Long COVID with Sarah Maurer

Addi: 0:00

Hey everybody. This is Addison Berry and you're listening to the Osio Labs podcast, the show that explores the question,"how do we create sustainable businesses that care for people and make the world a better place?" On today's episode, I'm joined by Sarah Maurer, certified breath worker, hypnotist, and integrative life coach. This is episode number five about long covid and how that affects people's lives, especially when it comes to work. What is it? What does it do? What do businesses need to be aware of to help their long Covid employees? That's why we have Sarah on this call. So thanks for joining.You, you are certainly an expert. Why don't you just give a little bit of context for, for why you are an expert on this or what, why I chose you for this call.

Sarah: 0:52

Absolutely. Thanks Addi. Yeah, so I am a person that has been, I, I hate to say recovered. I like the word recovering a little bit better. I. From long Covid for about 10 months. I've come a long way and I also really understand like what this, what it's like to walk this path, how it can impact your work life, like all areas of your life, work life. Social life, finances, self concept, general enjoyment of life. And it's been interesting for me because I'm also, um a, a helping professional. I was a counselor for many years and. Currently working as a life coach, certified as a hypnotist, and I think one of the most interesting as aspects, also certified as a breath worker, so really interested in the autonomic nervous system, things like emotional management and regulation. So it's been so fascinating to be able to study how the long covid impacts that like inside myself, so, oh, I'm sure we'll talk about more about that.

Addi: 1:58

right. You've got like, you've got like real like evidence right here, right in front of you, like right in you.

Sarah: 2:05

Yeah. It's so interesting cause yeah, there's so little as we'll talk about research about this, like it's very poorly understood. So I kind of feel like I am like on the forefront of research as a person that has it like kind of experimenting and I bet a lot of people with it feel that way.

Addi: 2:23

Yeah. Okay. Well let's, let's dig into this and just for starters, let's define what long Covid is, because I think everybody hears this term. Some people are. Or just overhearing it cuz it's, you know, COVID. So we're done. And if it's not affecting our lives, it's just like a thing and I don't care or I don't know, or whatever. So let's just define what is long Covid.

Sarah: 2:49

Sure, and I'm just gonna speak from the patient's point of view. I'm not a doctor or an researcher, an epidemiologist obviously, but I. And part of the problem is that there is so little definition of what it actually is. As you'll see as, as soon as I start like talking about what we think it might be it's hard to be taken seriously as someone who has this condition. So many people, like I literally went out to dinner with a friend I hadn't seen for a while last night, and I was like, oh yeah, I've been dealing with long covid, and she's like, Well, how do you know you have that? And I'm like, oh, wrong question. Right?

Addi: 3:23

All right.

Sarah: 3:24

But um, yeah, but I mean, in some ways, like my answer to her was, I don't know, because there really is no diagnostic criteria, basically, um, kind of the layman's definition, it's. Persistent COVID symptoms or new symptoms that appear beyond four weeks after first having an infection. Over 200 symptoms have been described, attributed to this condition. I know, right? So some of the common ones. Fatigue, anomic dysfunction, brain fog. Pastoral orthostatic tachycardia syndrome, which just means like when you go from sitting to standing or lying to standing, your body just goes haywire. You're dizzy, your heart is racing. People have neuropsychiatric symptoms, anxiety, depression, other mental illness. A lot of people are exercise intolerance. Uh, that's been like the hardest symptom for me. I used to be an ultra runner and I, um am about to run like a half marathon after 10 months, which is so exciting. But it's been a long time like getting back. I wasn't able to exercise at all for a long time, which was such a mental health thing. But anyway, yeah, common symptoms, headaches. Sleep disturbances, gut issues. Yeah, and there's the lack of clear definition, as I'm sure we'll talk about, makes it really hard to be taken seriously. It makes it hard to get diagnosed in the medical community and it makes it hard, especially if you're very affected, to get accommodations, disability benefits at work. So, and it's such a huge impact because yeah, 22% of people with this condition, according to some studies, cannot work at all about half. At some point, at least reduce their workload and we're talking probably 10 to 30% of people who have had covid have some long covid symptoms. So it's a huge thing for work and companies and economic impacts.

Addi: 5:21

Wow. Yeah. That list of symptoms is so, and this. Relates and sort of takes me, I guess, into my next question, which is how does this relate to like other chronic illnesses? Cuz there are, there's, you know, there are a lot of chronic illnesses out there that are long-term things and there are lots of them that are somewhat ill-defined. Um, and so I'm curious, like, we're gonna, we're talking specifically about long covid here, but. I guess like how much of this conversation do you think would apply broadly to Ill-defined chronic illness?

Sarah: 6:01

Like hugely,

Addi: 6:03

Yeah.

Sarah: 6:03

and I mean in, in a very literal way. On one level, like a lot of people with long covid may meet the diagnostic criteria for other chronic illnesses. Things like, I always say this wrong, like my logic. My Logic encephalopathy, which is chronic fatigue syndrome, kind of the new name for it. Um, another one a lot of people meet the diagnosis for is, oh gosh, mast cell Activation syndrome, which is when your body can't process histamine. I'm like, oh my gosh. Thank goodness I got that. I, I've been like thinking about how I'm gonna say that all day cuz I always forget. Yeah, and, and yes, like even if in, in things like depression, anxiety, obviously, but I. It really is true that basically we're just dealing with someone who maybe looks well, their illness may be invisible, but they still feel sick every day. They still live with us every day. They still do not feel well every day and. I think that, especially for me, I even think back to friends that were maybe dealing with chronic illness symptoms before I had a chronic illness. It's so hard to really appreciate what that's like, how that feels, how that affects you, how it's, you feel so unacknowledged because it is hard for other people to see, and even if they can see it, unless they've gone through something similar, it's. So hard to understand. So I would say 100 per almost everything we're gonna talk about today. If you are someone that is dealing with a mysterious illness or undiagnosed illness, undiagnosed, like complex of symptoms, it's all true. It's all, all of it applies, I really think. So there's a really great quote about, um, how to have a. A, a mysterious illness is to be systematically unwitnessed that I've heard in the long covid context. But yeah, it was from someone that had chronic fatigue syndrome. I believe so, yeah.

Addi: 8:05

Yeah. It's interesting cuz I, and I haven't actually looked into this too much, but I just learned this past weekend that here in Denmark there's a new, there's a program where. They have like lanyards or um, like, uh, bands, uh, that people can wear that are green and have like flowers on them. And what it, and it's mostly especially used for children, but it's to signify that you have an invisible disability so that, so that people have some visual clue, that you're, you might not be operating at, at what other people would perceive as a hundred percent, you know? And, and to be aware of it., so. And that like just talking about that visibility thing and that witnessing, right, it's just like, just because people on the outside look a certain way or even behave and act in a certain way and you just have these assumptions about them, it's like you, you don't know what they're dealing with and what's going on and how hard that is. And then on top of it being ignored, right?

Sarah: 9:02

Yeah. Oh my gosh. My heart just like really connects to that. I'm, I think my inner child wants to wear the Armand.

Addi: 9:08

totally. Totally. Oh my gosh. Yeah. So I mean, I don't know how much you wanna dig into how much long Covid has affected you personally, just as sort of an example, because there's this huge range of symptoms. There's like all of these different ways that it impacts people's lives. And so I'm just, but again, only as much as you wanna actually share. Like how has it impacted you and I guess like what has been frustrating for you? I mean, I already hear like just not being seen for, for, for where you are is, is massive, but are there other frustrations? I'm sure right.

Sarah: 9:52

Yeah. So yeah, I'll just speak from my experience and just keeping in mind like this is a disease that shows up like so many different ways. So my experience is typical in some ways and very atypical in other ways. I'm really lucky that I'm kind of on the milder end. I've al I've never really, other than I think even in my acute covid illness, I pretty much worked right through it. Um, yeah, because again, my symptoms were often as they. Are with those conditions. The initial symptoms were not severe. Um, yeah, it was a pretty mild illness. And then, yeah, like a few months later is when it got really hard. I'm very lucky also in the sense that I have two jobs and they're both very flexible in, in addition to my. My practice where I'm working with people as a helping professional change worker. I'm also working ha, I still have my halftime corporate job that I've had for a long time. So I'm working in marketing and I am on a flex schedule, which is incredibly nice. Like I have a pretty understanding and laid back boss that ha who has been amazing. But yeah, like one thing I noticed, and like through most of my illness as I was working is my productive hours per day were much less and. I usually could count like before on having like 10 hours a day to like get all the household chores done, get all my work done at both jobs, get, you know, socializing, done, like kind of like enc, like all the parts of life done. And I'd say like during like the worst part of my illness, I was probably at about five and that was like really hard to swallow. And then for a while I was probably about, Seven for that was probably the longest phase and I've just like in the past, like month or two, pretty close to back to 10. So it really has forced me and I think this is such a good lesson for individuals, for businesses to just get very lean and focus on what's really important. Like things that used to feel very urgent, like cleaning my house or like looking really nice. Before I went out or even like hanging out with certain people, which sounds terrible. It surely like forced me to go into my heart and be like, what,

Addi: 12:05

Hmm.

Sarah: 12:06

important things? Because I only have time for those, which has been in a way like kind of an amazing and life-changing and growing thing that I hope I continue as I feel better. And it's also changed the nature and direction of my work as a change worker. Hypnotist coach in a really good way. I feel like I'm really like trusting myself rather than, oh my gosh, I have to go into a session very prepared and think about it a lot ahead of time, which I don't have time to do. So it's really been like, oh my gosh, I have to go in, I have to. To let it flow. I have to really listen to what the client is telling me and follow their lead, which has been amazing. Like I think it's made me such a better coach. I kind of, the joke is that I kind of wing a lot of stuff, but it really has like in a lot of ways than a blessing and I actually ended up getting certified in a kind of a modality that was a lot more client-centered, that it was like allowing us to both. Flow and just kind of take the session where it went. So that's been really kind of some of the good things.

Addi: 13:14

Awesome. Yeah, so there's two things I wanna point out from that. One is, cuz it was interesting when you were just like, you know that my number of productive hours, like my mi my mind is just going to like, all right, like work hours, but like productive hours is like your whole life. You, you're trying to do things right. And so like when looking at someone's. Box of energy, right? It, it's not just work that that's not the only thing that is taking someone's energy. And I feel like from a business perspective, people tend to only think of the box of when you come into the office and leave the office

Sarah: 13:53

Yeah.

Addi: 13:53

and, and it's just like there's a, a lot of other things, I mean, regardless of, uh, illness. You know, there's just a lot of life that takes up a lot of productive energy and time and Yeah. If you've already spent six hours of your day just trying to live, how much time do you think you have left for, for work? And then that brings you to that prioritization thing, right? You are prioritizing all of the things that need to happen in a given day or a given week. You know, work is one of those things. It's not the only thing being prioritized, but then within that work bucket, being really aware of what is the priority there, because maybe not all of those things can be prioritized either. And this is just generally true.

Sarah: 14:45

Yeah.

Addi: 14:45

It's especially true with illness, but it's also just generally true. Like people just only have so much that they can be doing and it changes. You know, it flows, it, it moves. It's not like everybody has the exact same set hours of product productive energy within them every single day that they wake up. Like that's just not realistic. So anyway, that, I think that's like a very good point for people to just sort of contemplate like sit back and think about when you're, when you're trying to put context to, to all of this. and then the other thing I just wanna mention quickly, As an aside, which is that, Sarah is my coach so I can validate that her coaching method

Sarah: 15:31

ever.

Addi: 15:32

is working really, really well. Um, cuz we've had some.

Sarah: 15:37

seen the whole evolution too. Like you've been with me while I was going from kind of a more cognitive coach to a hypnotist. So I don't know how that's been for you, but

Addi: 15:46

Yeah. No, but it's been great because I do feel like things really, like we've just had, we've been able to go into some really interesting places and some really interesting conversations. Um, And it's been hugely helpful to me. So anyway, that's just an aside, but that, like, that positive change that has sort of been pushed because of this happening, right? That it is having a beneficial impact, at least for me personally. So I'll

Sarah: 16:12

Yeah. Oh, I'm so happy to hear that. It really is like a kind of a microcosm of life, like held up for, for one, it's interesting when you have a chronic illness. Illness, I'm like, yeah, that energy box is very visible.

Addi: 16:24

Right, right. It's got very distinct edges.

Sarah: 16:28

Yes.

Addi: 16:31

so, we've talked a little bit just sort of about like you, how it's impacted you at work. You've been in a really good situation. And then I guess like carrying on from that, that context of a workday for a person. Is a limited box of, of priorities that are possible and stuff like that. And so, of course, like, you know, businesses and managers and all this can, can be aware of these things, but like what, and it like, there are so many symptoms, like you said, and it impacts people in so many different ways. Like, but are there any general, I'm a business owner or I'm a manager and I want to be better at this. I wanna, I even understand this better. Like what do I do? How do I. How do I make it more better?

Sarah: 17:16

Yeah, such a good question. I think one of the most important things, and maybe the first thing a great place to start is we really just need to think about, I. How there's, there's kind of an idea out there that people with disabilities, people with chronic illnesses can't work or they can't work as much. And I, I shared some statistics at the beginning. A lot of them are not working as much or working at all, but some of that may have to do with environments at work being rigid and just not being really built for them. So I think we really have. Too as a society, because this is just going to impact us so much for years,

Addi: 17:55

not going away. So.

Sarah: 17:56

Yeah. This is not, yeah. Even though the covid emergency is over, in some places it's, it's gonna be with us for a long time. We really need to think about, yeah, like how can we create environments where everyone can work and where people with like diverse energy levels can be. In a place where they're able to contribute, what they can contribute. So I recommend for anyone who's really interested in this, I heard an excellent podcast. I think I dropped it in our show notes, Addi, there's a company called Visible and the, the creator is a man with long Covid who was very frustrated as many of us are, that there's really nothing, no devices, no like metrics, nothing quantifiable to help us. Like kind of monitor our energy levels so that we can be more predictive about how much we should be doing, when we should be doing things, when we should be resting. So he actually created a company that's creating a wearable, it has a free app called Visible that you can download and use. It has a lot of pacing tools to help you manage energy levels. But the interesting thing about this company, it's a. Startup and like half of their workers are actually people with long covid. So he talks on that podcast about a little bit about their company and their company culture and how he's, the schedules are incredibly flexible. People are all on flex time. They can work in the middle of the night if they want. some of the things they use to really, accommodate that they use asynchronous communication. So there are really no meetings. there's just things like maybe Slack or teams or, I'm not sure exactly what they use, but just different channels so that people can communicate their work when they're ready to communicate. And then whenever the person that's ready to receive is ready to receive it, they can go in there and pick it up. And they've actually been able to move this along like, So fast with a company culture that is completely set up for just people that may be working at odd times and may not be able to come to, they have no meetings, which I thought was amazing. And not seeing that meetings are always bad, but, um, maybe really thinking about how that affects people, that if you're having like a meeting every Monday at eight o'clock, just to all touch base, how does that affect the person that has A chronic illness that may have difficulty sleeping and just may feel terrible and not very alert in the morning, or not be able to get up at all. So yeah, some ideas there. I really like encourage companies, managers, especially if you're in a position to think about benefits, creative ways to help employees. This is an expensive disease, like I am not even very affected, but a lot of. This is a whole other conversation. We could probably have like a lot of my treatment right now, the treatment that is actually working is happening kind of outside the traditional medical system. I actually go to a doctor online who's in a different state than me. All she does is long covid and she has a concierge practice, so I pay her out of pocket, and then things she prescribes to me are not covered by my insurance, and I mean, they're not like, Crazy expensive, but it can get expensive depending on what kind of treatments you want to try as a person with long covid with chronic illness. So yeah, just thinking about if there are financially creative ways that you can support your employees, whether that's a grant, a fund, a stipend, something, just to help out with it and just also knowing that they may be financially stressed at this time. Yeah. And then I think the other two things just really are kind of cultural things. Um, long covid patients are, like we said, are very invisible. They're very talked over. I get a lot of people asking me, how do you know you have this? I actually never tested positive for Covid, even though I was. Exposed to it,, pretty obviously, but I, for whatever reason, my test, the home test never came up positive. And then a doctor actually said to me like, you really should go and try to get the p C R and come up positive because if you have long covid later, it's going to like, make it easier to be taken seriously by medicine, by work. So, 12 days later I got the P C R, and of course it's negative, but about 15% of people that, present having this condition at never actually tested positive. That's pretty common. So yeah, so I think just as a culture, just like being aware of that, being aware, even people who. To test positive, have a hard time being taken seriously. So I think the way you do that is to really treat, that person as the expert in their own condition. This is true of all chronic illnesses. I think it's so true. So instead of being like, how do you, how do you know you have that? Or are you sure? Or, you know, like, or giving like advice,

Addi: 22:46

Or I heard about this other person who had it, and you don't sound anything like that.

Sarah: 22:53

Not tired all the time, like Suzie.

Addi: 22:55

right. Ugh. Yeah. Yeah.

Sarah: 22:57

gosh. Yeah, treat them like the expert ask questions. They generally, I, I found in this community, like we all have to take responsibility for educating ourselves cuz there's not a lot out there. So they might be able to tell you quite a bit. And then just focus on making the invisible visible, like as a company, um, do you have like a community, a place, a safe space for people with chronic illness? Chronic illness is kind of a nice word that in, uh, like we said, that includes like the big umbrella of people that maybe are dealing with something that is limiting their function, limiting their energy, but they're not exactly sure what it is. They're undiagnosed. So, yeah, just creating safe spaces for that. Talking about it as a company, we talked about there's a lot of people with long covid. There's probably two in the United States alone where I live, there's probably two to 3 million people with chronic fatigue syndrome. It's hugely under di. Most of them are not diagnosed. But they know that they're tired. They know that they're having a hard time. And if you think about the whole world, how many people that is. So yeah, those are some of my thoughts. Addi, like,

Addi: 24:06

awesome. Yeah. Well, you know, I, the thing is like when I, so when I'm listening to this and I'm like, yes, yes, these things all make sense. This is how businesses should operate anyway. Like the, it shouldn't just be for chronic illness, right? Because it just, and it, it makes me think of, just when reading or talking and listening to people, who are disabled in any way, and they're like, when we make changes to accommodate people regardless of the reason for their quote unquote disability or their illness or whatever, it, it works for everybody. Like we, we are, we are making a more accommodating, a more sustainable, life worthy environment for everyone when we accommodate. But what often happens is people are like, oh, you need a special accommodation? Okay, well let's see what we can do.

Sarah: 25:05

sorry,

Addi: 25:07

Right? And.

Sarah: 25:08

this very strongly.

Addi: 25:09

Yeah. And so it's like, it's super frustrating to me when, when, you know, you get that pushback for special accommodations and I'm just like, what? But, but human, human being like, this is, this is, this is what we should be thinking about and trying to do all the time. and so anything that a company would do that could help accommodate. People specifically with chronic illnesses or long covid is going to benefit all of all of the, the employees, the entire company. and as you were saying, like you know, you have these people with chronic illnesses who are not working or not working full-time, and that is for sure. Valid from like their condition that just not gonna happen. But there's also a percentage and an element of that that is simply they cannot perform and work within the conditions that they are expected to. And that's a really different level of not productive.

Sarah: 26:11

And I think that's a big group actually. It's a large percentage of people with disabilities, chronic conditions.

Addi: 26:18

Totally. So if we would just be aware of these things, lean into these and figure this out. Like you, you would end up with, you know, I mean if you wanna look at it from like, you know, big old capitalist corporate mindset, we would end up with a more productive society. Right. But like, you would also just end up with a happier, healthier people, like

Sarah: 26:37

right.

Addi: 26:38

just.

Sarah: 26:39

Let's accommodate the humanness.

Addi: 26:42

Yeah, so, right. I think there's like this, this idea of like, what can I do for people with chronic illness? It's like, you know, treat'em like a human being. Like, let's, let's, let's start there, work our way out. But I, I'm also really glad, like that you brought up things that I think a lot of people don't think of or don't wanna talk about, like financial stress. Like, oh, that's something for insurance to figure out or for people's, their families to figure out. Like that's not a thing that I, as a manager should think about or be aware of, that they might be financially stressed right now. But I mean, again, this is this whole big picture and, and again, speaking of like, you know, chronic illness, people's productivity and making accommodation, I mean, there's, you know, disabilities, there's illnesses, but there are things like, Grief, it

Sarah: 27:35

Yeah.

Addi: 27:36

crippling. Like people have so many things happening in their lives and so I just, you know, like all of these things, all of this affects everybody at some point in their life, which is why this is something we need to just generally address as companies instead of trying to frame it as a special case. And do I need to justify this special case or not? It's like, well, all humans at some point probably experience something that diminishes their quote unquote productivity for the machine. So how about we think about that from a broader picture, you know, a broader perspective. So that's, that's what I sort of take away from all of this is

Sarah: 28:28

like, amen. It's so interesting as you're speaking, and if this is a tangent, feel free to edit it out, but one thing that comes up to me as I'm hearing you talk about like humans, and let's accommodate the humanness and the individual differences and the individual experiences that just kind of move through us as we're just walking this path of being human. And I think of women like women are. Cycle like our,

Addi: 28:57

Oh yeah.

Sarah: 28:57

actually have a period, like every day literally is a different internal environment for us. Whereas men, like I, the way I've always heard it explained, men have a cycle, but it all happens in 24 hours, whereas ours happens in 28 days. And like a lot of work environments are really like kinda set up to every day is the same because for men that set it up, it was, but for women, That maybe have a couple days a month where they're just very like maybe at work just struggling so hard to pay attention and they're in pain and they're brain fogged and they're just not productive. like I've, some countries are actually starting to give, leave or for like women, whenever you're at that point in your cycle, and I just love that. So I don't know, it just reminded me

Addi: 29:43

Totally, totally related. And actually this is this is a bigger tangent and we're not gonna go there now, but on a future podcast, and you and I have also talked about this. The whole just like cycles, cycles of being a human being. Like there's so many cycles. There's seasonal cycles, there's physical cycles, there's you know, family life change cycles. There's so much happening and we have five days a week, 52 weeks out of the year. It's the same all the time. And we expect this factory machine existence. In a, in a world that doesn't look anything like that.

Sarah: 30:22

Right.

Addi: 30:24

I have, I have a whole podcast

Sarah: 30:26

Oh my gosh. I can't wait to hear it. Addi, make, please make that one. Yeah. I always tell people like we are nature and nature is cycles. The tides go in and out and we are the same.

Addi: 30:39

it's, it's all moving all the time for sure. Well, we should probably wrap this one up. cuz I would just, you and I, we can just keep jawing on for hours. But, but thank you so much for, for coming and talking about this. This is huge and I think this is, yeah, this is such a, such a great topic because I think people really need to just be aware, like this is real. And, how it really affects people and it's not going away anytime soon. And so like, let's talk about it instead of pretending it doesn't exist. So thank you.

Sarah: 31:20

Thank you for talking about it. Like I think this is a beautiful like step in that direction to have it on your podcast.

Addi: 31:27

Well, I will, I'll be talking to you in the future so we can say goodbye for now for the podcast.

Sarah: 31:35

Yes, I see you soon.

Addi: 31:39

Hey, so thanks for listening and let us know if you have questions, comments, or suggestions for what you'd like to hear more about. You can find all of the various ways to reach us on our website@osiolabs.com. That's O S I O L A B S.com. Also, please make sure to subscribe to the podcast on your podcast provider of choice. We'll catch you on the next episode.