The Liz Moody Podcast - Chronic Illness: What No One Talks About, The Future of Treatments, and The Best & Worst Healing Practices with Meghan O’Rourke

Episode Date: April 20, 2022

My guest today is Meghan O’Rourke, the author of the beautiful new book, The Invisible Kingdom: Reimagining Chronic Illness. Megan is a poet and longtime journalist whose writing has appeared in The Atlantic Monthly, The New Yorker (where she formerly was an editor), The New York Times, and many more. She’s the recipient of a Guggenheim Fellowship and other awards and currently serves as the editor of The Yale Review. This episode is really about highlighting the often hidden parts of chronic illness while offering both pragmatic tips for anyone suffering from chronic illness to feel better but also anyone who wants to understand what causes chronic illness or how to help people in their lives that are currently dealing with chronic illness. We talk about: how her chronic illness began and how she finally got diagnosed after years of going to doctors what causes autoimmune diseases and why people often get multiple autoimmune diseases at the same time what causes chronic Lyme and other lingering chronic disease from acute infections the complicated role stress plays in chronic disease her best tip for figuring out if your symptoms are because of chronic disease how having a child impacted her chronic illness the practices she found that helped her healing the most (and the things she tried that didn’t help at all) her best advice for vetting which alternative health practices are worth trying the importance of the microbiome in treating autoimmune disease the deep loneliness of chronic illness, and what helped the most in dealing with it the state of her health right now the daily practices that keep her feeling her best her best advice for treating a chronic illness without letting it take over your life the best way to shore up their body to help prevent acquiring a chronic illness how to best help people in your life who are suffering from chronic illness the future of chronic disease treatment This episode is sponsored by Dame. Head over to dameproducts.com and use code HEALTHIERTOGETHER at checkout for 20% off your purchase through January 31, and 15% off from then on. This episode is sponsored by Wild Blueberries. To find wild blueberries in your local grocer, just look for the packaging in the freezer section that says “wild” on it. If you want recipe inspo or more info, go to wildblueberries.com. This episode is sponsored by AG1 by Athletic Greens. Visit athleticgreens.com/healthiertogether and get your FREE year supply of Vitamin D and 5 free travel packs today. Healthier Together cover art by Zack. Healthier Together music by Alex Ruimy. Learn more about your ad choices. Visit megaphone.fm/adchoices

Hello, friends, and welcome back to the Healthier Together podcast. I'm your host, Liz Moody, and I'm a cookbook author and long-time journalist. This podcast is all about helping you live your healthiest, happiest life, whether we're learning how to elongate our health span, hearing real women share how they learn to love their bodies, or hacking travel points to get free luxury hotel stays. And yes, those are all real episodes, so if you want to know more about any of those topics, just scroll on back in the archives. On today's episode, we're going to get into some little discussed elements of living with chronic illness.

My guest today is Megan O'Rourke, the author of the beautiful new book, The Invisible Kingdom, reimagining chronic illness. Megan is a poet and longtime journalist whose writing has appeared in the Atlantic Monthly, the New Yorker, where she formerly was an editor, the New York Times, and many more. She's the recipient of a Guggenheim Fellowship and other awards and currently serves as the editor of the Yale Review. This episode is really about highlighting the often hidden parts of chronic illness, while offering both pragmatic tips for anyone suffering from chronic illness to feel better, but also anyone who wants to understand what causes chronic illness or how to help people in their lives that are currently dealing with chronic illness. Megan is in the unique position of having both a powerful personal story, but also having

interviewed experts and kept up with the latest research about chronic illness for years through her job as a journalist. On this episode, we talk about her own chronic illness journey, including how she finally got a diagnosis, how having a child impacted her chronic illness, the practices that she found helped her healing the most and the things that she tried that didn't help at all, the deep loneliness of chronic illness and how she deals with that, and her best advice for vetting which alternative practices are worth trying. We also talk about why people often get multiple chronic illnesses at the same time, what causes chronic Lyme, Long COVID, and other lingering chronic disease from acute infections,

the complicated role stress plays in chronic disease, the best way to shore up your body to prevent acquiring a chronic illness, and the future of chronic disease treatment. While this episode sounds like it might be heavy, and we do dive into very real and intense topics, it's actually much more fun than it might seem. Megan is such a lovely, introspective, and kind person, and she really gives off the best big sister energy. The message of this conversation is ultimately quite hopeful and empowering and important and I really can't wait to hear your thoughts. Definitely share anything that resonated with you on Instagram. I am at Liz Moody and Megan is at Megan O-R and Megan is spelled with an H. If you're new to the pod, do not forget to follow or subscribe so you don't miss out on any

future episodes. We've got an amazing one coming up with secrets for gorgeous hair. an episode all about easy ways to be unbelievably charismatic, whether you're at a dinner party or work, and a dive into the future of gut health. So definitely make sure that you hit that subscribe button so you do not miss any of it. All right, without further ado, here's Megan. Okay, Megan, I am so glad to have you here. I was just telling you before we started recording that I am such a huge fan of your writing and I'm excited to be talking to you today. I'm really excited to be here too, Liz. Thanks so much for having me. So let's just get right into your story.

Can you tell me about when your experience with chronic illness began? Yeah. One of the funny things about my story is that it's hard to pinpoint a precise origin. But shortly after I graduated from college in my early 20s, I started experiencing really strange symptoms, mostly neurological. I remember vividly walking to work one day and being kind of beset by these strange electric shock sensations that traveled all the way up and down my body, you know, kind of like, oh, it was just really horrible.

And coming and going and I never knew where they were. And they were severe enough that my legs were spasming. And I had to stop and rub them and rest until the sensation passed. And just over the next decade, really, I experienced a wide variety of symptoms, including brain fog and fatigue that came and went, right? Some days I was fine. and sometimes I was really enervated and not myself or in a lot of pain.

And this went on for more than a decade before I got any kind of diagnosis or answers. And what motivated you? At what point were you like, oh, this just isn't in my head. This is something I should actually go see doctors about. Yeah. Well, I started going to see doctors in my 20, you know, when these electric shocks happened all over my day, I went to my doctor. And he was like, I don't know.

We'll run some tests. I'm not really sure what that is. And the test still came back negative. And he was like, well, maybe you have dry skin. You know, maybe you're a little stressed at work. And so for years, I was just at my regular checkup saying to my doctor, I just don't think I feel like really tired a lot of the time. And she would talk up, you know, I had this high-paced job and I was not sleeping a lot.

And she said, well, I think, you know, you need to make some changes and try to sleep better. So, you know, there was this kind of lackadaisical effort on my part. but I really absorbed the notion in my 20s that this was just me and that maybe everyone felt this way and I was sort of a special complainer. You know, I think that was really my fear, right? But it was after my mother died when I turned 32 and it had been a really grueling few months, as you can imagine. And I got a virus in the week after she died. And I just didn't get better. And what had been these intermittent symptoms began to be unrelenting and really impact my ability to

work. I had to cancel lots of things. I wasn't able to do work I promised to do. And I started searching in earnest for answers at that point and was led, you know, step by step to a diagnosis of an autoimmune disease that I did have, which began my interest in thinking about chronic illness as a kind of topic that we don't talk about very much and that we're not comfortable with as a culture. Yeah, and a lot more happened after that. There was sort of a cluster of diagnoses in the end. But, you know, all told it was like 20 years of searching that has been quite a quest. What was your eventual diagnosis? There was a few things, right? Yeah. So one of the things I write about in my book is that something I really didn't understand when I started on my journey was that often

these diagnoses can kind of cluster. So the kinds of chronic illnesses I really focus on on in my book are autoimmune diseases and other diseases of the nervous system and immune system that can go hand in hand. So often once you get an autoimmune disease, you end up with more than one of them. And often people who have things like autoimmune disease might have something called dysotidomia or dysregulation of your nervous system, which can be a condition like pot. So in my case, I have autoimmune thyroiditis. I also have pots, which is a lot. I can tell you more about. And I ended up having Lyme disease that had not been diagnosed or treated for probably that

whole 15 years, which I finally got diagnosed and treated for, and which made me a lot better. I also have a genetic condition that kind of predisposes me to some of these sort of autonomies, the disautonomia piece. So as you can see, it's this really complicated. I'm throwing these jarvany terms at you, but it's like this complicated cluster of symptoms that anyone who's living in this world will have heard of a lot of these because they do often, intend to overlap. I do think that clustering, though, is so interesting. And I kind of want to talk about it more because I think it's part of what leads us to be like, oh, she's just a hypochondriac or she's

just being hysterical because you're like, do you really have six different things at one time? But from what you're saying, from what I understand, there's actually science behind why they grouped together. Totally. And I will tell you, I myself was like that, right? So that I wondered, well, how could I really have all these different things around with me? surely some of this is in my head. So I, that's part of why I wanted to talk about this in my book, which is, and even now, to be honest, when I tell people, sometimes I just give them like one diagnosis if I don't have them because I think like they're going to probably suspect that it's all. I'm really inventing everything. I'm like, oh, this, and that, this, and that, right?

So you're getting a special treatment. But, yeah, the science behind it is, One thing I didn't understand at all, and I think is still under realized, is that the immune system and the nervous system are kind of beautifully entangled and complicated ways. And so when you're under chronic stress, your immune system is changing all the time, and it goes through this really complicated dance anytime you experience an intense bout of stress where it ratchets up and ratchets downward, or actually first ratchets downward, then ratchets up, I'm getting it wrong. I think it ratchets up and then better. But it needs to kind of go through this complicated hormone choreography. And the more times it happens, the more likely a mistake gets made.

And your immune system kind of gradually ratchets into dysfunction and sometimes overdrive. And that can be an autoimmune disease, but that could maybe be allergy. It can be all kinds of things, right? And one of the things, too, about the immune system is that it's so individual that my symptoms from something going wrong might look really different from your symptoms. And the immune systems in all parts of the body, so it could feel like you have all these different symptoms that maybe do have some underlying connected causes, but it looks like you have 12 different symptoms that seem totally unrelated. So, you know, because these systems are entangled, if you have an autoimmune disease,

you may also have one of these nervous systems disorders of the autonomic nervous system. which is kind of controls unconscious stuff that we do, like breathe and blood pressure. The final reason, though, that, and I think this has become more clear to all of us in the past two years, that there's some interconnection is that a lot of this dysfunction in different parts of the body can be driven by infection. So a virus can come along and trigger something like an autoimmune disorder and pots, this thing that I have, which is just pseudonymia. And those often do go hand in hand. So they're not necessarily distinct. They're kind of interconnected puzzle pieces, if that makes sense. Okay. So just to kind of drill into that a little bit, to the first point, it's almost like

the idea that we experience stress and the more we experience stress, the more we're triggering this immune system cycle and it can make a mistake. It's like writing a sentence like a hundred times. And like if you write it a hundred times, you're more likely to make an error in that sentence than if you write it 50 or 25, right? Totally. Yes. Just the more you're doing it. Like, because, you know, the example people always give is that, you know, in the old days, we would be hanging out on the Savannah and like a lion would come. I mean, I don't know. Everyone always gives this example. Like literally everything. It's like, a lion will chase you. And stress will help you. You know, it changes your body so you can run away. Your heart pumps faster. Your digestion stops so that you're

not using energy there. Your immune system ratchets up because maybe that lion's going to slash you and it's going to need to have lots of immune cells ready to go heal that wound. So that makes sense. But the problem is we live these wild lives where we're constantly stressed and every email might make us stressed and then we get phone calls at 11 at night to deal with work, whatever. We're just constantly doing that. So exactly, more chances for it to go wrong. We weren't really designed to live that way. And then to the latter point, it's just the idea, which feels very straightforward, but maybe like under-talked about that if you have a virus and it's attacking one part of your body, there's no reason it would just like stay there and not have other negative effects on

your body. Yeah. And it can really get into your vae, like one thing we've learned about COVID, the SARS-Co2 virus, is it can get into your vagus nerve, which is sort of the connection in some ways between your immune system and your nervous system. There's evidence that if we cut people's vagus nerve, we do it to animals, not people. But, you know. Yeah, that sounds too. But, like, their immune systems change, right? So this is like, I think it's a frontier of medicine that's just starting to get explored

where a lot of the researchers I was talking to were at this kind of pioneering avant-garde of really looking at how infection doesn't affect all of us the same way, but affects us maybe very, very differently person to person. And also, and this is the wild part, maybe affects you differently if you get it right as you're experiencing a really stressful life event, right? Like the loss of a parent or right, that they're these successive, right? It's like one researcher called it successive hits, right? Like it's not just one thing, but maybe one thing plus another plus another and you end up with this constellation of problems. Okay, so my brain I'm a hypochondriac.

We're going to talk about hypochondri and how it plays into chronic illness. And I think for the most part, most people with chronic illness are like, stop calling me a hypochondri. But I really am one. That's a real thing. And I'm listening and I'm like, well, okay, how do I control to have that not happen to me? Is it something that you think you can control for? Can you do stuff so that you're one of the people who gets a tick bite and then, you know, doesn't have any long-term effects from that or gets COVID and it's fine.

later? Or is it just kind of like a bad luck thing? I think at this point in time, it's bad luck. Oh, no. I do. Megan. I hate to tell a hypocondriac. I know, I know. But look, I mean, being generally healthy, sleep. Sleep is the big thing you can do for yourself as a hypochondric. Make sure you get lots of sleep and lots of fresh water and fresh food, right? But I'm not telling anyone anything they don't know. But right now what's so scary about long COVID is that we don't really know why some people get it and some people don't. Back to this successive hits idea, we do know that if you have Epstein-Barr virus, when you get, like, active, we all get Epstein-Barr virus. Most of us, 95% of us, it kind of just hangs out in our bodies. That's mono, right? That's mono. But if we're

really stressed, like, it can reactivate. And so stressed is the theme here. And if you have it reactivated when you get COVID. it is shown that you're more likely to get long COVID. I think that's like a pretty clear connection. So, you know, don't be stressed. Sure. Don't be stressed. If you get COVID, I would go to a doctor and get tested for COVID and Epstein-Barr virus if you're able to. Oh, that's interesting.

I think they should be telling everyone to do that. And if you happen to have Epstein-Barr virus, when you have active, it has to be active. When you have COVID, ask for antivirals. and actually that has been shown to help. So there are these steps we are starting. No, I like that. I like action steps. We're going to learn more and more.

But yes, more and more action steps in the next year, as we hope. The mattress that you sleep on is one of the highest exposures that you have. Like if it's off gassing, you're breathing that in for basically a third of your life. And most conventional mattresses are loaded with synthetic foams, flame retardants, microplastics, and more. Plus, if it's not comfy, you're going to be tossing and turning. You're going to be really hot. And sleep is there.

the foundation of health. It is so important. Because of all of this, if I were not going to invest in any other part of my house, no other things in my house, I would invest in my mattress. And in fact, I have four years well before I had much money to spend on any of these things because it is such a big needle mover. The birch mattress is incredible. It is made with organic cotton, natural latex, and ethically sourced wool. So it has literally no off-gassing. You can not smell anything right when you boxed it has no microplastics, no synthetic foams or flame retardants. And the wool makes it so breathable, which if you've listened to this podcast for more than five minutes, you know that I run very, very hot. Like I am a furnace. Zach has basically accepted that sleeping next to me is like

sleeping next to like a little fire. And the birch mattress has been a game changer for that. It's made me sleep so much better. Like I can see my sleep score going up because I'm not hot all night long. It's also hypoallergenic, which is really worth paying attention to if you find yourself waking up stuffy or congested. Dust mites in a conventional mattress can actually impact your breathing and your sleep quality without you even realizing it. And again, we need to be able to breathe to get good sleep and getting good sleep is the foundation of our health. And then comfort-wise, Zach sleeps on his back and then I sleep on my side and my stomach. So we have two completely different sleep styles and we both wake up feeling really good, no aches and pains. CNN actually named the Birch mattress, the best mattress for side sleepers, and Wired named it the best organic mattress period.

So there you go. Birch has options for every kind of sleeper in your household. They have three firmness layers. I like the Lux Natural, which is the medium one. And then parents, they even have a Birch Kids natural mattress. Birch ships right to your door. It sets up in minutes and it comes with 120-night risk-free trial. So if it is not for you, they will pick it up for free.

you have nothing to lose here. I want all of you to enjoy a deep, restful night sleep with a new mattress from Birch. Go to birchliving.com slash Liz Moody for 20% off. That is birchliving.com slash Liz Moody. And you're going to get 20% off birchliving.com slash Liz Moody. I'm genuinely confused how masterclass gets literally the absolute top people in every single field to teach every single one of their classes. I use it when I want to learn things directly, like the cooking class from Thomas Keller has all of the wisdom that you would normally have to go to culinary school for. But also, I'm being honest, this is like a use case I don't hear a lot of people talking about. I'll just watch it for entertainment when I want to do something that's far more

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Masterclass is it. And the best part, every membership comes with a 30-day money-back guarantee so you can start learning risk-free. Right now, our listeners get an additional 15% off any annual membership at Masterclass.com slash Liz Moody. That's 15% off at Masterclass.com slash Liz Moody, Masterclass.com slash Liz Moody. Okay, let's talk about the stress thing for a second because I think that is such an interesting dynamic because like you said, stress really does play a physiological, like proven role in chronic

illnesses, but it is also the factor that people use to dismiss chronic disease and tell people that it's just in their head and even cause people, I think, to self-question, like, well, am I just stressed? Is this real? And so I'm curious if you have any suggestions for Navajo. navigating the place of stress and all of this. Yeah. So I think the thing is so hard and complicated to talk about stress because we tend to talk about it in very black and white terms like you've just laid out where we'll say on the one

hand, you know, often people who didn't know me very well would say, well, probably you're just stressed or you're a type A personality as if I had caused my disease, right? And I always felt this was their way of letting themselves off the hook from having to worry about it and also maybe reassuring themselves that this couldn't happen to them, right? Because it's really scary. It's like the long COVID thing. It's so scary. So I think we really need to, and then some people don't want to talk about stress at all, but we need to move to this more nuanced place where we can really think about stress as a factor, but not this be all and end all. So in my case, when those people said stuff like that to me, I was like, stop talking to me about stress. Like this is not me.

I didn't cause it. Something is going on that's beyond my control. But at the same time, privately, I knew that when I had a really stressful week ahead, my symptoms often got a little bit worse, right? And that actually one of the really fascinating pieces of research that I came across is that even anticipation of stress kind of activates your immune system because your body is very wise. Like it's looking for ways to protect you. So it activates immune activity in anticipation that something bad might happen.

So I worried, though, when I was first sick that maybe that was evidence that this was imagined, right? Because why was I always getting sick just when I was really had a lot to do? But the more I researched and talked to researchers and scientists, the clear it became that this is this really complicated interlocking reality where it's really hard as a chronically ill patient because as my husband said to me, the disease is made worse by stress. but then you can go down this rabbit hole where I was always trying to avoid stress and it was so stressful to avoid stress and then I was running to the I was like going to acupuncture but I was late to catch the bus. I'm like oh my God I'm going to be late to acupuncture. And so you can really go down this rabbit hole, right? And so I think the main thing to know is like we actually don't understand that much about it. So we return to common sense. What does

common sense tell you? Common sense tells you like if something really doesn't feel good for your body and your mind and your life, like, try to avoid that and minimize it. But we're also resilient, right? And so when someone is really sick to the point that stressors are making them even sicker, it's because something else is going on that has undone their resilience, right? And so it's not those tiny stresses. I finally said to my doctor, it's like waiting for the bus going to make me sicker. And she was like, no, that's not the problem. I just want to give you a hug. I have to be honest here, right? I'm trying to animate something of this internal experience.

I think a lot of us go through. For sure. Is there anything you would say to somebody who's listening and they are like, is it stress or is something wrong with me? How do I figure that out? Yeah. I really do think keeping a kind of journal or record, almost like a log of what's going on and your symptoms can be so helpful

because a lot of times I wanted it to be the case that I was feeling better because I had done something, but actually that particular thing hadn't helped me. And in other cases, there were things making me feel worse that I didn't even register. Some of them were food. Some of them were, I don't know, just funny triggers that I had. So I think in terms of stress, like one of the fundamental problems is that we have to own up to the lack of control, right? But the next thing is to try to sort of make it all concrete for yourself. So look at stress in your life as one of those things you're keeping track of and see, does it make you feel worse?

Like, do you feel worse the day after something really stressful? And then also what are the things that really bother you that actually impact your body? Because it might not be even what you think they are. Some stress is actually good for us, right? It's actually... Yeah, Hermesis. Right, right. So, you know, it's always...

is more complex in reality than I think our current frameworks can account for. Well, and it's so different person to person. Like I think some people are like, oh, you should like go live on a farm that's quiet, but some people find that stressful and like want to be in the middle of the city. Yeah, exactly. So I think, I think figuring the nice thing about the journal idea is it helps you figure out what your individual experience is, which is going to be so different than anybody else's. Let's talk about the hypochondri acting for a second because I know that you've shared

that you were worried about being viewed as a hypochondriac, and I think that's a really big fear of a lot of people with chronic illness. Did you make peace with that? How did you make peace with that? Is there anything that you learned from that that would be helpful to share? Yeah, it's really interesting. I write about this in the book, and I've been thinking about writing about it more, but when I think about my childhood, I wonder if I was like a little bit of a hypochondriac,

but at the same time now I wonder, oh, maybe my body knew I had this genetic condition, because a lot of what I experienced were these funny pain. So I was sort of preoccupied at different times of my childhood with some of these things. But that meant that when I started getting sick, the symptoms were so big that I kind of assumed maybe I was a hypochondriac, right? And then I think when I got sicker, the fear became others would see me as a hypochondriac because of that point was so clear that these symptoms had some real origin that was mysterious. But something I talk about a lot that's related to hypochondria is, you know, when you're living with chronic illness, you are living not only with the disease, but also your fears about the disease, right? And especially if it is one of these, you know, coming and going diseases,

remitting and relapsing, we call them, which are a lot of autoimmune diseases, you can have a great spell in which you might be very preoccupied by the fear that the symptoms are going to come back. And when they do come back, you might think, oh, my God, is this going to be as bad as that time? So there's a lot of managing of our own understanding that we can be sick, which is really like chepacondria. So I think one thing I've tried to learn to do over the years is separate out what's happening, what evidence I have. And then my fears and the story I'm telling myself about that evidence. And this became really important. And I relate to you on this front when I was pregnant.

because I was high risk, partly because of these autoimmune things. But at the same time, everything looked great, the baby looked great, and yet I was so worried something what happened to him. I just kept imagining something terrible would happen. And I really did finally go talk to a medical psychiatrist who specializes in helping people with chronic illnesses. And she said, it's been great.

She's like, just always go up the last piece of evidence. You know, just pay attention to the last piece of evidence, and then be like, that's what I know, and that's when we listen to. So I think about that a lot, right? Like sometimes now I will get really worried about maybe I'm going to, maybe I have cancer. I'm not, you know, forget the chronic illness. Maybe it's, right, right, I can identify the differences between, okay, here's actual symptoms and then here's stories I'm telling myself about those symptoms.

That makes sense. And I do find as somebody who has struggled a lot with anxiety that whenever I am faced with the things I'm scared of, I'm always so much more equipped to do. deal with them than I ever was in the story I was telling myself in my head. Totally. I think you've just said something so important. Yeah. Did I was curious if having a kid changed your relationship with your chronic illness,

with your body in any way? Yeah. Hugely. God, I could talk about that for hours. But I'll try to give you a brief version. I was really so used to my body letting me down. Here's another thing that I want to say about the stress and the chronic illness, which is I had come to think of myself as a sickly person.

I was like, well, maybe, so my body, if all this stuff is wrong, like, someone's just wrong with me. Like, my body's just not made wrong. And a doctor said to me, look, I actually think you're really strong. And you lived with a tick-borne illness for almost 20 years untreated. And for a lot of that time, you coped okay. And that was just one thing too many. But actually, your body is strong. And that is something I want to give listeners is that sometimes people who are sick actually have very strong bodies, right?

This is relevant to the pregnancy because when I got pregnant, I was still in that mode of thinking my body was sickly. And I was so scared that my body just wouldn't work, right? It wouldn't do the thing. And I was so used to putting a lot of effort into getting my body to work right, that I was kind of astonished that the pregnancy just went along. And this was after, by the way, two years of infertility. So I certainly had had the, when I was sick, I couldn't get pregnant. I had that experience of it not working. but it was really powerful, I think, then, to just see that once this pregnancy came and it stayed, because I've had miscarriages, this baby and my body just knew what to do, and they just did it that time.

It hadn't happened other times, but it just did. And I don't know, it was something really powerful about that. And it made me think that the story we tell ourselves about our bodies is often a fixed one, but our body. bodies are often very much in flux and their health and their being. And actually, we need to be more flexible, right? And part of it was watching my body be flexible and create this being and change completely in ways that we're sometimes uncomfortable, but sometimes beautiful. And it just reminded me that our bodies are so many more things that we think of them as being. God. Imagine if we could take that flexible approach and like apply it to everything in our lives. Like,

our relationships aren't what they were 20 years ago. Our career and what we think of ourselves and that way isn't what it was. You know, like, if we allowed more room for change and evolution, I just imagine what everything would look like. I know. I know. And by the way, it was fleeting, but it was very powerful. You know, and I try to go back to it. I wish I could have like bottled it and sniffed it periodically. No, exactly. Like if only we could be that kind to ourselves and others. Yeah. Yeah, for sure. Can we talk about some of the things that you have done, especially like I think in a physical sense, the practices that you have explored, which is a lot to help you get to a state of feeling better in your body. So I would love for you to share maybe two or three things that you found really effective that changed your body in a positive way and maybe a few things you tried that were less than effective. I don't know if this counts under practices, but I realized that I was like, really sensitive to a few foods and I was eating in a way that was actually making me sicker, but out of a weird idea of health and, you know, what I also wanted to be thin or, you know,

just all these sort of eating disorder, but also just, I think this is how I'm supposed to eat, I guess, you know, ideas that I had absorbed. But I really had been vegetarian for a long time and I really liked bread and eggs. And it turned out that bread and eggs made me feel really, really sick and created immune responses and that I actually needed a lot more protein. I was really protein deficient and just the way my body works is it does better with animal protein, which is sort of, anyway, so I had to reshape my whole idea of food to think of it as sustenance and fuel and medicine and really listen in a way to what my body was telling me about what it needed, what it craved, what it wanted.

And that really changed how I eat and how I, I don't know, approach food in general in ways that I'm appreciative of to tell the truth. At the time, it was hard because I was getting so sick after eating because I was having crazy immune reactions. Wow, just having wild immune reactions, I should say. But anyway, so there was a journey there too between kind of going down a rabbit hole and being scared that food was going to make me sicker to realizing, like, no, it was actually the medicine I needed.

And so that it's really complicated to talk about. Yeah, it's interesting that you say that you're appreciative of changing your diet in this way because I think a lot of people might feel resentment after having to cut out things that they really enjoyed or having to limit anything. I did feel a lot of resentment and self-pity at the time. And I still had really sad at the time. But I'm still sad I can't eat like all. and croissants. But I think now I'm really appreciative because I just see how much better I feel.

And I'm like, God, imagine I'd never figured this out or have the resources and the help to figure it out. That's really scary to me. The other thing that was really helpful for me personally was acupuncture and Chinese herbs. I think because a lot of my symptoms had to do with my autonomic nervous system and I was in this kind of overdrive state, it really helped manage that. And actually there's really good evidence that acupuncture can help balance the different parts of the nervous system and immune system and bring them back into a more regulated state. And, you know, as my end of one, I can say that really did work for me. It just was also really nice to go somewhere once a week where someone asked me lots of questions and was really kind and put me in a quiet room like room. And, you know, I just felt cared for.

And it turns out there's tons of evidence that feeling cared for really changes your biology. I mean, this is intuitive, but it's actually real. Like you can measure it in biomarkers and stuff. So for me personally, that was a huge thing that helped a lot. I'm changing my sleep habits. This is a really basic one. But just trying to, and I don't do this last night, I stayed up late watching Netflix, but try to go to bed before 10.30 in particular.

It wasn't so much about the amount of sleep, but shifting my sleep earlier in the night just made a big difference to my health in the morning. It was like the same amount of hours, but I was going to bed like at 12 and sipping until like 7.30 or 8, and now I go to bed earlier. The number one rule of habits is to make the things that you want easier and the things that you don't want harder. Yet so many of us want to eat healthier, but so few of us actually take the steps to make eating healthier easier.

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It looks glowier. The texture feels dramatically smoother. And I feel like you can see that too. I also love the body moisturizer. It dries down really quickly, which is always a pet peeve of mine with moisturizers. I hate that, like, sticky feeling when you go to put your clothes on. This does not do that. But it does moisturize really, really well.

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And my eye of an aura ring and it seems to track with that as well. Interesting. Yeah. So even if I fall asleep, my husband like fell asleep in front of the TV the other night. And he got like an hour of deep sleep like with his legs up on the couch like completely in this weird pose while a TV show played in the background, but he got good deep sleep because it was like early in the night. Early in the night. Yeah, exactly. And so I now try to really go to sleep a lot. You know, sometimes I even go to sleep at like nine, whatever. Let's see.

What didn't really work? I went to see some, you know, alternative doctors who I like immediately distrusted just there was some vibe there that wasn't good. And yeah, just took things and spent money on things that didn't help me. But there were other supplements that really did help me. But I found that for me, it was really following the people I trusted, really listening to myself there. I am curious about the vetting of things because you're obviously a journalist. Vetting is part of what you do for a living. And I think there's a lot of difficulty people have with vetting in the wellness world, with there's so many supplement, so many different practices. And you know, you can look for evidence-based research, but a lot of times they're not

doing studies on things that we don't even necessarily have names for in terms of a diagnosis. So how do you navigate that? And how would you recommend somebody else navigate that? Yeah. This is one of the hardest questions. And people ask me about this all the time. And I don't have great answers. And it's so frustrating, right? But I did see one practitioner who gave me really good advice, which was that I had gone to some integrative doctors who I liked, but again, I didn't have that deep trust relationship with. And they had just thrown like tons of supplements in me and I was spending so much money. And it was helping, but it was really unclear like what was going on and I just was taking so much. Then I saw this guy I really trusted and he said,

this is going to take longer, but I want to do one supplement at a time. And he said, and the reason I want to do it is I want to really see what is this doing to your body. body. And I was like, sure, can I just please take like these three supplements? And he's like, nope, we're doing this like one at a time. We're going to start with the most likely to help you. And so that was really illuminating because I thought, right, you know, we could do it this way. We could just do it more slowly. And also one could do that for oneself, right? Even if with anyone, you could sort of say, I'm going to try piece by piece. I did read a lot. There was a, there's a book that has a slightly hokey title, but that I found really, really helpful, which is called from fatigued to

fantastic. And, you know, I bought it and I read it and I lived with it and it has a lot of really good information or so I thought at least as a non-doctor, I should say, about just like what fatigue is biologically and how different supplements help. And it helped me understand why I was being recommended certain things. And it really helped me commit to certain supplements that really were helping me. But the vetting, it's it's the number one problem, right? Because the whole idea is that everyone's body is different, so we can't really study these things en masse. And also, there's just not funding to study supplements because it's not the same kind of market, right? What about outside of supplements?

Like, I know that you got a fecal transplant, right? I did. I did. Okay. So, like, how did you decide that that was worth exploring? And I'm curious, like, fecal transplants, but what about, like, bee venom therapy or parasite implantation or things like that, like with these more out there? alternative treatments, which I think people lean towards because when you're feeling terrible every day,

you're just like, oh my God, I'll do anything to feel better. But how do you decide what's worth exploring there? Yeah. So when I was sick, you know, and I think something people don't understand is like the sicker you get and the fewer answers you have, the more you're going to try different stuff, right, which looks irrational, but I think actually is incredibly irrational, right? Like, why wouldn't you do that? You have this instinct to self-preserve. So I tried all kinds of things. And my rule for myself was I would start with the things that seemed like the least likely to harm me, right? And then I sort of, the sicker I got and the more in need I was, the more I had ruled out, the more I was like, I'll try that because it's who, you know, I'm not better.

My quality life was really shrinking. I was getting sicker, sicker, sicker. But I would try to read a lot about the various things. So there were things I read about that I really couldn't and still don't fully understand. one of which was ozone therapy, which I did with a doctor I didn't trust. And it definitely, I had a positive reaction in the days afterward, but it's very hard. The evidence is not fair for it. But then some science, I actually just talked to a scientist who is like a scientist who is like, this actually does work.

We don't know how to really do it in a safe way. Anyway, but the FMT was really clear that it has huge benefits. this is the fecal transplant, huge benefits, and the risk is pretty low. There is a risk. There is a patient who actually died in America after a fecal transplant. It was a pretty complicated story, but, you know, the risk seems actually very low, even though it's a major intervention, and the upside seemed really high. So at that point in my illness journey, it seemed very much worth it because I had just taken a ton of

antibiotics to help get rid of the Lyme disease. And I knew that that had left me in a really depleted state where my microbiome was going to be in bad shape. And I also knew that the antibiotics were necessary, right? They really got me better. So the way I dealt with, okay, I'm going to take this really complicated drug that's going to help me and harm me. And then I'm going to try to do this countermeasure in a way. And sort of starting to think of the body as a dimensional organism where you're doing one thing and you're using conventional medicine where you can, but you're also trying to account for the ways in which, as one doctor put it, every medicine has a side effect, right? So then how do you naturally cope with those side effects?

And what was your, what were your results with the fecal batter transplant? Amazing. I mean, it made me really sick. Like, it felt like I had the flu. It was sort of, and I called a doctor friend and she was like, yeah, it's like an organ transplant. You're getting someone else's, you know, you're going to have a massive die off of your own. And it's a whole process. And yeah, it made me feel like the flu. Like I had like deep, deep ache for a few days. So I only did half of it. It's supposed to happen over a series of days. And I did half the amount. And that itself was enough to really make me feel much, much better and have more energy that I've had since before I got sick and got pregnant with my son a few weeks

later and help me have a healthy pregnancy, I think. So it really, I'm a huge, I really hope they bring this to all of us as a possible, possible thing. Can you explain a little bit about the importance of the microbiome and how that does interact with the immune system? Yeah. So the reason I, you know, if I had gotten Lyme disease when I was 25, or let's say I got bitten by a tick when I right after I graduated college, which is what I think happened. I was in the Connecticut Shore. Let's say I had just gotten a bullseye rash and taken antibiotics. I would never have ever done the fecal transplant, right?

Because I wouldn't have gone on this journey of learning about autoimmune disease, about dysfunction. And one of the things that I learned along the way is that the microbiome is really intimately connected to the immune system. And one researcher I talked to said, you know, it's almost as if they're like the interlocutors for the immune system. the immune system and the microbiome, those little organisms, are all talking to each other. And the presence of certain bacteria turns on certain kind of epigenetic actions in our body and

just everything. And we don't understand. It's like we're looking at an ocean and trying to, you know, we're saying the ocean is good, right? But like, but why? So there's so much we don't know. And that's, I think, the risk of something like the FMT is like, we just don't know. We're just sort of in the dark ages of the science here. But we do know that you need a very balanced group of bacteria because in the absence of what are often called good bacteria, these other bacteria will start to act out. And one researcher I spoke to had a great metaphor for this. Immune system and microbiome are like a kindergarten class.

And the immune system is the teacher. If the teachers goes out of the room because you have a virus or you've got something else going on, and the immune system's dealing with it, the bad bacteria in the class are going to start to act up. And then they're going to kind of bully the good ones and push them out the door. And then all of a sudden you have all the bad ones like egging each other on and misbehaving. And then the immune system comes back and can't keep control anymore. Right. So it's just an image for this very delicate balance and ecosystem, really.

So you said if you'd gotten Lyme disease and just treated it, you wouldn't have gone down this whole path, is the idea that all of this is could be prevented by an early treatment typically. So like if I got a tick bite and then did the traditional antibiotics course right away, I probably wouldn't struggle with long effects of Lyme disease. You probably wouldn't. That is true. So you definitely would be much better off for those people who can get prompt an ideal treatment.

They have much better outcomes. That said, not to freak out the hypochondriac and you again. But what we now know from a really big study at Johns Hopkins is that even 10 to 20 percent of those ideally treated patients who get it right away end up with long-term symptoms. So it's a lot like long-term COVID, right? And why and who and all of us. We're back to the beginning. But yes. But very important to check for ticks, especially this time of year.

The little tiny nymphs are out there. They're little poppy seeds. They're so small. Make sure you check for them. Yeah. I'd love to talk about the psychological side of everything for a little bit. I'm curious, outside of the physical, what were the most challenging psychological parts of your, you know, decade, multi-decade long journey with chronic illness? And then I'm also curious if there were any specific practices or mindset shifts that really helped you in dealing with them. Yeah, the psychological

piece was just, as you can imagine, immensely challenging. It's, um, It's hard even to talk about, but for me, by far the hardest thing was the sensation that no one saw my suffering, that I had no name for it, that in fact, when I went to doctor's offices, they were often a little bit dismissive and saying, this is stress, this is anxiety, and kind of incurious, really, right? They had another patient to get to right after me, and I try to be really careful in the book not to put the blame at the feet of individual doctors, but to really show that the system is not set up for a patient like me and the millions of others who live with these illnesses

because we have really complicated cases and clusters of diagnoses, and it requires a kind of medical detective work. But what was so hard about it, Liz, was that you're suffering and you have the physical suffering, the pain, the fatigue, the brain fog, and then you go to the person who's supposed to be your ally. And they're indifferent and they send you on your way. And it does two things. It makes you feel, you know, hopeless about ever getting answers or treatment or. And also, it just makes your suffering feel meaningless. This is what I mean by the invisible and invisible kingdom. It's it's a willed invisibility by the culture by people around us. But it's like they were rendering me invisible. And so it meant that my suffering wasn't even my own, right? I didn't

even have the dignity of my suffering. And I feel like that's what almost killed me, right? The pain was one thing, but the loneliness of not being seen was another. Yeah. So how did you deal with that? I think I wrote a little bit about it. Even when I was really sick, I was so sick at my sickest that it would have been impossible for me to put together thoughts clearly in the way that I am, hopefully somewhere clearly now. And just to go and try to teach a class I was teaching writing at the time would just wipe me out for the whole week. So I would spend the rest of the week recovering that I would go teach. But what I did do at this time was tell myself, okay, I can't write anymore. I can't read. These were the things that had given me my sense of self. But I'm going to write one sentence a day,

something about this experience. I'm going to get it down. And that for me was really, really helpful, just the being able to step back and again, sort of try to distill and think about both what was happening and the story I was telling myself about it. That was really, really helpful. And I think more practically, the other really important thing was that it's really tiring to keep searching for answers, especially when you get dismissed over and over or not even cruelly, but just some indifference. And so I remember at a crucial moment sort of giving up. And then having a second beat the next day where I was sitting on the couch and I was just like, I don't know what's happening.

I don't know if I can go on. And this image of there being this little pilot flame of myself that was still there because I felt a lot of the time that I was no longer myself as I had known her. And I just thought, okay, if that pilot's limb is there, like, I don't have to fight every day for answers, but I just have to like fight once a week for answers. I have to just do something once a week to try to keep moving this along and searching for possible causes, possible treatments. And that was really important to me because I had been so exhausted by the searching and so demoralized by it. And you get kind of physically exhausted by it too when you're that sick.

So giving myself that permission to be like, no, I'm going to continue, but I'm going to continue in this sort of structured scope. I'm going to give myself a break. I know that I wish I had more to offer, but that was really important for me. If you have headaches, allergies, brain fog, skin irritation, or you've been dealing with hormone issues, you are especially going to want to listen to this ad. Every single thing that I just listed has been linked to chemicals and household cleaners. One study found that regular use of cleaning sprays was associated with a lung function decline comparable to smoking 10 to 20 cigarettes per day.

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Everything gets so clean. And I know that I'm protecting myself from all of those long-term issues too. And I'm protecting my kittens who are much tinier than me. So anything they're exposed to has a much greater impact on their little tiny systems. And they're running around on their little paws and then they're licking them. So I'm protecting them too. Branch Basics is now available at Target.com, Amazon and branchbasics.com. So it's easier than ever to make the switch.

And if you want to grab their premium starter kit, you can use code Liz Moody for 15% off at branch basics.com. That's code Liz Moody for 15% off the premium starter kit at branchbasics.com. And when they ask you where you heard about us, please make sure to mention the show. That is branch basics.com and use code Liz Moody. When you think about strength and resilience, like your ability to feel energized, to recover well, to stay strong as you get older, what do you think that actually comes from? Most people say working out or good nutrition, and yes, of course that matters. But there is a biological foundation underneath all of that that most people are completely overlooking. I have been diving deep into this lately with

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your cell health impacts all of this, and uralitha, keep. your cells healthy. Timeline has done over 15 years of research and testing on this one product, urolithin A, which, by the way, most of us lack the gut bacteria to synthesize naturally. That's why many of us need to supplement it to get the benefits. This has become a staple supplement for me. It is my top way to support how I want to look and feel as I age. Support your cells and how you age with mitopure gummies from Timeline. Visit Timeline.com slash Liz and save up to 39% on your mitochondere gummies. That is timeline.com. slash Liz. What is the state of your health at this moment? I'd say it's like 60 to 80 percent, right,

of my usual health. So when I first got sick and got the autoimmune diagnosis, I went back to my doctor and I was like, okay, you've given me this medication, but I'm still sick, you know, not myself. And she was frustrated with me and she was like, look, you're always going to be at 80 That's just what it is to live with a chronic illness at best. And I was like, okay, but I think I'm at like 20% or 10%. So, you know, at my lowest, I was really sick. But I will say now most of the time I'm probably between 70 and 80%. And, you know, months like this when I've been doing a lot, it creeps down to 60%.

Like you can see immediately the effects of changing my life and taking on a little more. So I live in a kind of routinized and regimented way that actually might look rigid to some, but is the thing that allows for a fullness of experience, right? Because I can experience joy. I can go have dinner with a friend as long as I'm doing X, Y, and Z. Wait, can you talk to me a little bit about X, Y, and Z? We love, like, the Routenized. Yeah, like we want to hear some of the practices.

Okay. So, you know, I have to get up. I have to drink a lot of water, right? I really, with the pots that I have, I have to just drink tons of water. I have to make sure I get enough salt. If I don't get salt in my diet, this is sort of a funny problem to have. But I have to make sure I have like salty water often. Otherwise, I get really faint and dizzy.

But the big thing is just tons and tons of water. And then I do try to do like five minutes of meditation because I get in that place of just being very reactive and responsive. And then I try to really have a practice of finding joy. like sounds super hokey, but I have these two little boys. They're rambunctious. It's totally chaotic. And I try to like freeze frame in the moment where I'm getting them out of the door. And I'm like, and I just try to freeze frame all day long where I'm like, this is such a beautiful moment.

That's such a beautiful moment. And it really helps me balance the stress of working and having kids and, you know, also being sick. Do you know Dr. Rick Hansen? No. He, um, so he's a psychologist who specializes in happiness. and he talks about a practice. I had him on the podcast. If anybody wants to go back and listen to that episode,

it's the Ask the Doctor Happiness Edition. But he talks about the practice of when you experience pleasure, moments of joy, to just sit in that moment a little bit longer because then you're training, you're literally rewiring your neural pathways to look for the joy and look for the pleasure. So I just wanted to say it's not hokey at all.

It's scientifically validated your practice. I love that. And that's basically what I do. I try to sit in the joy. I try to find the fun and the humor. And even when it's like totally chaotic and we're late to school, I'm like, they're late to kindergarten. Like I try to turn everything into like something funny.

Like I'm the mom who's like late to kindergarten. It's okay. Yeah, for sure. So I really do try to do that. And I, on the converse of that is that I think one feature of the nervous system disorder I have is that like my cortisol rises really fast. So like what I'll notice if I get a really stressful work email, like I just my heart starts racing. I get very, very tense, right?

And I'm sure we all, I know from evidence, actually, that we all get this, right? There's a lot of data that like cortisol rises when you check your email. And that's a stress hormone. So I do really try to practice like, I breathe through my nose. I stop. I separate myself from it. I'm like, again, perspective. Like often it's my own anxiety about the thing, not the thing.

You know, I'm often reading more into something than there is. So I really try to create a lot of awareness and attention and non-responsiveness, reactiveness, right, a little more distance and calm. Lately, I've been forest bathing is the term. I love forest bathing. I love forest bathing. So even if I have like 15 minutes in the day, I'll drive. There's a little, I'll take like a 15-minute walk just without my phone or notifications on silence

and just around, listen. I love listening to little cricks and cracks. and it's supposed to be really good for your immune system. So I'm very, very into forest bathing. And then, you know, I'm just like doing my best to kind of eat healthy and go to sleep early. But, you know, I finish every day being like, oh, my God, there's 400 things I need to do. So a lot of it for me is about managing that sense of being overwhelmed. I do think it's so interesting.

I was thinking about the things that stressed me out the other day. And then I was thinking about how many of them are like artificially constructed by me. Like I've put these deadlines on myself. I've committed myself to these things. Some of these things aren't even committed to like at this moment this day, but I still have told myself I need to get them done by this day. And then I get overwhelmed and crazy. Do you have any advice for me?

I don't know. I do the, I think it's called like the ninja structure where you pick out the six things that are important. in your day. And I remind myself, like, that means that the other things really don't have to happen. Are those work things or anything? It's usually a mix of something with my kids. And I have told myself, too, that in terms of, like, being a mom and working, it's all so

chaotic, right? But I tell myself, like, the thing I really love doing with my kids is reading them a book at night. Like, even if I can't get to anything else, you know, lately I've been doing events at night. And sometimes I have to do a little work. my husband I sometimes treat off, but I just like really make sure I get to read that book to them. And then I'm like, okay, I did that, right? Trying to learn to, have you been, I don't know if you ever do Peloton, but Robin?

I know Robin. I don't do Peloton, but I'm a big fan of Robin outside of that. She has this thing. I think it's her where she's like the not-to-do list. Like what's on your not-to-do list? And I've been trying to just recognize when I'm putting stuff on myself and I'm like, you know what? I'm not feeling that great this week. I'm going to put all that on my not-to-do list and go take a walk in the forest.

I love that. I also think like perhaps, I don't want to put words in your mouth, but perhaps an upside of dealing with things like this for years is that you would have a little bit more of a sense of perspective. You would maybe be able to decide what truly matters in a way that other people might not. Yeah. That's exactly right. I think I do have a ton more perspective, I would say. and it's much easier for me.

The one thing I've really learned that maybe it's helpful is that most things, it just doesn't matter if you get to them when you said you were going to get to them. And actually pretty much everyone understands, especially right now, if we don't do it when or as well as we hoped we would. Right. And that also like we're scrutinizing ourselves more than others are. And so I kind of try to live by the basic precepts of like grace and accountability. and like, does someone really need me for something, then yes, I need to be there, right?

And showing up with grace instead of like frenetic franticness or, does that make sense? Yeah. But yeah, you just realize that we're here for a short time. And what really matters is that accountability to one another, the grace with which we treat one another. And the rest of it, you know, it will happen or not. Do you have any advice for treating chronic illness and trying to feel as good as you possibly can without letting it completely take over your life? Yeah.

I really live by the 80-20 rule, which is that as long as I'm well enough, you know, I have my practices of like eating a certain way, trying to sleep, go to sleep early, trying to, you know, make sure I'm not standing out in the cold too long, for example. But, you know, I believe in the 20% that's fun. So the other day, I went down to see some friends and we stayed out really just like a little late and we had the extra glass of wine and whatever. But it was so fun and restorative. And I was like, this matters. And then I'll have the kind of crappy day tomorrow.

But this matter too. And that decision is so personal. And maybe you don't have the extra glass of wine. I probably shouldn't have. But, you know, being kind to yourself as you find that practice too. I think I was really hard on myself attempts. I was like, I've got to do all this. I've got to do it.

I've got to be the perfect patient. And I had to learn to be the good enough patient. Like that's this idea of the good enough mother. Like the good enough patient, like get the important things right. And then just also know that searching for perfect control was going to be its own kind of challenge and probably not helpful. Well, I think there's the question of like, what are we trying to heal for? Like ostensibly, it is to live our best life. It's to have those nights out with your friends, to laugh and to feel social connection.

So if you're denying yourself all of that in the name of feeling, I think it's obviously a tricky balance because you do need to take care of yourself. But that's the goal, right? Eventually. Right. Right. And it's just been for me figuring out, like actually having a glass of wine is something my body pretty tolerant of, whereas like having a croissant is not.

Right. And figuring out that for you. figuring out what that is for me, you know, some people really can't drink coffee. Some people can, you know, and I can drink like a cup of coffee. And it just learned over the years to be a little bit more patient with that process. And one thing I think is hard about chronic illness that I forget is that it changes. So like recently some things have shifted for me, you know, for whatever reason. And so I'm in that exploratory process again of being like, okay, I'm actually not going to drink. for a month because maybe half a glass of wine, twice a week isn't working for me, or

I feel like maybe I'm drinking too much coffee, or I got to go to the doctor and get some tests. But trying to just, instead of being alarmed, trying to just be like methodical, it's hard, right? But like this is the process, trust in the process. And then think about, right, what are those, what are those? I think one thing we don't do enough when we're talking about chronic illness, when we're treating it, is to say what matters in your life. If you had 20% more energy, what do you want to do with it?

What do you think would help you get to that 20% more energy? Right? And really breaking it down that way. How does pain impact your life? Not show me on this scale of funny faces how much pain you're in, right? But what is pain doing to your life? What is it impinging on? Does it mean you can't go with your friends to the beach, whatever it might mean?

So I try to pivot everything to being really practical, if that makes sense. And can you just explain a little bit further why you think figuring out, like, I don't want people to listen to that and be like, well, I wish I could do all that stuff and I can't. And that just makes me feel bad about where I'm at. What is the benefit to thinking about things in that way? In a practical way. Yeah, in a way of like, if I had 20% more energy, what would I do? I assume the goal of that isn't to feel bad about the fact that you don't have the energy to do those things. Yes, I don't, I don't mean that at all. But, you know, I think, right, we're talking. talking about a range of illness, I think some of these illnesses are so resistant to any kind of intervention at this present point. So that's really, really hard. But in some cases, and in my case for a long time, except up my sickest, there were good days and bad days. But it would take a lot of work to figure out what's the good day versus the bad day. So one way I got myself to do that work

was thinking, okay, if I can get to the good days, that means I'm kind of having about 20% more energy sometimes. So what would I do with that? Reminding myself, why am I going to bed earlier? Why am I, you know, it can feel so draining to take care of yourself, right? I mean, we use self-care as if it's like a beautiful term, but when you have to do a ton of care to just function, it's hard and it's draining. And sometimes you want to give up and not do it all. You know, I, for example, best if I do take a walk. I have to sort of exercise with a very limited. I have to do this very structured exercise protocol. It's hard and I don't want to do it all the time. And I have to remind myself, like, this is why I'm doing this particular protocols to kind of keep my

dysotonymia like not from getting worse, you know. Yeah, but you're so right that it's so hard to talk about all this without thoughtlessly saying something that's actually like hurtful to someone with a slightly different situation. All right, I have a few quick fires for you. So we'll see how quick we can make them. Okay, let's start off. I don't even know if you have an answer for this. And I feel like this is just going to circle back to my hypochondria.

But if somebody listening was out there and they don't currently have any sort of chronic illness, but they just want to kind of shore up their body in the best way possible so is not to acquire one. Is there one thing that they could be doing? Sleep. sleep is the foundation of everything in our health, I think. It's a time when your body does a huge amount of repair. It's a time when the immune system is at work. It's we know from data that if you don't sleep, it's like a time, if you get tiny amounts less of sleep, you quickly end up at like a

DUI level of, you know, function. So it's shocking. fast, how much our cognitive and physical being is compromised by just a little bit too little sleep. And we have this habit in this country of just sleeping much too little all the time. So it's really clear that when I'm starting to feel run down, I will just go to bed at eight o'clock. And after doing that for three or four nights, I just start to feel a little bit better, you know, but it's also not overnight. It takes several nights. You have to really make it a practice. Sorry. It took me a second.

And then I was like, yeah, yeah. That was so bad. That was like a dab moment. So is the idea, too, that we're like always fighting these little things and if our body is equipped to fight it off before it kind of gets a foothold, then perhaps it won't become a chronic thing? Yeah. I mean, I think there's this concept in medicine that's a little bit under explored of this

idea of homeostasis, which is this idea that your body wants to go back to balance. that, you know, you get stressed, your immune system ratchets up, but it wants to go back to homeostasis. So the more that we, you know, we should be able to live lives where we get stressed and come down, we get cold, you know, we get cold outside and we come back in, our body temperature recalibrates. Like, I, my body is sort of out of homeostasis. If I get cold, my body can't really get warm again for like 24 hours. If I get hot, I can't really get cool again for 24 hours, right? So you do want to think about what are the pressures and strains on a body that lead it to being out of homeostasis.

And what's really complicated and goes back to some of our earlier conversation is that it can be everything from viruses and pathogens to stress to life events and trauma has been shown to affect body and your body in complicated ways. So there's this powerful concept called the allostatic load, which this guy, Bruce McEwen, helped coin. And it's this idea that there's all these invisible things. that impact our body, but most of the time, and that's the allostatic load, most of the time that load comes, but our resilience, the very way we're designed, helps us bring us back

to homeostasis. But if that allistatic load of a virus and stress and, you know, food sensitivity that you're not treating and another infection gets too high or mold, the load becomes so much that you tip out of homeostasis. And that's pretty clearly what happened to me. I can really see pattern over time and it's why I got sick gradually and then suddenly fell off a cliff. So I think that's a really useful way to think of it. Not that like, oh no, I got a virus and this is terrible or, oh no, I'm having a really stressful month at work, but more like, how do I reduce that load, that allostatic load? You know, we all breathe polluted air, but like, do I have an air purifier in my house? You know, plants, whatever. You're just always looking for that balancing. Sleep is a

big part of it. That makes sense. If somebody is listening and they feel like they maybe have some of these symptoms that we've talked about, but they've never thought about it really or done anything about it, where would you recommend that they start? Oh, this is a hard one. I think I would start with your doctor, you know, just go see how willing your doctor is to explore, find out what the nature of that relationship is. Some doctors are awesome and really understand autoimmune disease and some are like, I don't even know or I'm not that interested in doing anything more than just a baseline set of tests. I do think that functional integrative medicine can be really, really helpful because they do

these extra layers of testing. One really concrete example is that I had mono and no, my GP just never tested me for it, but my functional doctor did. And that was a really important piece of information. So I think finding a functional or integrative doctor you trust, this is really hard because Most of them don't take insurance. It's a tough one. But I think that they can be extremely helpful to getting some information.

And they're often really responsive if you say I'm interested in finding out about this. Reading online, finding some really good patient support groups. You know, doctors discourages, we can all get scared. We can get hyperchondriacal. But actually reading online was part of how I sort of ended up driving a lot. of my own, you know, doctors from helping me figure out because I had read something that I was like, that's my symptom. So I do think informing yourself in a way that doesn't trigger too much anxiety, that's possible. If you could wave a magic wand and change one thing about how we treat

chronic illness on a systemic level, what would you do? I would create coordinated care centers where they treat the whole patient with some combination of conventional medicine and other modalities like acupuncture, like really good, really excellent functional medicine where the whole person is treated and we talk about sleep and we talk about stress in your life and we talk about all this stuff. If you could share one message with somebody who doesn't have a chronic illness themselves, but maybe has somebody in their lives who does, what would you say? Like, what do you wish people had known about helping or caring for you? I think that the chronically ill people in your life are suffering so much more than they're ever letting on.

So even if to you, it feels like, wow, this person talks about pain a lot, that means that person is in pain so much more than they ever even say. And anything that seems rigid to you or neurotic or structure, that's a survival mechanism and a coping mechanism. And so the most important thing you can do is in moments where you see someone struggling,

stop and just say, I'm so sorry. I see that you're suffering. This is what one friend of mine said to me one day. She'd met me for a tea and she was like, you don't look okay. I'm so sorry. I really can see that you're suffering.

She didn't try to fix it. She just offered that recognition. You know, another thing that's really pragmatically helpful is offering to go to a doctor's appointment with somebody because it's really hard to take in lots of information. It's so important to have an advocate who's been sort of about for you.

help you be taken seriously and take notes. That's a awesome thing to do. Be like, let me come to your next doctor appointment if that would be helpful. If anybody is listening right now and feeling really helpless about their chronic illness, what would you tell them? Oh, first of all, I totally, I have been there. I hear and see you, it's such a hard, hard place to be. I think finding help wherever you can. Is there a friend in your life? Is there a family member? Someone who will help you go with a doctor, go with you to a doctor, and just sort of making an appointment with yourself to try that next step, whatever it might be, whether it's, okay, I'm scared to try a functional doctor, but I'm going to and I'm going to go to acupuncture or whatever it is. But it's really hard.

There are people out there who really care about treating these illnesses and are a lot of experience and can help. If anybody is listening, I think this is the tricky thing about seeing people with chronic illness, and I've heard you talk about this, but that it can be scary for people without chronic illness to almost like confront that, to have to confront that reality. And I think even this conversation could be scary for somebody who's like, oh my gosh, that doesn't feel like a life that I want, like a life that feels good. And it feels really scary. So I'm curious if anybody is listening and they're just really scared about acquiring a chronic disease or looking this stuff in the eye in this way. Is there anything that you would tell them?

Well, first of all, like, we all struggle with stuff all the time, right? And I think it's, there's no life that's without some of this, right? It's just, it's a little, it's can be more concentrated in chronic illness. But there's no doubt that it's really scary and that chronic illness is run the gamut. I mean, there are people I'm in touch with who are so, so sick and are in their beds and can't have lives they want to have. And this is just terrible. But it's scary to think about it. It's sad to think about it. But I guess part of the point in my book and why I do this work is to remind us that we do have this moral and ethical obligation to witness and to be there together. And actually that there's comfort in that. And I think I was a bad, you know,

when I wasn't sick, I knew someone who was and I wasn't a good friend to them. I mean, we were really close, but I just didn't understand. So I think anything you can do to understand and just show interest is really important. But I think we have a lot of power when we come together to try to make change. And so that's part of the hope here. You said there's comfort in that. Can you just speak to that a little bit further? Like for the person who's afraid to see, who's afraid to do that, where is the comfort?

I think the comfort has to do with something you touched on earlier, Liz, which is that your story you're telling yourself is worse. in the reality in a way. Not worse than the reality of illness. The reality of illness can be quite bad, but I think we find meaning in the deepest kinds of encounters. I actually think it's those moments when we let ourselves experience and be present for the hard stuff with one another that ends up feeling ramifying and like really painful to watch someone suffer,

but also like I am not denying that suffering. The suffering is there. And I think it feels bad to deny actually, right? So I don't know. That's part of what I mean is that I think that certainly for the sick person there can be comfort in feeling seen. But I think even for the well, that just knowing that we're all in this together in some way and not shying away from it can bring a kind of deeper level of meaning. I also find that the more that I expose myself to the human experience, the more of a catalog of resilience I build. Like I am constantly shocked and awed by how resilient human beings are.

This is the thing, right? And it's really incredible. And it doesn't make the suffering go away, right? That suffering is still there. But it makes it seem like if we're seeing it and naming it, maybe there is something societally we can do about it. We can say we want more funding into research into chronic MECFS or autoimmune disease, right? So there's things that can come out of that act of witness, I think.

I love your catalog of resilience. Can you just end us on what do you think the future is of chronic disease? Like how will we be viewing it and treating it in a decade or more? Yeah. I think we are on the precipice of a lot more understanding. I don't know if it's a decade or more, but I think we're going to have a much more clear sense of the ways that multiple triggers come together to create these diseases or clusters of diseases.

I also think that in 100 years, people are going to look at how we talk about. the mind and the body and be like, what were they saying? Like, we'll just know a lot more about the immune system and the nervous system and how all this stuff works together. And I think there'll be something more sophisticated in place. So there's a lot. We're behind of what we know, you know, but there's a lot coming down the pipeline. I've been excited to talk to researchers. Amazing. Well, everybody can find your beautiful book wherever books are sold, The Invisible Kingdom. Is there anywhere else that people can kind of look for you online?

I have a website, www.magan oldwork.com, and we're currently collecting people's stories and putting some of them up and I'm on social media. So yeah, come find me. Amazing. Well, thank you so much for taking the time to chat with us today, Megan. I really appreciate it. Thank you so much for having me. This was wonderful. I hope you loved this episode with Megan. Remember to check out her amazing book, The Invisible Kingdom, wherever books are sold. Also, if you love this episode, please share it with someone in your life who you think would benefit. It's the single best way that you can support the podcast and I appreciate it so much. I would also appreciate a quick rating or review on Apple Podcasts or Spotify. Although to be completely honest, if I had to pick one,

I would definitely choose you sharing a link to the podcast with anyone in your life, especially for an episode like this that's really diving into stuff that's so overlooked on a societal level. Literally just sharing Megan's words and sparking conversation about this stuff is helping move these issues forward. And it is so, so important. Make sure that you are subscribed or following so you don't miss out on any future episodes. We've got some great ones coming up and I will see you next Wednesday on the next episode of the Healthier Together podcast.