When Your Old Life Isn’t Coming Back | Dr. Jeffrey Bone

What happens when the life you spent years building suddenly disappears?

After exposure to black mold led to chronic inflammatory response syndrome and an immune deficiency disorder, psychologist, author and chronic illness mentor Dr. Jeffrey Bone had to confront a painful truth: the life he kept trying to reclaim was not coming back.

In this deeply honest conversation, Jeffrey shares the grief of losing both his health and the identity built around who he had once been. He and Pam explore medical trauma, the isolation of invisible illness, the importance of self-advocacy, and why finding the right doctor sometimes requires the courage to walk away from the wrong one.

Jeffrey also reveals how curiosity helped him discover parts of himself he had never explored. Poetry led to journals, books, coloring books and eventually his podcast, To the Bone: Conversations on Pain, Illness, and Meaning.

This episode is not only for those navigating chronic illness. It is for anyone whose life has changed through loss, caregiving, disappointment, an empty nest, a career transition or a dream that did not unfold as expected.

Jeffrey reminds us that healing does not always mean returning to who we were. Sometimes it means grieving what has changed, asking for help and becoming curious about the life that can still be built from where we are now.

Connect with Dr. Jeffrey Bone:

Website: https://www.drbone.live/

Instagram: https://www.instagram.com/restless.human.studio/

Threads: https://www.threads.net/@restless.human.studio

Connect with Pam Dwyer:

https://pamdwyer.com/

https://delaythebinge.com/

Your past does not define you. It prepares you.

Pause. Choose. Build momentum. Finish stronger.

Transcript

Copy Transcript Copied

When Life Changes The Script

SPEAKER_03 0:00

What happens when the life you've spent years building suddenly disappears? Not because you made a mistake, and not because you gave up, but because life changed the script. Today's guest lost the life he thought he was going to have. What happened next taught him something all of us need to hear. Sometimes healing isn't about getting your old life back. It's about discovering who you can become when life changes the script. Welcome back to Delay the Bench Podcast, where we explore the pause between what happens to us and what we choose to do next. I'm your host, Pam Dwyer, and today I'm joined by Dr. Jeffrey Bone, author, psychologist, chronic illness mentor, and host of the podcast To the Bone: Conversations on Pain, Illness, and Meaning. For more than two decades, Jeffrey has helped people navigate chronic illness, pain, grief, and some of life's most difficult transitions. But what drew me to his work wasn't his expertise. It was his story, a story of losing a life he thought would continue forever, and discovering that even when circumstances change, meaning, purpose, and possibility can still remain. Today we're talking about setbacks, identity after loss, medical trauma, curiosity, resilience, and how to move forward when life doesn't look anything like you expected. Jeffrey, welcome to Delay the Bend.

SPEAKER_00 1:37

Well, thank you very much for having me today. I appreciate it.

SPEAKER_03 1:40

Oh my goodness, we're all excited. But before we dive into your wonderful story, what are the most exciting things happening in your life right now?

SPEAKER_00 1:50

Right at the moment is talking to you. Talking to you and um being curious about creating some more podcasts and kind of changing my format a little bit uh with my uh podcast. I think that's the thing that has the hook in my mouth and has me kind of curious of what could be my next. I'm always looking for the next, whether it's the next book, a next you know, audio um to put out, you know, what is that next place where I can be a little creative. And uh right now it's focusing on your podcast and then uh focusing a little bit on my podcast.

SPEAKER_03 2:28

Yes, yes. We have um really awesome messages, I think, that are pretty inspiring.

SPEAKER_02 2:34

Oh, absolutely.

SPEAKER_03 2:35

Yeah, yeah. And podcasting, man, it's an ever-changing thing. It's always evolving. Yeah.

SPEAKER_00 2:42

Because we start off with it, and it's like, oh, anything new and novel, it's like, wow, this is interesting, and how can I solve this? It's a problem. We're kind of playing with it. It's it's a problem that we want, it's a problem that we're asking for. And then we get, you know, doing it a few times. We put out these episodes, and then you're just like, how do I tweak this? How do I make this a little bit better? So it's like this Rubik's Cube that we're always kind of fiddling with to kind of tweak it, whether it's sound or lighting or topic or however we're coming across, whatever it may be, but it's this ever-present challenge. But that's the fun of it.

SPEAKER_03 3:19

Mm-hmm. It is because everyone thinks they're climbing this mountain to get to the summit, right? But once I get to the summit of something, I'm ready to go to the next mountain that was hiding behind that one.

SPEAKER_00 3:32

There there is no real destination to it. The we have this imaginary destination. I'm sure if it's like, oh, I need a thousand listeners, but if you get a thousand listeners, I wonder if I can get to ten thousand. 10,000 becomes a hundred thousand. Then it's like, well, if I can do that, can I do it? And so there is no real destination to it. It's just a process that just unfolds.

SPEAKER_03 3:53

Mm-hmm. Mm-hmm. And I like to learn all I can and then help others learn the same, maybe save them a little bit of time.

SPEAKER_00 4:01

Yes, yes. And so, yeah, it being that mentor back of kind of climbing something that traversing it and then looking back, and there's always someone starting a podcast, or there's someone starting the a new business or a new idea or something. And then you can kind of reach back and say, hey, I kind of did a little bit of that, and this is what I learned. Hopefully that makes your journey a little bit easier.

SPEAKER_03 4:26

Yes. And that's the goal is just to help people. Before

Losing Yourself In Overwork

SPEAKER_03 4:31

illness entered the picture for you, can you describe what your life was like before?

SPEAKER_00 4:37

It was pretty routine in terms of just working many, many hours and focused primi primarily on other people's story. I didn't really have any strong creative outlets. I really wasn't kind of carving away at my own identity, at my my own story. My life was predominantly focused on, you know, whether it's family or whether it's uh my clients. Uh it was always kind of focused on other people's story. And it really wasn't until I fell down on a on a medical basis that I started looking at my own story much more. And so um didn't have a lot of hobbies. I just worked a whole lot.

SPEAKER_03 5:25

Well, what were you working? What were you doing?

SPEAKER_00 5:27

What was your uh I was just treating clients, you know, primarily people that had chronic illness, chronic pain. You know, those are my focus. And I would be writing reports and I would be doing uh psychological clearances for spinal cord stimulators or surgeries, and uh just working easily, you know, over 12 hours a day. And so it was just a whole lot of work. And I never really minded doing a whole lot of work, but the problem with the whole lot of work was it was somebody else's story all day, every day. And my story was kind of left behind.

SPEAKER_03 6:08

Mm-hmm. Mm-hmm. You kind of lose yourself in a busyness of life.

Quiet Depletion And Avoiding Stillness

SPEAKER_03 6:12

We talk a lot about that on this podcast about quiet depletion, which is very um driven, motivated people. They look great on the outside, they're successful, but on the inside, they've lost sight of who they are.

SPEAKER_00 6:24

You know, we have to slow down. Our our society rewards productivity. And that so we have this culture that wants two accelerators and no break. Because in our society, we don't reward the stillness, we don't reward the quiet. We don't but as human beings, that's exactly what we need because that's what we were designed for. Maybe we would hunt and gather, maybe a few hours a day, but it would be in when we would hunt and gather, we would do that with our tribe, a group of people. We wouldn't be doing everything in isolation, and we wouldn't be doing it for 12 hours a day. And so we're going against the grain of really who we are as human beings, and we've become kind of hyper productive uh productive, and we've become hyper-isolated in that. And so we get away from just our natural human state, which leaves us with very nice things around us in many ways. And the nice thing could just be, you know, we have a bed, we have running water, we have a refrigerator, we have these things that make life more comfortable, but does it really make it more meaningful? Does it really kind of you know check the box of our soul? And are we taking care of our soul?

SPEAKER_03 7:40

Exactly. And the busyness, I think sometimes is intentionally done. It's intentional because we don't want to get quiet and look in.

SPEAKER_00 7:50

Absolutely. People talk all the time. It's like they they can't go out walking without listening to something in their ear, music or a podcast, because they don't want their own thoughts. Uh, they don't want to be uncomfortable. But the problem is everything that's really kind of worthwhile in life is on the other side of that discomfort. You have to kind of go through the briar patch. If you want to get physically fit, well, you need to go exercise, you need to go to the gym, you need to kind of do X, Y, and Z. And maybe that you're eating a little bit less, and maybe you're working out a little bit more, and the muscles are going to be sore, you're going to feel uncomfortable, but then you'll be getting the things that you want. And so, and so part of you know life is, you know, really kind of welcoming and not resisting some of those uncomfortable feelings. And once that kind of uncomfortableness bubbles up, we tend to go, okay, we can distract with 12 hours of work, we can distract with, you know, video games or whatever it may be. And we don't have to feel our feelings. But we betray ourselves uh by doing so because it's just a part of life. Uh, you know, people will say, um, oh, I need to stop being negative. I need to stop being negative. It's like, no, no, no, no. You don't have to stop being negative. That that's not, that's not the problem. You just need to sit with that negative. You need to observe it and watch it and be aware of it, have a decent relationship. Because I always say, we're going to use all the crayons in the crambox. We're not getting rid of any parts of kind of who we are.

SPEAKER_03 9:28

Exactly. It's kind of like uh stepping stones or a trail, right? To find out what you're really about.

Black Mold And The Medical Spiral

SPEAKER_03 9:34

Now you shared that exposure to black mold ultimately led to a chronic inflammatory response syndrome, and it drastically changed your life. Can you take us back to that chapter briefly? Do you mind sharing that?

SPEAKER_00 9:50

Yeah. I started off noticing uh I had this headache that wouldn't go away. And go I go to an ENT because I had this sinusitis. And he prescribes prednisone, which is pretty normal. You know, take some flonase, you know, take some prednisone. But the problem is I had been sitting in this office for three years with black mold in the HVAC, and I had no idea it was there, obviously. And once I take the prednisone, my body explodes and the mycotoxins take over. Uh it feels like my feet are vibrating, my bladder hurts, um, you know, nerve pain in my foot and my head. I have a tremor, feels like a concussion kind of hit me. Uh, I can't watch TV. I can't take the motion of the stimulus of the screen. I can't even look at my phone. I can't scroll because that motion kind of bothers me too much in terms, and I don't know what's going on. And I try to go to the doctors and they're just like, oh, it's anxiety. Oh, it's kind of like it's gonna be better in a few days, you know, give us some time, and you know, just completely get gas-lipped because they don't have the answer. And doctors don't like saying, I don't know. So they just give me the kind of here's the fill in the blank. Okay, fine, it's anxiety, see you later, you know, do some stress management exercises. But this goes on for some time, and I go to many doctors. I go to the internist, the neurologist, the ENTs, multiple ENTs, end up having sinus surgery. And I finally go to this functional medicine doctor who does some testing and goes, I think you have a mold issue. And then I go and test the office. The office comes back as having black mold. There's two different types of neurotoxic mold in the HVAC. So I have the blood work, the urinalysis, I have the uh the testing of the office that all kind of confirms I have chronic inflammatory response syndrome. My body's just, you know, overwhelmed with it. And part of the problem here is that I do the treatment for all of it and I get better, but I'm I still don't have any good days. I still feel sick every day. And so then I go to um, I was gonna go to the Mayo clinic, but I said, before I do that, let me go to um a local hospital, let me look at the directory because maybe there's a specialty that I haven't gone to yet. And I come across one that says toxicology, and I'm like, I feel toxic, you know, so I'm gonna go there. I don't really know what toxicology does, but I'm gonna go there. And he doesn't believe in the whole mold premise. And I'm like, I don't care. It doesn't matter. Just what's your opinion of you know what's going on? And he tests my IgG levels, which were all clinically low, and then he's like, you need to go to an immunologist. So I go there, they give me a vaccine, and a month later I come back and they test did my body make antibodies to the vaccine, and it doesn't. And so low IgG and the vaccine challenge. Now I have common variable immune deficiency. And now I need to do infusions on a weekly basis, which um infusing immunogoblins, which is what people donate when they donate plasma.

SPEAKER_02 13:06

Oh, I see.

SPEAKER_00 13:08

So I get I get kind of it it becomes this domino effect of first the mold illness and then that got uh the genes to express the common variable immune deficiency.

unknown 13:21

Wow.

When “Going Back” Ends

SPEAKER_03 13:22

What a journey. I'm sure there was a point when you're like where you understood my old life isn't coming back.

SPEAKER_00 13:31

Yes.

SPEAKER_03 13:32

Was there ever pointing?

SPEAKER_00 13:34

Yeah, I remember trying to get back to that old life. I remember kind of burning myself out and just playing, you know, pretend that I am that person for so long. And it's like I'm just pretending, pretending, I'm just doing all these different things. And I don't think it was really until I got the common variable immune deficiency disorder. Because when I had the chronic inflammatory response syndrome disorder, there was this when you read the literature, and there's a lot more about it now than there was back then, it was about 10 years ago. But there was a greater sense that this can be recovered. It's like I can get remission here, I can treat this. And I may kind of be a little scarred from it, but you know, it's but I will get most of me back. But then when I got the common variable immune deficiency disorder, that's when I'm like, oh, there really is no going back. There is no cure. This in it, it's just something that can be managed, but it's not something that can be cured. And so that's when I really realized there's no going back, you know, into the gray white open. And and and I say it almost like flippantly, but throughout the process, there was so much sadness, so much grief, so many tears. It's not that I just I can talk about it, you know, just as if I'm talking about the weather, but during that time, there was a lot of emotional upheaval. Uh, because I was just very lost, very confused. My compass was spinning, and I didn't really know what to do, who to go see, you know, how to manage this. I didn't have the blueprint.

SPEAKER_03 15:22

If you think to yourself, you have to let go of who you thought you were going to be. A lot of times that you realize you weren't just losing your health, you're losing an identity. And many people cling to their illnesses or their health issues or even their mental issues because they've been struggling with that their whole lives. So if they fix it, if they resolve it, then who are they without that?

SPEAKER_00 15:53

Yeah, the brain will always pr pick a familiar hell versus an uncertain, you know, journey. Because the brain likes familiar, even if the familiar sucks, it's terrible, it's painful, it doesn't meet all your needs. If it's familiar, the brain will always pick that route. The brain says, familiar, I know that, and I can be because the brain prioritizes safety and survival.

SPEAKER_02 16:20

Yes.

SPEAKER_00 16:20

And so in this situation, yeah, you may not get all your needs met and you may not be happy and you may not, you know, fill in the blank, but you're gonna survive. And I know that you're gonna survive because we've told the story many times over. So that's where the brain, you know, prioritizes the familiar. But then familiar, it's it then it it becomes something outside of your choice. You know, I didn't choose to take this different path with these different illnesses and and being sick the way I was. And it just was shattered out of nowhere and in a very unexpected way. It was like a medical car accident. You're just driving along, and all of a sudden someone T-bones you and life is never the same. So I got existentially T-boned in that situation. And uh, and and when you're in the midst of it, um you're so lost and confused, and you're trying to get any kind of footing that you can, and it's it's it's devastating. And it's very, very lonely, very lonely, because everyone else isn't going through this, and they can't truly, truly relate, and they can't feel the pain, they can't feel the fatigue, the the memory loss, the the brain fog. No one else around you can truly understand it. So it feels very isolating in that way. And you can see that you know, other people aren't really reacting with the same level of urgency because you may just appear fine or you you may appear a little tired, and they're just treating it like, oh, you're just a little sick and not devastatingly, you know, torn apart physically, emotionally, and existentially.

SPEAKER_03 18:11

Gosh, were you ever afraid of uh losing a part of yourself forever?

SPEAKER_00 18:18

Uh yes. Uh especially with uh the brain, and it uh it still kind of comes up on occasion where my memory is not what it was, and I will forget people's names. I wasn't great with people's names to begin with, but uh I I can definitely see that there's still holes uh in my ability to recall and that I'm not as sharp. Um I'm not as I'm not as intelligent as I once was. Um, not that I was this, you know, uh Einstein before, but I can see a little bit, because I I've been with me my entire life. I can see that I'm a little dulled down in some ways, and that it's not the same. And you know, the old version of me would have been able to be a little bit more graceful, would have been a little sharper, would have been a little bit more witty or whatever it may be. I'm just like, oh, this is the 2.0 version.

SPEAKER_03 19:18

Well, but sometimes slowing down allows you to be more intelligent. I think people live too fast-paced sometimes. Even when they're talking, it's so fast, and I have to really focus to stay up with them.

SPEAKER_00 19:30

Yes. No, and the thing is, it's kind of like you have to be able to grieve it. You have to be able to accept it so that you can expand. Uh, the expansion is still possible, and that's one of the things that I always preach, but it's not expand. There is no expansion

Curiosity And Creative Recovery

SPEAKER_00 19:48

if you're seeking out the old self, the old identity. You have to kind of find those areas where you still have strengths that you so for me, what I did was I started kind of a creative pursuit, which I had not been doing kind of prior to my illness. And and I began, it started with poetry. It started just by writing poems. And I liked poetry because it was very unstructured. It was, I could mold it however I do. I want it to rhyme or not rhyme or chaotically rhyme, or you know, where do I put the comma? Do I capitalize things? I can do whatever it is that I want to. And that gave me the cathartic, just emotional release, which is to kind of write the poetry, which then encouraged me to write uh some chronic illness journals uh that people can kind of use as prompts to help them with their writing, which then kind of said, like, well, I wonder if I could do some coloring books. So I did some coloring books, and then I, you know, ended up writing some other books as well. And it was all out of this, you know, what else is in me? What else have I not explored? As well as the podcast. It's I had no, I was a consumer of podcasts, but I had no interest or I wasn't looking to make my own. But once I became ill, and that first spark was that poetry, which became this rolling ball of what else can I do? What else can I do? And it was that curiosity which then kind of unraveled these other parts of me that were just unexplored. And and that's the essential piece of it, which is we get used to a certain way of thinking, living, doing, and we have so many other possibilities. There's so much freedom, but we don't really seek out that freedom because the brain's like, I don't know how safe that is for you to kind of go do that. But once you don't have an option of continuing on with the old freedom or the in the old story, that you're kind of forced to get. Of go out into the wild a little bit and see what else is there. And that's what the process was going out, and it sounds overly simplistic, but it doesn't need to be complicated, which is holding on to this element of curiosity. I wonder what else I could do. I tried to paint a little bit. I wish I could. I wish I see, you know, wonderful paintings as oh, I wish I had the patience. I wish I had the um the hand-eye coordination for it, or I could see the right colors, whatever it may be. But it's just not there. But I found places where I could create and it felt genuine. It felt I felt proud of when I was able to kind of do these different things. And I think that's what it is. And one of the things that aligns with my values was that everything that I kind of created was an effort to share things with other people. So um I'm not trying to monetize my podcast, and that's probably will never ever happen. You'll probably never hear an ad on my podcast. And it's not that it's bad that people do. That's wonderful. But my goal is just to have information to other people. And so I had over like 50 episodes right now. They're all solo podcasts. It's just me, and it's almost like my mini version of a TED talk about different elements of chronic illness.

SPEAKER_03 23:31

Well, that's how I started. I started with just me.

SPEAKER_00 23:35

Yes. And then you got curious of what else could this be different? Could this be more interesting? Could this be more fun if I interview other people? And then you're like, okay, how do I, you know, what platform do I use? Do I do this one, this one, this one? Okay. And, you know, how do I find this? How do I find the guests? So you found pod match, and then you and it was just this curiosity, and your curiosity has you this morning talking to this person. And and away we go.

SPEAKER_03 24:07

And I want to say, as a writer, from one writer to the other, we paint pictures with our words.

unknown 24:13

Yes.

SPEAKER_03 24:14

I just want to say. So we are artists.

SPEAKER_00 24:16

Oh, we're definitely artists. We definitely are.

SPEAKER_03 24:20

I'm with you. I cannot paint a canvas for anything, just I can with words, though.

SPEAKER_02 24:25

Yes.

SPEAKER_03 24:26

I think so many people can relate to all of this, even if they're not dealing with illness.

Identity Loss And Growing Pains

SPEAKER_03 24:34

I mean, people lose careers, relationships, their dreams, their children leave home, parents pass away. What would you say to someone who doesn't recognize themselves anymore? They don't have that sense of identity. They they've ignored it for so long, and now that they're faced with it, they're like, Who am I? They've reached the mountaintop and they're like, Oh, is this it?

SPEAKER_00 24:58

Is is it is that it? Absolutely. And they're in these liminal states, these transition transitional states. And and to recognize it's okay to hurt. It it's okay, it's like a uh it's like growing pains. Um, you're changing, you're evolving, you're it's the uh, it's the you're you're getting out of the chrysalis and becoming that butterfly. It's these transitional states, and you're a little lost, you're a little confused. And oftentimes we just don't like that feeling. So we try to distract ourselves. Either try to pretend like we, you know, like we said before, of uh, oh no, no, it's the same, it's the same, it's the same, but you know it's not the same. You know, the kids aren't in the house, the routine is not the same, um, you lost the partner, um, you lost the job, whatever it is. It's not the same. And it's okay to hurt, it's okay to be sad, it's okay to feel your feelings. And then what do you do with that feeling? What do you do? And I always revert back to my baseline, which is how can I help someone with this feeling? If I'm feeling this, someone else has felt this, and how can I help people that are going through this experience as well? And I always feel better about myself if I am giving back to uh whomever it may be.

SPEAKER_03 26:20

Well, you're sharing your story because that's why it's important. We all have a story of some sort. And if we share it, then other people can see themselves in it. And that is when they can heal or be inspired or anything that could improve their situation by seeing themselves and what you did when you were were struggling. Absolutely. And I love how you speak on on curiosity a lot, and because I feel strongly that curiosity can create clarity. And if you have clarity, guess what? It becomes stronger than fear. Yes, we're no longer afraid of that thing, whatever it is, because now we're clear on the mess on what it is. We've looked at it.

SPEAKER_00 27:05

Absolutely. We've looked at it, we've we've tested it, and we've now we're trusting it. And that's the clarity of the values, the message of what we want to bring to the world, the gifts that we have to give to others, whatever they may be, the gifts that we're giving ourselves. And then we wake up going, I know the direction, I know where to go, I trust it, I like it. And for the most part, it feels good. And so, but you can't get there if you're not curious, because otherwise you just stay stuck in the ruts. You stay stuck in the identity. Maybe the identity was given to you by parents or teachers or society of like, oh, you're good at this, we want you to do this, or uh, we get domesticated into being certain people that society wants us to be. And there's a value to that, but it may not necessarily serve us as individuals as well as kind of figuring it out. Because oftentimes those identities, well, it's like when we go to college and we pick our major. So, like at 18, you know, you're kind of creating the path for the rest of your life. Oh, I'm gonna be an engineer, a scientist, a doctor, I'm going to be this, this, and this. And then we look at each, we drive past the high school, and you're like, those are kids, you know, those are babies. And it's like we don't feel like we're babies when we're 18, but we look at those 18-year-olds, it's like, how in the heck is that person going to be in charge of writing a story for this person that goes through all of adulthood? And the fact is, sometimes it doesn't make sense that, oh, now that we're 35, 45, 55, that that person with all of their experience and all of the knowledge says, you know what, it's okay if I change the story. I can use the eraser here inside, you know what, I don't want to do this anymore. I want to explore something else. That 18-year-old set in motion a certain story, but maybe that's not the right story for who I am today. And maybe I can explore other avenues.

Self-Advocacy, Labs, And Sleep

SPEAKER_03 29:22

Yes, identity in young people. I'm a retired youth minister. I've dealt with that a lot in those 18-year-olds because they're lost simply because they weren't given a voice and because they have expectations from parents, family, friends that they are trying to live up to. And they know those have been drilled into their heads, their brains, about what the expectation is, and they're trying to live up to that their whole life. Yes. Then they figure out this isn't serving me, this is not who I am. One day they will figure it out, either the hard way or the easy way.

SPEAKER_00 30:01

Yeah.

SPEAKER_03 30:01

But it took me forever.

SPEAKER_00 30:03

Yeah. And one of the things, it's like it's okay to change. It's okay to say, this is not serving me anymore. I re this is a little strange uh example here, but um through I I things will change in my body and like literally change that. It was a few years ago that I just started at this horrible itchiness in my scalp, and it was just kind of in the crown, it's just like, what's going on? And uh went to the doctor and did some allergy testing, and it's just all of a sudden my body decided to be allergic to you know certain foods, which just so happened to be like the main foods that I was consuming at that time. And so it's like, and this didn't happen right when I got sick, it's just the evolving nature of my immune system, which is a little wonky. And it it's one of those things, it's like, oh, I have to eat completely different now. I have to change up. I I can't go to my usual routine. And it feels weird, it feels forced at first, but then you just get familiar with the change. You have to be, you get really curious. You start looking at all the labels, you know, you it's like, okay, what would I like? What can I eat? What works kind of like within bounds? You're Googling everything or using ChatGBTs. Like, what can I eat? What can I need? Snacks idea, all these different things. But after that curiosity, you evolve into that next. Okay, you know, and this is my dietary story, but you will evolve into the next, and then you're like, oh, my symptoms are, you know, are far less severe. Um, sometimes I get some wonky symptoms. I have no idea where that's coming from. But it's one of those things. It starts off with that curiosity. What else could I be consuming? And and then it's just now it's just I don't even think about it. And I and it seems strange that it was even problematic to begin with, uh, in terms of having to make that transition. But the brain knows what it practices. And once we start practicing a different story, we allow it to be a good thing.

SPEAKER_03 32:14

If we listen to it, it will tell you what it needs and what it doesn't need. Yes. And so you were listening to your body when food where food's concerned, because I'm sure I mean a lot of times I've been to so many specialists trying to figure out why I'm feeling the way I am or was, and they would say your labs look great. There's nothing wrong with you. Maybe you should see a mental health professional. And I said, No, there is something going on. So I had to do my own experimentation with food and things. There are tests out there. Did you take the test or did you just figure it out? Oh yes, we did.

SPEAKER_00 32:51

No, no, uh, I did um delayed allergy testing where they put these little pucks on you. It's not just like the shot, it's they they tape the stuff onto your body. And that's how I found out that um you have it for a few days. Um but um and so I I did do the testing, and uh and that's how I was able to, yeah. But there's other things where uh the doctors would say, Oh, your um your cortisol is high, or you know, your um homocysteine is high, and there were they would just kind of say it, and then they would just kind of move on. And I was like, that's strange, you know. It's like so I would take the dive and I would kind of look at different things, and and I did some genetic testing, and I have MTHFR gene, and that's why my homocysteine's high. And if I take methylated B vitamins, that can bring down my homocysteine. And so uh, but the doctors weren't very helpful in that. They would identify it, but then they would just keep on walking, so to speak, in the conversation. And I'm just like, wait, you know, this is being flagged, and you're just walking past it, like, oh yeah, this isn't all that great. And but then I would have to say, well, I wonder where this would be coming from. And uh I remember when I was insomnia was horrible, horrible, horrible from the black mold. And uh went to the all the sleep specialists, did the in-lab sleep study, did the home sleep study, did all these different things, and no one was very helpful, took tons of different medications, and they weren't even all that helpful. But then I did this oral cortisol testing throughout the day where you just kind of spit into these vials, showed my cortisol was just highly elevated throughout the entire day. So when I would tell the doctor, it's like it could be one o'clock in the morning, it would just feel like it's 1 p.m. I've I would just feel wide awake. I wasn't anxious, I wasn't stressed, I was just wide awake because my cortisol was too high. And the problem is, it's like there's no medication that would bring down cortisol, but there are supplements that will. And so, um, and once I started going down that route, I was able to sleep a little bit better. So I was able to sleep much better. But that's the thing. I had to take control over that because the doctors weren't very beneficial.

SPEAKER_03 35:16

Right. The more of the holistic approaches, that's not what they do.

SPEAKER_02 35:21

Yes.

SPEAKER_03 35:21

If you want to take that approach, that's up to you. But there are more and more specialists that do help you along that road. I have MHTFR too. And so it's a gene. It's a gene. Not everyone has it. I think I forget the percentage of people that have it, but it definitely can cause some some issues that are tough to diagnose.

SPEAKER_00 35:45

It can be, yeah, absolutely. Slow and uh C OMT, you know, MTHFR. These are things that aren't commonly looked at, and you're only gonna come across it if you remain kind of your own advocate and that you're curious and you do your reading and you Google things and and you are kind of persistent. No one just walks into the doctor's office and they're gonna say, Oh, you have MTHFR. And it's like you're not gonna find that diagnosis there. But if you are persistent with it, you can kind of come across it. But you have to remain your own advocate. You have to believe in yourself.

unknown 36:22

Yeah.

SPEAKER_03 36:23

Yeah, you do. And find other people going through the something similar.

SPEAKER_00 36:26

Oh, yes.

SPEAKER_03 36:27

It really helps. There's so many forums and pages, group pages that you can join, but be careful too.

SPEAKER_00 36:35

Well, yes, you know, and uh the one of the downsides with a lot of that online is that it can people can get disheartened because there is a because the people that have the condition that treat it well and are feeling better, uh, they're not online. So you you get a reflection of all the people that are not treating it ideally or they're in a place of negativity. And so uh a lot of times people are going there looking for answers, and sometimes you can find that. Um, I found kind of Reddit to be a pretty kind of useful resource of people, you know, putting down ideas of what they have done. But the forums where people are just kind of complaining um, you know, about how horrible it is, uh it can it can take a little bit of our um our vitality out of us.

SPEAKER_03 37:32

People talk a mean game about everything, mindset, the pause, a lot of that is out there, uh burnout, all the things, but no one's offering solutions. Okay, I understand that, and I probably am experiencing that, but what do I do now?

SPEAKER_00 37:49

Yes.

SPEAKER_03 37:49

How do I fix that? What's the action?

SPEAKER_00 37:52

Absolutely. And that's where you know you we have to try to be as practical as possible. I like giving people things, and I like to try to make it as simple as possible. Because if you give someone comp something complex, they're just not going to do it, you know, at the end of the day. And it's like, no, we need we need to kind of start with the basics. And the basics won't necessarily magically cure you, but we're looking to improve quality of life. If you don't have um some sort of you know movement, you know, in your in your day, it's gonna be problematic. And but you don't have to join a gym. Can you go take a walk? Can you do some stretching? You know, can you can you move your body somewhat? You know, what do you do to relax? Can you do progressive muscle relaxation? Can you do a breathing technique to kind of improve your heart rate variability? Yeah, no, it's not going to be the magic cure, but it can, these are all steps in terms of improving your quality of life, making you more resilient and giving you a more flexible nervous system.

SPEAKER_03 38:53

I agree. That is so true. And

Medical Trauma And Better Care

SPEAKER_03 38:56

medical trauma is something many people experience but don't really talk about. And so what do you wish people understood about the emotional side of navigating illness in the healthcare system?

SPEAKER_00 39:11

I think it's partly just like what you said. It's like it's completely understandable that we label it as a trauma as we're going through and we don't feel heard. We don't feel uh we get these horrible diagnoses that don't match anything, and that they're just kind of being thrown out. Uh sometimes people will just throw medications out. It's kind of like, you know, everyone who's chronically ill will be on gabapentin uh at some time because doctors will just, and I'm not anti-gabapentin, but it's just kind of like they throw it out there as like, I don't know, here, try some gabapentin. And and we feel completely demoralized. I think demoralized is um is a good word for it because I can remember so many times, and people who don't have a chronic illness don't truly appreciate this, which is a new specialist is like Christmas Day. We are like a new appointment, like this person will understand it, this person will get it, I'll get the diagnosis, this is gonna fix me. Um and you're just so, so excited for that. And then feeling completely not hurt, not and not given a direction after the diagnosis or after the appointment, and then walking back to the car going, what do I do now? Like you were expecting you were expecting Christmas, but then you just got a lump of coal in that appointment. And you are just so demoralized and you feel so defeated, and the compass is just spinning, and you just don't know where to go. You don't know what that next move is because everything was so invested into that appointment, and it's traumatic. It's absolutely traumatic uh to be able to have those experiences.

SPEAKER_03 41:00

Yes, I agree completely. I've had so many things, and you go and they'll throw a tool at you, right? I mean, for whatever your issue is, you could use a tool, but at the time I'm like, okay, this tool is going to fix me.

unknown 41:14

Yes.

SPEAKER_03 41:15

But that's that's the whole reason for delay the binge is all about maintaining, sustaining change, because that's what doctors do not teach you. They give you a tool, it you may make progress, but how do you keep the progress going? How do you maintain it? Yes. They do not teach that.

SPEAKER_00 41:33

No, no. They are there to sell their services, which is predominantly a prescription pad. And again, it's I'm not anti-medications or injections or, you know, but um, but it some of them are surgeons, some of them just make money doing, you know, cortisone injections, you know, whatever it is. And you're walking into their business and they're going to give you what they're selling, but that may not be necessarily what you need. Um, and so you need to be aware of what this process is and um and what they're looking at and what they're not looking at. And because we're just desperate, we're flailing in the deep end, you know, trying not to sink to the bottom. And so we reach out, it's like, okay, I'm sick, I need to go see a doctor. But, you know, these p individuals are sometimes very, very narrow in their scope of looking at the human body and and kind of like in their get overly specialized because I knew, and I would see the doctors at first, and and I would tell them it's systemic. And it's like, yeah, yeah, I know I'm talking to you because my bladder hurts and you're the urologist, but I am telling you I have symptoms throughout my entire body. It's impacting me systemically. And they would say, like, oh, okay, yeah, I understand. Here, I can I can give you some FlowMax and here, try this medication. And it's kind of like, fine, I'll try it, but it's kind of like I have a systemic issue here. What's causing it? And what is that root cause? Yes, absolutely. And it it took some time to kind of figure that out. And I have the story of it now. Um, and so I'm less afraid of my body, I'm less scared. I have pain in my foot right now as I'm talking to you. I'm not afraid of it. I know exactly what it is. And so um, so I have the stories of it. Uh, and so that's well and good, but again, it's sustaining that, you know, that journey that we're traversing through something and we're trying to find something new. Right.

SPEAKER_03 43:39

Right. And I look for doctors now, and they're out there that treat your body as a whole instead of just having the specialty the blinders on.

SPEAKER_00 43:47

Yes.

SPEAKER_03 43:47

They look at your body as a whole. And those are the ones that are worth going to because they'll absolutely they'll help you figure it out.

SPEAKER_00 43:54

Yeah, there are excellent doctors out there. That's where I say it it it it's um Once one of the things we were talking about curiosity, that's the number one trait that I want to see in the physician that I'm treating with. Are they curious? Because if they're curious, they're going to work with me. But are they just going in there to find the right ICD 10 code and referral and medication, whatever? And once they land on something, and I've had doctors where I think it's this, you know, this is what's going on. And I'm like, no, that's not what it is. You know, I and I knew it wasn't, and it wasn't, and I was right. But they were stubborn. And it's like, walk away. And being able to walk away gives you uh it strengthens up your ability to advocate for yourself. Because when you have a not so simple illness, you have to learn how to speak for yourself. And it wasn't me arguing with them. That's not how I would speak. I would speak by just not making another appointment. I would speak by just, you know, walking out. I would speak by finding a new doctor. Um, so it doesn't have to be confrontational, but you have to realize this is not it. And it's okay that this person is not here, that this isn't the right dance partner for this. And so I can find the next person.

SPEAKER_03 45:19

Exactly. I love it when doctors say to me, Pam, I don't know what this is, but I can apply what I do know and maybe apply what you know, and maybe we can come up with a solution.

SPEAKER_00 45:31

Oh, that works for me.

SPEAKER_03 45:33

Yes. Just tell me what I'm saying.

SPEAKER_00 45:40

Because that person's brain is still open to a conversation, and they're not just trying to kind of like force an answer.

SPEAKER_03 45:48

And they do know a lot, right? That they can apply to us trying to figure it out.

SPEAKER_02 45:52

Yes.

Why Setbacks Teach More

SPEAKER_03 45:53

Many of our listeners aren't facing chronic illness. They're facing other setbacks, like loss, disappointment, even caregiving and exhaustion and what I call quiet depletion. What do setbacks teach us that success never can?

SPEAKER_00 46:11

Of how strong we we can be. Success is a terrible teacher. We really learn much more about ourselves and the world by failure because failure puts us in a situation where we have the setback and things don't go the way that we wanted to, where we have to kind of consider all these different options and what would work better. And what are the things that are in your control? You know, what do you need to bring into your life? You start asking yourself a million questions. But from that those million questions, you start kind of developing a new sense of an identity, your strengths, your values. Um, no one wins the day and go, I really wonder what my strengths and my values are. I wonder what I need to add to my repertoire of you know, my skill set. You know, no, someone says I won. And so it's good enough the way I am right now. But when you kind of quote unquote lose the moment, you have that setback. That's when you start, you know, considering how do I grow? How do I evolve? How do I become better? And so growth is ultimately in the setback if you allow it to be the teacher that it can be.

SPEAKER_03 47:26

I love that because I'm a big advocate for using pain for purpose. That's how I healed from all of my horrible trauma in my childhood. I I turned around and I used it for energy, for fuel to do good things. So, what chapter of your life did you never want to write, but now you can't imagine leaving out of your story?

SPEAKER_00 47:48

Well, I think it's the the chronic illness that I never thought that you know in my 40s I would develop a chronic illness that I would never be able to shake it and I would have to live with, you know, the pain and um my my body never operating the same. And um I never thought, I thought like, oh, okay, if you know, 70s, 80s, you know, it's like, you know, towards the end, you know, the last chapter, maybe we tack on a few specialists, a few extra medications or whatnot. I didn't think in the middle of my life, uh, I would be slapped upside the head with such a uh uh an unexpected detour. And that's what this has been. And out of that, there's been a lot lots of wonderful moments. I wouldn't be talking to you. Um I wouldn't have, you know, these books and podcasts and poetry and this, this, and that. I wouldn't have all of these different, you know, uh things that I'm proud of. Um, and I wouldn't know certain things about myself because um, like I said, I was too busy, you know, helping other people edit their stories that I really wasn't paying attention to my story. And so this has brought more clarity of who I am and what I enjoy about myself and what that story of just Jeff is. Who's Jeff and how does he want to live life?

SPEAKER_03 49:18

Mm-hmm. I love that. This podcast is built around the idea, transformation happens in the pause between what happens to us and what we choose to do next.

SPEAKER_02 49:29

Yes.

Ask For Help And Find Tribe

SPEAKER_03 49:30

So looking back now, can you identify a specific pause where a different choice changed the direction of your life?

SPEAKER_00 49:40

Uh I can remember um it was that I knew certain doctors weren't helping me, and I had to go find other doctors. And the doctors, the new doctors would help me, and then but I would hit that wall where the help wasn't that's about as further, that's about as far. So think of it as this long journey, and I would have different relationships with different doctors through just parts of it, and I recognize that these are just temporary people in my life. This wasn't going to be the doctor for the rest of my life, that this was just the doctor for the moment. And then I would take the next stepping stone of a different doctor and a next one. So being able to advocate to get to the next, but also being able to let go of that relationship because it was no longer serving me. And understanding that these um that these individuals were ultimately leading me to where I needed to go, but they weren't going to take me all the way there just with themselves alone, but it was a transition from one doctor to the next to the next.

SPEAKER_03 50:51

Gosh. So a person can build a meaningful life without getting their old life back. So if listeners remember only one thing from today's conversation, what would you hope it would be?

SPEAKER_00 51:06

That expansion, joy, happiness, you know, these things that you may not feel in the moment of the dark nights of the soul, you know, still remained as possibilities of future chapters. Um, and just because you're down in a dark hole in this moment and you don't know what's going to happen next, there is so much possibility if you ask for help, ask for help from the family and friends, from the community, the people online, the doctors, whomever it may be, surrender to the fact that you don't have to do this completely on your own because we're not designed to do things on our own. And that's not what human beings, you know, we are tribal, you know, we we exist amongst a community. It could be a church family, it could be whatever it may be, but ask for help because the possibility remains, even though it may seem different, there can still be, you know, the sunsets, there can be the beautiful moments. They all are still, you know, locked away within you, and you will pull them out and they will emerge in due time, but do not lose faith in the possibility of a better tomorrow.

SPEAKER_03 52:26

In other words, y'all find your tribe.

SPEAKER_00 52:29

Yes. We all need our tribe. Yes. Absolutely. Absolutely. Yes.

SPEAKER_03 52:34

So so, Jeff, how can we find you? What can you tell us how how we can best find your work?

SPEAKER_00 52:39

Well, if you're looking for a chronic illness coach, um, you can go to drbon e dot live. That's drbone.live. That's the easiest way to get a hold of me if you're looking for a chronic illness coach.

unknown 52:51

Wow.

SPEAKER_03 52:52

Yes, I think a lot of us could use that.

SPEAKER_00 52:54

Yes. If you need that to be a part of your tribe, and I'm not gonna pretend that I have all the answers because no one has all the answers, but I can be a useful piece in in the journey because I know it from being, you know, on the uh on the side of the the provider, and I know uh what it's like to be on the side of the patient. And I know both sides of that coin.

SPEAKER_03 53:20

Yep. It truly takes a village, I'm just saying.

SPEAKER_01 53:23

Yeah.

SPEAKER_03 53:24

What a beautiful conversation. One of the things that stayed with me from today's discussion is this life doesn't always ask permission before it changes the script.

unknown 53:37

Yes.

SPEAKER_03 53:38

Sometimes the chapter we never wanted becomes the chapter that teaches us the most. So Dr. Bone reminded us that while we may not get to choose every circumstance, we do get to choose whether those circumstances become our identity. And sometimes the hardest part of healing isn't letting go of the pain. It's letting go of the version of ourselves that was built around it. And maybe the invitation today isn't to erase the difficult chapters. Maybe it's to stop allowing those chapters to be the entire story, not to spend all your energy trying to get your old life back, but to begin exploring what it is still possible from where you are right now. So thank you so much, Jeffrey, for being here with us today. I I think that we're gonna play this one over and over.

SPEAKER_00 54:35

Well, thank you very much. Thank you very much for hosting me today.

SPEAKER_03 54:38

Oh my goodness, I appreciate it. It was an honor, truly. So if this conversation resonated with you, I hope you'll share it with someone who may need to hear it. And if you'd like a little encouragement between episodes, I'd love to stay connected with my newsletters. You can sign up for that on uh newsletter.authorpjhamilton.com. And then on Thursdays we have Behind the Mic, where I share reflections and takeaways from this conversation and all about Dr. Jeffrey, and um just explore how they apply to our everyday lives, their message. We want to get their message out there and help them. So share it, and you can join both of those communities again at newsletter.delaythebench.com and newsletter.authored pjhamilton.com. Because your past does not define you, it prepares you. Until next time, pause, choose, build momentum, and finish stronger. See y'all next week, and thanks again, Jeffrey.

SPEAKER_00 55:45

Thank you.

SPEAKER_03 55:47

Hey, it's me Pam, and before we go, just a quick reminder. Everything we share here is meant to encourage, educate, and get you thinking. But it's not a substitute for professional mental health, medical, legal, financial, or any other licensed advice. I'm simply someone who's walking through life, learning right alongside you. And I'm grateful we get to learn together. Always seek the guidance of a qualified professional for your unique situation. Thanks for spending this time with us. Until next time, remember sometimes the biggest change begins with one small pause. I'll see you on the next episode of Delay the Binge.