The One You Feed - When Your Health Feels Like a Rollercoaster: Finding Stability in the Chaos of Chronic Illness | Amy Kurtz

Starting point is 00:00:02 The goal isn't perfection, but that on the other side of really full-blown stress responses, you can get to a place where you are so intimately connected with yourself that if something comes on, you know how to deal with it. You are empowered. You're in control. And that it will never feel as big as a tidal wave again to the point where the real lesson is that's what life's all about, getting knocked down, getting back. back up over and over and over again.

Starting point is 00:00:44 Welcome to the one you feed. Throughout time, great thinkers have recognized the importance of the thoughts we have. Quotes like garbage in, garbage out, or you are what you think, ring true. And yet, for many of us, our thoughts don't strengthen or empower us. We tend toward negativity, self-pity, jealousy, or fear. We see what we don't have instead of what we do. we think things that hold us back and dampen our spirit. But it's not just about thinking.

Starting point is 00:01:13 Our actions matter. It takes conscious, consistent, and creative effort to make a life worth living. This podcast is about how other people keep themselves moving in the right direction, how they feed their good wolf. I'm a big fan of the serenity prayer, except what you can't change, change what you can. The problem is we act like everything goes in one column or the other. But a chronic illness is in both columns. There's acceptance work and there's change work, and we don't get to just pick one of them.

Starting point is 00:01:48 Amy Kurtz knows this territory. She saw 36 doctors before one finally diagnosed late-stage Lyme disease, and her new book, But You Look Fine, Trapped in the Hell between Sick and Well and How to Break Free, is about the gray area our culture pretends doesn't exist. I'm Eric Zimmer and this is the one you feed. Hi, Amy, welcome to the show. Thanks for having me. I'm really excited to have you on to talk about your new book called But You Look Fine, Trapped in the Hell between sick and well and how to break free.

Starting point is 00:02:27 There's a great song in that title too. A songwriter could write a great song. You've given them a fair portion of what is necessary, by the way. No one's ever said that. Do you want to write this song? Well, maybe. Yeah. I mean, so I used to be a songwriter and I haven't written a full song in a long time. I still compose music. I still occasionally write poetry, but I haven't put the two together in a way. It feels like something that has just slipped beyond my grasp. It's more that I would need to recommit myself to the process, just like anything. I have to learn how to do it again. So maybe this will be the one that

Starting point is 00:03:04 I write. We'll see. However, before we get into more about songwriting and your book, we'll start like we always do with the parable. And in the parable, there's a grandparent who's talking with their grandchild. They say, in life, there are two wolves inside of us that are always at battle. One is a good wolf, which represents things like kindness and bravery and love. And the other's a bad wolf, which represents things like greed and hatred and fear. And the grandchild stops. They think about it for a second, They look up at their grandparent and they say, well, which one wins? And the grandparent says the one you feed. So I'd like to start off by asking you what that parable means to you in your life and in the work that you do.

Starting point is 00:03:48 I love this so much. It's so thoughtful. It makes me think of what I think about often, which is to everybody's light, there is dark. And even when you meet the brightest light, there will be the opposite. but everything that we are is love at our purest, most innocent place, like when we come into the world. And to me, the key is hanging on to that pure, unconditional love for yourself and for everyone around you.

Starting point is 00:04:24 That's a beautiful, beautiful perspective. So I want to talk about your book and get into the day. details of it. But first, I mean, the title makes it clear that you have been trapped in the hell between sick and well, which means you've been sick. You've been well. Talk to us about the sickness part of it so people understand kind of what led you into this. Okay. I'm going to preface it with this is intense. Okay. When I was 14, I started having debilitating back pain. And I went from being a carefree, energetic, vibrant young kid to being a 14-year-old girl, which is hard enough on its own, and then add to it this sudden bout of really intense back pain.

Starting point is 00:05:18 And nobody could diagnose what the root cause of it was. I now know later that it definitely was Lyme disease. But at the time, no specialist that I saw and it wasn't for. lack of privilege or being able to see good doctors, but nobody could diagnose what it was. And so the approach was just to like mitigate the pain with anti-inflammatories and stuff that like kind of worked, but not really. And so that was the first moment in my life where I really experienced like a major pivot where I felt like I went from being carefree to always being aware of being in physical pain. And then when I was 25 after college, which I think is another really pivotal

Starting point is 00:06:04 part of your life where you're figuring out who you are and who you want to be in the world, I went abroad and I got very sick, probably from something I ate, but it was really just the tipping point. And it sounds as intense as it is. I gained 30 pounds and 30 days. I could barely catch my breath. My hair was shedding. I couldn't keep food down. My body was in a complete emergency. I was literally walking to the top of the Masada in Israel behind all the elderly people going, oh my God, something is seriously going wrong. And I ended up moving home with my parents at 25 and going to doctor after doctor that just wasn't giving me clear answers. And I knew that something was so wrong and I could barely get in to see people. And I realized in that moment

Starting point is 00:06:55 that I had to take my health into my own hands. And so I went from seeing primarily Western-minded physicians to Eastern, and now I've landed somewhere in the middle and respect both. But I got diagnosed with things, but not things that were totally it. Like I have hypothyroidism. That's real. Taking medication for thyroid made me feel so much better. But I can look back at that period of my life and see that I was treading water.

Starting point is 00:07:24 and that my baseline had just shifted and I didn't really know what normal should feel like anymore. And it was in that time that I wrote my first book, Kicking Sick, because I remember sitting on the floor of my parents, my old bedroom in my parents' house at the time. And looking for a way to help myself from this intense fatigue. I went from this like vibrant person to a shell of myself and my world became the size of a hospital room. and I was looking for something to help my spirit while I was physically suffering. And all I could find was how to be sick and tired. And I just was never going to accept that narrative for myself. So I decided to take all of my pain and my hard experiences and create a resource guide for people.

Starting point is 00:08:17 At that time, specifically women to thrive through a challenging experience that could otherwise be extremely sidlining or life defining. I really wanted it to be transformative and empowering. But it wasn't until the press of that book that I realized I don't have a handle on what's going on. And I felt like such a fraud. I looked like the picture of glowing health and happiness on the cover of that book. And I would come home from press that was beyond my dreams for what that book could be. And I will come home and just crash and feel like I took this mask off my face. And I was having almost an internal crisis of like, I have to keep going. I have to find the energy.

Starting point is 00:09:03 I'm not well enough to do it. And I feel like a faker. But I thought I was better before I did this. So it was really confusing. And it made me decide to go to my 36th doctor. That's a lot of doctors. That's a lot. But something inside of me knew that something was wrong.

Starting point is 00:09:22 and I listened to my instinct and I did a lot of research and found a really wonderful doctor. And you have to bring all your medical records, which for me was like a Harry Potter anthology of medical labs. It's the story of the dementers is basically what it's called to keep the Harry Potter analogy going. And it also is, it's painful to go from doctor to doctor and feel like you might leave. disappointed or heartbroken. Yeah. But I believed in myself and this doctor had a really good reputation and I did whatever I could to get in to see him.

Starting point is 00:10:02 And he did all the tests again and said, I'm super clear on what's going on here. And I'm like, you are? Because nobody had ever said that to me before. And he said, you have late stage Lyme disease and co-infections. And the hard news is that the treatments are really hard, but the good news is you will feel like you have another body. I was just like dumbfounded, but everything inside my body knew it was true. It was like it reverberated through my entire being, and I just knew that I had finally gotten the right answer.

Starting point is 00:10:34 And I was so proud that I hadn't given up on myself because it would have been very easy to many times. Yeah. But I also felt a tremendous amount of grief for the years of my life that were so singularly focused on getting better. This is speculation and probably not even an important speculation, but I can't resist asking. Do you think that the reason it took that long to get that diagnosis is because we didn't know as much about Lyme disease when you started this as when you finally found a doctor? Wasn't that your doctors were incompetent. It's just that we didn't, this was not on people's radar in the same way that it is today.

Starting point is 00:11:13 Well, first of all, I grew up outside of Philly, so I grew up in the Lyme Belt. And yet no one I ever saw ever talked about Lyme in my personal life or at any of the doctors. It just wasn't something in the 90s that was ever talked about. Exactly. Yeah. Like at all. Like at all. Yeah, exactly.

Starting point is 00:11:29 It was not. Yeah. But I also feel that we're still significantly behind. And, you know, in recent years with it growing into such an epidemic and celebrities becoming public and saying that they have Lyme disease, it has finally gotten the attention that it deserves. Yeah. But it's a very complicated disease.

Starting point is 00:11:47 and it's known as the Great Imitator. So it's very hard to diagnose if you're not seeing a Lyme literate doctor. I saw fantastic doctors for the most part. And it just took me getting to a specialist with complex chronic disease to be able to diagnose it correctly. The great imitator is a very interesting term. It's also creepy. It's a creepy term, but it also makes me think of lots of other things that, like when you get into some of these conditions, and you just described it perfectly, like you get overlapping issues that you can't

Starting point is 00:12:24 figure out which is which. Oh, it's my authority. It does need fixed. Okay, well, that it does make things better. But that wasn't all that was happening. And I think about this a lot in the areas that I spend more time, like depression, addiction, anxiety. There's often so many causes and conditions under there, you start peeling one off and it's like, it's a little bit better, but it often feels like these things imitate each other to a high degree. You know, like fatigue is one of those things that's like almost every condition you describe, fatigue is in the heart of it. So you're like, well, that doesn't seem to narrow anything down.

Starting point is 00:13:04 Yes. Right? It's just tricky. Mm-hmm. Yeah. It's true. I agree. Okay, so back to your story. You've been diagnosed with Lyme disease finally, and you start the path towards recovery from that.

Starting point is 00:13:22 Yeah, so I just knew that it was true, and I started to do the treatments, and they were really hard, but then I started to feel better and better and better. But once I physically started feeling better, I started to feel bad in a whole new way. And I didn't even know what I was feeling because I've always been into self-development. I've always been a seeker. And I'd been in therapy. But I just couldn't even name what I was experiencing. And what I was struggling with the most is that our society says you're either sick or you're well and that there's no space in between. And if you're well, you should be grateful.

Starting point is 00:14:03 That's the messaging. But it was impossible for me to not have. have a reaction to what had happened to me. And 194 million Americans have at least one chronic health condition. That's not even including the acute conditions. But what I really started to think about and experience in my own life was that I had been in physical survival stress for so long that my physical body was better, but my mind didn't get the memo.

Starting point is 00:14:37 And I didn't know what I was experiencing because nobody had ever told me that this might happen. And it wasn't until my husband took me on the worst date ever and said, maybe worst best date now because it really helped me. He said, I feel like there's another phase of this that you're struggling with. You've been through so much and it's incredibly traumatic. And it was like when he said it, I was sort of dumbfounded. And then I just started thinking and thinking. And I was like, wow, yeah, all the invalidation, all the gaslighting, the years of my life lost, the grief of trying to process who you thought you'd be and what you had wanted for your life. It was so intense.

Starting point is 00:15:24 But when you're in survival, you just shelve all the bad behavior, all of the hard things because you don't have time because you have to deal with the problem. And it was like once I finally got back. better. Everything else came up for the taking. And I was experiencing extreme debilitating anxiety, hypervigilance, obsessiveness. I was so afraid that everything was going to come back and that it wasn't going to stay the way that it was. And I just couldn't figure out why I was so tense all the time. I ordered a great linen shirt from Quince recently. I loved it, but now my partner, Jenny, has absconded with it because she seems to love it even more, which tells you, two things right away. First, the shirt is great and secondly, I no longer own it. But I get why. Quince

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Starting point is 00:17:12 Quince.com slash feed. I've often said that depression hates a moving target, but there's a cruel irony in there because moving is one of the hardest things to do with depression. And similarly, when we most need a therapist, it is often when we have the least ability to sort through the complex mess of finding one, which is why I'm such a big fan of what Alma is doing. They've made the search part simple

Starting point is 00:17:37 because that's often the thing standing between us and getting help. Alma has a directory of over 26,000 therapists, and you can filter by things that actually matter to you, like specialty, identity, life experience, therapeutic approach. And critically, you can put in what insurance you have and it will show you therapists who take that insurance. Over 1 million people have found care with Alma and 95% connect with a therapist within a week.

Starting point is 00:18:04 If you've been thinking about starting therapy or getting back to it, I'd recommend checking out Alma. Get started at helloalma.com slash feed. That's H-E-L-L-O-A-L-M-A-M-A-D-E-M-A-D. I want to hit on a couple things there real quick. We're going to move into the phrase that you've coined to describe what you're going through, but I want to go back to this trapped in the hell between sick and well, because I think this idea of you're either sick or your well is just another of the binaries that we tend to try and put everything into that are actually not real, right? I mean, there's just all these different places. such a spectrum in between those and it is really difficult sometimes to wrap your head around so i'll give you like my own example right so i used to have really debilitating depression i don't have that now but i do have a certain degree of anhadonia right which is a depressive symptom i have

Starting point is 00:19:10 restless leg syndrome which is mostly well treated except when it comes back and i can't sleep for two weeks right so i'm not quite fully well but i'm also not sick in the way that i once was with both those conditions and i do think that there's a lot of nuance that goes into how to think about that like how do i be grateful for the parts of my health that are good without denying the challenges that i'm having like how do i balance both of those things i think is something that you talk about a lot yeah i i really struggle with that binary and i feel like I was so confused because I felt physically better than I've ever felt in my life. I actually feel like I'm Benjamin Buttoning. I love aging more than anyone because I've already felt like I was

Starting point is 00:19:58 100. So it's just getting better and better. But my mind was struggling in such a different way. And when it comes to illness, it's really a mistake to buy into this fallacy that once the illness is over, you'll just be back to your old self. I mean, everybody says just get back on the horse. There is no horse. The horse left so long ago. Yeah, there's no back to normal. Yeah. And there's this weird place where you're not sick enough or people say you look fine. Yeah. But you're not well either. Yep. And that feels like a fresh hell to me. And I just feel like it's so important not to pave over your pain from whatever that's from because putting on a happy mask for the sake of others is only isolating yourself further. I really feel we have a loneliness epidemic in our country

Starting point is 00:20:49 and I can't think of anything more lonely than living with an invisible illness that other people can't see. I mean, it's just really a mistake to accept the notion of the binary you're either sick or your well. And it's not black and white. And the truth is that people are really suffering in the gray. And I was experiencing a psychic suffering that I could not explain because it hadn't been named. So you went on to name it. So let's move there. What do you call this? I named this medical trauma brain or MTB. And it is the emotional, neurological imprint of having lived with a debilitating health condition. And I named it because I couldn't find it.

Starting point is 00:21:41 And I kind of think it's funny because it's sort of obvious when you think about it. Because how many people do you know that, I mean, for me, I had people in my life and people that I interviewed that had, you know, debilitating migraines. It wasn't until I told her this idea that I had and how I was feeling that she admitted that she actually realized she doesn't have migraines anymore, but at the onset of any symptoms, she was already in a dark room, racing for impact. The same thing happens after a cancer patient's in remission and they go back for their scan. The same thing happens if a Lyme patient is better and they have a twinge of joint pain.

Starting point is 00:22:21 It's like you go from zero to 11 and there's no way to stop the fear looping. And so I interviewed a lot of physicians. And I said, have you seen anything like this? These are really great doctors. And they would say at first, well, you know, now that you say it, yes, there are those patients that get better, but they're not acting as if they're better. And I'm like, that's exactly what is it called? And nobody could tell me.

Starting point is 00:22:52 And so then I started researching a lot for what became this book. It's not exactly post-traumatic stress disorder because that's usually based on a singular traumatic event. It's also not complex post-traumatic stress disorder while that's closer and sort of like it's sister from another mister because it's when the event happens over and over and over again. But what I was naming an MTB is the threat is your body because you no longer feel safe. And the way that that feels to me is a place I call the Shadowlands where it was like my body was out to top us with my friends, but my mind was locked in a sandstorm desert so far away with no way out. And I didn't, I just sort of felt like I was in the upside down world in stranger things. I didn't really know what was happening, but I know I wasn't fully there. Yeah.

Starting point is 00:23:49 that is a really important naming of a particular thing, I think. I don't know what's widespread out there. I just do a show, and to me, all these ideas seem normal now, right? But, I mean, I had a bunch of people on over the years chronic illness, chronic pain. And certainly a big threat of that is the mental and emotional component that we're stacking on top of. And I don't want to make that sound like a blame thing. That's not what I'm saying. I'm just saying there's a big component of.

Starting point is 00:24:19 all this that is mental and emotional but you're naming something very very specific right which is this accumulated trauma of really you know having your life just completely upended for so many years and all the things you mentioned not being believed not knowing i mean not knowing is hard right i mean it's really hard to be like i don't know what is wrong with me something clearly is but i have no idea what it is. That's really, I mean, we just don't do well with that as humans. I love how you said that because it's true. I think one of the biggest, at least for me with my anxiety, was lack of certainty. Yeah. Yeah, life is uncertain all the time, right? But in these conditions, it's particularly exacerbated. We're focused so much on this thing, which is consuming all of our time, our energy,

Starting point is 00:25:14 or thoughts, it's, it's overwhelming. So to be uncertain about that is different than being uncertain about whether my job is going to exist. I mean, that's a pretty high level of uncertainty that a lot of people are living through. But health is its own creature, right? There's that old saying, like, I don't remember exactly what it is, but it's basically like once you become unhealthy, you don't think of anything else. It's the only thing.

Starting point is 00:25:40 So to be uncertain about the primary factor of your life is really difficult. Wow. Yeah, that's true. It's really hard. It feels like a rug is ripped out from underneath you. So I want to explore this idea in a couple of directions because you lay out this basic idea, which I think we've covered well enough that people understand it. We may go into some of the specific ways it shows up, but I want to explore it through two lenses, right? Because one lens is the one you're describing, which is I got better. Maybe not all the way well, right? We recognize we're somewhere on a continuum, but I am significantly better than I was. And thus, I have resources to begin the healing process from medical trauma brain. There's another class of people, though, that are not necessarily getting well, right? They're in what you would call survival mode. And yet, I think for people that are in, that place, having tools to work with what's happening emotionally and mentally is valuable work. And so do you think that the ideas of, you know, medical trauma brain as in I'm kind of looking back

Starting point is 00:26:58 on it versus being in it? How does somebody who's still in it work with this? Oh, I mean, I really feel like I stepped out of it after I finished the book. and that doesn't mean that I don't still get triggered, but it just means that I get triggered less. And I really wanted to first name an experience that millions of people are living with and don't have language for. I want to validate them, that I see them, I understand them, I am them, and I believe them. And that's one of the most important parts of healing. But I also wanted to interview some of the world-renowned experts on mental health and trauma, therapy, and somatic experiencing because I wanted to give people resources. I also wanted to allow them to make their own toolkit.

Starting point is 00:27:53 And a lot of the things that are in the book, you can find free online. I mean, if you can see someone, a counselor, a therapist, I highly recommend it. I honestly think everyone should be in therapy. it's an extremely healthy thing. But I really wanted to provide a full framework for all of the things that they could start with. And for me, I started with cognitive behavioral therapy. I mean, I was having debilitating anxiety. I couldn't think of anything but fear.

Starting point is 00:28:23 And I don't even think I said that in the book, but that's how I felt. And that was great. And it was helpful. And it gave me tools for how to understand my stress response. and take my stress level down. But then there was another component that you can't push through, which is trauma. You cannot out, you can't train your brain to push through pain like that. And then I spoke with somatic leader, world leader, Peter Levine, and he gave a lot of exercises.

Starting point is 00:28:56 Just simple things you can do to orient, to tie treat, to teach you how to slowly reconnect with your body because for me when I was in survival, I went into this experience listening to myself. I got myself to the doctor. I knew something was wrong. However, with the experience of really pervasive long-term illness, I had started believing other people more than myself. And one of the things that I hope people get out of reading this book is that it's imperative

Starting point is 00:29:31 that you understand that an experience like this, whether it's acute or chronic, that feels like the rug has been ripped out from under you, your entire life has changed, and everything you thought it would be, that is a trauma. And the only way you heal from trauma is nervous system regulation. Check in for a moment. Is your jaw tight, breath shallow? Are your shoulders creeping up? Those little signals are invitation. to slow down and listen. Every Wednesday, I send weekly bites of wisdom, a short email that turns the big ideas we explore here in each show,

Starting point is 00:30:12 things like mental health, anxiety, relationships, purpose, into bite-sized practices you can use the same day. It's free. It takes about a minute to read, and thousands already swear by it. If you'd like extra fuel for the weekend, you also get a weekend podcast playlist. Join us at one you feed.net slash newsletter.

Starting point is 00:30:34 That's one you feed.net slash newsletter and start receiving your next bite of wisdom. All right, back to the show. So I want to back up a step or two because this is all really good. But I want to go back to therapy and then CBT because CBT is a form of therapy. So you said you'd been in therapy, talk therapy for a long time. And maybe that was beneficial. Maybe it wasn't. but it was the CBT that sort of was a really important part of therapy.

Starting point is 00:31:04 And CBT is a talk therapy. So talk to me about the difference that you found when you were doing general therapy and CBT. Well, I don't want to knock anything, but let's just say I had been in talk therapy for 10 years before I realized how anxious I was and how much it was controlling my life. And I got a lot of things out of it. But I do feel it's really important if anybody is seeking a therapist. to work with someone who understands complex illness because I think that's just such a major

Starting point is 00:31:35 part of being able to process what's happening to you is to have somebody who really gets you. That's the most important thing I think in finding a therapist or a doctor is somebody who really understands you and who believes you. Cognitive behavioral therapy I started because I had read that it was really good for anxiety and it gave me a framework for which to help myself. And so much of having been a patient was so disempowering that it empowered me to help myself. And that felt really good in itself. Like just the framework of it made sense to me because it allowed me to get in the driver's seat

Starting point is 00:32:16 and try to understand my mind and the way it works and how I can get stuck in a fear loop. I go to worst case scenario when I get scared. And I learned tools from the sud scale to the maybes to the talkbacks that really helped. And I actually interviewed a really wonderful CBT therapist in the book that gives readers a bunch of tools that they could start with. But for me, that was really key as starting to learn, okay, will this matter in two weeks, two months, two years? Is this actually an emergency? Because what had happened is, I name this in the book, but my survival stress I call Super Freak, because when I get scared, she flies in with like a cape, glasses on sideways

Starting point is 00:33:06 and will alert me like everything is an emergency. Everything is danger. And now I can kind of be like, okay, let's evaluate reality here. But for a while, I couldn't. I felt like I had become that. And I had to work really hard and commit to myself because I wanted better for my life. And I didn't want to feel like there was this ghost following me around everywhere I went. So I want to say what CBT is just for anybody who doesn't know.

Starting point is 00:33:57 And this is going to be a summary that hundreds of therapists will probably object to. But it's basically the process of learning to see the ways in which your thoughts are distorted and how to counter those or replace them. And so you gave the five hours, five days, five weeks, which is one of my best all-purpose tools. It's in my book for how to deal with like stuff that happens. When I find myself getting agitated, I'm like, is this going to matter in five hours, five days, five weeks? And the answer almost always is no. Yeah. And if it is, if the answer is yes, that's good to know too because then I'm like, oh, well, this actually does matter.

Starting point is 00:34:34 This is worth spending time on. So that's one tool. You mentioned the maybes. What are the maybes? Well, I can just, if I got stressed, I would go from zero to 100 so fast. And I really would have to question my fears. And something that I did was just saying them out loud ridiculously, like 10 times in a row. And it just kind of made me laugh.

Starting point is 00:34:58 Like, this is so absurd. Like, this is not going to happen. But also, I think I've really learned that space is really important. So if you have a knee-jerk reaction to act or that you're triggered or you want to respond in a way or for me, manage something or control it, I just say to stop, drop, and roll and wait an hour. And if you can, wait asleep. Because you will be shocked at how much your stress responsible turn down if you give it a little spaciousness. When we get stressed, it can feel like such an emergency after you've been through something like that. And so the maybe is when you have a thought like this is a complete disaster, you say, well, maybe. Maybe it'll be a disaster. Maybe it'll be a disaster. Maybe it'll be a disaster. Or maybe it won't. Maybe it won't be. Maybe it will be great. Maybe it will be great. Yeah, you may have heard it. And I know listeners have heard it to some degree. I won't repeat it. But if you don't know it, you'll love it. It's an old story of a Chinese farmer. That's an old Taoist story. So anyway, you could look that up. Listeners, you could look that up also. Oh, it's probably been told in these shows, you know, 50 times over the years.

Starting point is 00:36:11 Okay. So now we've got CBT and we've got a way of working with our thoughts and going, oh, that might not be right or I could think about it a different way. All powerful stuff. And yet, anybody who's done this consistently will recognize there are times when your brain is not having it. Right? It just basically builds a stronger case, right? It just goes, no, you're wrong. You don't understand and here's why.

Starting point is 00:36:38 And it just, it almost escalates the situation. And I think that what you're saying is this is the trying to push through trauma part. You can't. You can't outsmart it. You can't push through it. It will actually make you so much more stressed out if you try to push through it with your brain. Because trauma is stored in the body. And what I learned for myself and in all of my research for this,

Starting point is 00:37:05 project, I learned that unless you start to listen to what your body is telling you on a very basic level, that's also the thing is when you've dealt with illness or any kind of adverse experience, you get very disconnected from your body's messages. And especially in the world, we live in, we live in such an external facing world and such a push through, be resilient. You know, there's so much on achieving instead of tuning in. And I found that it was impossible to recover without starting to learn how to check in with myself when I felt stressed out and see how my body was feeling and what it was trying to tell me and practicing breathwork and, you know, reading books by like the brilliant Gabor Mate and Peter Levine helped tremendously. Mm-hmm. Okay, so we're kind of in the tools, and I think that's a reasonable place for us to be. So a lot of times tools like what we're talking about here and even the show talks about the idea of resilience. Those tools can help you become more resilient. But you talk about something called the resilience trap. So share with me what that is.

Starting point is 00:38:24 for me i always thought that being resilient was such a great thing to be and i always saw myself as so resilient and the truth is if you're dealing with an illness or a mental health challenge or anything you have to be resilient because nobody cares more about you getting better than you and also within the medical system a lot of patients feel lost in this gray abyss instead of being understood in black and white terms. And so it demands that you be resilient if you want to get to the other side. And toxic resilience comes in when you have to constantly be resilient. It's like being on a stress hamster wheel. And it locks you in fight or flight and your brain gets rewired. And if you don't realize this and realize that recovery from illness is so, you're

Starting point is 00:39:22 important, you won't ever unwire what just happened. You can't. Would you say that that is a form of, I'm putting words potentially into your mouth, of performative resilience, right? It's the, I have to be fine. I have to tell my doctor, I'm doing good. I think some of it's probably that, but what else is in there? Well, that's a really interesting question that nobody's asked me, which is we're taught when we're young that in life you should choose authority over authenticity as a child. You need your caregiver or the adult. So you oftentimes, if there's bad behavior or if things go wrong, you choose attachment

Starting point is 00:40:10 over authenticity. But the problem is when you're an adult and you're within this medical landscape, you also need the doctor. And so I think that pattern can repeat itself. And part of the recovery period is learning how to be authentic and that not every doctor that's the best is the best for you. And being a patient is extremely disempowering. I forgot what your other question is.

Starting point is 00:40:42 Is it performative resilience? Oh. In some ways, it's performative, but also you learn very fast if you have an invisible illness that nobody's going to handle it if you don't step up to the plate. And within the landscape that we're in now, we're not set up to handle all of these complex chronic conditions. I mean, patients barely have time to be with a doctor for 15 minutes now. There's not, there's so much stress and emotion that goes into even just the doctor visit. And then they're finding the right doctor. So I think at first maybe it becomes performative. For me, it was. But then it became, oh, shit, if I don't deal with this myself and manage everything and make sure everyone's talking

Starting point is 00:41:35 and be like handle the burden of all of it, then I'm not going to get better. Yeah. And that's unfortunately kind of a reality, right? You have a line that says patients are 50% of the healing team and 100% responsible for how they treat themselves, making self-advocacy not optional but essential. I think the medical landscape is disempowering for patients. And what I hope that people get from my messaging and from my books is that you have to step up to the plate. You have to be in the driver's seat. If you feel invalid, and misunderstood or dismissed, move on. You very rarely would marry the first person you go on a date with.

Starting point is 00:42:19 It's the same here. It's just that you have to be really clear with yourself in a different way. What do I need in a doctor? What's important to me? And my list is going to be different from everybody else's. But you can feel free to move on if you don't feel like you're being believed and while taking care of. You don't have to just accept care if it doesn't make you feel good and it's not helping.

Starting point is 00:42:46 And you're allowed to come to the doctor's office asking questions. You're allowed to make sure that they treat people like you and they've had success. You're allowed to ask what they would instruct their family member to do. You are allowed to do all of it. And the best news is, I would say 80% of what you do to live well, to truly live well, whether that's nutrition, stress reduction, your personal mindfulness habits, exercise, all of that is up to you. That's all out of the doctor's office. And there is so much that we can do to improve our quality of life no matter what,

Starting point is 00:43:24 no matter what you're dealing with. I've seen people with stage four cancer still improving their quality of life by doing things outside of the doctor's office. You need to step into it. Because every challenge requires that you step into it, no matter how painful it is. You're the only person that's going to get help. Yeah. And that's an unfortunate reality, but it is a reality, right?

Starting point is 00:43:54 I mean, it is the reality that no one can come help us, right? It's not our fault that we have what's going on. But it ultimately does become our responsibility. It's like if, you know, a tree falls on your house. not your fault, but you're still going to have to find some way to get the tree off your house. No one's going to just show up and do it. And I do think that is unfortunate but true. And I think it's where peer support and patient advocacy and some of this stuff is moving forward

Starting point is 00:44:22 where you get more actual real support in certain cases from other people who understand what it's like. I was just going to say that agency is the most important part. of recovery for a patient. It's literally crucial that you find agency because being a patient with any kind of illness can be so disempowering, like deeply disempowering. And if you're not reclaiming agency over your life, your choices, who you decide to see, what you decide to do, how you set up your life and your habits and how you live and the air you breathe and the water you drink and the things you do to de-stress and sleep well and eat well, then you'll never reach

Starting point is 00:45:13 maximum potential. Yeah. I've talked to a couple groups of patients with chronic conditions, and I think about it from like the two types of change, right? There's the type of change that you now have this thing, you have this diagnosis, you have very real limitations, you have real pain, you have real fatigue, you have all of this. And so there's a learning to work with that more skillfully, which is some form of acceptance. Yes. And yet at the same time, there's the other kind of change, a change that we initiate, the change that we keep doing, the ability to keep going back to doctors to try and get better answers, the ability, like you said, to move ourselves in one small bit, little bit by a little bit, a theme of mine, towards taking better care of yourself in different ways.

Starting point is 00:46:03 And balancing those two is a little bit of a nuanced game. A hundred percent. And I really had a hard time with the acceptance piece. I thought I was doing it. I thought I accepted it. But it wasn't until I was physically better and I mentally started to struggle that I realized I had so much grief. And I had just paved over it.

Starting point is 00:46:27 it. And it was really painful, but I think it's imperative for anybody who's in any kind of recovery to surrender to what has happened. I mean, my life changed so quickly. It looked so different than anything I ever thought it would be. And it was excruciating. I mean, I honestly had a memory where I felt like I went from 25 to 40 and I blinked. And I would think about my life, as you know, in those superhero movies where the land splits and hero jumps to the other side, I just would look at my life in two parts. But then I realized through all of my self-study and my inner work that just because I used to say, oh, well, this is who I am. I am an actor. That's who I always was going to be.

Starting point is 00:47:24 This was my life path. I will get right back to it. I'll get right back to it. And then when I was better, I realized there's no going back. I mean, literally every facet of me has changed. Every facet of my life has changed. Every relationship I have has changed. Everything's different.

Starting point is 00:47:43 And yet, it's still my life. And I took what I loved about acting, didn't realize it at the time. But I channeled it into writing to save my spirit and to have a creation. native outlet and the acceptance of what has happened and what has happened to you and your life, if you don't just get down on your knees and surrender to it, you won't ever fully get better because you'll always be trying to push past it. Yep. Yep.

Starting point is 00:48:19 And I think like many things, acceptance and surrender, it'd be nice to accept and surrender 100%. but I don't think any of us ever really do, right? I mean, it's just an ongoing process of trying to come to terms with what life brings us. You know, sooner come to terms with what life has brought you, then it brings you something new. Yes. I know. It's such a smack down. Here we go again.

Starting point is 00:48:43 Here we go again. I mean, but we can get better at it. You know, we can get better at learning. Like, I'm a big fan of the serenity prayer, you know, change the things you can't. The problem with it, though, that I've discovered. recently as I've really thought about it is that we think that things go in one column or the other and they don't. Yeah.

Starting point is 00:49:06 A chronic illness is in both columns. There's acceptance work to be done and there's change work to be done. And we don't do well with that idea. It's much nicer to be like, all right, I can't change this. Even easier. When you can't change something truly can't change it, it's far easier to accept. If I had my leg amputated, as awful as that would be, I wouldn't believe that I was going to get my leg back. It would be clear there's acceptance that has to happen there.

Starting point is 00:49:37 But with chronic conditions, the challenge is always, of course, but maybe I am going to get better. And so then it's harder to accept. And I think that's, but understanding that that gray area is where the work is, at least for me, is important. Yeah, I totally agree. 100%. It's like the daily work. All right. Let's go back into tools for a minute. And you talk a lot about how we re-regulate our nervous system. You said that trauma healing happens through regulating our nervous system and changing our response to stress. And you have something you call the four R's. Can you share those with me?

Starting point is 00:50:18 Yeah. So when you have MTB, you can go from zero. zeroed to 11 so quickly in terms of getting scared. And I created the four hours to make it easy for people to create a framework for themselves. And step one is ready. Like a good scout is always prepared. So it's realizing that you might get triggered and how you get triggered. So for me, my heart speeds up really fast. I feel constricted breathing and I feel like prickles down my body.

Starting point is 00:50:52 Or I get really physically tense. It's important to, one, be able to recognize how do you experience the stress response so that you can start to feel when it's happening to you. And then you determine on a scale of 1 to 10, how bad is this stress pipe? Am I out of 1? Am I out of 3? Am I at 10? Because that will determine how you handle it. And making a list of things that really help you feel better.

Starting point is 00:51:24 Like I have an SOS pad on my notes on my phone. And if I have a really bad day, I go to that notepad. And I look at the things that really do help me. And I encourage people to start to, when they're in moments like this, learn what makes me feel better. Is it going for a walk outside? Is it dunking my face in ice water? Is it meditating? Is it doing box breathing?

Starting point is 00:51:48 For me, diaphragmatic breathing, doing it 10 times is a huge thing. but that's the routine is once you identify where you are on the scale, then the routine comes into implementing these tools that either I've given you here or that you've learned in your own life. I mean, some people just feel like playing with an animal can be so calming for them. And that's, I really encourage people to learn about themselves and do that. And then the third R is a reality check, like evaluating the scenarios. So we had to talk. talked about before, is this going to matter in two weeks, two months, or two years? Questioning yourself, is this actually an emergency? Can this wait a full hour? Is there any other

Starting point is 00:52:37 possible scenario for what I'm thinking could be happening? And just like asking yourself, almost like having a stop sign where you stop, drop, and read these questions so that you can start to help yourself through it. And that's the reality check. And the last one is the reframe. So in that, I talk a lot about after you've learned what works for you and you've tried your routine, it's really like, let's say that you go to a grocery store and you sneat, someone sneezes all over the apples that you're about to pick. Now, somebody's fear thoughts might go, oh my God, what if it's COVID? What if I'm going? I'm going to. to get sick or whatever the thought is. But it's really like, okay, that happened. I wish they had

Starting point is 00:53:27 covered their mouth, but what can I do to help myself, which is wash my hands, maybe take some extra vitamin C and get some fresh air. You know what I mean? Like, it can be as simple as that. And I use that analogy because people could so quickly go with MTV, oh my God, I'm getting it or it's coming back. And it's really important to be able to reframe what has happened. And also, like, acting as if is really helpful sometimes. Like, even if you feel terrible and let's say that person sneezes and you're scared, you have to just say, okay, that happened. I'm just going to act as if it didn't. I'm going to take necessary precautions. And I'm going to move on. But having all of these tools empowers you to help yourself when you feel horrible.

Starting point is 00:54:22 Before you check out, pick one insight from today and ask, how will I practice this before bedtime? Need help turning ideas into action? My free weekly bites of wisdom email lands every Wednesday with simple practices, reflection, and links to former guests who can guide you, even on the tough stuff like anxiety, purpose, and habit change. Feed your good wolf at one you feed.net slash newsletter. Again, one you feed. Dot net slash newsletter. There's so much great stuff there in what you just said. I mean, I think the first is this idea of it seems like we go from zero to a hundred instantly. And maybe early on we do. But as we develop tools, we start to see that maybe it's over a three minute period that happens. Right. And if we think of it being like a fire,

Starting point is 00:55:16 The sooner you get to the fire, the easier it is to put out, right? I mean, it's so great that you said that because Peter Levine in the book said, I said my stress response feels like wildfire. And he said it is like that because it feels like this overwhelming chaos. Yep, yep. I love that you use that analogy. And so the second thing in there that I really love is this idea of having what you're going to do written down. or having the options for what you can do written down because I know for me once I start to

Starting point is 00:55:52 escalate my brain can't remember what to do you know if I can even remember there is anything to do that's a good step let alone what it is and having it oh right written down yeah everything gets red yep yep and having it written down is so very valuable and I've shared this story before but one of the things I know that helps me with depression or low mood is music. The problem for me, though, is that when I'm in that space, no music sounds good. When I look at my library of music, I'm like, no, no, no, no, no, no, no, no, none of it. Because that's the nature of what I'm experiencing is this inability to think anything is enjoyable. So I just have a playlist of music that I know tends to help me feel better. So I don't have to go choose. I just go hit shuffle on that thing.

Starting point is 00:56:48 I mean, that's an example of what you're talking about. But I also think just knowing like, oh, I could take a walk. I could breathe. I could. Did you say wrestle with tigers? No, play with an animal. Wrestling with tigers. That's what you think is happening. That's exactly what you think is happening. That's the irrational thought. That's what we don't want to be doing. Yeah, if you have a very aggressive animal in your home, now is not the time to pet it. I hope you don't. But also one thing that really helps me is orienting to my space. So just saying, what is one thing I see? What is one thing I hear? What is something I smell? And what is something I feel? Yeah. It's one of my all-time favorites, too. It is. Yeah. It is. Yeah. Both for that and also as a way

Starting point is 00:57:38 of practicing learning to become more present even when I'm not in distress. Because we say like be more present and we're like, well, okay, how do I do? Right. Okay, I'm trying to be present and I'm no sooner thinking about being present than I'm all thinking about something else. And so for me, I'll just be walking around like, what are five things I can see? You know, it's sort of an anchor to keep me there. Well, that's like mindful meditation.

Starting point is 00:58:01 Yes. So I would love to talk about what you talk about in the conclusion, which is, is, you make an analogy of dealing with this is sort of like an Akito master story was told. Share that. A well-known Akito master, it was during a training session where he instructed his students to attack. And they would one after one come after him. And he would stay so calm and present and they'd all be exacerbated and so like trying to gasp after. air and they would say, oh, sense, how do you stay so calm? Like, how are you not, you know, getting reactive? And he said, I am. I just pivot so fast that you can't see it. And the goal of everything, I mean, I wrote it much better than I said it, but the goal of my book is to help

Starting point is 00:59:00 patience to understand that triggers will happen. The goal isn't perfection. But that on the other side of really full-blown stress responses, you can get to a place where you are so intimately connected with yourself that if something comes on, you know how to deal with it. You are empowered. You're in control. And that it will never feel as big as a tidal wave again to the point where the real lesson is that's what life's all about, getting knocked down, getting back up over and over. and over again. And the key isn't to try to not. It's just try to live mindfully and presently, no matter what happens, and trust that you'll

Starting point is 00:59:50 always be able to handle it. Well, that is a beautiful place to wrap up. You and I are going to continue in the post-show conversation because I want to talk about super freak a little bit more. You're the part of your brain that goes a little crazy because super freak shows up a couple times. And particularly super freak trying to meditate is a good one. So listeners, if you'd like access to this post show conversation, add free episodes. And crucially, if you want to support something that you value, go to one you feed.net slash join.

Starting point is 01:00:29 Amy, thank you so much. Thank you so much. Thank you so much for listening to the show. If you found this conversation helpful, inspiring, or thought-provoking, I'd love for you to share it with a friend. Sharing from one person to another is the lifeblood of what we do. We don't have a big budget, and I'm certainly not a celebrity, but we have something even better, and that's you. Just hit the share button on your podcast app or send a quick text with the episode link to someone who might enjoy it. Your support means the world, and together we can spread wisdom one episode at a time.

Starting point is 01:01:05 you for being part of the One You Feed community.

The One You Feed - When Your Health Feels Like a Rollercoaster: Finding Stability in the Chaos of Chronic Illness | Amy Kurtz

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