Illustrator and author Eliza Wheeler joins us to discuss the intersection of chronic illness and disordered eating. She shares the unexplained symptoms that led her to try more than a dozen different “wellness” diets, her winding path to an eventual diagnosis of Lyme disease under stringent CDC criteria, why the functional-medicine approach didn’t work for her, how starting to heal her relationship with food has made her chronic illness more manageable, and more.
Eliza Wheeler is an illustrator and author of books for children, and was a recipient of the Sendak Fellowship Award. Her first picture book, Miss Maple’s Seeds, was a New York Times best seller, and her newest book Home In The Woods is based on the true story of her grandmother’s childhood experience of living in a tar-paper shack in the woods with seven siblings and their single mom. Eliza grew up in the northwoods of Wisconsin, lived in Los Angeles, CA for a time, and now calls Minneapolis, Minnesota home. Learn more about her work at wheelerstudio.com, and subscribe to her Creativitea Time Substack.
Resources and References
Eliza’s books
Eliza’s Substack
Christy’s latest book, The Wellness Trap: Break Free from Diet Culture, Disinformation, and Dubious Diagnoses and Find Your True Well-Being
Christy’s online course, Intuitive Eating Fundamentals
Subscribe on Substack for bonus episodes and more
Transcript
Disclaimer: The below transcription is primarily rendered by AI, so errors may have occurred. The original audio file is available above.
Christy Harrison: Welcome to Rethinking Wellness, a podcast exploring the diet culture, disinformation, dubious diagnoses, and disordered eating that are so pervasive in contemporary wellness culture -- and how to avoid falling into these traps so that you can find your own true wellbeing. I'm your host, Christy Harrison, and I'm a registered dietitian, certified Intuitive Eating counselor, journalist, and author of the books Anti-Diet, which was published in 2019, and The Wellness Trap, which came out on April 25th and is now available wherever books are sold. You can learn more and order it now at christyharrison.com/thewellnesstrap.
Hey there! Welcome back to Rethinking Wellness. I’m Christy, and my guest today is the wonderful children’s book illustrator and author Eliza Wheeler, who joins me to discuss the intersection of chronic illness and disordered eating. She shares the unexplained symptoms that led her to try more than a dozen different diets, her winding path to an eventual diagnosis of Lyme disease under stringent CDC criteria (and why that’s important), why the functional-medicine approach didn’t work for her, how starting to heal her relationship with food has made her chronic illness more manageable, and more.
Just a quick heads up that there are some specific diets mentioned in this episode, in the context of discussing why they don’t work. Also, a minor correction to something I said in the interview, which probably won’t make much sense now, but: at one point we discuss something called the Herxheimer reaction, and I said it lasted for around 24-48 hours, but it typically only lasts between 12 and 24 hours. The point still stands that it’s very short-lived, and actually even moreso.
This is a really fantastic conversation, and I can’t wait to share it with you in just a moment. Before I do, a few quick announcements.
This podcast is brought to you by my new book, The Wellness Trap: Break Free from Diet Culture, Disinformation, and Dubious Diagnoses and Find Your True Well-Being, which is now available wherever books are sold! The book explores the connections between diet culture and wellness culture; how the wellness space became overrun with scams, misinformation, and conspiracy theories; why many popular alternative-medicine diagnoses are misleading and harmful—and what we can do instead to create a society that promotes true well-being. Just go to christyharrison.com/thewellnesstrap to learn more and buy the book. That’s christyharrison.com/thewellnesstrap or pop into any local bookstore and ask for it there.
This podcast is made possible by my paid subscribers on Substack. Not only do paid subscriptions help support the show and let me keep making this content for free in the best possible way that I can, but a paid subscription also gets you great perks like early access to every episode, bonus episodes (including one I did with today’s guest Eliza, which will be out on Friday if you’re listening to this the week it comes out), biweekly bonus Q&As, subscriber-only comment threads where you can connect with other listeners, and lots more. Just go to rethinkingwellness.substack.com to sign up. That’s rethinkingwellness.substack.com.
And then one other quick announcement is that my Intuitive Eating Fundamentals course, which you'll hear Eliza mention in this episode, is enrolling a new cohort now, and it's a cool opportunity to join and be part of a cohort with a bunch of people going through the course at the same time, you'll also get access to a forum where you can connect with other people in the forum during the course and some other cool perks as well.
So to learn more and sign up for that, go to christyharrison.com/course. That's christyharrison.com/course. And now without any further ado, let's go to my conversation with Eliza Wheeler. So Eliza, welcome to the show. So excited to talk with you today.
Eliza Wheeler: Oh, thank you so much for having me, Christy. It's so cool to be on here chatting with you.
Christy Harrison: Yeah, I'm really, really excited to talk with you because you have such an interesting story about the intersection of chronic illness and disordered eating, and that's something that I really wanted to get into on this podcast. And we've had conversations, Offline that I just knew were going to be really relevant and resonant to people here. So can you start off by telling us a little bit about your history with chronic illness and disordered eating?
Eliza Wheeler: Yeah, so as far back as I can really remember, starting in childhood is really kind of the place to begin. I had a super amazing family and childhood growing up in rural northern Wisconsin, really surrounded by family and cousins and just a very roaming wild and free fun kind of childhood. But I was also more of the physically timid and emotionally sensitive type of kid, more artistic versus athletic. But as with most kids of the eighties and nineties, I think about my role models as women. They weren't the real women in my life. Strangely, they were Barbies and Disney princesses. And when I think about my history, I feel like I'm an example of having all the love and support that a kid needs, but that body relationship being primarily influenced by diet-culture and beauty standards culturally.
And so I think what I had was Ariel—I'm a redhead, she was a redhead. It felt like, oh, this is what I'm supposed to look like when I get older. So it really started developing my idea of what the ideal woman should be, and then eventually getting older, getting closer to middle school. Those cartoons and toys get replaced by fashion models and actors, and I really loved the teen magazines. My mom, I remember, I think she didn't let me have Teen Magazine or Seventeen, I think she was really worried about the representation of women in those magazines and how that would smartly how that would affect my self-esteem. And so I think I got self magazine when I was a teenager, and I think what's interesting about that is it's still all the same advertising. It's still body size representation was non-existent, and it was still all thin bodies, but sort of cloaked in a health veil, if that makes sense.
I have this really strong memory of a shift that happened between the summers of sixth grade after sixth grade, in contrast to the summer after seventh grade. I remember after sixth grade, it was like summer was biking to my friend Tiffany's house where this group of girls, we would bike to the gas station and buy a pile of 10 cent candy or cheap candy, and we would bet with it playing blackjack and listening to Ace of Bass when it was just the best peak memories there. That's amazing. And then after seventh grade, there was just that shift where you're going through puberty and my body self-consciousness really flooded in at that time, and I wasn't in a large body as a kid, but became slightly larger in middle school than what the height weight charts said, which I don't remember where I saw those, but I just remember fixating on those numbers might've been like gym class or something, a doctor's office possibly. And so that summer, it was just like this fixation on exercising all the time. I have another vivid memory of that same group of girls calling me on the phone asking me to come hang out, and I remember turning them down so that I could do exercises in the basement, which is just so sad. Right. Yeah,
Christy Harrison: So sad.
Eliza Wheeler: Yeah, those were kind of those formative things leading into junior high and high school. And that was when I took up long distance running and vegetarianism. And it's interesting, right, because it's, as with things like Barbies and Disney princesses, there's kind of two sides to that coin where it's like, I genuinely loved these things, but also if you really dig down into them, there's that main motivation of chasing ideals of thinness all the way through. I think that was really from middle school to up to college was when I really struggled with the disordered eating and over exercise. It was something I hid really well. It's not something people in my life really know about. And I think also I never ever lost any significant amount of weight. So I think nothing, there weren't those visual red flags to anyone outside of me.
Christy Harrison: Did people think of you as unquote healthy and not sort of question you because of that?
Eliza Wheeler: I think so, yeah. I mean, really those identities of being a runner and being vegetarian, they can kind of mask disorder through a healthy lens.
Christy Harrison: They're considered such healthy behaviors by so many people. It's an easy way to have the disorder fly under the radar. And for some people, maybe those things are pursued without that disorder. But for a lot of people, I think it can be a sort of red flag actually.
Eliza Wheeler: And I have people in my life who I think fit both of those, kind of the genuine side and then the disordered dieting side. And then when I was 19, and it was kind of near the end of my first year of college, there were two things that happened almost simultaneously. The first being a really great thing, which was that I met my amazing life partner Adam, and he's just the sweetest guy and was so genuinely body positive and so encouraging of me giving up dieting and disordered eating. And I think that experience of having a spouse or a partner who doesn't, they just genuinely don't view or speak about women. And in that objectifying way, I think was a first kind of step towards that, my own healing of the self-objectification that I had learned.
Christy Harrison: That's huge.
Eliza Wheeler: Yeah. But around the same time that I met him was when I started suffering from a really mysterious, and it seemed sudden this chronic illness or these symptoms, I had never had migraines before, and I had this sudden onset of migraines and headaches and of chronic stiff neck and all this muscle tension in my upper body, which was causing some breathing problems and some pretty severe fatigue and heart palpitations and all these joint pains all over the joint pains were the worst in my spine. Anytime I would exercise or use my muscles in a way that was straining, my spine would just become really inflamed and lead to headaches and migraines. And so it was in my memory, I don't know if it's this dramatic, but it felt like in the span of a week I went from training for my second marathon to never being able to run again without triggering this spine swelling response and migraines. So yeah, those were kind of the big bigger issues, but there were also definitely little weird things going on, brain fog and some kind of heightened sensitivity to lights and smells and sound and things that felt more in my brain.
Christy Harrison: Were you able to get help from a conventional healthcare provider? Just even the language you're using of inflammation in your spine makes it seem like maybe someone looked at that and diagnosed you with that At the time?
Eliza Wheeler: What was frustrating was at the time when I went to conventional doctors, I really had the same reaction from each one. It was just like a shrug and a like, huh, well, you're in college, so it's probably just stress. And nobody did any tests and no one MRIs or suggested specialists to see. And so I think because I could see that they weren't alarmed or feeling like this was a serious thing, and so I think I just trusted that, well, if they thought this was alarming, they would look into it or they'd interrogate it more. And I think, of course, looking back, I can't believe the response or the lack of response. I really feel like it was a case of being dismissed because I was a healthy enough looking young female, healthy enough. That very early dismissal of the conventional doctors was really what kind of pushed me through really what became the next 15 or 20 years of diving down a lot of rabbit holes of wellness treatments and alternative medicine.
Christy Harrison: That's so understandable too, because the fact that they would just look at you and say, I think you're fine. It's probably just stress. You're in college and giving no tests. It's so dismissive, and it's the story that I hear so often and that I experienced myself in some ways too, of just being written off because you quote, look healthy enough or you're young or they just don't have any idea what's really going on.
Eliza Wheeler: Or you're female. Or
Christy Harrison: You're female. Or for some folks, another marginalized group, just not knowing what to do with people who don't fit this sort of mold of what they think a person should be like.
Eliza Wheeler: Yeah, easy to treat,
Christy Harrison: Relative, straightforward, nothing out of the ordinary, no symptoms that they don't understand. So I can see why that would lead you into the arms of alternative medicine and wellness culture. And what were some of the things you tried that fell into that realm and what were the outcomes?
Eliza Wheeler: Yeah. Yeah, you could go down the laundry list, I think mean there are things I've forgotten about. I still will hear certain things and I'm like, oh, yeah, I remember trying that. But a lot of it was acupuncture, a lot of different types of chiropractors because I was having these joint muscle structural issues and different herbal vitamin supplement treatments. I did the applied kinesiology thing.
Christy Harrison: For anyone who doesn't know. Can you explain what that is?
Eliza Wheeler: Yeah, can you explain what that is?
Christy Harrison: Because I don't even know if I can. Yeah, I mean, it's incredibly not and just sounds sort of out there to a lot of people I think when they first hear about it. But then if you're desperate enough, it's like, okay, well, I've tried all these other things. What's the harm? Maybe it could help, and I think there's different ways they do it, but for the way that I'm most familiar with, it's they give you a vial of something to hold in your hand or to have it be around you in some way, and then they apply pressure, push down your hand, and if you can't pull your hand back up quickly enough or something, or if you seem weak when you're holding that thing, it's like, okay, you have an intolerance to this particular
Eliza Wheeler: Thing, right? Yeah, yeah, exactly. That was pretty much how I experienced it, and that one I was kind like, I don't know, this doesn't feel right.
Christy Harrison: So you didn't take those recommendations if they said you're allergic to a particular thing or intolerant or whatever?
Eliza Wheeler: Well, yeah. I think what's kind of hard for me to parse out in all of this is that I was doing a whole slew of different types of diets. Diets in the pursuit of curing, trying to cure the migraines and health issues. And so it could have been that I had already given up the things that I was supposedly allergic to or sensitive to, but I don't remember that one sticking for very long. But so some of these different specialists or alternative medicine specialists that I went to would sometimes they would prescribe an elimination diet or some type of special diet, and then others, it was like people would tell me, oh, this worked for my friend, this worked for whoever, me, my friend, or it was finding things on the internet. So I think I counted about a Dozen, different types of special diets that I did to try to heal myself. So a lot of migraine elimination diets, which is kind of removing everything and then one by one bringing foods back in.
Christy Harrison: What was your experience of that? I know in most cases, those kinds of diets are not really evidence-based, but a lot of people do feel, and I know I felt myself when I did elimination diets when I was struggling with unexplained chronic illness symptoms and also having some disordered eating stuff going on, still, I would feel like eliminating certain things did make me feel better, even though much later on I realized it's not really that thing, it's more about my relationship with that food. I was convinced I had a gluten intolerance and I don't have any issues with gluten, but it really felt at the time something was going on with gluten, even though I was kind of questioning it. And after a while I was like, is this making me feel better? I don't really know, but I think there was a strong placebo and no SIBO effect when I first cut it out where I was like, yes, this is helping. It's helping to cut this out.
Eliza Wheeler: Yeah, totally. And I think what feels a little baffling to me looking back is that I didn't even have that experience. Every diet that I went on, the headaches didn't go away, the migraines didn't go away, didn't have periods of relief, though I was definitely, I think with a lot of chronic illnesses, there can be a weird connection with wonky digestion feeling like a symptom trigger or actually being a symptom trigger. And so I think I just kept trying to hone in on that as maybe it's yeast, yeast-free diets, blood type diets, Mediterranean diets, veganism. I went paleo after 20 years of being vegetarian, sugar-free, everything. And so it's kind of wild to me that I did all of that without ever having a seeming improvement. But I also think something that was a factor for me was that I didn't have health insurance and I hadn't gotten any help in conventional medicine and all these diets, it's like it's free. You do it yourself, and they come with these messaging of like, oh, this might be the one magic bullet that you're one magic bullet away from healing. I think also I was over that time absorbing the overall societal messages that weight our health should be within our control. I just felt like I can heal myself and I'm going to battle this. And it was a very approach of sheer force.
Christy Harrison: There's so many things there. So many systemic issues seem like they were at play not having health insurance and being dismissed by the conventional healthcare system, and then this sort of American bootstrappy individualism thing, and more western in general, I think because other countries with western medicine can sometimes fall into this too, but this notion of it's your personal responsibility to fix yourself and fix your health, and it's so sad that so many of those things were acting on you at the same time that you were having these unexplained symptoms and not getting relief and not finding support for them.
Eliza Wheeler: And I think I really believed that diet and exercise would be the things to cure me.
Christy Harrison: So even when you tried over a Dozen diets and they didn't seem to work for symptom relief, it sounds like you still had that belief that, well, if it's not this one, something else is out there, but it will be diet and exercise.
Eliza Wheeler: Yeah, I think for a long time, for many years, that was my perspective, but I also for sure started to really tire of that whole process. And I think the more that I was going down the rabbit holes, the more that I could just feel like there's something underneath all of this that's linking this stuff together and it doesn't feel within my control. So I do think there was under it all voice that was like, it's just something else. So yeah, it's just I think the experience of having an unknown, undiagnosed chronic illness, it comes with this very complicated experience of not really trusting yourself at all.
Christy Harrison: So then after 20 years of that process of that chronic illness and having it be unexplained, you were finally able to get a diagnosis and you got a positive diagnosis of Lyme disease with co-infections, and the diagnosis was approved by stringent CDC standards, some controversy over ing Lyme disease, but you got yours in the most stringent way possible. So I'm really curious what it was like to get that diagnosis finally after such a long road.
Eliza Wheeler: Yeah, yeah. It's really hard to even put into words what it felt like to get that diagnosis at the time. It was just this massive relief to feel like there's clarity, and it's something that seemed at the time, widely recognized and agreed upon. Though I learned later how complex Lyme disease is, but I think the bigger experience of really having that confirmation that this is something that has been so clearly out of my control, something about that just let all of this self-compassion flood in that I think hadn't been there during these years of warring with my body, and I just felt this strong need to give myself all this love and care. And it's also complicated, right? Because Lyme disease is this really massive gray area in medicine from testing to treating it, and the basic literacy about Lyme disease in healthcare is pretty low, I think, because the science and accuracy of testing can be unreliable.
Eventually, I learned that really the only conventional approved approach is to treat with a course of antibiotics, but there are so many cases of people who that didn't work for them. So it kind of feels like, oh, we have this one way that you can maybe treat this, and that does work really well for some people, especially when they catch it early on, but it doesn't totally work for everybody. A way that I heard an infectious disease specialist put it was that in alternative medicine spaces, Lyme is a very over-diagnosed disease, but in conventional medicine, it's an underdiagnosed one. So you have these two approaches of overtreating and undertreating, and there are high chances of misdiagnosis on both sides of the fence, which I didn't know any of that at the time.
Christy Harrison: Yeah, you worked with a functional medicine doctor you said, to get the Lyme diagnosis, right. So
Eliza Wheeler: I did, yeah.
Christy Harrison: What was your experience of the functional medicine approach to Lyme disease, which I really think of functional medicine as being largely in the alternative medicine camp. There's some conventional aspects to it, but really I think it's a lot of, it's more alternative.
Eliza Wheeler: Yeah. I didn't know what functional medicine was at all when I first went to this doctor. It seemed great at first. The way it's described is using the best available science and looking at the full picture of the body. That's kind of how it's pitched, right?
Christy Harrison: Yeah. Treating the whole person, getting to the root cause,
Eliza Wheeler: Yes, yes. And kind of seeing where the intersection of all the systems are. That's sounds great. And it was definitely the very first time I had the experience of feeling really listened to and fully heard by a doctor. Even when I told him about all these diets I had tried, he was totally, I had my boxing gloves on. I was waiting for him to tell me, oh, well those didn't work because X, Y, Z, you didn't do this enough. But he was totally supportive and he was like, well, I think this is good information. We don't have to look into your gut, and this isn't where that's coming from. So it felt like, oh, he is really listening, and I appreciated that. So he was the one who was like, I really think this sounds like Lyme disease in his experience. And so he uses the conventional tests, which is, it's a western blot blood test. Basically. That's the Lyme test. And so my first test came back CDC positive, which is kind of a hard, I didn't know it, but it's actually hard to get that pretty stringent test. Lyme is similar to covid in that you're testing for antibodies to the disease. It's not actually detecting the disease itself. And so I think that makes it kind of complicated. It's almost like the more I learn, the more complicated it is to me.
Christy Harrison: Same. I mean, honestly, I was going to include a section on Lyme disease in my book in the wellness trap, and ended up taking it out because it was so complicated because the more I dug in, the more it became clear that the science is, there's such a divide between alternative and conventional medicine, which is one of the reasons I wanted to cover it because of the sort of wellness traps that I see people falling into in the name of curing chronic Lyme, which even the terminology is so disputed. It's like chronic Lyme versus long Lyme or late stage Lyme. Yeah, it's all so murky, and it just ended up feeling way too, because even with C and sort of the science on long c o, I think there's starting to be some greater understanding of late stage and long effects of Lyme disease that the science is evolving. And so I was not confident committing anything to print at the, that I was writing it.
Eliza Wheeler: Totally. I can totally see why. I think probably it was an Intuitive decision to be like, this is a really evolving thing, and we don't have the picture's really fuzzy, and so it's hard to, you can really only talk about it in nuanced ways because you also have so many people who are just dismissed outright who do have it or misdiagnosed with the wrong things who have it. And then you have so many cases of people being misdiagnosed with Lyme. So yeah, it's just so complicated and you don't want to dismiss so many people who have been dismissed. It's like, yeah, it's so hard.
Christy Harrison: Totally. That was kind of ultimately where I came down with deciding to cut that section was just like, I don't think I can, my goal with the book is to help people who've been dismissed or who've been sort of led down these wellness rabbit holes feel more empowered and come back and feel like they have some greater understanding of their condition and have a little more agency and not feel like it's all their fault or that they could have cured themselves if they just did enough dietary restrictions or did the right diet or whatever, whatever. But yeah, with Lyme, I feel like there's this extra layer in some ways, there's this added layer of medical trauma from the dismissal and the sort of raging Scientific debate around the condition itself and the way that the two sides have sort of dug in. I think there's so much entrenchment in digging in on the alternative medicine side of like, no, this is real
Eliza Wheeler: And we can cure it.
Christy Harrison: We can cure it, and here are these supplements and all these things to do for it. But then there's also a lot of digging in and sort of reflexive dismissal or anger or defensiveness on the conventional medicine side, and it's just so complicated. And even the different groups of medical doctors having different opinions on this,
Eliza Wheeler: It's a debate that's within these different medical fields that's just sort of leaving all of these people out on their own. This particular functional medicine doctor, his approach, when you get into Lyme treatment or the choices, you can go the herbal and supplement protocols first and do that over a long period of time or get antibiotics. And his method, of course, was all the herbal and supplement protocols, and he really convinced me that, oh, the antibiotics so harsh on your system and this is so much gentler, and if this doesn't work, then you can try antibiotics. That was kind of the pitch was like, we'll get there. And so I felt like, oh, it really felt like it made sense. Let's see if this gentler thing works. He kind of threw a lot of science at me that of course I wasn't able to parse out. I mean, through you and your work, I've now learned, oh, all of that science is Petri dish testing. It's young, and I don't know. It was tricky because I just didn't have any framework at all to understand it,
Christy Harrison: And it's often framed as cutting edge science or the newest, latest thing.
Eliza Wheeler: Yeah, this is the newest, yeah, the study is out of John Hopkins University and we're using those. I don't want to paint this particular doctor as I really, really think that he was very genuine in his belief, in his approach, though it did feel like over time what seemed more flexible and open and tailored to me, I think eventually it felt like, oh, this is just his way of approaching this his one way. And that's what is often when people talk about conventional medicine, that's usually the criticism
Christy Harrison: One size fits all. Yeah.
Eliza Wheeler: Yeah, right. And at first I think this seemed very tailored, but I think it kind of was just a more one size fits all approach, but I was really kind of riding high on hope and the care effect that you've talked about was a really big factor for me. He listens to me, he really seems to know his stuff, and I just really trusted that this was the good way to go.
Christy Harrison: And you said you had never really felt that listened to or understood by a doctor, so can definitely understand wanting to go with him wherever he was going to take you. Powerful. And so you did all kinds of supplements and herbs and for a long time, right? I know you said when we talked before that it was a lot longer than you maybe anticipated at first.
Eliza Wheeler: Yeah. I think the way that the program is set up, his program was this is going to take anywhere from 12 to 18 months, and it's doing all of these different rounds of herbal and supplement protocols and then retesting for the Lyme every three or four months. The first six months I felt really sick on the protocol. I'd had a really, really intense chronic fatigue. And the way that this is framed in this case is what they call her heimer effect, and the idea being like, oh, well, this is the die off from the bacteria, and it's making you temporarily sicker before you feel better,
Christy Harrison: Which is a real thing, but it only lasts like a few days at most.
Eliza Wheeler: Oh, is that right? See, I didn't know that. Yeah,
Christy Harrison: That's one thing that I took from reporting that section that I didn't end up using was that the Jish Herxheimer effect or something is the official title, but it was first discovered I think in some other disease related to Lyme disease. I want to say maybe syphilis, I'm not sure if that's right. But in some other related spire keal infection, and those bacteria apparently do give off some toxins when they're dying off, but 24 to 48 hours is generally when you would see that. And it's like when you're on antibiotics, they're dying off. You have that experience of feeling worse for a couple of days and then it's gone. So if it's lasting for weeks or months or years, it's probably not something like that.
Eliza Wheeler: Not that. Yeah. Oh, that's interesting. Yeah. I mean, it was months of just chronic fatigue that was in the chronic fatigue syndrome level, and then of course it's that, oh, this is a good sign. It's showing something's working. That was kind of the feeling. It's like, well, my body's reacting to this treatment. And then after about the six months, I did have a brief period of feeling better and then it kind of quickly leveled back out to really just feeling more of the same. And I did that treatment for 18 months and it was extremely expensive. And the other kind of tricky thing, and I have learned a lot of stuff about this sense, but that first Lyme test I got, the positive Lyme test was the only positive Lyme test I got. And so every subsequent one was negative, but I think with the alternative approach, they say they're reading the numbers and trying to get you down so that the bands that you're testing for are getting lower. And I don't know about that. It was what happened with me. And so he was saying, this is good. It's looking good, but it was like, I don't feel any different. What I didn't know at the time is that getting a positive Lyme test is your best chance at getting prescribed antibiotics at that time, but once the tests are negative, you can't get that prescription any longer. And I didn't know that. And so that really would've been my chance to try them. That's so frustrating.
Eliza Wheeler: Wasted, it was so frustrating.
Christy Harrison: A year and a half of doing something that was ineffective ultimately and didn't get the treatment that might've been effective.
Eliza Wheeler: That may have worked. That is now. I don't even know if I can find a doctor to go there. I don't know if that's available to me. I have been going back into conventional medicine after giving up on that, and I might be jumping ahead a little bit, but I've found a really great new family doctor who listens and believes in my experience, but we're really having a hard time finding a specialist who will investigate the Lyme diagnosis further as a serious possibility. So not getting the antibiotics has felt like a pretty big gap in my treatment. I think also, just to be honest, I think because of getting my diagnosis through the functional medicine doctor and learning how complex Lyme is and how much gray area it is, I feel like I'm still having to stay open to the possibility of misdiagnosis and making sure that I'm really considering all the angles and finding the right people to help me explore all of those. So yeah, it's a tricky part of chronic illnesses. I think they can be moving targets
Christy Harrison: And it can be so tempting. I think too, I know I had a misdiagnosis of PCOS early in my chronic illness journey, and I like the sort of overachiever I am in some ways, I guess I sought out the best PCOS specialist to get treated for what I thought I had. And I think that sometimes specialists get so specialists all across the spectrum from conventional medicine to alternative medicine, people who are really specialized or bought into a particular philosophy or whatever, all of these kinds of specialists can start to see everything. It's like when all you have is a hammer, everything looks like a nail. You can start to see everything through the lens of that specialty just because you're so focused on it. And I think some of that is just human nature. And so this specialist who used kind of an integrative approach and was recommending diet stuff and supplements and everything, wasn't really questioning the diagnosis and was doing some testing that just kind of confirmed the bias that I came in with this diagnosis.
So I think he was just looking to confirm it kind of and found what he was looking for when actually the problem was something totally different. And PCOS is another thing that can kind of masquerade or it's like it's very hard to diagnose and there's no definitive diagnosis as I understand it. It's more of a clinical diagnosis. It's interesting to think about that in regard to your situation where being open to the fact that it could possibly be a misdiagnosis means that you kind of have two potential or multiple potential paths really to go down, one of which is going to Lyme specialists and really focusing in on that. But then the other options are like, what else could this be? And working with specialists in those arenas. Right,
Eliza Wheeler: Totally. Yeah. Yeah. It's just really finding the specialists that is kind of the big right now. The struggle I guess, is just trying to get the right person or the right people. So that's kind of the process that I'm in at the moment.
Christy Harrison: Sounds really hard. And then there's this other piece too I want to talk about of the disordered eating, how working on healing from your disordered eating symptoms affected your chronic illness symptoms. And it sounds like from the conversations we've had, there was some improvement in your symptoms from healing from disordered eating, but there's also stuff that's still lingering, so curious what that looks like for you.
Eliza Wheeler: Yeah, totally. A bright spot in the past few years while getting the Lyme disease diagnosis and trying out that treatment, I got to that place where I was kind of like, I just need to surrender the outcome of all this because I could feel just the stress of so many years of trying to fix my body was creating a lot of stress. And I'll get back to getting into the Intuitive Eating program because that has been such a great experience and help, but I was wondering, could I, there's a piece of the wellness trap that speaks so perfectly to my experience, and would it be okay if I read? Absolutely. Yeah. Thank you. This is chapter eight from Wellness to Wellbeing, which I don't know, is this too much of a spoiler? No, it's a good little taste. It fits so fitting. Yeah. So you write the idea that life is spent in an endless quest to achieve optimized health or to eradicate existing chronic illnesses through some mythically perfect natural approach that isn't actually supported by sound evidence often leads to mental strife and greater stress, and sometimes even to more physical health issues.
The mind body connection is strong, and stress is a well-documented risk factor for a whole host of physical ailments. The disordered eating promoted by wellness culture also can lead directly to problems with digestion and other body symptoms triggering and exacerbating chronic conditions as it did for many of the people we met in previous chapters. Prioritizing physical health can come at the expense of other aspects of life, career, relationships, finances, community, or can become a poor substitute for them. And for many people, it's difficult to dabble in wellness culture without getting sucked into a degree that compromises our overall wellbeing. This is the beginning of chapter eight is so good, just getting to that moment because I think that was where I just naturally found myself landing through that whole process was like, this is making things worse and I just need to do what I can to let go of this picture of mythical healing.
We're still in all this gray area because healing is real impossible, and I don't want to dismiss anybody else's experience. But at the same time, there is this feeling that we can bootstrap our health and healing and control it all through sheer force. And so I think for me, that path of least resistance became, I just want to find what's accessible to me that will soothe and give me relief, not trying to heal this all outright. And so that really got me into letting my body lead from that place of how can I ease my experience of the migraines? And so I went to a pain medicine doctor and I got new medication for migraines, and it works great. And over the 20 years, even some conventional doctors that I saw were kind of like, that's the last resort. We'll try all these other things, breathing techniques and stress reduction techniques, and those things did help me.
Those are soothing things for me, but it's just interesting that something as simple as getting on a great working medication, which isn't the case for everybody, but because I'm lucky in that it's worked for me, it's taken so much chronic stress and the constant vigilance out of my daily experience. I think for the past 20 years since I started getting migraines, I've spent about a week a month either having and recovering from a migraine, and since finding a medication that works well for me, it works. I know it's going to work. It takes the stress out of that experience and has really given me back so much in terms of chronic stress in managing that.
Christy Harrison: That's huge.
Eliza Wheeler: Yeah. Yeah. It's so
Christy Harrison: Sad that that was withheld from you by, in some ways, by all the doctors you saw because it's pursuing it through diet. Pursuing recovery through diet is withholding the pain relief of the medication and then doing breathing exercises and other things that again, were helpful, but not to the degree that this is. It was like, why not just add that in or give that to you as an option?
Eliza Wheeler: Totally. I think slightly complicating factor of that is that the technology in migraine medication was not as good at the times that I was trying that I had tried a few medications, so in those years I had tried some of the main ones and they didn't work for me, so it was kind of complex where the particular migraine medication I found that works is a new class of migraine medication, so I really took that last resort message to heart. I have to do everything humanly possible before I do that, and then just being so respectful of my body's needs has been this massive influence overall and doing the Intuitive, Eating and Intuitive movement, being really gentle with movement has been big for me and allowing a lot of rest and Feeding myself earlier. That was a big thing in your course. That was kind of an aha moment was like, oh my gosh, some of these old diety things that I didn't even know were under the surface, were still there. I realized I need to feed myself a lot more earlier in the day, and it really affected my experience of the symptoms a lot more.
Christy Harrison: Yeah. I know you mentioned to me that learning symptoms of hunger can include fatigue and headaches. Was a big light idea, light bulb for you? No idea. Yeah. Yes.
Eliza Wheeler: It was like stomach grumbling is hunger, right?
Christy Harrison: How so many of us think about that, it's so wild.
Eliza Wheeler: Yes, yes, yes. These things put together has really helped in that overall experience and just the overall recovering from diet and wellness culture like your podcasts and books, introducing me to all of the voices and the Fat Liberation and body acceptance movement. I think getting me to that place where it's kind of putting a balm on those very old wounds of unworthiness and about body size or unwellness and being able to let that go and untangle them, I mean, it's a process for everybody, but just replacing all of that every day with a lot of self-love and care and just really letting my body speak a lot more and have such a bigger say and give it the respect that it needs and has been so huge.
Christy Harrison: That is so beautiful, and I think a really lovely note to end on. So thank you so much for sharing your story and everything you did and with such nuance and compassion, and I think people are going to really resonate with this. Can you tell us where people can find you online or learn more about your work and what you do for work in your non chronic illness life?
Eliza Wheeler: Yes, yes. I didn't, we had so much to talk about. I didn't get into that all. I'm not in the health field. I'm a children's book illustrator and author. You can see my work@wheelerstudio.com. I'm WheelerStudio on Instagram, and I just started a cute newsletter on Substack for creative folks. That's called Creativity Time, and I also started a separate account on Instagram. It's been mostly for me just to connect with the body acceptance and fat liberation community so that when I just need to see all those messages and those voices, I can go to that account and listen on there. So I would love to have Body Liberation Friends. It's at Body Lib Illustrated.
Christy Harrison: Nice. Yeah, that's great. I'll put links to all that in the show notes so people can find you, and thank you so much again for being here. This is really lovely conversation.
Eliza Wheeler: Oh, thanks so much, Christy. I'm really honored.
Christy Harrison: So that is our show! Thanks so much to our amazing guest, and to you for tuning in. If you've enjoyed this conversation, I’d be so grateful if you could take a moment to subscribe, rate, and review the podcast on Apple Podcasts, Spotify, or wherever you’re listening. You can also support the show by becoming a paid subscriber for just a few bucks a month. With a paid subscription, you unlock great perks like bonus episodes, subscriber-only Q&As, early access to regular episodes, and much more. Sign up now at rethinkingwellness.substack.com. That’s at rethinkingwellness.substack.com.
Got burning questions about wellness trends, diet fads, or anything else we cover on the show? Send them my way at christyharrison.com/wellnessquestions for a chance to have them answered in the Rethinking Wellness newsletter or even on a future podcast episode.
This episode is brought to you by my new book, The Wellness Trap: Break Free from Diet Culture, Disinformation, and Dubious Diagnoses and Find Your True Well-Being, which is now available wherever books are sold! Just go to christyharrison.com/thewellnesstrap to learn more and buy the book or just go into your favorite local bookstore and ask for it there.
If you’re looking to heal your relationship with food and break free from diet and wellness culture, I'd love for you to check out my online course, Intuitive Eating Fundamentals. Learn more and enroll now at christyharrison.com/course. That's christyharrison.com/course.
Rethinking Wellness is executive produced and hosted by me, Christy Harrison. Mike Lalonde is our audio editor and sound engineer. Administrative support is provided by Julianne Wotasik and her team at A-Team virtual. Album art by Tara Jacoby and theme song written and performed by Carolyn Pennypacker Riggs.
Thanks again for listening!
How Disordered Eating Can Play Into Chronic Illness with Eliza Wheeler