TPF #29: Dr. Jeffrey Bone - The uninvited guest: Understanding chronic pain

Dr. Jeff Bone holds a bachelor’s degree in psychology from Kenyon College, as well as a doctoral and master's degrees in clinical psychology from the California School of Professional Psychology in San Diego. He has authored two collections of poetry, multiple coloring books, and two chronic illness journals. He's the host of the podcast "To The Bone: Conversations on Pain, Illness, and Meaning."

Dr. Bone has over two decades of experience specializing in aspects of the human chronic pain and illness, focusing on helping individuals manage the challenges that come with long-term debilitating health issues and helping to rebuild their sense of self and relationships after medication-driven behaviors have resulted in adverse events in their lives 

In this insightful interview, Dr. Jeffrey Bone shares his personal journey through chronic pain, the emotional and psychological impacts, and how creativity and community can aid in managing suffering. Discover practical advice on navigating chronic illness, the importance of grief, and fostering solidarity.

Learn more about Dr. Bone's work at https://www.drbone.live/

The Pain Factor is a Project Fourtress podcast.

Project Fourtress is a secular, humanist project, dedicated to find answers to the physical, mental and emotional pain people experience, as well as offer help to deal with these issues. To learn more about Project Fourtress, please visit fourtress.org.

Transcript

SPEAKER_01 0:12

Welcome to the fight. Welcome to the pain factor. On this episode of The Pain Factor.

SPEAKER_00 0:32

Initially, acute pain for me is information. It's it's information that's you know usually useful, pertaining mostly to danger. If we're talking about you know physical pain, but when we get into chronic pain, we get the same information, but it's this constant companion that doesn't have a tremendous use. It becomes the uninvited guest, and it is our companion through life, whether we like it or not. One of the things that it's almost like a code word within the chronic illness community. I'll mention it, it's like that feeling of coming out of a doctor's office after the appointment didn't go well. We treat a new doctor like it's like Christmas. We're excited for it, and we think this is going to be different, that this person is gonna get us out of this dark forest of chronic illness, and then the demoralization, and the and then the walk back to the car and feeling like the compass is spinning, you can't find your true north, you don't know what to do next, and it's extremely lonely, it's isolating because one of the truths is that you can't share pain. Pain is unshareable. We have to separate ourselves from what society, what our culture ultimately wants from us because it wants us to work, it wants us to be productive, it wants to extract units of energy out of us, and it wants to be able to take taxes, and you're only as good as the money that you make. These people make more, these are better people, and all the rest. And we have to see that that's kind of inherently flawed, that our society and our culture should not be a mirror for our own work. Grief is not something that we'll just pass through and then we'll just be done with it. Grief, when it comes to chronic illness, is a boomerang. It will show up time and time again. That reminder of the infusion that you have to go get that blood work, that you have to take the medication, that there's a flare, that there's a bad day, whatever it is. That we never get rid of grief. We can set it down, but it's gonna come back up. And and we can try to have the best relationship and have the best understanding and be self-compassionate to ourselves, but realistically, I don't think grief ever really goes away.

SPEAKER_02 3:18

There are moments in life when something shifts internally and almost without warning, your behavior shifts with it. You may look back on a period of time and feel a kind of disconnection from yourself. Things were said that you wouldn't normally say, choices were made that don't align with who you understand yourself to be, and sometimes there is harm involved, sometimes regret, and often a lingering question that doesn't resolve easily. How was that me? Our guest today holds a bachelor's degree in psychology from Kenyan College, as well as a doctoral and master's degree in clinical psychology from the California School of Professional Psychology in San Diego. He's the author of two collections of poetry, multiple coloring books, and two chronic illness journals. He's also a podcaster hosting To the Bone Conversations on Pain, Illness and Meaning. He has been working over two decades with people in need, people suffering from chronic pain, specializes in the aspect of the human experience, navigating that pain, and focusing on helping them manage the challenges that come with long-term debilitating health issues and helping them reveal their sense of self and their relationships after medication-driven behaviors have resulted in adverse events in their lives. Dr. Jeffrey Bone, welcome to the Pain Factor. Glad to have you here. Well, thank you very much for having me.

SPEAKER_00 5:06

It's very kind of you to host me today.

SPEAKER_02 5:09

Please tell us a little bit about yourself before we dig into our conversation.

SPEAKER_00 5:14

I've been a mental health specialist for the past two and a half decades, but it was really a decade ago when I became very ill from black mold, stochobacterius in the HVAC of my office. And that set off a whole course of medical drama within my own life, which resulted in the development of chronic pain, nerve pain in my head, nerve pain in my foot. And I've been contending with that throughout the past decade, which has also inspired a lot of creative work. Initially, acute pain for me is information. It's information that's you know usually useful, pertaining mostly to danger. If we're talking about, you know, physical pain. But when we get into chronic pain, we get the same information, but it's this constant companion that doesn't have a tremendous use. It becomes the uninvited guest, and it is our companion through life, whether we like it or not. And it's almost like a walking rorshock test, a projective test, where on some days it is just, you know, my fellow companion on this journey through life. And sometimes it's my adversary where it's my pinata when I want to yell and scream at it, and I wanted to unleash the fury within me for what I may perceive as unjust or unfair, that this is the card that was, you know, pulled out of the shoot, and this is the card that I have to play. So it's the uninvited guest for me. That can be many, many things.

SPEAKER_02 6:59

Yes, of course. And we also have mentioned in this podcast in other episodes that pain is a tool. But what happens when you are like I get it, something is wrong, stop telling me. Which is basically what chronic pain is. It's the constant information every single day, every single hour, every single second, that something is wrong. But take us to the very beginning. You were someone helping people as a psychologist, you were helping them navigate their own issues, their own pain. And then out of the blue, or not, you will let us know you became the a patient too, a patient yourself that was in need of the same thing you were providing. So, how it started for you?

SPEAKER_00 7:54

Well, so a decade and a half. I was just working with people right out of graduate school with chronic pain. That is exactly where I started the whole journey and started with the postdoc, you know, hours that I was obtaining. But then what happened is it started with a headache. I had sinusitis. And so I went to an ear, nose, and throat doctor, and uh it seems pretty straightforward. And they gave me something that I was familiar with, which was pregnisone. And so, but once I took the pregnisone, my body flipped out. It was basically, it was almost like my immune system and the mycotoxins from the mold. It's not all mold is neurotoxic, but there's two species of neurotoxic mold in that HVAC. And it was almost like it was at a uh it was as they were at a truce to a certain degree. They're holding each other back. But once I took the prednisome, my body developed a constant tremor, my bladder hurt, my feet were vibrating, pain in my feet, pain in my head. It was like a neurological concussion, just neuroinflammation. I couldn't remember my kids' names. I couldn't watch TV, I couldn't look at the phone because I couldn't stand the motion. It was Christmas time, and I couldn't stand the all the Christmas lights, the Christmas tree.

SPEAKER_02 9:23

It was too bright for my very doctors.

SPEAKER_00 9:36

I went to multiple ENTs, multiple podiatrists, neurologists, internists, and they're just saying, well, you know, just give it some time, give it some time. And and some said, you know what, I think it's just stress, I think it's just anxiety, because my symptoms were just so all over the place. It was so systemic. It just red ears, adrenaline flushes, these tremors, all these different things that the decision trees that they were working with, I didn't fit into any of the decision trees. And the blood work that they were running showed that the kidney, the liver, blah, blah, blah, you know, white blood cell count, all of that was relatively normal. So with what they were looking at, well, I look like a just a trembling individual scared of his own body. But little do they know there was a lot more lurking underneath, but they just hadn't discovered it yet. And I ended up going to a functional medicine doctor, urinalysis, blood work, and he's the one that said, I think you have a mold issue. That's what it looks like on the blood.

SPEAKER_02 10:41

And how much time has passed since that first?

SPEAKER_00 10:46

That was that was a maybe approximately a little less than a year, approximately a year or so. A year bounce.

SPEAKER_02 10:54

Without knowing, wow. But that could only be besides painful, frustrating and and emotionally hurting your UBK.

SPEAKER_00 11:05

Yeah, incredible fatigue, not being able to sleep. And I would take these medications, heavy-duty sleep medications, and not sleep on those medications at all. Uh, and because my body was and would do a sleep study, and all that they would do would just say, well, you don't have sleep apnea. Good luck with that. Later, you know, did I end up doing an oral cortisol test where you spit in the saliva, you spit your saliva into these tubes throughout the day, and that showed that my uh cortisol was off the charts. And once I started treating the cortisol with different supplements, I was able to kind of rest my body a little bit and start returning back towards getting sleep. But again, that still wasn't the root cause. The root cause was basically my immune system was shot because I do the a functional medicine doctor, he's the one that tells me I should get the office tested. I do get the office tested by an uh environmentalist. So the environmentalist shows that I have this, you know, neurotoxic mold in the HVAC. And so they did a kind of a thorough examination of that. And then after a year of the functional medicine approach, I get better. It wasn't all for nothing. I I but it cost a lot of money, but I still didn't have any good days. No good days whatsoever. I was still sick. And I wanted to go to the Mayo clinic. That's what I wanted to do. But I said, you know, there's some hospitals that are near me. I'm in Orange County, California. There's some hospitals in the area. Let me look through their directory. Let me see if there's any departments that, because I've done all the neurologists and ENTs and all the rest. And I see the department toxicology. I have no idea what toxicology does, but I'm feeling toxic. And literally, just because I felt toxic, I decided to kind of go to the toxicologist. And he didn't believe in the whole mold hypothesis, the whole idea of that it didn't matter to me. My identity wasn't based on that. But he did take me seriously and he did a lot of different blood work that other people hadn't done before, and he tested my immunogobulin levels. The immunogulin levels were clinically low, which is very problematic, and sent me then to the immunologist. And the immunologist, they say the low levels, they give me a vaccine. He's like, here's the vaccine, come back in a month, and we'll see how your body responds to the vaccine. You have to do the additional blood work. And I do the blood work after a month, and my body doesn't make antibodies to the vaccine. And so that's how I ended up with the condition common variable immune deficiency, because you have the low IgG, the low immunogobulins, and you don't make a response to the vaccine. And so now on a weekly basis, I have to infuse myself with immunogobulins. And so when people donate plasma, you know, people donate blood, but they also donate plasma. From the plasma, that's where they make the immunogoblins that I infuse on a weekly basis.

SPEAKER_02 14:27

How much time has passed? Had passed? Year and a half?

SPEAKER_00 14:33

It was, you know, you know, we're looking at like two and a half, three years kind of in that realm of just being sick, sick every single day. And then I would try different medications, and some medications made things much darker for me. They would make me nauseous. Uh, you know, I'd have all these different side effects because my body's in haywire mode because you have the devastation of the initial hit from the mold. And so you get into the world of epigenetics where environmental stressors cause gene expression. So I had the gene for common variable immune deficiency, but it just hadn't been expressed yet. I was in my early 40s, I didn't even have a primary doctor. I never got sick outside the usual cold, maybe a flu every once in a while, but I wasn't even going to, you know, like normal checkups or anything like that. I was fine. I was busy. I was living life. So I was clearly not a very ill individual. And I hadn't, I wasn't taking any prescription medications, wasn't really taking supplements. I was just average, very average, maybe a little overweight, but I was average. And then it became a life of medications, expensive medications, some of out of pocket. And then where I am now, when you infuse, I do the infusion. I have needles, I have two needles that I put into the sides of my stomach, into the fat, into like that, you know, uh the little fat on the sides of my abdomen. And then over the course of an hour, I infuse that medication. And so, and I have to do that for the rest of my life.

SPEAKER_02 16:21

How much does that help with the pain? Significantly, you can live a normal life, quote unquote normal.

SPEAKER_00 16:31

I can live a normal life, yes. The pain has been brought down to a more mild situation, but I'm prone to sinus infections, and since sometimes the sinus infections get into the ears, and then I get vertigo. But in when the sinus infection flares, the pain I always have right on the left side of my head, and it it will it will flare the pain. Now, my foot pain is just it's on the right foot, uh, the toes, it's kind of inter mentatarsal brasitis. And the doctor, the podiatrist said basically, well, we could take out the bursa, um, and that might help, but it also may make it worse too. And I have seen many clients who have unfortunately developed chronic inflammatory uh not chronic inflammatory response system, but CRPS, complex regional pain syndrome from you know, foot surgeries. So I have this, you know, mild burning sensation as I sit here. I sit here with the pain, and it's a constant companion, but it never really changes. I do do, you know, some different modalities of red light, ultrasound on it. That can be a little palliative. It helps a little bit, but it's basically always there and basically at the same volume all the time. My head pain will ebb and flow, but it's always there. Uh, sometimes just there a little worse. And I would always prefer foot pain over head pain because Jeff, the person I am, I live up here. And so, you know, any pain. So I always feel tremendously bad for the people with trigenimal nerve, and people with dental pain, migraines. The pain in the head is the worst place for me.

SPEAKER_02 18:28

You talk about something called the existential side of chronic illness. And I want to get there.

SPEAKER_00 18:35

Yes.

SPEAKER_02 18:35

But before, before that, during all this time, those two and a half, three years that you were searching, that you were not able to find anyone who could tell you what you had or provide you with something that would work. How did you manage the day today? Because I can't imagine that at that point for you, every day would be just a copy and paste. And correct me if I'm wrong, but if that was the case, if you know that today is going to be the same that it was yesterday and the same that it's going to be tomorrow, how did you emotionally handle that? Or or did you? What helped you?

SPEAKER_00 19:30

I didn't do it gracefully. I can tell you before, you know, before my education, before my years of experience, I'm a human being. So I can tell you that there was a lot of tears. There was a lot of darkness, there was a lot of sadness, there was a lot of grief, there was a lot of just messy, messy emotions. And ultimately, you know, it the purpose, my why, it's almost like you go back to Irving, uh uh Victor Franco, Man's Search for Meaning. It's like you you have to have a purpose for our suffering. You need to wrap a purpose around it. And my purpose, you know, were my two children. And that was just, okay, one step, another step. I'll keep on looking. I will eventually find. I hope I didn't know I would find a solution. I didn't know things could get better, but they were basically my why. And so here I am. I'm dark, I'm crying, I'm feeling lost and confused, and all of the rest. In some ways, you know, I look back and it's never been, oddly enough, it's a little ironic. I've never been the best at asking for help. I've never been the best. And so I always tell people to ask for help because I myself, you know, I've always struggled with it. When I went to college, I I didn't take advantage of the office hours. I didn't go to the like the writing classes that they had, you know, that were available. There was always help. And people are around to help. And and so I was stubborn as I'm always stubborn. And I needed to find a way to be able to have a cathartic experience. And the cathartic experience for me was ultimately starting to write poetry. I had never written poetry before. And my ADHD brain and talking to people in fragments for decades, it didn't leave me as someone that would write prose. It wouldn't be somebody that would just write out these stories or or journal for pages. It just wasn't me. But I found just writing poetry with no schooling or education behind it, just these short formatted, you know, things, it gave me a container of control. It gave me some agency. I couldn't control my body. Sometimes I couldn't control my thoughts or my emotions and everything that was going on with me and all the ways that I was suffering. But I found agency and control through just writing poetry. And that was the anchor as I continued, and I think the word for me was curious. I kind of maintained a curiosity of what could this be? I tried every single supplement on Amazon. I I've gone to multiple doctors, multiple IVs. I've done the hyperbaric, the red light, the pulse electric magnetic frequency, you name it, ozone therapy in the blood. I stayed curious. You know, I kept on trying and trying and trying. And I tried more the functional medicine approach, multiple doctors, and I tried the kind of more Western approach as well. And found that both of them had some virtues and values. But ultimately the big piece was the Western side of my immune disorder, which is the common variable immune deficiency.

SPEAKER_02 23:10

So, in a sense, we could say that you tried to stay in control at the will, besides that that was your anchor, your handle, your your grip.

SPEAKER_00 23:20

Yes.

SPEAKER_02 23:21

Now going to the existential side of chronic illness, what does chronic illness change? How does it change your identity? I am assuming that being a psychologist that would be a big role in your life, like being a father or a husband. But chronic illness erases or alters our identity in a way, depending on the case. And also, I I guess it just shatters your sense of freedom because you are depending on something.

SPEAKER_00 23:58

So absolutely. And I use the word shatter all the time. That we just shatter the old version of our sense of self. And then the process of what we're trying to do is trying to make a mosaic out of those shattered pieces. And that's where we're seeking to expand the new story. You're always going to fail if you just try to go back to the previous version. You're going to burn yourself out. And it will be a fruitless pursuit. But if we accept and we grieve, and then we allow ourselves to explore one of my favorite words and on that existential tradition, freedom. Freedom is so important.

SPEAKER_02 24:55

Something you said is really important. Grieving. Grieving. Giving time. Yes. We need time to grieve and not be ashamed. But please, please continue. I just wanted to mention that because grief is necessary and it's unavoidable.

SPEAKER_00 25:12

Yes, it is. As we go from the caterpillar to the butterfly, like the grief is that chrysalis. It's the shedding the skin. Look at it in nature. You know, we see it in nature as well. And the changes of seasons, the losing of the leaves. There's a lot of it around us. Nature is very, very intelligent, and we can pay attention to it to inform our own stories. But I would grieve, I would cry, I would write, I would express. That's you know what I sought to do. And you have to, because you have, I think Carl Jung, the famous psychologist, he once said most of healing is letting go. It's letting go. It's letting go of, and what are you letting go of? You're letting go of a story. I let go, I don't need to continue to repeat that story. Most of us have 70,000 thoughts a day on average, and about 80% of it's recycled from yesterday. And so we kind of repeat these cycles, these stories over and over, but we have to kind of grab that story, we have to grieve that story, and then we have to set down that story so something new can be written. And that can be incredibly hard because the human brain loves the familiar. And even if the familiar is not meeting your needs, even if the familiar doesn't leave you striving or feeling optimal, we stick with the familiar in a lot of circumstances. So it requires courage. We do, absolutely. We're problem-solving pattern recognition machines. And so now we have a new pattern. But that's where, you know, I'm not the expert in it, you know, but people get into the world of psychedelics. And personally, for me, I'm in the world of uh chronic illness journals, which are just a series of questions. You know, it's like break the pattern. And my work, you know, as I work with different people, I'm most definitely the pattern breaker. I am someone who is trying to edit kind of stories so that they become, you know, more functional to them being able to meet their needs based on their own particular values. The values become the North Star. It's not my values, it's not my story, but there are these little pieces where things get bottlenecked, or places where people are just recycling the same over and over and over again, and they're relatively kind of stuck. And we that's what we're trying to avoid because oftentimes we get into the state of rumination. I always like to call it being told to pee in the corner of a round room. It's like you were going around and around looking for relief, you're not gonna find it. And so, you know, we need a different room, basically.

SPEAKER_02 28:24

What about loneliness? I am not referring to physical loneliness, but it must feel uh extremely lonely to being misdiagnosed because you know that something is wrong.

SPEAKER_00 28:41

Yes.

SPEAKER_02 28:41

They tell you come back in a month or or just wait, or we will see. But for those two weeks or that month, or those six months, you are the one that is in pain. So that is lonely. That that must feel terribly lonely. That loneliness from feeling misunderstood or misdiagnosed, and that identity loss. How true is that? Yes. Because I hear people saying that you cannot be lonely if even if you're in pain when there's people around you and you have a support system. And I think that that's not if you have a support system, great, but not feeling lonely is not always the case, even when you're surrounded by people that love you and support you. Does that make sense?

SPEAKER_00 29:33

That's like saying that you can't be hungry because you have rice, but you only have rice and that's all that you have. And there's these other kind of components. One of the things that it's almost like a code word within the chronic illness community. I'll mention it, and it's just like that thing that only the chronically ill know, which is for me one of the things that I'll mention. It's like that feeling of coming out of a doctor's office after the appointment didn't go well. We treat a new doctor like it's like Christmas. We're excited for it, and we think this is going to be different, that this person is gonna get us out of this dark forest of chronic illness. And then the demoralization, and the and then the walk back to the car and feeling like the compass is spinning, you can't find your true north, you don't know what to do next. And it's extremely lonely, it's isolating because one of the truths is that you can't share pain. Pain is unshareable. You know, you can't feel my foot. You have no idea what my foot feels like. And I love the quote by David Foster Wallace, who says, How is it that I can have all of this inside me? But to you, it's just words. Love that quote. Because there's a tempest, there's a storm, there's an emotion, there's a person, there's a soul, there's all this stuff. And it's kind of like, but I can just give you words, you know, maybe you can see my face a little bit and some nonverbals, but to you it's just words. And and part of it is people, if they're not familiar with the land of the chronic. And it is different. Chronic is different when it's there all the time. If you're not familiar with it, you can't necessarily understand it. I remember myself, born and raised in the United States, and it's kind of like I'm just the fish swimming in this water of this culture, and I don't understand really what this culture is until I go to Europe. I go to Europe, I go to a few different countries, and I'm like, I can see what, you know, what America is. I can see their particular values, their particular choices, I can see how they prioritize or deprioritize things because I can see it. I have perspective on it, but most people don't have perspective on chronic illness. And so it's deeply understood. People, you know, think, oh, well, isn't it great that you have so much time, you know, that you can do all these different things. Maybe you're at home, maybe you're sick, and you say, Oh, you can watch movies all day long. And there's a thing that's called the Sunday scaries, you know, when people kind of get a little nervous and anxious, you know, Sunday night. And really ultimately what that is, is unstructured time. It is time that's not structured. You go through your weekend and you have these events and you have these obligations, you have these, they could be errands, whatever it is, it's structured. Well, with chronic illness, there can be a lot of unstructured time. And what other people are seeing ultimately as this freedom is really this isolation prison of unstructured time because people aren't able to ultimately live the way they want to live. They don't get to express sometimes the values, sometimes the desires, the goals, the intentions that they have. And when other people don't understand that, it's very lonely because you don't feel as though that you have a community that can comprehend what your experience is.

SPEAKER_02 33:25

I can sympathize, I can try to help, but I will never get to understand.

SPEAKER_00 33:31

Yes.

SPEAKER_02 33:32

But you are misdiagnosed, you are misunderstood, people are trying to help you. Yes. You are looking for help, but you don't get better. You're still in pain that is affecting or shattering your whole life, and then guilt and shame come by and say, Hey, here we are. Are you sure this is not all you? Because I mean, how many doctors have you seen? How many people are trying to help you? And you still are whining and complaining. So, what role do guilt and shame play in chronic illness?

SPEAKER_00 34:15

It can show up a lot, especially when you're online, you see a lot of people saying, like, oh, we can reset your nervous system. You have Sarno, John Sarno, and all of his uh different disciples, which is basically the brain is being overreactive to pain signals. And for Sarno, it's you know, you have to express the anger for other people, you just have to label it as a safe sensation, but it's just the mind to kind of you know interpreting these signals and over-interpreting these signals, and which can feel like a lot of guilt and shame because people like I expressed the anger, I did this, I did this, and it's kind of like it didn't resolve my CRPS. It didn't, but and again, I like expressing the anger, I like labeling things as safe sensations. I don't think that that is curative in nature. And I don't feel as though that's the that's the management of suffering, because there's a big difference between suffering management and pain management. And for my part, when I'm working with clients, I don't have cures. I've never cured one person in two and a half decades, never cured one person, but I have helped people with a better quality of life by diminishing their suffering, by helping them with their story, with their identity, and by giving them agency over a few different parts of their life. And I have contributed in a positive way, but I don't have cures. And it's kind of like, but we can we can kind of turn the dial up and down, and sometimes that plays into the experience of pain. And we can quiet the pain, I can quiet the pain a little bit with my mind, but it bounces right back. You know, it didn't go anywhere, and it doesn't treat the underlying physiology. I think we um, especially people with in the mental health world, they overly simplify things. I deal with thoughts and emotions, so therefore, everything needs to be thoughts and emotions. And it's kind of like, no, that's not the case. And it's a good business model, we can always talk about the past. So it must be trauma. And we have to kind of sit here and talk about mom and whatever happened in third grade, you know, from here on out. And because that gets into like the ACES study, adverse childhood experiences study, which correlates, and again, it's a correlation, not a causation, of about 30% increased likelihood of experiencing chronic pain if you have these adverse childhood experiences. But again, if you're sitting across from somebody and they have this adverse childhood experience, again, we take some of the research, which does not show causation, it only shows correlation. And then again, a lot of times the the professional will, they want order. And so they'll say, they'll label it. Well, I saw this study, and it's kind of like you're experiencing this fibromyalgia because you had this adverse childhood experience. There's no way to know. And there is no test, there is no blood work, there is no brain scan, there is, it's just this assumption. Now, it's fine to talk about trauma. It's fine to process this trauma, but I am not in line with taking adverse childhood experiences and connecting it with the chronic pain, whether you have an autoimmune condition, whether you have lupus or fibromyalgia, CRPS, IC, whatever it is, lower back pain. I am not in agreement with that at all.

SPEAKER_02 38:10

Oversimplification is, to say the least, infuriating. And it is dangerous and it is frustrating.

SPEAKER_00 38:19

It's always it's always psychosomatic. It's always psychosomatic until they understand the pathways. It's always psychosomatic until they understand the pathways.

SPEAKER_02 38:31

I was listening to someone the other day that I follow on YouTube. Um, he has a channel about misinformation and oversimplification, and he tries to tackle that. And he was saying when you are in a in a discussion in with a group of people and you hear someone saying, it's very simple. That's the one that doesn't know a thing. And when there's someone that says, Well, that's that's that's complex, that is complicated, uh open up your your ears because you're about to learn something.

SPEAKER_00 39:04

Um Jeffrey Absolutely, the more I learn, the less I know.

SPEAKER_02 39:10

Jeffrey, what kind of advice, if that is the correct word, would you offer to families loved ones that live with people with chronic illness? How can they help those lonely people with guilt and shame? What would you like them to do? What could they do?

SPEAKER_00 39:36

Well, I I I think a lot of times they they get caught into a place of being stressed or frustrated or whatever it may be because they can't fix it. And the human mind, you know, once a problem arises, the loop opens. And the human mind wants to close loops. It's kind of, you know, we'll see it with uh they they'll play with us in terms on TV shows. Here's a cliffhanger for the next episode, leaves the loop open. So the person is more motivated to come back. So in their mind, they can kind of close the loop. And so that shows up with chronic illness where the loop opens, but there isn't a natural close. There is no close. We have to develop a relationship to this open loop. And so go in to the situation, go into the relationship, not trying to fix, not trying to close the loop, not feeling as though that that is your job to be able to close the loop. There are there's just two things that I would want any caretaker, any loved one to think about. Are they present? Are they physiologically present? Are they just sitting? Are they are they sharing space with that individual? And two, are they listening? You don't have to have solutions. Oftentimes, when we talk, we talk towards solutions, we talk again towards resolution. And sometimes you can just listen. You can just be present with somebody and care what they have to say without feeling as though that you have to solve it. Don't try to solve it, don't try to fix it. Be physically present and listen to what they have to say. And that is tremendously valuable, tremendously valuable. And it means the world to someone who's living with a chronic illness.

SPEAKER_02 41:56

I can't, whatever, anything. I I just can't. I can't go to work, I can't go out, I can't make my bed, I can't cook. I'm so overpowered, overwhelmed by this pain, whether it's physical or emotional, I just can't. And this person said, Well, the best thing you can probably do for that person in that situation is okay, I'm going to stay here with you and I will cannot together with you. So we both can't today. We won't be able today. I will be with you, and that's for me is beautiful.

SPEAKER_00 42:40

I love the idea. It is because it reminds me of Albert Camus, who you know is just famous for saying kind of life is absurd. He's a French existential, you know, uh he wouldn't call himself an existentialist or a philosopher. He was a writer, he hung out with a bunch of existential philosophers like Sartre. And um, but his thing was it's all absurd. And there is no inherent meaning in life. And so from this person who's writing about absurdity, he writes the book The Plague, which is, you know, it's basically, you know, Nazi occupation is what he's talking about. And but his main point is solidarity. It is, we're gonna do with it, it's absurd, it's frustrating, it's scary, we're out of control, but no matter what, we're going to do this together. And it's, I may not have the answers. I can't cure the plague, but I can go through this experience together. And that's solidarity. And I think that is so, so important because that that that is part of the isolation community realm of the existentialism, sadly. Finding a solidarity.

SPEAKER_02 44:00

A hundred percent. How does someone with uncertain health or not knowing how their health is going to be in the future? How does someone build a life? I don't know if it's a good idea. They build a life.

SPEAKER_00 44:16

That makes sense. No, no, it makes perfect sense. You know, they are going to build a life by first, like you said, you have to grieve the old life. You have to shatter it. You have to break it into pieces. And then you have to be curious about what is it that you can control? What is it that you uh what works well? You know, fingers, eyes, ears, mouth, you know, it's like your brain, what what's working? You have to take an inventory of the goods of what it is. Because it comes down to the these three points. It's like, what are you good at? What is it that you're good at that you kind of enjoy doing? This is an enjoyment of what you're doing that you can share with others. What are you good at that that you can share with others? And I think that's so important because you're looking and being curious to your own agency, your own level of control. And then you're kind of pondering, what are my values? What were my values? What are my values now? And in chronic pain, chronic illness can warp the values. I know I used to, I wouldn't say that I was very, very materialistic, but um from my illness, I haven't made any big purchases. I don't buy stuff, I don't care about stuff. You know, that's not interesting to me because I would only want to put my resources towards health or well-being or things focused in in that realm rather than a car or a watch or whatever it is. So there's a change in that value. So you want to pay attention to the changes of values because the values, and that's going to give you the push in the direction. Where do I take my agency and how do I utilize that in the world around me? And one of the things that we also have to do is that we have to separate ourselves from what society, what our culture ultimately wants from us. Because it wants us to work, it wants us to be productive, it wants to extract units of energy out of us, and wants to be able to take taxes, and you're only as good as the money that you make. These people make more, these are better people, and all the rest. And we have to see that that's kind of inherently flawed, that our society and our culture should not be a mirror for our own worth. And so you have to separate yourself, you have to be aware of the illusion or you know, the distortion of what our culture and our society wants to tell us in terms of worth and value, so that we can find it within us on an individual basis.

SPEAKER_02 47:01

And going back to you, what you were saying before about how bad people can help, our society constantly needs to be fixing something. And when you're trying to fix something that is not broken, the result is not going to help anybody. You have turned or transformed your illness, your pain into creativity. And we can also put it the other way around. Your creativity has helped you manage your pain and your illness. You started writing poetry, you have published coloring books, you have a podcast. How did you discover it? How did you see that thread? How were you able to figure out amidst all that pain? Hey, here's something that I can help me, here is something that is I can hang on to get out of this pain, or just to stay emotionally healthy.

SPEAKER_00 48:12

It started off in the most kind of selfish way of just, I hurt so bad, I'm confused, and I need this cathartic outlet. And I just started writing poetry in the note section of my phone. I didn't have a quill and paper and ink, and there was nothing fancy about it. Wasn't even typing it out on a keyboard. I was just putting it into my phone as I was sitting there. And it was always with me. So when something would strike me, I would be able to put something out there that um that I could just allow my mind to be curious about whatever I was thinking and feeling. But then after that moment, you know, every other piece that I've done, any journal, any kind of coloring book, which is it was kind of like lighthearted and fun. Um in the podcast, it all comes out of suffering. It all comes when I'm in a place of suffering and I'm writing new things now. When I'm feeling down, when I'm feeling sad, when I'm feeling overwhelmed, I'm just sitting there going, I'm not the only one. I'm not the only one. I need to make something for somebody else. I will feel better if I sit here with this unstructured time that I have, and I can make something for somebody else. It's a gift that I could put out. I am the crow that is leaving the like the button at the door or the the you know, just the odd object, or I had a cat that would bring us like dead birds and stuff like that, and and just leave it on the back step. It's like the gift, the offering. And so they're all my offerings that I kind of like throw kind of like out, you know, into the world. And and and it's me trying to send a signal, it's giving a gift, hopefully, hopefully, that resonates with somebody, and for them to see that they're not alone. This that this is not new. It's new to you, but it you're not the first one to be experiencing it. And there is a community, there are people to talk to, there are people that understand you. Um, and I know that you may be new to the land of the chronic illness, but you know, there is solidarity here. And I use the word solidarity all the time because it is that important.

SPEAKER_02 50:49

Absolutely. That and that is why I created this podcast, because there's something that I have to do. If you know something, if you can share something that might be helpful. It is a moral obligation to me. Not that you do that because of that, but if you can help, you should help. Uh I also like how you say this is not new, because it is new for you. But when you think it's something new, you also feel ashamed and guilty because this is me. Why is this happening to me? I don't see this happening to other people. But when you say, hey, that's an old story, there's plenty of people going through that. This is not new, you are not guilty. Um and I could not agree more with you on that aspect. You mentioned something already, um, but I want to go a little deeper on that. You said that pain management is not the same like as suffering management. But I wanted to ask you if there is a difference between pain and suffering, and where where does that difference lie?

SPEAKER_00 52:07

For me, it's the emotional reaction and the story. It's basically, you know, where's my nervous system? Um am I am I sad? Am I anxious? Is I'm am I stressed? Because I am going to project whatever I'm experiencing, you know, you know, onto that pain, because the pain is this irritant. It's this, you know, it's the annoying loud child kind of like in the classroom. It could be, you know, everyone else well behaved. Most 98% of my body is, you know, very well behaved, but there may be one or two percent of my body here that is being annoying. And if I am not in a place where I'm relatively calm and relaxed, I kind of get frustrated with it. There are times I'll slam my hand on the on the steering wheel, I'll I will shed a tear, um, I will get frustrated, I'll write another poem. It is just, it arises up out of me, and that's where I am suffering more. The pain is the pain, but my relationship to the pain is going to dictate how much I'm suffering. And the more that I am angry, sad, depressed, feeling hopeless, helpless, demoralized, whatever it may be, I'm I'm putting dry kindling onto the fire and I am suffering more. If I, you know, it's, you know, um, there are times where I may say I'm not suffering at all, but in reality, as long as the pain is there, there's going to be an element of suffering. But it doesn't necessarily have to reach, you know, like the main story of the moment. I'm carrying the pain throughout all of life. I'm doing kind of different things, and it's in the background. But when I'm really suffering is when it comes into the foreground and it becomes the main story of my conscious mind in that moment. And then that's really where the suffering really is being taken is taking place. And that's where I then have to be much more intentional with calming myself down, expressing myself, or doing something creative, or just distracting myself.

SPEAKER_02 54:29

You know how uh Superman has kryptonite, or we sometimes call it Achilles heel. In here we call it the pain factor. So, what is your pain factor? You were already kind of going there, but what is your your pain factor today or in these days?

SPEAKER_00 54:52

The pain factor in terms of of my Achilles heel is sometimes it's my desire to reach more people than I really can realistically. And I start feeling kind of, you know, uh I feel quiet. I feel I feel overly quiet. I feel useless, I feel helpless, I feel like I'm not necessarily kind of doing enough. And I it like you said, we're always trying to solve a problem. And my Achilles heel is that I'm always kind of chasing to solve that problem. I'm trying to help as many people that I can help. Uh, it's like catcher in the rye. And you know, you have the character trying to kind of prevent people from falling off the cliff. And um, and not to say, again, I'm not saying that I have cures. I don't have cures, I don't have the answers. Uh, I'm not here to kind of quote unquote save anybody. If anything, I'm helping people learn how they can save themselves. But uh my Achilles heel is sometimes I I can't rest and can't sometimes take care of myself as much as I should because I focus, you know, sometimes a little too much on others. That becomes my safe place, is helping others because that's ultimately feeding an identity that I like very much. I like being seen as somebody that's helpful. But my Achilles heel is that I don't derive a tremendous amount of benefit of you know doing the same for myself. I will I will show up for myself on occasion, but my biggest Achilles heel is I don't help myself nearly as much as I try to help others.

SPEAKER_02 56:43

It's a working process for many of us. And it's it takes years. For some of us it takes therapy, for others it just takes education or comprehension or love from family, but it's a process that I believe never ends. After all we have discussed today, is something that we have left aside that you would like to mention, some question that maybe I did not ask, or a final message that you would like to leave people with.

SPEAKER_00 57:27

It is to add on to the element of grief. Grief is not something that we'll just pass through and then we'll just be done with it. Grief, when it comes to chronic illness, is a boomerang. It will show up time and time again. That reminder of the infusion that you have to go get that blood work, that you have to take the medication, that there's a flare, that there's a bad day, whatever it is. That we never get rid of grief. We can set it down, but it's gonna come back up. And and we can try to have the best relationship and have the best understanding and be self-compassionate to ourselves. But realistically, I don't think grief ever really goes away.

SPEAKER_02 58:13

Maybe it's something that we over overcome or we deal with and get used to, but at the end of the day, even after weeks or months or years, we don't like to look back or acknowledge that painful thing to be there. But I have learned that as long as we go through that grief and give grief the time it needs to do whatever it needs to do, we'll be fine. Or we we will survive.

SPEAKER_00 58:56

Absolutely, and that's the faith and understanding. It's faith and understanding of like it is is to normalize and go, it's okay to feel grief again, that this is a familiar thing, and that you honor it and you allow yourself to feel, you allow yourself to think or write about it, whatever it is, and that you realize it's okay for you to feel it, and then you can set it back down again. That is just a part that just arises up, and it's not that you're failing, it's not that you know that everything's you know falling to pieces. It's a normal thing for grief to revisit us throughout the journey of life when we deal with pain and we can deal with illness.

SPEAKER_02 59:39

And it's unavoidable and it's not our fault, and it will happen. No, it's not yes. Jeffrey, how can we follow you, learn more about your work, your books? How can people get in touch with you? Provide us with your website, anything that you like to share?

SPEAKER_00 1:00:03

So the website is the is the best place to go, which is uh drbone.live. It's dr-n-e. So just like bone in the body, drbone.live. And yes, and I work as a chronic health coach mentor, and so I work with people throughout the United States in that capacity. Technically around the world, but you know, for now, it's just around the United States.

SPEAKER_02 1:00:32

You're helping people, and it doesn't matter where geographically that is happening. Thank you so much, Jeff, for your time. Thank you for your candor for talking about pain and sharing your pain with us and providing people with uh information that will help them hopefully do the same thing. Just thrive, get better, lead a better life, and who can tell maybe tomorrow have their own podcast or write their own book or go to some meetings where or support groups where they can share how they recover, how they overcame pain. Thank you so much for your time.

SPEAKER_00 1:01:24

Thank you very much for creating the space for me. I appreciate it.

SPEAKER_02 1:01:28

And for everybody listening and watching, we will see you next time when we continue to explore the pain factor. Ciao ciao.

SPEAKER_01 1:01:48

The Pain Factory is a Project Fortress podcast.

SPEAKER_02 1:01:51

Project Fortress is a secular humanist project dedicated to find answers to the physical, mental, and emotional pain people experience as well as offer help to deal with these issues. To learn more about Project Fortress, please visit Fortress.org. That is F-O-U-R-T-R-E-S-S.org. I, Gustavo Varela, am not a licensed medical professional, nor am I a nutritionist or hold a degree in exercise or sports medicine. All of the advice given on this podcast is what I have learned from my own experiences and mistakes, navigating through depression, anxiety, and chronic physical pain. Project Fortress is not responsible for any actions that may occur as a result of you listening to and implementing the advice we provide. Use all of the information that we give at your own risk.