We don't, we don't know what's going on. This doesn't make sense. So it's been really weird. It's, it's frustrating on that one. And like I would love to formally have healthcare, but I don't know how patients do it dealing with insurance, dealing with not being believed, getting things put in your medical records that are not accurate, that kind of send you down a psych road that this is not what that is.

So it's been really frustrating. Um, but on the happy and I will say, but we do have like a nice body of clinicians who are very helpful.

[00:09:05] Mark Kargela: Do you think that's like a self defense mechanism? Like, if you look back, cause I, I experienced this with my wife. She had a, uh, Rare micro embolic stroke. It was a bad stars alignment and same thing. Like she comes into this and like, I mean, because it was a tough diagnosis and obviously long COVID at the time was like a, didn't even know what it was really.

And so there's these medically unexplained symptoms and there's a whole litany of literature around medically unexplained symptoms too. But I sometimes wonder, you know, cause I've, initially I just get so angry. I was so mad because it was like, [00:09:34] all right, you've, have you been dealing with a lot of anxiety?

This probably is a lot of your stress. And like, Her right side of her body isn't really moving well. She's got facial, facial droop. I think it's more than just some stress at this point. Um, but it's just and again because it wasn't knocking it out of the park with all these like A, B and C equals D lab tests where it all kind of hashed out.

I'm wondering if you think that might be just a way clinicians the self defense of like I don't know what the heck this is and I can't look like An all knowing sage, like I got to be this hero that swoops in and I get it. I mean, we're trying to help people, but I'm wondering what your thoughts are, where that comes from, where it just gets lumped to stress or

[00:10:10] Daria Oller: that self defense is a huge part of it. Um, cause I think many of us. Hopefully no, you know, it's important to say, I don't know, you know, here, I know, here's how much I do know and understand. And then I don't know, but I'm going to find out for you. I'm going to talk to people, but that's not easy for everybody as a clinician, especially, I think, as you get more experience and you're sort of expected to know things.

Um, so there's that part of it and it's sort of having to be comfortable with like, [00:10:34] Am I doing something wrong? Am I missing something? Did I not read something somewhere? And I think we also, especially in PT, get like siloed into our specialties, and because I've seen people really come at this on the cardiopulmon, which is fine if this is PICS.

If this is people who are in the ICU, that's okay. Whole other story, but for people in my boat on this like neuroimmune end, like the cardio pump stuff is not it. That's actually probably going to tank us more, but they're really adamant about it because that's their training. Or if somebody is coming at it from the orthopedic side, because we do have a lot of like muscle and joint pain, it's easy to try to exercise this away.

And if that's making me worse, it's my fault because I'm not listening to what the PT saying. Not that the PT maybe doesn't recognize this. Isn't what they think it is. It's hard. And I think it's hard too, to have to. Say, look, what else don't I know if I'm, if I'm missing this, which is not the fault of clinicians, because this is, this is very easily missed by people again, because we're so siloed.

But then you have to start questioning what else don't I know? What else did I miss? Did somebody have post viral illness years ago? And I didn't recognize it. And [00:11:34] I think it makes people uncomfortable. Um, and then it's just, it's easy to blame the patient. Also. It's so easy to use the terms noncompliant and catastrophizing and lazy and what, you know, there's endless terms for it because it puts the the onus on me now as the patient as opposed to on the clinician to try harder.

Yeah, that is, there's a big struggle with this.

[00:11:54] Mark Kargela: I couldn't agree more with kind of that perspective of like just being able to say, I don't know. I think that is honestly, I've come to think of that as a sign of like a really good clinician is the ones that are willing to understand their limitations, right. And understand where they don't have.

a good grip on what's going on with the case in front of them and being okay with it and still having a good empathizing, compassionate, like listening, like, Hey, we're going to get to the bottom of this. Let's, let's work and get on a team and involve the people we need to. But yeah, I, I totally agree with you.

I think it's that inability and it's probably right. I think it's the folks later in their career, there's almost this pressure of being this like established experienced therapist who needs them to kind of know it all. But I [00:12:34] also think sometimes early in your career too, where you're trying to establish yourself like this, massive imposter syndrome that we probably come out of school with where we want to know some things and feel like we know what we're doing and clinic obviously isn't as black and white as the university paints it to be and then it can be destabilizing.

But I want to get back to one of the things you mentioned. In that response as far as exercise because we talked before we went on live here as far as I know I have driven some people from physical therapy by pushing them into exercise just from my bias, right? I mentioned like I was the exercise hammer and people were nails.

If you had pain and you had a problem You're going to get exercise. Yet, that is often not the solution for, for folks, especially when they're dealing with some of the conditions post exercise malaise and different things. I'd love if you could touch upon that as far as kind of where you see exercise sitting, um, with these type of populations.

[00:13:26] Daria Oller: Oh, this is rough for the PTs in particular. I think probably more so than other like healthcare professions because exercise is what we [00:13:34] do, whether it's. sitting up in bed or, you know, running, being in an Ironman exercise is what we do. But so what we know is, and this is coming from other post viral illnesses, this is not new to COVID.

Um, people can experience what's called post exertional malaise, which basically your mitochondria are not working properly and people will kick into going. above their anaerobic threshold way sooner than what we would expect. It literally could be sitting up in bed, walking up a flight of stairs. So when you should not see people out of breath, and this is not deconditioning, you could do two day cardiopulmonary exercising, test exercise testing that will show this is not deconditioned.

There's evidence on this, but as PTs, that's, that's, antithetical to what we do. It's no, you have to try harder. You have to push more, one more rep, do a little bit more, try harder, one more pound. And that that's not at all how this works. And this has to be like symptom titrated, even if you're getting to, I'm going to call it movement, not even exercise, we'll say movement.

So it's not the, well, you did five pounds last time. Let's do seven or eight pounds this time. Somebody could come in. Okay. [00:14:34] One day. And the next time you see them, they are completely, and what we call being crashed, the post exertional malaise. And you have to be able to adapt to that and say, like, we really need to pull back and even sometimes, cause you know, we're so used to, we have a little flow chart and we have our ther ex and we know how to bill it.

And this is so different. It could be sitting down with the patient and said, helping them manage their day, how to manage symptoms, and it's just so different than an exercise program. But. When everything we do has been exercised from our training, that's so hard to, it's such a change of everything we've ever learned.

And that's also not easy to sit with where yes, exercise is wonderful for so many people in so many reasons. And when you take, I say with long COVID physio, who are PTs and OTs and other healthcare professions that we've been exercising personally our whole lives. And we could tell you all the reasons why you need to exercise and all the risks that come with being sedentary.

We're saying, yes, we know. So we're the ones sitting down. There's a reason. And you need to listen to us when we explain the symptoms. And then we come to you with all our evidence. And that's still, it's not enough. There's been some like sketchy, [00:15:34] not great papers that have come out. And there's one that was talking about an exertion preference.

And that's what this is. We don't want to exert ourselves. So we literally have former Olympians, former division, one athletes, professional athletes, who all of a sudden don't want to exert themselves anymore. Um, but. That, that's easier. I think I'm a clinician and it's much easier to say that again and say we, we don't want to exercise.

We're now being lazy as opposed to saying exercise is not always medicine. It's not always the right intervention for everybody.

[00:16:02] Mark Kargela: There's definitely that bias that we carry as physios as far as like that is our intervention of choice. And I think we, Obviously, when it doesn't fit, you need to, again, diversify your practice a bit, like you need to learn how to coach people through flares, you need to teach energy conservation principles, like you said, planning a day to where, you know, they can kind of look forward and ahead and kind of budget their, their exertion of what they have before they hit, you know, that kind of threshold for each individual.

Um, how, how has it changed your practice as you've kind of. [00:16:34] Have you, have you found yourself a lot more looking beyond maybe that bias of exercise? I know for me with chronic pain and persistent pain, I've, my view on exercise, it can be definitely a piece of things and, but I agree with you. It maybe it's just valued movement, things that check off things that are meaningful for people in days.

And it doesn't have to be this like exercise where it's got to be this dosage and volume and which again, we, we kind of dose it, but it's dosing life, right? It's trying to dose people in valued life. How's, how's your practice kind of evolved in that aspect?

[00:17:04] Daria Oller: So this is a great question because I was in an outpatient clinic. So I, I work at productivity, which is in New Jersey and I'm on site with employer clients. So I'm in New York city with a big construction company. So I'm not in like a traditional like outpatient setting anymore. When I was, my time was split.

Um, most of our patient population is like super physically active. So exercise is perfect with them on this end of it, even for people who don't, cause there are a handful of people I see that have long COVID, but it's, it's not like treating like we went in the clinic. Um, but my [00:17:34] approach to just like you're saying, energy conservation symptoms in general for whatever they have is different now, because I'm looking at it, it's not like.

Well, you need to get home at the end of your ridiculous day doing heavy manual labor and now get to the gym and do all of these things. I'm saying, well, you only have so much time in the day. You literally only have so much energy. We just had heatwave after heatwave after heatwave, you know? So it's, it's that yet prioritizing what's most important.

And I say sometimes that might be not going to the gym. That might be, you need that extra sleep in the morning or that extra time with your family when you get home. Or maybe it's not, Um, I'm not going to be formally exercising today because tomorrow or the next day you have this other thing coming up.

And this is even for like an otherwise perfectly healthy population. My, I was very like, go, go, go. And not that I was like that with every patient, you know, but that sort of was like my approach to things. And now it's saying, well, you know, there are other priorities in life. There are other things. And as long as people are, you know, Moving however best suits them.

Cause sometimes like people will tell me they feel bad. They don't like to run. Like who cares? It's fine. You don't need to run. [00:18:34] Um, it's finding what is best for that person. And if that means like it's playing with their kids as opposed to squatting whatever, you know, that's okay. As long as you were moving.

So it's, it's, I feel like it's made me a little bit more open minded to what we do with people and listening to them and not feeling the need to like impose certain beliefs and say, no, no, no, this is what you need to do. You're wrong about this. We're saying as the experts. I think, you know, we're wrong a decent amount of the time.

And we, as you said, we come in with our biases and aren't always like hearing the person in front of us. I think I'm hopefully getting a little better at that now.

[00:19:06] Mark Kargela: It's a work in progress for us all, I think, you know, and I, I, we, I think the, you know, hearing you, it's, it's, it's refreshing because you, you kind of own your biases. And I think we all, as we kind of get further along, and especially as we see where maybe our biases aren't fitting with people and instead of like patient shaming that we take a hard look in the mirror of like, maybe it's us.

Like maybe it's we're trying to. You know, put square pegs and round holes where maybe we need to be the clinical chameleon or somebody who can adapt ourselves to the patient a little bit [00:19:34] more. I'm wondering with, with that in mind, do you find yourself, like, in more of a coaching space, would you say, or a guide by the side?

Or do you feel, I mean, there's still the times where we can, you know, really show our clinical expertise, I'm sure, with your, your, your practice, um, you know, with, with some of the folks in the industrial setting, obviously. You know, oftentimes more prescriptive kind of, you know, being an expert to help them kind of navigate some workplace things is definitely in place.

But I'm wondering with this type of population, do you, do you feel like it's more of a coaching, guiding thing versus like and, and being okay with that and not having to be like, I just think I, for whatever reason, I just think clinicians have this insecurity to like, Just be on the same level, right?

Cause that the patient in front of us is the expert in what they've experienced, the life that's been turned upside down by this diagnosis. And yet we have this hard time to do it. I mean, what's been your view on kind of our, our, our role as a clinician, these encounters.

[00:20:30] Daria Oller: I like, I don't remember if this was on one of your episodes, I just listened to that the [00:20:34] interaction, not intervention. I'm like, Oh, I love that. Cause that's literally what we do every day. So in the, like in the capacity and then now we're not billing and all that. It's, it's very different. So I can just talk to people and, you know, help them however they need.

And yeah, it is very much more like a guiding coaching. I'm not necessarily prescribing set exercises. I mean, sometimes that is a little bit more appropriate, but it's just. People big. Hey, I have a quick question. And because now the sentiment I've been with this one company for four and a half years, I get to know people and I kind of know what fits with them.

And even though two people might be coming up to me with the same lateral elbow pain, you know, they're going through two totally different things. So one person might be that, Hey, here's some like self mobilization techniques and some strengthening exercise. And the other person might be, Oh, we need to talk about your stress level.

We need to talk about managing all the things going on in your life. Because that seems to be like the more pressing thing right now. And it's really nice because we're not, you know, restricted by doable units, like all of that. Um, this morning someone just ran a bunch of random questions by me. He's like, [00:21:34] Hey, what do you think about this?

And what do you think about this? And I just kind of wanted to bounce this off of you, you know, cause they see us as, you know, like good resources for information. So it's really neat in that. And cause then people will also. Come back to us weeks or months later, be like, Hey, remember that thing that one time you told me it helped.

They're like, that was a while ago. And in that case, it's neat too, because it's, you don't know when something's going to resonate with someone, and then when they're able to incorporate it. Because I might tell you something today, but you're not in the place for it. Which is fine. And then things happen, and then they're able to try something.

So it's a really neat setting to be in. And even, like I said, I've run into people who have long COVID. And I'm not treating them, but I think I can bounce ideas off of me. We will just sit and talk and other people walk in and they're like, what is this conversation you're having? Cause like we have our own like little language and just saying, even to be on a more personal level, like I'm not going to divulge everything, but the last, what have you tried?

What are you going through? And to say, and they could then say, Oh, someone else is experiencing this. You know, I'm not crazy. Cause I hear that all the [00:22:34] time now. Um, so it's a really neat dynamic. And I look at, like, I don't know that I could be back in like a. Typical outpatient kind of setting now being in this environment where we can really make things like work for the person in front of us.

[00:22:47] Mark Kargela: It is so nice when it's not, you know, barriers of the insurance and CPT codes and different things like you said, billable units and all the, the hoop jumping that we often have to get through as, as physios, when we're in that kind of setting, uh, I'd love if you could share a little bit about what resources, be it on long COVID dot physio, um, be it, and maybe resources that clinicians for themselves or things they can use with their patients.

I know you have a, Bevy of resources there, but I'm wondering what you would recommend folks to who are, maybe they're seeing their first real significant, you know, post viral long COVID patient, and they're trying to get a grip on how to best manage.

[00:23:23] Daria Oller: Yeah. So I, I'll start by saying, I know this is very overwhelming. I guess somebody has never learned anything about this and you have this person in front of you who you're saying, I don't even know where to start. I recognize this is [00:23:34] very overwhelming. Um, but. Yes, long COVID physio, so long COVID physio.

We have so much great information. Um, we have a whole video series out that tackles some big topics and like short little really amazing animated videos. Um, almost two years ago, we had a virtual, um, conference and all of those sessions are up. It's two full days that are on YouTube. So it puts things into like nice little topics.

Um, and everything is evidence based too, which I think is really important because unfortunately, you know, we are going to come across non evidence based. dangerous information. So we're a great one. Um, what comes with long COVID commonly, um, dysautonomia, especially POTS. So dysautonomia international is really great to, to dive into the POTS and, uh, the postural orthostatic tachycardia syndrome.

Um, they're, they've been a wonderful resource. And then on the, uh, So myalgic encephalomyelitis, or chronic fatigue syndrome, that also is very, very common, unfortunately, with us. But we have ME Action is a really great one. There's PT's, OT's for ME CFS is another great one. They have been a [00:24:34] wealth of resource.

Let's say the ME community reached out to us, like, right off the bat, they saw this was going to happen. They're like, they saw this virus, like, we know this is unfortunately going to happen. So they have been great. And then last I'll say, um, Long COVID kids. So the pediatric population is a whole other thing. I feel very, I feel, um, I can't imagine going through this as a child. So they have a, so they're on Twitter, their websites, um, long COVID kids has been a great resource to, to really dive into the more pediatric specific end of it because they have some unique needs that obviously like we as adults are not going to have.

Um, and then, oh, actually, no, I had one more too on the, not science and necessarily, but, um, Ed Yong is a Pulitzer prize winning journalist and he has covered long COVID since June, 2020. He has some phenomenal pieces out. He used to write for the Atlantic. So his pieces, he gets into the science, but he gets into the personal side.

So people have read his things. Like, kind of, that's what resonated finally, to hear, like, the human side of it, [00:25:34] along with, like, whatever the current evidence is. So, if you read anything by Ed Yong on long COVID, it will touch you, and you will, like, I think it makes it, it makes it human, it makes people sort of understand, like, why it's so important that we care about this.

[00:25:46] Mark Kargela: Yeah, those types of people are so huge. Like to translate all this JAMA and important things, right. But always at levels that don't resonate with people because P values and confidence intervals and all the things, which. While important, they don't really, when you can connect it to a human story and a narrative where this is how that relates to this life that's been changed forever and all these different things that some folks who are dealing with this deal with, yeah, I definitely agree.

It's like those folks are, and we'll make sure we link that in the show notes for, for folks to check out. Um,

[00:26:18] Daria Oller: said JAMA, I'll say like, I never read nature before, like we are reading like we, as the clinicians and patients who don't have a background in science and healthcare are reading like these top medical journals, trying to make sense of this very complicated science. And I like to think of me, [00:26:34] like my dancer background as an artist, how do I make this click with people?

How do I make this be a little bit more real that it's not just these random numbers that I'm hearing about or mitochondria? Yeah. Reading about mitochondria is going to be very different than reading about somebody who can no longer work, even though it's all, you know, one in the same. So that's been, that's been important to hear us, to have us get our stories out, to include patients, because I think as clinicians and researchers, we tend to just listen to each other, and I did the study, I saw this patient, here's what we learned, but to actually bring the patients in, because like I said, they are the experts in whatever their lived experience is.

And I've been now really involved in like, the patient side of Twitter and to hear all of their stories, the not good stories and where we're really failing them, whether it's the healthcare system or on the individual like clinician, like one on one level. Um, it's so frustrating. And I understand on the clinician and where it's coming from, um, why certain things are the way they are, but to say, why aren't we listening to the patients?

Why are we telling them we know better when we have tons of [00:27:34] patients all going through very similar experiences. So that's been a really important thing too. I don't think I can stress enough to clinicians to include patients, whether it's the simple one on one, you know, when you're interacting in the clinic, whether it's inviting them to speak at conferences or being involved in patient spaces when you're invited has been like that.

I think I've learned more from than reading any like journal article.

[00:27:54] Mark Kargela: Yeah, that's a huge thing for us too. Like we, you know, there's a good chunk of our episodes that are patients. Cause I just, that story and I, one of the internal frustrations I have, although like we have conferences like the San Diego pain summit and others where patients are definitely becoming more of a forefront, but then, you know, we have other conferences, CSM and others getting better there.

I think there's some signs of movement in that direction, but it's a bunch of. academics and researchers and stuff, which again, they have their place. I'm not by any means, you know, trying to throw too much shade at them, but it needs to translate to real human stories and lives. And how does it kind of translate to make a difference?

I think. There's information floats around [00:28:34] conferences in these areas where Ivory towers and all this stuff. It just, it needs to go to the YouTubes. Like you guys have done an amazing job putting resources out there where patients who want to research it can get pretty deep and get a pretty good understanding of long COVID and related conditions if they, if they jump on long COVID dot physio.

So, so kudos to you for that. You, you've mentioned a little bit of this exertion tolerance narrative that floats out there with research. We, I, I could, I sensed your blood pressure raising a little bit with it. Are there other narratives out there that you feel like need a good thorough debunking because this is your time where we got a good, we got some ears that are probably listening and eyes that are watching, I'd love to hear narratives that you think, man, we need to think twice and maybe kind of like pull that out of the lexicon of social media.

[00:29:20] Daria Oller: that's a great question. Um, yeah. So yeah, one, the exertion preference, yes. Two, when we get into the psych side of it with like anxiety and depression with long COVID, other post viral illnesses, that's not what's driving this. Yes. [00:29:34] It is completely understandable. Somebody would have anxiety and or depression because this is devastating.

Like I'm not exaggerating. It destroys people's lives, but that's not the driver. And I think as us as PTs, you know, cause we have the biopsychosocial model, but there's the emphasis on the P and the S like, but, but there's a biological thing that is what's first. And yes, you can cherry pick and find some garbage studies that were going to say the psych is what's driving it.

Um, but that goes back to a clinician being comfortable and able to say they don't understand, but that's been so hard because then that pushes people into the like cognitive behavioral therapy end, which is not what's helping. It actually harms patients. And again, puts the blame on the patient. Um, like there are some words and phrases the patients we hear like the CBT and we're like, Oh, that lets us know what the person doesn't know when they're recommending that.

Um, so that's been hard. And I mentioned earlier, you know, like having those psych diagnoses as a primary thing in someone's medical history can actually be detrimental to like the path they're going to go down and the care that they're able to receive and the stigmas that they face, which is really frustrating.

Um, and even, [00:30:34] and this is coming from a family member who is a physician, but other people said it too, that it's people faking to get a disability. Um, people who are severely disabled by this can't get on disability, like, because there are tons of stories on social media, people are very open about sharing the process and all the difficulty, and when you have people with cognitive impairment from this, having to try to do a paperwork and everything, so it's the people who need disability can't even get on this, so it's, it is not people faking by any means, but again, it's much easier to, you know, to say that, um, like the same way you would see if somebody is like pain medication seeking or, you know, Something to that effect when it is somebody who needs help for whatever reason.

Those are the, like the kind of bigger ones, or it's just. That the awful narrative of people being lazy or trying to push the, like, we're catastrophizing. I'm like, no, we're not. We literally can't get up. There are points when I can't speak. And like that, that is not me catastrophizing. That is the reality of it.

So when we're saying like, no, I don't want to do this [00:31:34] exercise that you said I need to do. It's not me being fearful and needed some sort of great exposure. It is, it's trying to explain the physiology and what's going to happen if we go down that road. And some will, because they're trying to appease us.

And or show you, okay, I'm going to do it. Look, what's going to happen now. I told you now I'm worse. Um, so it's, it's trying to recognize in that part too, this is not the like fear avoidance, you know, it's not in that realm by any means. It is, it's, it's real. It's, I'm going to be worse if I do this. And it, it goes back to the exercise where it sounds fake, but it's not, those are the, those are probably the bigger ones that we come across right now.

Or even just on the pain end too, just. Assuming patients have a low pain tolerance or, you know, it's a little discomfort, you're fine. And again, to reference like the professional Olympic athletes, they understand what discomfort is. They go through pain. They've been through all kinds of ridiculous training to get to where they are.

So to now try to put them in that other box doesn't even, you know, make sense.

[00:32:32] Mark Kargela: Yeah, again, it goes [00:32:34] back to that whole self defense mechanism. I think some clinicians, and I think I, I definitely can look back at my career when I didn't understand persistent pain issues and some of these things where, you know, it's the symptom magnifier and all the, all the horrible things that we do.

And again, looking back, I definitely It was naive, you know, kind of just a lack of knowledge and it was a me issue, not a patient issue. It was just not being able to understand that unique person in front of me. You've already shared a ton of good tips for clinicians, but I'm wondering if you could like, say what are the major, like, tips you would say for clinicians who are like, and like, things you need to, uh, like if we can kind of top three things or whatever you think are like, what are the characteristics or things you need to be bringing to a clinical to better be able to kind of meet these people where they're at, who are like yourself, who are dealing with some of these tough diagnoses and best help them move forward.

What would you kind of recommend to some clinicians out there?

[00:33:26] Daria Oller: I think the biggest thing is probably listening and really listening, not just, oh yeah, you've said the symptom, but taking in what [00:33:34] that means. Cause I, I should add that not everyone's going to know they have long COVID. People might be coming to you for my hip hurt. Like I've had hip pain, but it's tied into being in a flare up.

I know that, but not everybody would. So it's also having to recognize when people are, I'll give a quick example. Somebody, one of the construction workers asked me about knee pain. He had a history of knee surgeries and I can't remember what it was. He said something that I went, wait, what? And it turns out he has long COVID.

And it's very quiet about this for obvious reasons. And I said, oh no, disregard everything I just told you. That was very orthopedic based. I'm like, oh no, we need to go in this other direction. But it's being able to pick up on certain things. And some of it just comes with, with like reps and hearing lots of stories, whether it's with, with patients or on your own, you know, seeking out information to recognize when they're saying things that like the, whether it's formal exercise or I just shower or brush my teeth, ADL kind of stuff.

And I'm done. Like I cannot get up. People describe feeling poisoned, which sounds like an exaggeration, but it's not, it's hearing those things [00:34:34] and saying something's not right. It's being able to recognize that. I know we're not expected to fix them obviously, but That's weird. That's part of the biggest thing is like recognizing that that doesn't sound like what I think it should.

And when people are talking about, um, cause dysautonomia is so common with feeling their heart racing, their heart pounding, not trying to push that onto like a psychological thing and teaching people about if they wearables, how to use the wearables are not perfect cause they're meant for fitness, not illness for the most part.

Um, but things like that, if we can start trying to find some like objective data and yeah, when you feel this and we see your heart rates. And you're just sitting like I am right now, starting to try to put those little pieces together. But you have, the really big thing is having to recognize our energy is so limited, like at the cellular level.

So whatever you are asking a patient, whether it's literally asking a question, um, or asking them to do something, it is pulling from that energy. So you might only have a couple things that you can ask them. You might only be able to have them try one thing at [00:35:34] home. You might only get two history questions before they're cognitively done.

Excuse my dog Rossie. So it's recognizing that too, that you might come in with this whole inventory of things you want to do. And oh, I want to do a six minute walk and a sit and stand and whatever. It's not going to happen. So you have to really prioritize what's going to be the most important and you might come in with a game plan and realize, Oh, no, this sounds like something totally different and be willing and able to change that quickly and say, All right, I don't want to make them worse.

That is actually probably the biggest thing. Don't make them worse. And you have to recognize when people are starting to melt when they're starting to crash. And be able to adapt and change to that really quickly and just know this is not going to be a nice little flow chart. This is not going to be, alright, we're going to be here today and get a little better, a little better, a little better.

This is going to be all over the place and just working with the person in front of you. And even if you have the option, um, if virtual things are available, because not just physically getting to a clinic. is going to be too taxing for somebody. Whether they are driving, which is very cognitively demanding, somebody's taking them, the [00:36:34] walking from the parking lot inside, stuff that we take for granted might be way too much.

So if that means switching to a phone call or video or something like that, as little check ins as opposed to hour long sessions, that might be the best option.

[00:36:46] Mark Kargela: Do you think we should have like a formal screening process to know if somebody has had COVID? Yeah, I've, I've just assumed, but I wanted to make sure we explicitly put that out there to like, that should be something in our. medical history that there were very clearly identifying that if somebody's had that, because I, I think about that now and I see some of these kind of random and I, and probably looking back some cases that I probably could have dug a little deeper to just even recently where like some random muscular skeletal pains or things that were just kind of flaring, um, that now I think back, you know, is this maybe, was that maybe a little bit of a sign of long COVID and having some questions to kind of see how people are beyond just obviously the musculoskeletal, I think as PTs, we tend to.

You know, not see the big picture, but I think in these conditions, obviously we need to be taken into account, you know, the whole person, multi-systemic, [00:37:34] you know, contributions to things. You also,

[00:37:36] Daria Oller: harder to just because people are getting reinfected. Testing is not as readily available. So for financial reasons, someone might not go get tested again. Um, so we're not always going to have a solid history. Like, oh, it was just that summer flu we get every year. But obviously it's not a thing.

Um, So it's also recognizing that someone's not going to come in and say, I had COVID. They might not have known, or they might not want to say it, which is fine. You know, and it's just, actually just DM me recently, a clinician whose wife is a PT, and she was seeing some, a teenager in clinic that like, something was kind of funny.

And I think I want to say had a negative COVID test, but it's because that doesn't mean anything at this point. Um, and like, could be another virus, but just recognizing that too. It's not going to be like, I had this, um, and you're going to have to, you know, on your own sort of start putting those like little pieces together and say, all right, let me at least. If they have a COVID history, most people probably do at this point, see if they have a reinfection history because the risk of long COVID increases with each infection, unfortunately, [00:38:34] um, because somebody was fine the first fine, the first time doesn't mean that they'll be okay later on and then start going from there.

[00:38:41] Mark Kargela: I love the dog chiming in. He is or she?

[00:38:45] Daria Oller: she's been great.

[00:38:46] Mark Kargela: Yeah.

[00:38:46] Daria Oller: I will say with long COVID Roxy and I were in the Washington Post like a year and a half ago.

[00:38:52] Mark Kargela: nice, nice. Our furry friends are our best support when we're dealing with, when we're dealing with some of these trials and tribulations for sure. I think you also stated some, some great points that younger clinicians I think can definitely take notes from is this will not be That nice neat flowchart or this A plus B equals C You need to be flexible and like you said things can come in the clinic One day and be like a complete 180 crash the next day and you need to be able to nimble and agile as a clinician to be able to adapt to where that person is that day and kind of meet them where they're at.

So thank you for for sharing any of that. Um, any other? Yeah, yeah, it is. Because I think we're so trained not that way, right? Like it's just in school or [00:39:34] train like yeah, You identify the impairment, you fix the impairment or the functional limitation and the, the health is restored and the person's yet when the clinic hits, you're like, Oh my God, especially with these type of very complex conditions.

It is anything but that. I mean, you, you, you salivate for the occasional, just basic ankle sprain with, with like nothing complex going on around it. I mean, there's always unique human things around it, but sometimes things are pretty like they were taught to us in university. But, you know, it, it, not often, especially if you're working in some complex.

Um, situations. I'm wondering if you have any other parting thoughts or things you would kind of wish if you could kind of wave your wand of like, one, do we do we get this enough to students so they can get out in the clinic and have somewhat of a footing to to kind of navigate these cases because they will happen.

If you're going on clinicals, some of you folks that are listening or you're you're early in your career. I guarantee you that with the amount of folks that have dealt with COVID. And these folks will, and I think you have [00:40:34] an opportunity to recognize these people and hopefully change your trajectory in a positive way.

But what would you recommend for, for folks who are, or maybe some parting thoughts to kind of motivate some folks to get better equipped?

[00:40:45] Daria Oller: Sound like a weird example, but I was thinking of this earlier today because I had tweeted about a while ago, like I've gotten a bunch of tattoos in the past year because they make me feel nice. I don't have a lot of control over what's going on, but they make me feel better. And someone, a PT actually tweeted back about like basically go to therapy, but with that, I was reflecting on like.

Part of why is the experience, not just the art, but I go into the tattoo shop in a specific place they go and they work with me. I can come in with an idea and they'll say, here's why it doesn't work. Here's why it works. But what, like going through that aspect, where are we going to put it? They are constantly checking in.

Are you okay? Do you need a break? They have drinks, they have stress balls, they like, it is such an incredible experience as opposed to like the old school tattoo shop and like grunges playing and it's [00:41:34] like very macho environment. I was like, we as PTs can learn so much from them. There's one shop I go to that is, it's queer women owned.

They only will see women and queer people. And it's a very safe space. And I was like, I wish this got out to PTs because it is, they cater to a specific clientele, you know, so it's not that I have to fit them, you know, they, they know I'm coming in because they, they meet my needs. Um, and that doesn't happen a lot in PT for so many reasons.

Um, and it was just like an interesting, I hadn't realized at first as part of why I enjoy going, it's the whole experience, not just the, you know, like the end product, which they're good at too. Kind of like a weird example. And even on the pain end, um, It's interesting to think of tattoo artists know a lot about pain, and I feel like we don't utilize them as a resource because they see pain all the time in this interesting context.

And I had a few times now I'd set my Garmin as like a workout to get better heart rate data and my heart rates like shown in the low sixties where you would think it should be skyrocketing because some of this is like very painful, but it was just been like such interesting [00:42:34] perspective where I'm going in like, wow, this is a wonderful experience.

Also anticipating it might be a lot on the long COVID end, but actually coming out of it, feeling amazing. Because it's, it's the whole context of everything. Um, it's a random example. But I try to like, you know, pulling from other things now, that like, where am I As, like, holistically, what am I learning about long COVID?

Not just all the papers and things that I'm reading, but my experience in life now is so different. How I approach everything, seeing, like, accessibility when I go places. Like, when you said the San Diego Paint Summit, when I flew out there a couple years ago, I'm in the airport going, I need to sit down and there's nowhere to sit.

I can't make the walk from, you know, to get my luggage. What am I supposed to do? I sit on the floor, but not everybody can do that. And it's just, yeah, it's kind of looking at the whole big picture now, that not just the, in the moment somebody's in front of you, yes, obviously pay attention to them, but. Who is that person for the other, you know, 23 hours a day or whatever it is, how are they interacting with their environment?

Is it, or what we're having them do from an exercise standpoint? Maybe, yeah, like there was a case report that got published. I forget what journal [00:43:34] the person's like six minute walk improved. No one cares if you have long COVID, you do not care if your six minute walk got better insurance. My, we don't care what, what did they look like after that?

What was the next few days like for that? Were they able to go to work or take care of families or, you know, do whatever they have to do? So that's, that's looking at that entire whole person now, which isn't always easy. Cause yeah, especially early on, you have to learn certain things. You have to learn your anatomy.

You have to learn all your tests and all that stuff. It's so important, but then it's still a human that's in front of you. It is still a person that we have to help. It's still a person that has to go on like through the rest of their life, regardless of what we're doing with them. That's probably been like the, one of the bigger lessons that I've learned.

And then also say like, listen to other people. Like I've learned. Part of this I already did as a PT and an AT, you know, learning from multiple professions, but to get outside our, whether it's our specialty or our profession, learn from other people, because OTs are amazing at this. They are so good at the pacing and the energy conservation and adapting to things.

And I've learned [00:44:34] tons from them, even down to just Get a stool for the shower. Just do it. You know, it sounds so simple, but like when you're young, you don't want to do that, but they can explain why and how that's going to help you from like a physiologic standpoint, but to learn from the other professions and the other specialties, and to maybe take some time to dive into the really science heavy journals, listen to the patients.

Don't dismiss them because they don't have the degree that we have. Um, this has all been like a really wild learning experience for me.

[00:45:01] Mark Kargela: mean, those are awesome tips. I think I can't, couldn't echo those, the whole person, right? You're, you're right. We sometimes see people for 30 minutes out of 23 and a half hours, and there are Life of a day and there's a lot that goes on around that and you know how that six minute six minutes of their life looks during that dang walk may make for a 23 and a half hours of and maybe longer multiple days of you know Really struggling because we have to gather our data And we don't do it in that person centered mode of application of maybe I need to shelf that [00:45:34] six minute walk today because that person is in nowhere of a place where that's going to be a good test.

But this is spoken from somebody who's probably put people in that test, you know, that has flared his share of definite patients with chronic fatigue when I just tried to push folks with that into exercise, thinking you just need to gain tolerance and you're going to be good to go. So can't thank you enough so much for your time tonight.

It's, it's been great. Um, we'll definitely link a lot of the resources that Derriott kind of mentioned in the show notes. Um, so thank you so much for the work you're doing. And those of you who haven't followed her on social media, follow her on social media on, we have her, her ex, uh, title on tap physio.

Uh, make sure you, you follow her. She's always got some good stuff on that. She's, she's sharing with the world to kind of help better help folks who are dealing with some of these challenging diagnosis. So thank you, Daria.

[00:46:20] Daria Oller: Oh, I'll add one more quick thing. If anybody listening, PT, OT, anything, students, if unfortunately you have long COVID, um, we as Long COVID Physio, we have a private peer support group on Facebook, so you have to be within [00:46:34] healthcare. And have one code to be in it. That's very specific. So it is a very safe space.

Um, and it's been on one and it's sad to see, you know, as more people get added because we're over 500 people now, um, but that you have people you can bounce ideas off of. You have us from the first waver. We've been there. We can tell you from a historical standpoint, what's going on and sort of what to anticipate and all of that.

And it's great, too, because. You know, we're all in health care, so we have the science background. And that's how many of us are now getting involved. If it's advocacy work or doing research or, you know, anything like that. Um, so if you unfortunately have long COVID, please feel free to join our group on Facebook.

Um, we are a really great resource.

[00:47:08] Mark Kargela: Yeah, I'm gonna have Darius send me all these links to these, these groups and these resources. Cause she's shared a ton of great stuff tonight. So again, thank you so much for your time and thank you for what you're doing. Daria.

[00:47:18] Daria Oller: Oh, thank you.

[00:47:19] Mark Kargela: For those of you listening, we'd love to have you subscribe on the, whatever you're listening to your podcast, or if you're on YouTube, we'd love if you could subscribe there so we can share more of this information.

If you're knowing somebody, a clinician who's dealing with patients who are dealing with this, or, you know, people in your family, friends or [00:47:34] circle of people, you know, that are dealing with long COVID share this episode out so they can better get some help and hopefully some guidance to help change the trajectory of what they're dealing with.

But we'll leave it there at this week. You guys have a great week. We'll talk to you next week.