EP 107: Lyme Author Meghan O’Rourke on Her New Book, The Invisible Kingdom

 Mimi:
Welcome to The Lyme 360 Podcast for all things related to Lyme disease and other chronic illnesses. I'm Mimi McLean, mom of five, founder of Lyme 360, and a fellow Lyme warrior. Tune in each week to hear from doctors, health practitioners, and experts to learn about their treatments, struggles, and triumphs to help you on your healing journey. I'm here to heal with you.

Mimi:
Welcome back to Lyme 360. This is your host, Mimi MacLean, and today we have on Meghan O'Rourke, and she's a Lyme warrior that recently published a book, The Invisible Kingdom: Reimagining Chronic Illness. Meghan is an accomplished writer with multiple books and has been a former editor at the New Yorker. She has served as a cultural editor and literary critic for Slate, as well as poetry editor for The Paris Review. She's a recipient of the Guggenheim Fellowship, a Radcliffe Fellowship, and a Writing Non-Fiction award. She resides in New Haven where she teaches at Yale University and is the editor of the Yale Review.

Mimi:
Thank you for joining me today. Please go to Lyme360.com to sign up for our newsletter so you'll be notified of our next podcast and our weekly newsletter as well. And also, if you would like to help support our podcast, I have a shop page there with all the items that I use and suggest that a little bit of the profit goes to helping fund our podcast.

Mimi:
Meghan, thank you so much for coming on today and congratulations on your new book, The Invisible Kingdom, which has gotten such great press and recognition. So thank you for coming on. First of all, we're not that far from each other. You're in New Haven, so we're both in Connecticut. I'm down in Greenwich. You have been an author, you're a recurring author. So what made you decide, "Okay, today I'm going to take on a personal experience that I've had and create a book"?

Meghan:
I write both poetry and non-fiction, and I do a lot of journalism in my non-fiction writing. I also write memoir. But what unifies, I think, my non-fiction writing is I like to tackle subjects where there's an accepted narrative that seems off or dramatically off, to me, or seems in some ways to hide or silence something really key and messy and complicated that I think people aren't talking about. I don't know if it's the stubborn Irish American person in me who's like, "No, we're not talking about this. I come from a family that didn't talk about things. I've got to open it all up," or whether it's just that journalistic sense of, "There's something going on here that's not right."

Meghan:
And in this case, I, myself, became mysteriously ill. Rollercoaster, up and down, for more than a decade, and was eventually diagnosed with Lyme disease and some co-infections, which we can dig into. And as a journalist, as I started to explore this, I was initially really resistant to the tick-borne illness diagnosis because I thought, very naively, Lyme disease is a simple thing and we know a lot about it and it's an infectious disease, we're good at infectious diseases. So therefore, if I really had Lyme disease, I would've been diagnosed much earlier.

Meghan:
So as soon as I started reading, literally started reading through things, I'm like "What? This makes no sense." And started reading some of the studies that were used to show that the IDF, whatever, we can dig into it. But basically, as soon as you start reading about Lyme disease as a journalist, my antenna went up, and I was like, "There's something going on in this story that doesn't make sense to me. I got to dig in."

Mimi:
Right, right. No, and it's funny, I was looking on your website where you have all the different people giving you rave reviews, and you have Oprah, Vogue, and all these great resources. And I chuckled to myself in a way that was like, "Wait, did she actually really get ... Do they actually recognize Lyme? Does Oprah actually believe in Lyme?" You know what I mean? Because it's just such a taboo subject in mainstream that I'm like, "How did she get all these mainstream people? Does that mean they are agreeing?" Are they just saying it's a great book. or do they actually agree that there's Lyme?

Meghan:
Yeah. It's a good question. It's funny, I think because I had established myself as a journalist and had been writing in mainstream publications, I was really able to persuade the Atlantic Magazine to let me write about Lyme disease in a really complicated, nuanced way, which is entirely to their credit, too. Yeah, so it's been this funny thing where I was really wondering how that piece of it would unfold because I didn't know if that would be, and it has been, I think, in some cases, a red flag for some people where they've been like, "Well, there's some dubious stuff in here." But my take on it, since I know a lot of people in school is that in the world, at large, everyone knows somebody who has ongoing tickborne illness. Everybody knows somebody or has it themselves, especially in the Northeast. And so I think there's a lot of interest in this subject brewing right now.

Mimi:
Was it two summers ago? I think it was one journalist wrote about her son. I think it was in The New York Times.

Meghan:
Yes.

Mimi:
And oh my gosh, there was a backlash because she was like, "Oh, Lyme doesn't exist, or you could just solve it with six weeks or three weeks of antibiotics," right? So that got a huge press release, like a lot of attention, right? And then I think it was your Atlantic article-

Meghan:
Yes.

Mimi:
... that got a lot of attention about Lyme. So it's just funny how there was two different extremes, but they both brought a lot of attention to the issue.

Meghan:
Yeah. And what was funny, I actually did some of the tweeting about her piece, which I thought was just very over simplistic, and unnecessarily so, to say the least. There was also that piece in the New York Magazine, I think it was, that portrayed people's chronic Lyme as being incredibly incredulous and unable to make basic distinctions about reality. And that came out around the same time, I think even before my piece came out.

Meghan:
Yeah. I remember feeling really nervous writing the Atlantic piece. I'm happy to talk about that more, but that was a really reported piece. I talked to tons of people for it, including Allen Steere and the IDSA, and I just, especially after that New York piece came out, I was really living in terror that this article would come out where I'm saying, "Look, I have these complicated symptoms that I think are basically long-term tickborne illness, and I don't have a clearcut CDC test, and I am telling you why I think this is all credible." Yeah, I was quite nervous.

Mimi:
Well, because it's like the opposite. I know when the first article came out with the New York Times, even though I had my podcast or I just started my podcast, or maybe I hadn't even yet ... Maybe I hadn't even started yet, and that might have been the inspiration because I was mad that she said that, and I was like, "Wait, so you're saying I'm making this up?" And that's when I finally was like, "I'm going to go vocal about what I've been through," and I took a video of my before and after, like how I couldn't walk, and then after my treatment, I was able to walk. And I can't tell you how many people reached ...

Mimi:
I put it on social media, which was so not like me to put myself out there. And I think there were so many people that came back and were like, "Oh my God, I didn't realize you were that sick. I know I've given you hard time for going home early." These are good friends that were like, "Oh my gosh, I gave you such hard times over the years. I didn't realize that's like what you were covering up."

Meghan:
I know. It's so hard, isn't it, for us to ... I mean, and I'm very similar to you. I think, even as this book came out, friends of mine said, "I didn't realize how sick you were." And I think I was very adept, in some ways, at hiding what I could. There was some stuff I couldn't hide, but I hid a lot, right? And I think I was just a private person. And so, yeah, just like you, I mean, I totally, totally relate to that sense of ...

Meghan:
And then so many friends saying, "I didn't realize what was going on," and I think part of it was myself not knowing how to judge how sick I was, really. It's only now, in a way, that I can see just how sick I was. But even when a flare emerges again, it's still hard for me to judge. So I had a really bad flare a few months ago, and it took a long time to be like, "I'm in a flare. Something really bad is going on."

Mimi:
I'm in the middle of that right now, and today is like the first ... I canceled everything last week because I just was in bed all week, and now this week I'm slowly ... And then you're mad at yourself when you get into a flare again.

Meghan:
Yeah.

Mimi:
Which is so hard. Where are you in your healing process at this point?

Meghan:
I don't know.

Mimi:
I know, right? Well, today. I don't know about tomorrow.

Meghan:
That's a really honest answer, which I can tell you is, I don't know. That said, I don't know when I got sick. I am pretty confident. I now, actually, have a very clearcut Bartonella positive test. So I don't know exactly. I don't know if I got sick as a kid. I grew up camping in New England. My mom would pull ticks off of ... I mean, we'd go outside all day and we'd come in and we'd sit with my mom, and she would pull them off with tweezers and put the ticks and burn them up in the candle.

Meghan:
So I don't know if I got a tickborne illness when I was a kid and it's been part of my life forever, or whether I got it in my early 20s, which is right when the neurological symptoms started, which are pretty distinctively tickborne illness, I think, certainly for me. But it took another decade or so until I was in my mid 30s to get any antibiotic treatment or to even get a diagnosis of tickborne illness. So let's say it's 2022 now. I started treatment for Lyme disease in 2014, and pretty immediately went from, at that point, being bedridden. So by the time I got the diagnosis, I was really at just a tremendous low point.

Meghan:
I had been on steroids that had made me much sicker, and I was having trouble speaking coherently. I was having trouble staying awake, and I couldn't read. I could no longer exercise. I was fainting and cutting my head and cutting my arms and just bruises all over. I did three weeks of doxycycline and went from being like that to being able to run.

Mimi:
Wow.

Meghan:
Yeah. Not like feeling 100%, but I could run half a mile, right? It was so dramatic. It was like just startling to everyone who, like my husband and my mother-in-law, people like my brothers who really knew how sick I was. But it took many more months and a lot of other drugs and anti-malaria drugs, lots of supplements, and changing my diet. I had done a lot before I started the antibiotics, I think, set me up to benefit from them. But yeah, it took another year of lots of antibiotics to get to another level of feeling pretty clearheaded. And since then, I've been on and off antibiotics.

Meghan:
I was pregnant, and so I was on antibiotics for a lot of my pregnancies, just out of an abundance of caution. And then I had a really bad relapse when my first son was 10 months old, and I went on herbs and antibiotics and got much better, got pregnant again. And then did some herbs I had never done and went into remission for about four years until this fall. And since the fall, I've been actually pretty symptomatic again, but I'm at 70%, where I was at like 20%. So pretty symptomatic now is like I might have a really bad day, definitely having neurological stuff, but fundamentally, my brain is working, I'm fundamentally energetic. I basically feel like a semi-functioning person.

Mimi:
Yeah, yeah, which is so hard being a mom and working, keeping it all together. Did you figure out what's ... For me, it's mold and what I eat, and stress that triggers it.

Meghan:
Mold is a relatively unexplored piece for me. I suspect it played a role in the past. For me, it's food 100%. Just can't eat gluten, can't eat certain foods. Viruses. Getting any kind of sickness from my kids just knocks me down. Stress, absolutely. And I am a huge failure when it comes to managing stress. I like to be busy. I don't know. I have a hard time turning off, and I think also, after all those years, I really missed a decade of my life. I'm hungry to live. So I definitely take on a little too much. Not getting enough Vitamin D is a huge one for me. I do great in the summer and terrible in the winter. And I think it's that combination of vitamin D and viruses, but yeah, I'm sure there's pieces I don't even understand yet.

Mimi:
I know, I think that's a big piece because when I relapsed, I went back to my doctor, and she's like, "I think you were exposed to mold again." But I also got COVID around Christmas, and I think that set me back having the virus, like you were talking about. From your research and from writing the book and from writing the article, do you have any ... And I don't think there is a right answer, but I just would love your opinion as to why you think Lyme is not more recognized by mainstream healthcare, insurance in general.

Meghan:
It is one of the most mysterious things I have ever encountered as a journalist. I have written on complicated and controversial topics. I have never encountered a topic where the more I dig, the more I still don't fully understand what is going on and why some people are behaving the way they behave. What I can say is I met the most resistance that I've ever met from certain quarters. You can guess what they were. But there were threats. My fact checker was threatened, I was threatened by writing about tickborne illness as something that might extend past an initial course of antibiotics. I was told that I was an anti-vaxxer like Jenny McCarthy and peddling nonsense. And because I was quoting, in particular, credited scientists like Monica Embers and Brian Fallon, there was just a full court press or, "You, The Atlantic, should not be publishing this. You, writer, are irresponsible."

Meghan:
So that was very intense. So I certainly think that is a big factor. There are people who are really antagonistic, who are really clinging to and trying to ensure that mainstream publications, I think I can say this, are not publishing a story that deviates from the, "Lyme is pretty tidy. Most people will get it, get recovered, and maybe a few people have some immune symptoms in an ongoing way." So the question is why? The question is why are those people ... Is it ego? Is it whatnot? I think that more broadly, though, when you get past that set of people and the IDSA itself, really holding onto this one view of it and really don't want to deeply think about other possibilities, modern medicine itself, it's so algorithmic. You learn something in med school. There's the three papers that give you the evidence-based approach, and then that's it. You just apply it.

Meghan:
So my sense is that GPs, except for the ones who really, out of desperation and necessity, have taken an experimental approach, most GPS in New York City or just around the country who don't deal with a lot of patients with Lyme disease are just going by what they've been told, and they're not spending time on the weekends reading, probably, a lot of the studies that you and I have read. They just don't have time. They're really busy. They're really under the gun. And most of the time, science works and is right, some of the time.

Mimi:
It's not a cookie cutter box where it's like, "Okay, you have X, Y, Z. This is how we treat it."

Meghan:
Right. Exactly. It's really common. And then the other thing is, and this is where I wonder if some shifting will happen, modern medicine is really based on this idea that pathogens, in particular, affect us all in pretty similar ways and can be treated in pretty similar and reductive ways. This is the germ theory. It comes around in 19th century, and it's literally there in Robert Koch's postulatory. He's like, "One of the ways we know something is caused by pathogen is it behaves similarly in different bodies."

Meghan:
Now I think what's happening with COVID is that we are seeing very vividly, dramatized before our eyes, that this pathogen does not behave the same way in different bodies, and it's leaving some people really sick. So as much as there's some debate around that, I think a lot of people are accepting the reality that at least some portion of the population is sick after getting COVID in a way that when that happened with Lyme, it was much less clear to people that Lyme was the trigger, and there wasn't this national, all of a sudden ... I mean, there was. But it wasn't a pandemic in the same way.

Mimi:
Yeah. It's frustrating for us, I think, looking at these long haulers being accepted, how they were even talking about it on mainstream news, like, "Oh long haulers. People are not getting better, 20%," and there's very similar symptoms to what we have. It's not cookie cutter, everyone's different, but very similar neurological, other issues, and you're like, "Wait, why are they being accepted and we're not?"

Meghan:
I know. But I think we have to band together and I think we have to see the advances for them as positive.

Mimi:
Totally, because it's very similar. And I think what's helping them get better is what it is helping us get better. It's very similar treatments.

Meghan:
Yeah, yeah. And from my perspective, too, the fewer people suffering, the better. Yes, I find it mystifying that Lyme is still so stigmatized, but it's interesting in my reporting, because I'm writing another piece actually about long COVID, but it's really about long COVID and how it may end up spilling out, having effects on all these other conditions that have been so long ignored in frustrating ways like ME/CFS or chronic [inaudible 00:17:16]. And a lot of the researchers I'm talking to have a new interest in Lyme disease. These are the more open-minded researchers who are diving into COVID, and they are just quickly hooking up with and connecting with a lot of Lyme disease researchers, and it's making it a little bit politically possible to start talking about to tickborne illness, I think.

Meghan:
My bet is in a few years there's going to be just, not a lot, but a little more, but they're really encountering this problem where papers they put forward are getting shut down, especially if people talk about chronic Lyme. I mean, I think this is the biggest problem for tickborne illness is that the research is being shut down at the highest levels by senior people who are evaluating proposals and grants and things like that, which when you don't know this whole story, sounds like conspiracy thinking, but it's just quite literally true. As a reporter, I could go report it all out, like, "Oh, this paragraph got put forward. This is a really interesting trial. Oh, got shut down by so-and-so. Oh, this project got put forward."

Mimi:
Well, it's funny because usually things that get shut down are because the pharmaceutical industry might deem them as a threat. Like, "Oh, well, we already have this way of healing something. We have this protocol," and that is going to make that protocol go away. But there's not even a protocol. There's not even a cure or any kind of treatment or any kind of medicine that people can use for chronic Lyme. So it's funny because you're like, "So it can't be the pharmaceutical industry that's upset about it because there's nothing that they're offering that we're discounting."

Meghan:
Well, science, as it operates, medical science in particular, is a very conservative field. And I think it's like any field in academia where, when there's an accepted way of thinking about something and some people have really staked to their career identity on that, it doesn't just happen in Lyme disease, it happens across the board in anthropology. It can happen in English, the study of English. But in Lyme it's particularly the case where you have these senior medical science, rather, it's particularly the case where you have these senior researchers who will see a way of thinking about and studying a new paradigm for thinking about Lyme disease or, "Let's do these autopsy studies," and they're like, "We don't need to do them because we've already established this way of thinking."

Meghan:
So I think it's a lot of people who the way medicine is set up is that you have to go through senior people to get your work approved. So it's just inherently conservative, again, not only in Lyme, but especially in Lyme. So even Alzheimer's or it's very hard to bring those new ideas in. It's almost like we need the think-tank version of research.

Mimi:
Which we're starting to do, right? Through the Global Lyme Alliance that's funding it or the Steven Alex Cohen Foundation, they're funding it. So there's a lot of money now being pumped in to do that alternative.

Meghan:
Yes, and it's starting to help. It's starting to produce real findings that I think major academic medical centers, some of them are involved in them, and others who aren't are going to have to start waking up and say, "This is real science." Yeah. Monica Ember's work showing ... It's just the presence of spirochetes in a brain after being treated with antibiotics. It's a really stunning finding.

Mimi:
And then you also have to wonder, I'm sure you've read Bitten, where you've got to stop and be like, "Wait, is there something else?" Is that the conspiracy theory, why no one's talking about it?

Meghan:
Right, right. Well, right. So we didn't get to that part. Right. So there's this animosity, and then the question is, "Where does this animosity come from? Is there something larger being covered up?" And I just don't know what to think. I tend not to be a very conspiracy-minded person. I'm very literal and look at what's in front of me, but I will say it's just a very weird story to me.

Mimi:
Well, was it Congressman Smith out of New Jersey? I think that's who it was, who just is requesting that info, to open up that Pandora's Box. So we'll see what happens with that.

Meghan:
Yeah. No, and I mean, as we've seen with COVID, whether or not there was a lab leak involved, it's like we're constantly studying pathogens, and animals and ticks, and we know that there was that research being done on Plum Island, whether it's ... you know.

Mimi:
Yeah. But also, it goes back to the Twinkie thing. The Twinkie that we grew up with is not the Twinkie today. It's like the tick that you grew up with is probably not the tick today. So the same idea.

Meghan:
Yeah. Now I'm going to think of ticks every time I look at Twinkies. Yeah.

Mimi:
Well, unfortunately, it's not even in ticks anymore, right? People don't realize that. It's in mosquitoes. It's in lice, right? I mean, there's so many different other carriers besides just deer and ticks. Bunnies, I found out, they're bigger carriers of ticks than deer because I was like, "Oh, we don't have any deer. I've never seen a deer," and the guy was like, "Well, do you have bunnies? Because they have a lot more ticks than deer."

Meghan:
And mice. Yeah. I mean, right. We chose a house in Connecticut that's next to a parking lot on one side, next to an apartment building on the other side because I was basically terrified of moving out of New York City, even though ... Mostly I think it's fine, but then we have like a possum in our yard. I'm sure there's mice.

Mimi:
Yeah. So I always ask everybody I have on this question. If a friend were to call you and say, "Hey, I just either got diagnosed or I think I have Lyme and I'm waiting three months to get into this Lyme specialist, or I don't have the money to go see this Lyme specialist because nothing is covered by insurance. What can I do from home?" What would you say are some good tips or takeaways that you could point? Because I truly believe there's a lot of healing that we as Lyme warriors can do on our own without having to look for somebody else to heal us.

Meghan:
Really, I think the biggest shift that's hard for people to make is the shift from there's one single cause, and it's this, to there might be several causes or several points of weakness that are collectively weakening you and making you sicker than you need to be. So in my case I probably have celiac disease, so that was going on and I didn't realize it. So I think the number one thing is you don't have to spend any money on going to bed early. We can all go to bed and get a good night's sleep, and in my case, I used to sleep a reasonable amount, but I always slept from 12 or 1:00 AM til 9:00 or 10:00, between 7:00 and 9:00, let's say. And I think for me, I just realized I need to go to bed really early. I get a different quality of sleep. That's really important.

Meghan:
Looking at food sensitivities, looking at stress, looking at what other factors in your life might be also undermining you, before you go to a Lyme specialist, maybe you can find a sympathetic GP who will also just make sure you don't have other viruses in your system, make sure your vitamin D levels are good. Just get a CBC and see what's going on. But I found that eating a really clean diet, sleeping, meditating, letting go of stress, not good at that, but trying, helped a lot. And actually acupuncture helped me tremendously and Chinese herbs helped me tremendously. And before I knew I had Lyme disease, there were these periods where I would get better for three to five months, usually, again in the summer. And it was just through sleep, dietary change, acupuncture, and Chinese herbs, in my case. And I'd have a good summer, and then I would get a virus in October and I would be back to square one. So that's an unsatisfying answer.

Mimi:
It's perfect. I mean, because it's true. It's the perfect storm.

Meghan:
Right? Yeah. Right. Checking the different boxes of your perfect storm.

Mimi:
It is. I don't think people realize how important diet is because you keep thinking like, "Really, can this one bagel really affect my body that much?" I even to this day say that, like, "How bad can that one piece of pizza really affect your body?" And it does, especially gluten. I don't know anybody that's gotten better without giving up gluten from Lyme. I mean, I think you can go back to it and occasionally cheat, but in general, I think gluten and alcohol is the devil for Lyme.

Meghan:
I have found gluten to be just completely impossible, just completely impossible for me. The other thing that I came to realize, too, and it made sense of a lot of my life previously, that it's not just that I have to avoid gluten or some things that are obviously not great food, but that I actively have to make sure I'm getting a lot of fruits and vegetables and not too much salt. I actually do good with some salt. I need some salt, but I notice if I'm traveling and I'm eating a lot of processed salt, that triggers a whole bunch of symptoms for me. And then also, if I'm eating what seems like healthy food, but there just aren't a lot of these antioxidant rich things in my diet, I definitely am not great. I actively need those green leafy vegetables, which I have to remind myself every day.

Mimi:
No, it's true. And even the minerals. No one ever really talked about that. That's a simple fix. Getting some minerals that you can put in your water.

Meghan:
Yeah. This is a hack a nutritionist I worked with gave me, and it's been really transformative to me. I do really well when I get ... You can get their Dulse, it's seaweed, and there's little flakes, and I just sprinkle it on stuff. And oh my God, it was transformative for me.

Mimi:
Because of the minerals or the salt?

Meghan:
It's a little salty, but it's also just tons of minerals and things like selenium. I think selenium. I could be wrong about that, but minerals.

Mimi:
Yeah. I've taken those before, too. Yeah, those are great. So is there anything else about The Invisible Kingdom: Reimagining Chronic Illness that we haven't covered and you want to talk about?

Meghan:
I don't know if you felt this way. We started our conversation talking about your friends saying, "Oh, we didn't realize you were this sick." I think I would just say there were the symptoms themselves, which were incredibly debilitating and almost killed me, and then there was the loneliness and invisibility of being the person living those symptoms, that people couldn't see, that they didn't get sympathy for, that was hard to get answers for. And it's one of the things I try in the book to do is just really show how that lived experience of loneliness is incredibly damaging on its own, and that's why it's so great you're doing this work and that there's now this real community online that there really wasn't when I got sick more than 10 years ago, 15 years ago now, I think, got really sick.

Meghan:
So yeah, just to say that I think I wanted that image of The Invisible Kingdom to be a way of talking about both the reality of that invisibility and then a reminder that there is ... This sounds hokey, but I really believe that there is actual power in our coming together and using our voices to try to make change here, and that's really the only path forward we have, I think.

Mimi:
Yeah. I mean, because I think that invisibility that you're talking about, at least what I have struggled with, is just I feel like I'm just disappointing everybody all the time. Right? I feel like I'm disappointing myself and my goals and what I want to do, or even taking care of myself, or when you don't feel well, the last thing you want to do is have a green drink.

Meghan:
Right. Well, they associate like pizza with it's milky and bready. It's comfort.

Mimi:
Yeah. You just want to have something that's like, whatever. Everything that you're not supposed to have, you want to have when you don't feel well, and then so you just feel like you're disappointing yourself, you're disappointing your family because you can't get out of bed or you can't go pick up from school as much as you want, or whatever. The checklist is forever, or you're disappointing your friends because you bailed last minute or you canceled. That's the part that I feel like is so lonely because you just feel like you can never win.

Meghan:
Yeah. Right. And then I think even when we get flares, we blame ourselves. Right? Even after all this time, we know there's an illness. It's concrete. It's not our fault. Even then, when I get a flare, I still feel like somehow I'm responsible for it, and I think one of the really messy parts of living with a contested condition like tickborne illness is that even as we fight for recognition and we know it's real and we know it's caused these symptoms are very real to us, very tangible, that lack of recognition is incredibly distorting, I think. I think it's hard not to internalize parts of it and to feel to blame in some way, or blame oneself, even though we don't feel to blame. So it's this really distorting experience that is never done being distorting. Right? One thing I remind myself is it's not like I have a grasp on it now. It's constantly changing and constantly demanding new adjustments, new realities, and will, as I get older, too. Right? So I hear you totally on that.

Mimi:
Well, it's hard because I'm looking at you, you're looking at me, and we're like, "Oh, we look fine," right? But nobody knows that right now I can't move my right arm. I can't even brush my hair. That's why my hair looks the way it does. People don't realize it's so invisible that you think everyone looks fine, and they don't. So that's frustrating.

Meghan:
Right. And to give you and your listeners a fresh example, so I'm having a lot of neurological symptoms right now, and one of them is this burning pain. It was so severe I couldn't help rubbing my legs this morning, and clearly there's mast cell stuff going on because my legs turn bright pink, and then now I have little petechiae all over my legs. They're covered in these tiny bruises because something is going on, and no one can see but me. But it was massively painful and took an hour of my morning just to wrap my head around the fact that it was going on, and it would pass, but having to just wait until it passed. Right? And now I look fine, and I'm fine. I'm feeling totally fine right now.

Mimi:
I know. Isn't it crazy how in the morning you're like, "Oh, I feel so bad." Then all of sudden, you're like, "Wait, I feel fine." Then by nine o'clock, you're like, "I feel like crap again." It's like the weather. In California, in the morning, it's cold, but 75 by the midday, and then it's cold again at night in that September weather. But you know what's great about, though, what's happened with Lyme right now, I feel like in the past year there's been ... Not that it's great. I'm not saying that it's great, but there has been a lot of like high profile names, like Justin Bieber and the woman's basketball player, I'm forgetting her name right now. But they've come out, not that it's great that they have it, but the fact that in your book there's also a lot of other books that have come out in the last couple months and you're like, "Wait, at least it's coming to the forefront and that it's being talked about and it's not being hidden anymore."

Meghan:
Yeah. And that's why I've been really careful to use Lyme, but sometimes news outlets want to talk to me about long COVID, and I try to always bring chronic Lyme in and tickborne illness in because I think we have to change that conversation, and yeah, I think I wrote the book to be a companion to all of us who are going through this, both to help with visibility, to make us feel seen and heard, and my biggest dream, I think, is that the reader who reads the book feels seen in some way, but also just to feel like there's a friend on the page who has gone through this. And I really write a lot about what I went through in the hopes that your experience might not be the same, but in some way it makes you feel less like, "Oh, it's just me."

Mimi:
Yeah. And hope, right? Because I think a lot of people who have these chronic illnesses, if it's Lyme, COVID, whatever, they just lose hope in what the future brings because some days you're just like, "I can't do this anymore," or, "The pain is so unreal," or "When is this going to stop?"

Meghan:
Yeah, I know. And then you have the burden of explaining that to others, right? So I wanted the book to do some of that explanatory work for everybody.

Mimi:
Well, Meghan, this has been amazing. Congratulations on your book. So for anybody who's listening, you also have a great website, which is MeghanORourke.com. I'll have the link, also, in the show notes so that they can go right to it, or they can buy it on Amazon. I'll also have the link to the book on the page as well so they can go directly there. And you're both on Twitter and Instagram as well.

Meghan:
Yeah, I am. And thank you so much for having me. This was great.

Mimi:
Thank you.

Mimi:
Each week I will bring you different voices from the wellness community so that they can share how they help their clients heal. You will come away with tips and strategies to help you get your life back. Thank you so much for coming on, and I am so happy you are here. Subscribe now and tune in next week. If you want to learn how I detox and you want to check out my detox for Lyme checklist, go to Lyme360.com/detoxchecklist. You can also join our community at Lyme 360 Warriors on Facebook, and let's heal together. Thank you.