From Mold to Meaning: Dr. Jeffrey Bone on Pain, Grief, and Practical Coping Skills

Cat York interviews Dr. Jeffrey Bone — chronic illness coach, author, and host of To the Bone — about his personal journey from years of misdiagnosis to a diagnosis of chronic inflammatory response syndrome and common variable immune deficiency. He describes the emotional toll of not being believed, the hidden loneliness of chronic illness, and the long road to proper treatment.

Dr. Bone shares practical mental tools for coping with pain and uncertainty, including expressive writing, asking for help, setting boundaries around online research, and using creative expression to rebuild identity and purpose. This episode offers validation, concrete strategies, and a message of community for anyone navigating long-term illness.

To learn more about Dr. Jeffrey Bone, his podcast or to purchase his books please visit: drbone.live

Dr. Bone can also be found on Threads @restless.human.studio

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The Center for Chronic Illness is a national nonprofit organization serving patients and their loved ones across the United States and in a number of other countries. Their mission is to promote well-being and decrease isolation for those impacted by chronic illness through support and education. CCI focuses on three main pillars in providing support and education to the chronic illness community: Emotional Well-being, Health Education, and Community.

Transcript

SPEAKER_01 0:03

Hello and welcome to the Call of Her Cat Podcast, where we share honest stories of resilience and recovery. I'm Kat York, and my mission is to hold a supportive, honest space for candid discussions on addiction, healing, and breaking the mold. Whether you are exploring sobriety, navigating challenging family cycles, or working hard toward finding self-love and empowerment, these conversations are for you. As a gentle reminder before I introduce our guests, the Call Her Cat podcast is for informational purposes only. The views expressed by the host and the guests are their own personal opinions and stories and do not constitute professional advice. Please consult with a licensed professional for any medical, legal, or psychological concerns. And today, we welcome Dr. Jeffrey Bone, a chronic illness coach, an author, and host of the podcast To the Bone with conversations on pain, illness, and meaning. Dr. Bone helps people navigate the psychological and emotional realities of living with long-term illness and pain. His expertise is both professional and deeply personal, as he developed a complex chronic illness and experienced firsthand the frustration of medical misdiagnosis. His approach lends psychological insight into lived experience and practical tools for coping with pain, fatigue, and uncertainty. We'll be discussing the emotional toll of misdiagnosis, not being believed, the hidden loneliness of chronic illness, and practical mental skills for coping with pain and uncertainty. With that being said, please join me in welcoming Dr. Jeffrey Bone.

SPEAKER_02 2:02

Well, thank you very much. That was very kind of you. Very generous introduction. I'll try my best to live up to it.

SPEAKER_01 2:09

Is there anything I missed or that you want to add?

SPEAKER_02 2:11

Oh no, no, absolutely. Uh I love peanut butter, and my favorite color is navy. And uh it's kind of like if you know all of that, okay, that's about as deep as I get there.

SPEAKER_01 2:23

So would you like to tell us a little bit on how you got started as a chronic illness coach? Like where it was started for you?

SPEAKER_02 2:34

I had I had been working as a psychologist, and I was working oddly enough with the chronic pain chronic illness community. And about approximately a decade ago, I was working in an office all by myself. It was just my office, and the building had been turned over in bankruptcy a few times. Wasn't terribly well maintained, unfortunately, for me, because there was black mold in the HVAC. And I did not know that this was the fact until I had uh developed this horrible headache from sinusitis, and I had gone to an ENT and they prescribed pregnosone, which is a pretty common medication that you would give someone if they're experiencing a sinus infection. Well, my body exploded, my feet felt like they were vibrating sand, my bladder hurt. Uh, I had these adrenal rushes, memory issues, fatigue, couldn't remember the name of my own children, different pain in my head. It was just terrible. And I then just went to tons of different doctors across the board, neurologists, psychiatrists, uh, multiple ENTs, podiatrists. Uh, I went to them all internists, and the my symptoms were just all over the place. And so I didn't fall really nice and neat into one of their decision trees. So they just kind of either either just said, hey, let's just focus on this one little body part, when I kept on saying it's systemic, it's systemic, or they would tell me, Oh, maybe it's just it's just anxiety. You maybe you're a little stressed, and that's what's going on. And it didn't turn out to be stress, it was mold, which caused uh a condition called chronic inflammatory response syndrome, which then triggered another disorder called common variable immune deficiency. And right now I have to infuse immunogoblins in once a week for this condition. So if anyone's donating plasma, that plasma is being used to help make my medication. So I very much appreciate all those plasma donors out there.

SPEAKER_01 4:46

So as you're going through all these appointments and doctors and visits, can you describe what it's like that experience of being misdiagnosed or not being listened to, like the emotional toll of not being believed?

SPEAKER_02 5:06

It feels like a gut punch. I remember talking to one, it was a concierge. I ponied up and paid a little bit more money because I thought I would get a better opinion. And this guy decided to look at me and tell me it's just anxiety. And here I am. I'm a I had been probably working with people for about 16 years at that point, and I'm a clinical psychologist, and you're telling me that it's anxiety. Now, mind you, I've had anxiety my entire life, I know exactly what anxiety feels like, so I'm not new to anxiety, and this was not it. My body is just uh wildly out of control. But since they didn't know what it was, well, then of course, let's blame the patient here. And because the last thing that they want to ever do is say, I don't know, you know, God forbid that. And so they just throw the psychic psychological label of anxiety on it, and uh it feels extremely demoralizing. Um, I think most people with chronic illness can relate. When they're going to a new doctor, it feels like Christmas, it feels like it's a holiday, it feels amazing. Like this person is going to get me, understand me, and they're going to get me back to the person I once was. In the beginning, we have so many hopes for that. And then to walk out of that office, as I had done multiple times with multiple doctors, and just walking back to the car and just thinking, now what? You know, just the compass in my hand, so to speak, the metaphorical compass, it's just spinning around. I can't find my true north, I can't find what to aim for next. And it's so demoralizing.

SPEAKER_01 6:57

Now, as you mentioned, you're a psychologist. So this is anxiety is not new to you.

SPEAKER_02 7:03

Oh, it's not new to me at all. Either treating anxiety or um or even experiencing anxiety, none of that is new to me. And um, and but I just had a collection of symptoms because it was systemic because it was my immune system that was going haywire. Everyone was just looking at, let's look at this. Well, your kidneys are fine, well, your heart is fine. And it's like, but they weren't looking at the larger systemic piece, which uh was the immune system, wasn't even considered. Now, what ended up happening is that I go to a functional medicine doctor, pay lots of money, and I get treated with uh binders essentially to kind of help bind out the mycotoxins because the mold what what gets put out there are different mycotoxins, and a lot of people can clear it. Not all mold is neurotoxic. So just because you have mold in the house doesn't mean that it's neurotoxic. There's lots of different species of mold, but I do this for a year, and it's not not very much fun at all. Different IVs and different modalities, but I'm better, but I'm just not I'm just not having any good days. And I'm about to go to the Mayo clinic, but before I go to the Mayo clinic, I say, you know what? Let me look at the hospital directory, let me look at the different departments, and let me try to do that. Because if you go to Mayo Clinic, that's what they're doing. They just send you to all these different uh uh departments. So I'm looking through the the list and I see toxicology. And I don't exactly know what toxicology does, to be completely honest, but I'm just thinking, you know what? I'm feeling toxic. That's where I'm going. So I go there and this very nice gentleman, older gentleman, he doesn't believe in any of the mold stuff. He's familiar with it, and I don't care at this point. I'm just looking to get better. And although he didn't believe my, you know, the mold was the issue, he did take me seriously. And he did this vast array of different blood work and what showed up on the blood work, which the other doctors didn't do. He tested my immunogobulins, and that's part of the immune system. It's coming out of the bone marrow, it's a specialized B cell that kind of carries these different immune uh parts of the immune uh immunogobins, part of the immune system. And mine were low. And so then he sends me to an immunologist. That immunologist gets the paperwork and says, you know what? We have to give you this vaccine, and we get and then we're gonna test to see if you made antibodies to it. So a month later, I come back, I do the blood work, and she says, You didn't make any antibodies. So basically, if you gave me this vaccine, I don't make antibodies. My immune system is narcoleptic, it doesn't get out of bed, it doesn't react. And so what happens? I get diagnosed with common variable immune deficiency, and then I'm put on immunogobulins, which entails basically me putting two needles into my sides every single week and then infusing the medication in over about approximately an hour. It's called uh subcutaneous uh immunogobulins.

SPEAKER_01 10:30

How long from the start of going to doctors did it take you to get diagnosed?

SPEAKER_02 10:36

I think it was around two and a half years.

SPEAKER_01 10:40

And were you able? Oh, I'm sorry.

SPEAKER_02 10:42

Oh no, no, go ahead. Were you able to to work at this time, or were you just I could barely work, I was so fatigued. It was the fatigue I couldn't sleep. There were times when I was taking some heavy duty prescription medication, and I still couldn't sleep, and so I was incredibly fatigued during this time, and uh and it was very difficult. So it was very hard to work at all whatsoever.

SPEAKER_01 11:10

Were you in physical pain?

SPEAKER_02 11:12

Yes, and I still have pain to this day. I have uh burning sensation in my right foot and in my left forehead, uh, nerve pain. The nerve pain was uh more severe in the past, but I've done countless things to try to make it better. And it has gone down and it's uh relatively mild and doesn't really impact my activities of daily living, but it's still there and it's been a constant companion over the past decade.

SPEAKER_01 11:41

Now, did you have any support during this time, like family or friends? Is your there was family?

SPEAKER_02 11:47

Um, there was family, but uh the issue was that even they didn't really know how to help me, uh, they didn't really know what to say or what to do. Um they were generally supportive, but at the same time, it's kind of a mystery to them as well. And so that there was some family support, and uh that was about it.

SPEAKER_01 12:12

Where where do you think obviously there's gaps when it comes to chronic illness because not everything can be seen on a scan? Yes. I mean it took it's you could you it took you two and a half years to get diagnosed, you're in pain, you're fatigued, you're barely. With a PPO, yeah.

SPEAKER_02 12:29

And so I could go to all these different doctors that I could self-refer myself to, which sped up the process. So there, I'm sorry, but I I apologize. I interrupted, I stepped on your question.

SPEAKER_01 12:41

No, that's okay. No, that's okay. I was just gonna ask, what do you think doctors need to do to kind of narrow that gap a little bit as far as like listening to the patient and like really well?

SPEAKER_02 12:54

The thing is, they're gonna be right most of the time. That's the unfortunate part, because um the law of averages is going to be favorable to them. This my condition is considered to be a zebra condition, which is a rare condition, and a zebra condition basically means that if you hear hooves in the street, you're going to think horses, not zebras. So they would the doctors that I was seeing, they would always think, oh, it's a horse. You know, it's it is anxiety, it is just one of those more common illnesses, and it's not one of these more rare instances. Um, but the problem was that they I didn't feel as though that they believed me in terms of when I would talk to them and tell them it's systemic. I even told one ENT because I was familiar with this one individual, he was a uh kind of a famous um individual in the biohacking community. His name was Dave Aspury. He's the one where everyone was putting butter and stuff into their coffees with bulletproof uh coffee. And so I was familiar with his story, and he was uh he was first uh made ill from chronic mold himself. And so I asked you know one of my ENTs, could this be mold? And I remember he said, like, well, even if it was, what would you even do? Uh was his response. And so I think there's a general lack of awareness when it comes to the environmental illnesses, whether it's um Lyme or a co-infection of Lyme or uh black mold. I think there's a huge gap. And unfortunately, uh it is very real that people can get sick from these um these situations, uh, from these environmental illnesses. But uh and I went to some very nice uh hospitals and doctors, but um they just didn't have that perspective of okay, could this be an environmental illness? And you know, um, what should we go down in terms of the blood work to be able to uh support this individual? And if it is systemic, maybe we should look at immunology as a referral source. Um, but instead, what they would do is so I would go to the urologist and I would have bladder pain and I would get flow max. And it's just like, here, try the flow max. It was this illusion that they were doing something, and even he said I had I was scoped, you know, you know, talk about an ego death, you know, especially for a guy that's not used to that. I had my bladder scoped, and and I went through it all, but they they wouldn't say, I don't know. Maybe I should refer you to some other people, or maybe we should look at this differently. They would just say, Oh, well, I prescribe this. So here you take this and then come back in a month. And I think there you need a little bit more humility, and you have to be willing to say, I don't know, and refer out if you really don't know, and just instead of throwing these wild guesses at people.

SPEAKER_01 16:07

I hear so often, I've heard on my own journey, oh, it's just anxiety, or it's your hormones, or it's stress. And because again, it can't be seen on a scan or without some really specialized blood lyric like what you had, they're not gonna find it. And as you're going through and as you're going through this process of your life changing, what was it go what was going on in your head is like how am I going to adapt to life with a chronic illness? Like, what was that like for you?

SPEAKER_02 16:47

You know, uh because I'm a psychologist and because of all my training, it's basically came down to me uh crying a whole lot and uh being really scared. And it's kind of like scared, confused, and lots of tears. But because before I'm a psychologist, or what you know, I'm a chronic illness coach now. Before all of my training, before all that stuff, I'm a human being, and I'm just a simple human being. And uh so I there was a lot of grief, and I was I had to grieve uh what it was. I was very confused. I didn't know what the answer was going to be, I didn't know what the future was going to be, and it was just surviving one night after the next. And I say that because insomnia was so terrible, and just then then I had the honor to survive one day after the next, and I had terrible, terrible fatigue. And so uh, and really what it was at the end of the day that helped kind of pull me through it was just holding on to curiosity. Well, I wonder if this would work. A supplement, a modality, and I tried everything. Uh, these red light beds, hyperbaric, oxygen, ozone therapy, pulse electric, magnetic frequency, tesla coils, all the supplements in the world, different um versions of IVs. I was throwing everything at it. And um, and it was that curiosity of like, I wonder if, and uh which which helped me pull through these difficult days.

SPEAKER_01 18:24

And how does your how does your life look now? Um, now that you're getting the proper treatment?

SPEAKER_02 18:31

Well, my health is better. I still have sinus infections, just getting over one. I have frequent sinus infections, sometimes it turns into vertigo, um, but they're not as frequent and the pain isn't as bad. The fatigue isn't as bad. There's low grade fatigue all of the time, which I call a kind of sandpaper fatigue, where it's just it wears things down a little bit. I can function, like I can, I can do things. It's just that I'm always a little tired. I'm never, I'm never really up as much as I would want it to be. But what I found was, okay, I stabilized the the medical aspect, but then I needed to stabilize the identity. And I needed to kind of find out who I was as this individual. And for no particular reason, other than it was something that I could do on my phone, I just started writing poetry. And I'm not going to pretend that it was good poetry, it was just poetry, and it was this cathartic moment of just releasing this information because sometimes it's very hard to share pain. Pain in some ways unshareable. And uh, I always like the quote from David Foster Wallace: how can I have all of this inside of me? But to you, it's just words. And I needed the words to come out, I needed to find different ways to have that catharsis, that emotional release. And so I turned to poetry, ended up writing two poetry books, and it was just something for me to take control over and express. And I wrote them for myself. It wasn't a side hustle, it really wasn't to monetize anything. I just wanted to see if I could do it because I needed some control, I needed some agency, and I needed to be able to express myself. And then that uh, you know, led to some chronic illness journals uh because I found it helpful to go, you know what? It really helped me to write, and I want other people to have the opportunity to write, but maybe they don't know what to write about. So I'll give them a lot of questions and then they can tell their story. And that's breath between battles and uh the expanded life, two different chronic illness journals, and there's just opportunities because why I like uh these um journals is because there isn't a yellow brick road here. You're ill, you're sick, uh, there's something wrong with you on a physical basis. There's not one way to think about it, there's not one meaning to life, there's not one value that you need to hold on to, but we are we all have these individual stories within us. And these were just permissions here to tell your individual story. And then I, you know, I was just looking to have fun, made some uh three different uh coloring books just for fun, you know, just for fun. Um, and again, there's different ways to express yourself, sometimes it's through words, sometimes it's through color. Um, and uh, and then after that, the podcast, just finding a different way to express myself. And I found that to be so essential of trying to find myself in the storm of chronic illness.

SPEAKER_01 21:50

Because you touched on something that's that's so important is you know, kind of who are you after you get the diagnosis, you know, the rebuilding of your your new normal. So to speak, and your identity. And I like that you created these journals because people living with chronic illness, you know, we keep a lot inside because as you stated, most people don't understand. You know, they may not get it. They may not even believe you sometimes, whether it be doctors or spouses or friends. You know, and you created these books and I think it's it's beautiful that you've done that because I think and created the podcast to give a voice to this community that sometimes kind of gets overlooked.

SPEAKER_02 22:37

It gets overlooked because it doesn't have a clean ending. It doesn't, it doesn't have that. Um, and I'm not I'm not um putting down cancer, but I think everyone loves the the story of cancer when people get to ring the bell as if they're like that person, you know, did their chemo and they rung the bell and they're like there's a finish line, there was a beginning, there was a journey, and then like the bell got rung. And I think as a society, we we like things that have a completion, but with chronic illness, whatever it is, lupus, ms, you know, uh an autoimmune disorder, a primary immune disorder, there's no bell-ringing moment of like, aha, I crossed the finish line with this. It's a loop that opens that never closes. It's a cliffhanger that always remains unresolved.

SPEAKER_01 23:31

Yeah. And you're always and a lot of people with chronic illness, they're not just like sitting on their hands, you know, waiting for someone to help them. They're doing their own research, they're you know, finding their own doctors, like you did, reading books, looking into what they should do next. And could you dispel some maybe some misconceptions about people with chronic illness?

SPEAKER_02 23:54

That they're lazy. Um, that it is so damn boring to be stuck at home. Um, every single person that I know with the which I mean thousands. I've treated five over five thousand people in my career. None of them want to be at home. All of it's it doesn't matter if they were some sort of CEO or they were in charge of the fries. They want to work. People like structured. People talk about the Sunday scaries, and the Sunday scaries is kind of like this unstructured time, uh, kind of Saturday evening as you're kind of going into the week. Well, it is scary for some people, or it's just uncomfortable for people because it's unstructured time. Well, with chronic illness, there is so much unstructured time, and it's kind of Sunday scaries, it's everyday scaries. And uh and people, I don't I people don't understand it's not a vacation, they they don't want to be at home, they don't want to be stuck in bed. Uh, they want to work because they want I an identity. As human beings, we want purpose. Purpose is tremendous for people, and um, and oftentimes we lose our purpose and have to regain a new purpose through chronic illness.

SPEAKER_01 25:22

Yeah, you have to reinvent yourself again because the life you the life you once knew, it's like it's always there somewhat. You can you're almost kind of like on the outside looking in at your own life, you know.

SPEAKER_02 25:35

Oh, yes, you know, 100%. And I like to think of it as that life was shattered, and the job now is taking up those shards and making a mosaic out of it. Because you can't at first we all try to do this, we all just try to pretend everything's the same, that nothing has changed. I'll just be the same person, but we just burn ourselves out because our capacity is not the same, and that person that we once were just isn't available, and so there's that moment of acceptance and there's this grief, but it's it's just like my uh one of my books uh are uh the journaling, the expanded life. If you can set down that old life, you can find other areas in which you can expand. And I try to be an example of that before I was ill, never wrote any poetry, never wrote any books, any journals, never had a podcast, never did any of that whatsoever. I was only focused on other people's story, but once I became ill and things you know broke essentially, and my identity broke, I decided, hmm, what could I do? How could I express myself? Then the ball just started rolling, and so that's where we are, and that's how I'm that's how I find you today having this conversation. And this is oddly enough, part of my expansion. I had never been on a podcast before. Uh I was ill, and here I am. This is the expansion.

SPEAKER_01 27:18

What is it like to now be um what is it like as someone to be on the other end of needing help? You're a psychologist. What is it like to be on that end receiving help, like having to need it?

SPEAKER_02 27:37

I always like throughout my entire life, I was terrible at asking for help, terrible for asking for like a tutor or in college, going to the writing center or going to the professor for their office hours, just asking for help. And um, it was always, I'll take care of it, I'll do it. I was depressed my senior year in in college, and I thought, oh, if I'm gonna become a psychologist, I need to be able to do this on my own, which everyone out there listening is not the way that we do it. We do things together. It's solidarity, it's community. I needed to ask for help. I needed to be honest, I needed to work with people. And the last thing, it's it's our society. Our society is so ill, it can be so broken, and it really overemphasizes it's the individual, it's the Marlboro man, it's the cowboy. That's not what we are. We're human beings, we're tribal, we do this stuff together. So when in doubt, the answer is ask for help. And from whom? From anybody, from anybody, everybody. Ask for help. And so I had to learn how to ask for help. And asking for help is a skill, but the more that you do it, the you realize oh, this is actually how we're designed, and this is exactly how I don't know, 99.9% of our ancestors lived, you know, together and working on things together.

SPEAKER_01 29:13

How do is there a difference in how you approach someone as a chronic illness coach versus someone who doesn't have chronic illness when they come to you for help?

SPEAKER_02 29:27

When uh before like before uh my chronic illness, you know, working with people versus now is that the question? And so I I'm much more comfortable, and I don't think I really pushed it, and I don't know how um I was always very humanistic, so I was never trying to cross that finish line, I was never trying to fix people, I was allowing people to be who they were, but I understand that a thousand times better now that we cannot close the loop. We can make people more comfortable in that open loop. There's different modalities and different things that we can do. And we can recognize and and call it out that we're not going to close that loop, and we can have a relationship to the fact that we cannot close the loop. We can see it uh more safely and that it's okay that we don't have to start, we don't have to close the loop to be able to start living, is essentially the point. And um, and I can be a little bit more direct with people because there's certain things that I see now from being chronically ill that you just don't see unless you're chronically ill. You can go to the lectures, you can read the books, you can do all those things, but there's lots of little nuanced parts of just living with a chronic illness that I can speak to. I see more. I saw half of it when I was just educated, and now I see all of it with the education plus the illness uh itself.

SPEAKER_01 31:03

Are there um are there any practical word this, any practical mental skills that someone who's suffering with chronic illness can start to help them navigate their new normal?

SPEAKER_02 31:20

So one of the tools that I used um for myself, obviously, with all my little creations was expression. But you don't need to publish anything, you don't need to do anything fancy, and you don't have to even be able to write all that well. And so one of the very first things I would tell anybody is to do expressive writing, where you get a piece of paper and you write one long continuous run-on sentence, five minutes, ten minutes, and you're not talking about the past or the future, you're talking about the moment right now, whatever is spilling out of your brain in that moment. So if you were going to start writing, you would say maybe like, I don't know what to write, you know. So you would write down, I don't know what to write. And then you think this is stupid, and you write down this is stupid. Like that's what I mean. Whatever is in your mind in that moment, one no grammar, no punctuation, just one continuous run-on sentence, five or 10 minutes. It's a uh called expressive writing. And then at the end, you rip it up and you throw it away. Now you're gonna be more honest with yourself, knowing that you're about to destroy it. So it's not laying around the house, not no one else is gonna find it. If you have some dark thoughts in there, you can put it down there. But expressive writing is the very first place, and most people have a pen, pencil, and some paper, and it's relatively easy to do. And the science has shown that if possible, actually write it out by hand versus type it versus just say it. Write it out by hand if if you can, if that's possible.

SPEAKER_01 32:56

And what does that do for the for the brain when it as you're doing that?

SPEAKER_02 33:02

You have this emotional release. They should they have shown that cursing helps with chronic pain. Uh and you just like I bravo to whoever did that study, F and Bravo. But uh, but the idea is that a lot of our suffering runs through the emotional brain, and our emotional brain is like a tea kettle where we we need to let the steam out. By letting the steam out, the suffering diminishes the physical suffering, emotional suffering. We need to be able to let the steam out. We don't want to rage, we don't want to be out of control, we don't want to go swing at everything like it's a pinata, but by being able to have that controlled release, that's why talking to people helps. They've done all the research in the world. Um, and there's not one type of therapy that's better than the other. And it's like, well, that's strange. Like, shouldn't there be? And it's like, no, there really, really isn't. And the number one predictor of therapeutic success is actually rapport. It's not even what the person's even trained in, it's just how well can they establish a connection. And does it seem like that person's listening? I know people are gonna say, oh, CBT, cognitive behavioral therapy, that's the gold standard. That's just an easy way of um, they can manualize it, they can put it into a manual, and it's just very easy to kind of run it for individually or through groups, and because psychology itself, psychotherapy itself, is very hard to study because there's so many individual differences between the clients, between the therapists, that it's just easy to study, and that's what makes it the gold standard, not because it's actually better than any of the others. Do you find some stuff too?

SPEAKER_01 34:48

Or or or what do you think? Because I know when I was first diagnosed with with my chronic illness, I had this tendency to go down all these rabbit holes online in all these forums and the searching. Do you think sometimes at what point do you think that becomes not healthy or unhelpful to your to someone who's just going down that path?

SPEAKER_02 35:14

Well, when you're coming across people who are only kind of demoralize themselves and complaining, we all try to find where's my tribe, where are my people? And sometimes um when I go into those sites for me, um, the uh the immune compromised individuals, uh, they're all telling negative stories. And uh and I really don't want that information. I I want something that's a little more hopeful, a little bit more optimistic. But the hopeful, optimistic people, they're out living life, then they're not posting things online. It tends to be a little bit more of the pessimistic, frustrated, disappointed, uh, things not going right. So you always have to be careful of those groups. And what I would say is to structure the time. You we're all going to use AI and Google, we're gonna go and look at YouTube and all the rest, but give yourself the amount, the poisons in the dose, and say and be intentional. So, like, okay, set a timer on my phone and then say, okay, I'm gonna do this for the next 30 minutes. Don't jump into it without a finish line. And so I would say, one, you should always know and you should always look it up and use chat, use all those things, it'll lead to better conversations with your doctor, and they may hate it. We don't care. Um, it it gives you the ability for you to be knowledgeable, but at the same time, you don't want to get stuck in this negative rumination of it all. Go there, but you can't stay there and put a time limit.

SPEAKER_01 36:54

Yeah, that's important because you can, as you're struggling for answers, you try to find your tribe, you can go down this hole, and you you're almost just stuck there, you know.

SPEAKER_02 37:06

No, absolutely. Because you're you're looking for hope. Um, hopelessness is that nothing is gonna get better. Helplessness is there's nothing that you can do to make things better. And you're not you you want to be mindful of just what are my intentions here? Um, because you can get stuck, you know, just on Reddit. Um, that's another one I didn't mention, but I've used plenty of times, uh, being on Reddit and then just getting stuck in these negative stories and these negative loops, and you're just looking for a more kind of positive perspective. You're looking for information, and um, and I used to do that obsessively at first, obsessively, and but now I rarely look into it. Every once in a while, I'll see if there's anything in terms of latest and greatest, but uh part of that I think too uh underneath it is that in that obsession, you haven't grieved yet. It's kind of like you haven't recognized there's certain things that are gone that will always um be different from moving forward here, and because we're trying to we're trying to make this deal with ourselves that I can come across this missing piece. It's like raiders of the raiders of the arc. You're looking for that um that one little thing that's going to just make it exactly like it was before you were injured, before you were sick. And the idea is fantastic, it just doesn't exist. You know, you're still here, but the rules have changed.

SPEAKER_01 38:45

Yeah, and that like you said, that that is a type of grief.

SPEAKER_02 38:50

Oh, yes, it's the avoidance of grief, and because we want to think, and again, we're balancing it out, and you never get rid of grief. Grief always comes back. There is you know, there's no speed bump to grief. You it no matter how you deal with it, it's like you may set it down. Um, you know, it's like you may have to do an infusion reminder of where you are. It's like that you're sick, you have to make the doctor's appointment, reminder that you're sick. The grief will return. But the idea is to be able to set it down more quickly and for it not to hurt as much. But grief with chronic illness never really goes away.

SPEAKER_01 39:28

How do you handle the grief with your chronic illness?

SPEAKER_02 39:31

I try to deal with it honestly. I try to feel it. I try to uh, yes, I'm I'm one trick pony here. If if it really hurts, I I write poetry, it's the first place that I go because I can control it. When I'm sick and or I'm grieving, there's a part of life where I don't have any control that I'm feeling a little bit more helpless in that situation. So I'm always looking for places that give me agency. And um, whatever it is, writing a book. Um, I just finished one on uh existentialism and living with chronic illness called The Absurd Body. It's like I go and like look to complete that. I look to um see what I can make. I will feel down and I'm grieving. It's like, okay, if I'm hurting like this, there are people out there hurting as well. Let me go create a podcast. All my podcasts are solo episodes talking about just different things, and I will go and create with it. I will use it as my the pain is the muse for all my creations.

SPEAKER_01 40:41

What was it like for you to make that decision to start a podcast to start talking about having these conversations about chronic pain and illness?

SPEAKER_02 40:51

The word for me is potential. When you get sick, and it's like as we get older, we feel like our potential potential narrows as we get sick. It just amplifies the diminished idea of potential. Yeah, we feel like there's just less and less of us, and it feels like the world is getting very small. And for me, it's it felt great. It's like there was a little bit of trepidation. Is anyone possibly anyone just is there one person out there that would even remotely care to listen to it? Um, and you're kind of vulnerable, you're very kind of exposed in that way. And it took a little while to kind of shed that, and um, and then you know, there there were a handful of people that found benefit in it, and so it's like, okay, then it continues, and I'm up to 50 episodes at this point, and um, and just uh continuing to explore. And what am I exploring? I'm exploring my potential, and anything that feeds potential is what I kind of seek out.

SPEAKER_01 42:03

It's a it's an interesting pivot that life kind of placed you in, you know, to now have a chronic illness where you had to explore different potentials of yourself. You know, you had your life before and then now kind of after. And what's that like for you?

SPEAKER_02 42:21

Well, it it's one where uh sometimes stoicism, which going back is the grandfather of cognitive behavioral therapy, but uh it is one concept that I've always liked, which is a morfate, which is the love of fate. You can hate fate all you want, but then you just end up with the problem and hate. And so you might as well end up with a problem and love the problem to be able to see what you can do with the problem. And uh, my mom would call it the gift poorly wrapped. And uh, and so, okay, you gave me this poor wrapping, you gave me this illness, this pain, this problem, whatever it is. What can I do with this poor wrapping? And when I think about it personally, because my natural kind of like archetype of who I am, I'm a helper, and that's who I am. I've never been in a fight in my entire life. I'm not an aggressive person. Um, I'm just uh I'm I'm pretty mellow. And so uh I always think, oh, okay, I have this poor wrapping. I wonder how I can help other people with this. And that's my that's my go-to. How can I help other people with this?

SPEAKER_01 43:32

Does it give you what does it feel like for you when you when someone comes to your comes to you for help and you're able to help them slowly kind of rebuild their new identity?

SPEAKER_02 43:46

It feels like there's purpose to my life. I feel most authentically me when I am the guide, the mentor of someone navigating essentially what their story is, because most. People who are going through this, and I've found this to be true through the decades, they're not mentally ill. It's like sometimes they get their own labels of depression, anxiety. And I believe in depression anxiety, and people do have depression anxiety. I'm not saying that at all. But what I am saying is that most people are worried, they're concerned, they're lost, they're demoralized, which are much more the subclinical symptoms. And it's like I've seen very, very depressed and very, very anxious people, and I've been very, very depressed and very, very anxious before. So it's like I'm I'm not minimizing that one bit, but it is me as the storyteller and the editor and someone who can help someone edit their story. It's like you're not mentally ill, you're lost, you don't know what to write next. You're it's it's the unfolding of life and letting there be more so that you can exercise that agency and that potential. And that's where I just feel as though this that the world around me makes sense, and that's where I feel most at home is helping someone with their story.

SPEAKER_01 45:18

Because that's that's so important. Like we keep going back to it, but once you're diagnosed, you know, you kind of have to rewrite your story and find out what your new potential is.

SPEAKER_02 45:28

Absolutely, and all of life is a story. Um everything you have a story, you have countless stories within you, and I have countless stories within me. Uh, whether it's our country, whether, you know, in terms of declaration of independence or like religions, and they have their texts, it's like they're all stories, they're all stories. It's like, and it's like you're a story. How is your story? And how did your story change? And and what do we need to do with the story that you're holding on? How do we adapt it? How do we fix it? How do we let go of parts of it? How do we, you know, maximize other parts of it? And it's really the editing of a story, but not to edit down, but to expand it, but in different ways. And one of the things about the human brain is that it likes what was what's always been familiar. The brain likes and that and that's why someone like I exist. If the brain people could adapt easily to hardship, I I wouldn't exist, I would have no clients whatsoever. But the brain has difficulty because they want to hold on to what's familiar. And so uh that's what I help people with.

SPEAKER_01 46:44

What is it now? You're you're you're a chronic illness coach, you're an author, you're a podcast host. Is there any other avenue that you want to explore?

SPEAKER_02 46:57

Well, I want to explore actually doing what I'm doing right now, which is just to be uh in a place where I'm having conversations on my podcast. That would be something I've always wanted to do. And if it ever really kind of came, this is gonna sound silly. I mentioned this on threads one time, and um I I got many thumbs up for it, um, which is the idea, this would be like big picture idea of being the Anthony Bourdain of the chronic illness world, which is essentially Anthony Bourdain told stories of humanity, of what it was like to be a human in different cultures through the lens of food. And I would like to do the same, but through the lens of chronic illness.

SPEAKER_01 47:52

Well, I think there was very much a uh a need for that, you know.

SPEAKER_02 47:58

I I think there absolutely is a need. I may just have a talent deficiency, that may be my biggest problem.

SPEAKER_00 48:04

But so I don't think you have a talent deficiency.

SPEAKER_02 48:08

I don't think there's a talent deficiency there, but I uh but I have a curiosity for it, but um the first step to that is opening up the idea of of of just uh not doing just solo episodes because to for me that was a great place to start, but I'm at the point with 50 episodes that now I find myself it's like, yeah, I'm just avoiding interviewing people at this point. And uh and and now uh I'm recognizing that it's avoidance in the next step in in terms of my possible um potential would be to open myself up to interviewing other people.

SPEAKER_01 48:53

What kind of if you should get to that point, what kind of guest would you be looking for?

SPEAKER_02 48:58

Anyone that has a story in and around chronic illness and pain, um, where it would give an opportunity to anyone that's listening to possibly hear themselves within those stories. And whether it's a patient advocate, a patient, a physician, uh from whatever modality it may be, someone that's working with or uh someone who may be a caretaker, whatever it may be, but uh stories in around uh pain and illness.

SPEAKER_01 49:31

Well, I I could definitely see you as being the um the Anthony Bourdain of that of that. The two kinds like well, I mean, look what you look what you've done though. I mean, you you you know went through this this illness and you per you persevered to get a proper diagnosis, which is not easy, and if no one's ever gone down that road, it is not easy at all.

SPEAKER_02 49:56

Not easy, nope.

SPEAKER_01 49:57

No, and um take the financial piece out of it, the emotional piece of it. Oh, I spent so much money on that. Yeah, and I think sometimes people don't realize that you know you lose a lot more than money, you know, you kind of slowly like you like you touched on you lose bits of yourself along the way.

SPEAKER_02 50:17

And it it yes, and we and we and we grieve our future dreams. No one knows what our future dreams consist of, but we know what our future dreams consist of, and um, and it's a unique thing of grief when we are grieving the future.

SPEAKER_01 50:36

No, it is. And I hope that now that you've started all these endeavors with the podcast and um the books. Do you have any new books coming out? I know you mentioned that you just finished one. Do you have another one?

SPEAKER_02 50:49

Uh yeah, the uh The Absurd Body uh is the latest one, and I try to make it um very just reader-friendly uh in terms of talking about existentialism. And what I like about existentialism, uh which is a form of uh philosophy, is that um one, a lot of the philosophers dealt with different illnesses themselves, and they don't have nice, clean, well, here's the answer, you know, this is what you kind of need to do, but it's much more of the opening of the questions and it's the opening of the consideration, freedom, uh community, isolation, mortality, meaning, things of that nature. And it's this exploration of uh being able to to kind of go there with your own story and to explore it within that framework.

SPEAKER_01 51:45

Well, I like that because it takes it's learning about it's viewing chronic illness in a different way.

SPEAKER_02 51:51

It's not just the the medical way, it's your not the medical way, it's not the fixed way. And I'm very familiar with some of the um individuals like Sarno and all of his disciples, and um and wonderful if that helps you, that's fantastic. Um, but I think it overly simplifies, and his was very much a mind, and basically the all pain is this um overactive signaling with kind of within the brain, and um, and we just need to view these things as safe sensations, or we have to process our anger associated with these emotions. And you know what? I think it's wonderful to process the anger or to view these things as safe sensations. I don't disagree with that, I just don't think that that's the root cause of all the the illness and the pain. And so I think that they're um useful techniques, but I'm not so black and white with the conclusions that just pain is all from your brain. Um no, I think it's a slightly more nuanced than just it is nuanced, and I always like to say that everything is psychosomatic until we understand the pathways. It's like, oh, now we have this, you know, now we can see this, you know, in the in the blood work, and now we have a way to rule out things. And and it's just like again, people hate the idea of just saying, I don't know. And it's like, and that's what it is. And so we when they're in that situation, it's like, oh, I don't want to say I don't know because I would just look stupid at that point. It's like it must be psychological. Let's go down that route. And sometimes it can be psychological, um, you know, but it is uh it is not psychological or the psychosomatic is not as prevalent, I believe, as one might think. I think that there's a lot more nuance to illness and to pain, and I don't think it's just the root cause being generated. Even when you go back and you look at uh childhood adverse uh events, the ACES study, they showed a 30% correlation. They didn't show a causation, they showed a correlation. And so when someone's in the office, how can you tell if you know it's the past adverse childhood experiences? You can't tell, you don't know. And so when you take some of that research and you try to put it into the uh exam room, it doesn't really hold up very well because there's no real way of being able to differentiate and find out what really is the truth.

SPEAKER_01 54:26

Yeah, do you have any any little any little suggestions or anything that you'd like to say to anybody who's out there listening to this and is struggling with chronic illness?

SPEAKER_02 54:40

Well, I would say stay curious about the future. Stay curious about your own story, pay attention to the parts of the story that you have control over. There may be many, many parts that have been lost, but yet you want to pay attention, you want to notice what still remains, what remains, and that when in doubt, you know, there's two things. You either ask for help or you try to give help. We're all going that Ram Das, you know, he was a Buddhist philosopher. He he said that we're all just walking each other home. We're all just walking each other home. So ask for help and give help and be a part of the greater community, and that we all try to support one another in whatever way we possibly can.

SPEAKER_01 55:35

That's important because if you are struggling or you get a new diagnosis, you know, there's help out there, and there's someone who could be able to do it. There is there is there's someone who could benefit from your story as we're listening to you share your story today. You know?

SPEAKER_02 55:50

Absolutely. So our story in your story as well.

SPEAKER_01 55:55

Well, like you said, like what you said, um I had a former um a previous guest who actually named her her podcast after something from Ramdas. It was a sit around the fire.

unknown 56:07

Okay.

SPEAKER_01 56:08

And um, so it's interesting that you you brought that up um about that. And um, I like that we keep kind of coming back to that.

SPEAKER_02 56:18

And I am always a fan of solidarity and community um as much as possible. And so um, and that I think that's um it's not the answer. It just makes everything easier.

SPEAKER_01 56:33

Yeah. I mean, when when it when you're fighting battles alone versus when you're fighting them with someone, I think that just helps you fight a little bit harder.

SPEAKER_02 56:42

You know? Yeah, absolutely. Think of it as just as simple as moving a couch. You know, you can move a couch by yourself or with somebody else. It's a heck of a lot easier moving it with other people.

SPEAKER_01 56:52

It is, and you'll probably laugh a little bit along the way, too.

SPEAKER_02 56:57

Yes, humor, humor is wonderful, dark humor, whatever kind of humor, whatever is gonna make you laugh. It's uh and and usually it's one of those things we tend to laugh much more when we have people around us. We do, and that's part of the absurd because it's a lot of it is absurd.

SPEAKER_01 57:18

And when it comes to the chronic world of chronic illness, you have to have a little bit of dark humor. Oh, it's essential. You have to, it's like a requirement.

SPEAKER_02 57:27

Um, thank you, Dr.

SPEAKER_01 57:32

Jeffrey Bone, for joining us today. Um, I really enjoyed our conversation.

SPEAKER_02 57:37

Thank you very much. Thank you. Uh, I appreciate you uh having me on today and uh all your wonderful questions. I appreciate it very much.

SPEAKER_01 57:46

I appreciate you taking the time to share your story, uh, share your journey, um, not only just personally but professionally. Um, and if anyone wants to learn more about Dr. Bone or his coaching, his published works, and his podcasts to the bone conversations on pain, illness, and meaning, you can visit his website, drbone.live. And thank you again for being here. And thank you to all listeners for tuning in. And as always, you can find me in the Collar Cat podcast on all major platforms. The easiest way to connect to the show and support us is the link tree, which you can find in the show notes. There's all our links in one spot. Until we speak again, please remember you don't have to carry what you came from and keep telling your story because you never know you will help see everybody next time.