When Your Health Feels Like a Rollercoaster: Finding Stability in the Chaos of Chronic Illness | Amy Kurtz

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Episode Transcript:

Amy Kurtz 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 up over and over and over again.

Chris Forbes 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. Our actions matter. It takes conscious, consistent, and creative effort to make a life worth living.

Chris Forbes 00:01:20  This podcast is about how other people keep themselves moving in the right direction, how they feed their good wolf.

Eric Zimmer 00:01:28  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. 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 grey area. Our culture pretends doesn’t exist. I’m Eric Zimmer, and this is the one you feed. Hi, Amy, welcome to the show.

Amy Kurtz 00:02:13  Thanks for having me.

Eric Zimmer 00:02:15  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.

Eric Zimmer 00:02:27  There’s a great song in that title too. Some, you know, a songwriter could write a great song. You’ve given them a fair portion of what is necessary, by the way.

Amy Kurtz 00:02:36  No one’s ever said that. Do you want to write the song?

Eric Zimmer 00:02:39  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 is 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 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, and they say, in life there are two wolves inside of us that are always at battle.

Eric Zimmer 00:03:21  One is a good wolf, which represents things like kindness and bravery and love, and the other is 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.

Amy Kurtz 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.

Eric Zimmer 00:04:24  That’s a beautiful, beautiful perspective. So I want to talk about your book and get into the details of it.

Eric Zimmer 00:04:35  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.

Amy Kurtz 00:04:51  Okay, I’m going to preface it with this as 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, 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.

Amy Kurtz 00:05:47  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 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 in 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.

Amy Kurtz 00:06:52  And I realized in that moment 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 in my life and see that I was treading water 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, my parents house at the time, and looking for a way to help myself from this intense fatigue. I mean, 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.

Amy Kurtz 00:08:04  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 at that time, specifically women, to thrive through a challenging experience that could otherwise be extremely sidelining 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. Yeah. And I was having almost an internal crisis of like, I have to keep going. I have to find the energy. 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.

Eric Zimmer 00:09:16  That’s a lot of doctors.

Amy Kurtz 00:09:17  That’s a lot. But something inside of me knew that something was wrong. 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, it was like a Harry Potter anthology of of medical labs.

Eric Zimmer 00:09:37  And it’s the story of the Dementors is basically what it’s called. Keep the Harry Potter analogy going.

Amy Kurtz 00:09:44  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, 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.

Amy Kurtz 00:10:21  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. And I was so proud that I hadn’t given up on myself because it would have been very easy too 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.

Eric Zimmer 00:10:50  This is speculation and probably not even 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. It was this was not on people’s radar in the same way that it is today.

Amy Kurtz 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.

Amy Kurtz 00:11:22  It just wasn’t something in the 90s that was ever talked about.

Eric Zimmer 00:11:26  Exactly. Yeah. I mean, we’ve come a long way. Yeah, exactly. It was not.

Amy Kurtz 00:11:29  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. But it’s a very complicated disease 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 diseases to be able to diagnose it correctly.

Eric Zimmer 00:12:05  The great imitator is a very interesting term, and I think.

Amy Kurtz 00:12:08  It’s also creepy.

Eric Zimmer 00:12:09  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 figure out which is which.

Eric Zimmer 00:12:25  Oh, it’s my thyroid. 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 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. It’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, right? It’s just tricky.

Amy Kurtz 00:13:08  Yeah it’s true. I agree.

Eric Zimmer 00:13:13  Okay. So back to your story. You’ve been diagnosed with Lyme disease finally. And you start the path towards recovery from that.

Amy Kurtz 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.

Amy Kurtz 00:13:33  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’ve 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. That’s the messaging. But it was impossible for me to not 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, 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.

Amy Kurtz 00:14:54  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. 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. Yeah. And it was like, once I finally got 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 it was so tense all the time.

Eric Zimmer 00:16:11  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 you’re 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 anhedonia, which is a depressive symptom. I have 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.

Eric Zimmer 00:17:16  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.

Amy Kurtz 00:17:32  Yeah, 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 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.

Eric Zimmer 00:18:09  Yeah. There’s no back to normal.

Amy Kurtz 00:18:11  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. Yeah, 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. It’s. I really feel we have a loneliness epidemic in our country, 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 you’re well, and it’s not black and white. And the truth is that people are really suffering in the grey. And I was experiencing a psychic suffering that I could not explain because it hadn’t been named.

Eric Zimmer 00:19:08  So you went on to name it. So let’s move there. What what do you call this?

Amy Kurtz 00:19:13  I named this medical trauma brain, or MTBE, and it is the emotional neurological imprint of having lived with a debilitating health condition.

Amy Kurtz 00:19:27  And I named it because I couldn’t find it. 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 have people in my life and people that I interviewed that 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. Yeah. Bracing for impact. Yeah. The same thing happens after a cancer patients 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. It’s like you go from 0 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 is, there are those patients that get better, but they’re not acting as if they’re better.

Amy Kurtz 00:20:39  And I’m like, that’s exactly it. What is it called? And nobody could tell me. Yeah. 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 its sister from another mister, because it’s when the event happens over and over and over again. But what I was naming in MTV 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.

Eric Zimmer 00:21:40  Yeah. That is a really important naming of a particular thing, I think.

Eric Zimmer 00:21:48  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 thread 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 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. Yeah, 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.

Amy Kurtz 00:22:43  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.

Eric Zimmer 00:22:52  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, our 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 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. So to be uncertain about the primary factor of your life is really difficult.

Amy Kurtz 00:23:36  Well, yeah. That’s true. It’s really hard. It feels like a rug is ripped out from underneath you.

Eric Zimmer 00:23:44  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.

Eric Zimmer 00:23:54  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 there 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 on it versus being in it. How does somebody who’s still in it work with this?

Amy Kurtz 00:24:55  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.

Amy Kurtz 00:25:07  And I really wanted to first name and 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. Yeah. 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, 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.

Amy Kurtz 00:26:14  Yeah. 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 get 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. Just simple things you can do to orient, to titrate, 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 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.

Amy Kurtz 00:27:33  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.

Eric Zimmer 00:27:43  Check in for a moment. Is your jaw tight? Breath shallow. Are your shoulders creeping up? Those little signals are invitations 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. Things like mental health, anxiety, relationships, purpose into bite size 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 UFI newsletter. That’s one you get a 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.

Eric Zimmer 00:28:44  So you said you’ve 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. And CBT is a talk therapy. So talk to me about the difference that you found when you were doing general therapy and CBT.

Amy Kurtz 00:29:03  Well, I don’t want to knock anything, but let’s just say I had been in talk therapy for ten 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 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.

Amy Kurtz 00:29:51  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 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 learn tools from the Sud scale to the maybes to the talk backs. 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 named 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 and will alert me like everything is an emergency, everything is danger.

Amy Kurtz 00:31:03  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.

Eric Zimmer 00:31:44  So I want to say what CBT is just for anybody who doesn’t know. 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.

Amy Kurtz 00:32:20  Yeah.

Eric Zimmer 00:32:20  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.

Eric Zimmer 00:32:25  This is worth spending time on. So that’s one tool you mentioned the maybes. What are the maybes?

Amy Kurtz 00:32:33  Well, I can just. If I got stressed, I would go from 0 to 100 so fast and I really would have to question my fears. And something that I did was just say them out loud, ridiculously like ten times in a row. And it just kind of made me laugh. 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, way to sleep because you will be shocked at how much your stress response will turn down if you give it a little spaciousness. When we get stressed, it can feel like such an emergency.

Amy Kurtz 00:33:26  After you’ve been through something like that.

Eric Zimmer 00:33:29  And so the maybe is when you have a thought like this is a complete disaster, you say, well.

Amy Kurtz 00:33:35  Maybe, maybe it’ll be a disaster. Maybe it’ll be a disaster. Yeah, maybe it’ll be a disaster.

Eric Zimmer 00:33:40  Or maybe it won’t.

Amy Kurtz 00:33:41  Maybe it won’t be. Maybe it will be great. Maybe it will be great.

Eric Zimmer 00:33:44  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 Daoist story. So anyway, you could look that up, listeners, you could look that up. Also, it’s probably been told in these shows, you know, 50 times over the years. 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 in a different way. All powerful stuff.

Eric Zimmer 00:34:13  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. And it just it almost escalates the situation. Yeah. And I think that what you’re saying is this is the trying to push through trauma apart.

Amy Kurtz 00:34:40  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 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.

Amy Kurtz 00:35:22  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.

Eric Zimmer 00:35:53  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 this 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.

Amy Kurtz 00:36:17  For me, I always thought that being resilient was It’s 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.

Amy Kurtz 00:36:37  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 important, you won’t ever un wire what just happened? You can’t.

Eric Zimmer 00:37:21  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?

Amy Kurtz 00:37:37  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.

Amy Kurtz 00:37:55  So you oftentimes if there’s bad behavior or if things go wrong, you choose attachment 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 was.

Eric Zimmer 00:38:34  Is it performative resilience?

Amy Kurtz 00:38:35  Oh, in some ways it’s performative. But also you learned 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 the 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 there’s finding the right doctor. So I think at first maybe it becomes performative.

Amy Kurtz 00:39:15  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 and be like, handle the burden of all of it, then I’m not going to get better.

Eric Zimmer 00:39:31  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.

Amy Kurtz 00:39:46  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 invalidated and misunderstood or dismissed. Move on. You very rarely would marry the first person you go on a date with. It’s the same here. It’s just that you have to be really clear with yourself in a different way of what do I need in a doctor? What’s important to me and my list is going to be different from everybody else’s.

Amy Kurtz 00:40:24  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, 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, 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.

Amy Kurtz 00:41:34  No matter how painful it is, you’re the only person that’s going to get help.

Eric Zimmer 00:41:40  Yeah. And that’s a that’s an unfortunate reality. But it is a reality, right? I mean, it is the reality that no one can come help us. Right. It’s 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, it’s 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 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, where you get more actual, real support in certain cases from other people who understand what it’s like.

Amy Kurtz 00:42:25  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.

Amy Kurtz 00:42:44  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 in, the water you drink and the the things you do to de-stress and sleep well and eat well, then you’ll never reach maximum potential.

Eric Zimmer 00:43:07  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.

Amy Kurtz 00:43:31  Yes.

Eric Zimmer 00:43:32  And yet at the same time, there’s the other kind of change, the 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 little bit.

Eric Zimmer 00:43:49  A theme of mine towards taking better care of yourself in different ways. And balancing those two is a little bit of a nuanced game.

Amy Kurtz 00:44:00  100%, 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 veteran I mentally started to struggle that I realized I had so much grief and I had just paved over it. Yeah, 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 the 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 my inner work, that just because I used to say, oh, well, that this is who I am, I am an actor.

Amy Kurtz 00:45:13  That’s who I always was going to be. 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. 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 creative 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.

Eric Zimmer 00:46:09  Yep, yep. 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.

Eric Zimmer 00:46:27  You know, sooner come to terms with what life’s brought you, then it brings you something new. Yeah.

Amy Kurtz 00:46:31  Like, you know, it’s here. We go back down.

Eric Zimmer 00:46:33  Here we go again. 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, is I’ve really thought about it, is that we think that things go in one column or the other and they don’t. Yeah. 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, oh, 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.

Eric Zimmer 00:47:25  It would be clear. There’s acceptance that has to happen there, 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 grey area is where the work is, at least for me, is important.

Amy Kurtz 00:47:45  Yeah, I totally agree 100%. It’s like the daily work.

Speaker 4 00:47:51  All right, let’s go back.

Eric Zimmer 00:47:52  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 Rs. Can you share those with me?

Amy Kurtz 00:48:09  Yeah. So when you have MTBE, you can go from 0 to 11 so quickly in terms of getting scared. And I created the four Rs 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.

Amy Kurtz 00:48:35  So for me, my heart speeds up really fast. I feel constricted breathing and I feel like prickles down my body. 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? Like, am I out of one? Am I out of three? Am I out of ten? Because that will determine how you handle it, and making a list of things that really help you feel better. Like, I have an SOS pad on my note, 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 for me? Diaphragmatic breathing.

Amy Kurtz 00:49:42  Doing it ten 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 means some people just feel like playing with an animal is 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 the scenarios. So we had 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 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 sneak someone sneezes all over the apples that you’re about to pick.

Amy Kurtz 00:51:05  Now somebody’s fear. Thoughts might go. Oh my God, what if it’s Covid? What if I’m gonna get sick or what? You know, whatever the thought is. But it’s really like, okay, that happened. I wish they had 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.

Eric Zimmer 00:52:13  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 newsletter again one you feed net letter. 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 0 to 100 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, the sooner you get to the fire, the easier it is to put out. Right. I mean.

Amy Kurtz 00:53:11  It’s great that you said that because Peter Levine in the book said, I said my stress response feels like wildfire.

Amy Kurtz 00:53:19  And he said, it is like that because it feels like this overwhelming chaos.

Eric Zimmer 00:53:24  Yeah. Yeah.

Amy Kurtz 00:53:26  I love that you use that analogy.

Eric Zimmer 00:53:28  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 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.

Amy Kurtz 00:53:54  And having it right written. You go read. Yeah. Everything gets read.

Eric Zimmer 00:53:58  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.

Eric Zimmer 00:54:22  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. 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. Play with an animal? Wrestling with tigers.

Amy Kurtz 00:54:53  That’s what you think is happening.

Eric Zimmer 00:54:54  That’s exactly. It’s exactly what you think is.

Amy Kurtz 00:54:56  The irrational thought.

Eric Zimmer 00:54:58  Right? That’s. 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.

Amy Kurtz 00:55:05  When you’re well, I hope you don’t.

Eric Zimmer 00:55:07  But,

Amy Kurtz 00:55:08  Yeah, 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?

Eric Zimmer 00:55:21  Yeah, it’s one of my all time favorites too.

Amy Kurtz 00:55:24  It is.

Eric Zimmer 00:55:24  Yeah it is. Yeah. Both for that and also as a way 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 off thinking about something else. And so for me, I’ll just be walking around and like, what are five things I can see? You know, it just it’s sort of an anchor to.

Amy Kurtz 00:55:50  Me that, well, that’s like mindful meditation.

Speaker 4 00:55:53  Yes. So I would.

Eric Zimmer 00:55:54  Love to talk about what you talk about in the conclusion, which is you make an analogy of dealing with this as sort of like an Aikido master story was told.

Amy Kurtz 00:56:08  Share that a well-known aikido 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.

Amy Kurtz 00:56:26  And so like trying to gasped for air and they would say, oh, sensei, 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 patients 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 try to live mindfully and presently, no matter what happens.

Amy Kurtz 00:57:39  And trust that you’ll always be able to handle it well.

Eric Zimmer 00:57:45  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 is a good one. So yeah. 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. Amy, thank you so much.

Amy Kurtz 00:58:22  Thank you so much.

Eric Zimmer 00:58:24  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. Share it 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. Thank you for being part of the One You Feed community.