Living With Chronic Illness: The Emotional and Psychological Journey

One phone call can divide your life into before and after.

“We see a mass on your X-ray.”
“Your labs are abnormal.”

Sooner or later, most of us — or someone we love — will face a diagnosis that changes everything. Chronic illness can affect far more than physical health. It can reshape identity, independence, relationships, emotional well-being, sexuality, sense of purpose, and hopes for the future.

In this episode of Wellness Connection MD, Dr. Jim McMinn talks with Dr. Diane Tucker, professor emerita of psychology at UAB and a founding member of UAB’s Center for Palliative Care, about the psychological and emotional impact of chronic illness.

They discuss grief, depression, loss of identity, medical trauma, caregiver stress and burnout, intimacy, hope, fear of death, palliative care, and the emotional challenges faced by healthcare providers. They also explore practical ways patients, families, and caregivers can cope with serious illness and maintain meaning, connection, and resilience during difficult times.

Whether you are living with chronic illness, supporting someone you love, or caring for patients professionally, this episode offers practical insight and compassionate guidance for navigating the emotional side of serious and chronic disease.

Transcript

The Shock Of Chronic Illness

SPEAKER_01 0:00

Hello, I'm Dr. Jim McMahon, host of Wellness Connection MD, the evidence-based podcast on all things wellness. Here's the hard truth. We're all just one car accident away or one phone call away from having our lives changed by serious illness. Imagine getting the call. We see a mass on your x-ray, or your labs are abnormal. A few simple words like that can mark the beginning of an entirely new chapter in life. But a chronic illness doesn't just affect the body, it can reach deeply into our emotions, our relationships, our sense of identity, and even our sense of hope and purpose. Today we're exploring the psychological and emotional impact of chronic illness with Dr. Diane Tucker, Professor Emerita of Psychology at UAB and founding member of UAB's Center for Palliative Care. We'll take a look at chronic illness through the eyes of the patient, the family, the caregiver, and the health care provider. And we'll share practical strategies and resources for navigating these difficult times. Because sooner or later, chronic illnesses touch almost every one of us, either personally or through someone we love. There's a lot to unpack here, so let's get started and we'll break it all down for you.

SPEAKER_00 1:00

Welcome to the Wellness Connection MD Podcast with Dr. McMinn and Coach Lindsay, where we bring you the latest up-to-date evidence-based information on a wide variety of health and wellness topics, along with practical take-home solutions. Dr. McMinn is an integrate and functional empty. Lindsay Matthews is a registered nurse at IIM Certified Health Coach. Together, our goal is to help you optimize your health and wellness with mind, body, and spirit. See a list of all of our podcasts at com. Stay up to date on the latest topics. Be sure to subscribe to our podcast by your favorite podcast player so that you'll be notified when future episodes come out. Discussions continue with podcasts for educational purposes only. Diagnose disease. Do not apply any of this information without approval from your personal doctor. And now, on to the show with Dr. McMahon and Coach Lindsay.

SPEAKER_01 1:54

Hello, I'm Dr. Jim McMahon. Welcome to the Wellness Connection MD Podcast, where you find honest, commercial-free, evidence-based information about functional integrative lifestyle and wellness medicine. Glad you could join us today. Let's face it, unless you die suddenly, most of us will live with a chronic illness at some point. Some of these illnesses can be life-altering. And they don't just affect your body, they can also have a profound impact on your mind and your spirit. So today on the show, we have the perfect person to help us better understand the emotional and psychological impact of chronic illness, and to give us some practical solutions as to how we can effectively deal with these challenges. Our very special guest is Dr. Diane Tucker, Professor Emerita of Psychology at UAB, the University of Alabama at Birmingham. For over 25 years, she has worked as a psychologist at the UAB Supportive Care Clinic, seeing patients and training students. Her research focuses on psycho oncology and end-of-life decision making. She is also a founding member of UAB's Center for Palliative Care, and she serves on UAB's interdisciplinary ALS team. So Diane has tons of experience, wisdom, and passion that she brings to us on the podcast today. We'll look at this issue from the point of view of the patient, the family, the caregiver, and the provider. And we'll leave you with some practical resources you can actually use, whether it's for yourself or someone you love. So without further ado, on to the show. Well, welcome, Diane. I've been wanting to do this podcast for quite a while. I think it's an issue that's super important, affects so many people, and yet I think it's not talked about enough. So I'm thrilled to have you on the show today to help us gain some insight into this valuable topic.

SPEAKER_03 3:34

Glad to be here.

SPEAKER_01 3:34

Diane, I've come to realize that we're all just sort of one car accident or one phone call away from living with a chronic illness, a disability, a fear of death. A simple phone call with the phrase, uh, we see a mass on your x-ray or your labs are abnormal, can be the beginning of an entirely new chapter in life.

First Reactions And Being Heard

SPEAKER_01 3:50

So when you see somebody who gets that call, what are the most common psychological and emotional reactions that you see?

SPEAKER_03 3:56

Well, I think it's it's certainly shock, disbelief, and I think that the reaction an individual will have depends on what they bring to the situation. If they have a family member who maybe has has died of cancer and they get a cancer diagnosis, it is especially terrifying. So I think the important thing is not to expect or prejudge how somebody's going to react, but just ask and let them tell you what they're thinking and feeling.

SPEAKER_01 4:29

So does it seem to make a difference to the patient how the news is delivered?

SPEAKER_03 4:33

Aaron Ross Powell Well, I think certainly the answer would be yes. Ideally, the the patient or the person is with their physician and can ask questions and feel like they're they're heard. Sometimes the need to get things rolling means that they might be informed over the phone, and that will be probably especially difficult to cope with.

SPEAKER_01 4:58

How does this reaction play out over time?

SPEAKER_03 5:01

I think it's important that we not prejudge how we expect people to be responding. There will be a mix of grief, anxiety, fear, and just a confusion about how to move forward. And it the important thing is for the patient and the the people around supporting them to just be willing to listen and understand what the reactions are rather than having a program that one expects to play out.

SPEAKER_01 5:40

So someone receiving this uh news would typically have some emotions about it. Uh so that might include, for instance, low mood. So how does the patient, the family, or the provider distinguish between a clinical depression and understandable sadness?

SPEAKER_03 5:54

Yeah, that's an interesting question. And I'm going to take a different tactic than you might expect. If someone is exhibiting signs of depression, whether it be not being able to get out of bed, a lot of tearfulness, loss of interest in things that had previously been important, that indicates that they are struggling. Whether or not it c cla it qualifies for clinical depression, I think is I don't find that to be a particularly helpful categorization in the work that I do. I do find that the traditional treatments for depression, like cognitive behavioral therapy, you know, the cognitive reframing of a situation, and also medications are extremely helpful. And I frequently recommend that if someone is struggling, that medication to help with recovering their resilience and facing the difficult situations that they're having to handle is very helpful.

SPEAKER_01 7:08

Great. So when we face a serious illness and and there's some grief involved, is that grief about the disease itself, or do we grieve about, say, the loss of our former self, including the loss of independence, routine, work, identity, or other imagined future?

SPEAKER_03 7:23

Mm-hmm. And and that's another excellent question. My experience is that the reactions to the illness itself are often more in the vein of anger, fear, fury, why me? And but there is there are a tremendous number of losses that one faces when health changes. And that loss of independence of whatever role one has in your family and with your friends are huge. We our s our sense of identity has a lot to do with how we contribute to the lives of others around us, being able to work and help support a family. And all of those things are potentially threatened when there's a diagnosis of cancer or some other chronic illness that is going to compromise someone's future. Most of us think with anticipation about what our retirement will look like when we really have control over our time. And when that is snatched away by a major change in one's health and potential for doing whatever you wanted to do, travel, et cetera, that is a huge loss and requires some very thoughtful processing to move beyond.

SPEAKER_01 8:58

I think chronic illness can actually mess with somebody's identity. We identify as a person, a human being, but uh when we get that uh diagnosis, sometimes our identity becomes I am a cancer patient. So how do you sort of protect that ident that sense of identity?

SPEAKER_03 9:12

Aaron Ross Powell I think first by doing exactly what you just did and recognizing it. It's actually good news that when you're a cancer patient, there is kind of a program that you go through to help you recover your health and to control the cancer. So that's good news. But it does mean that yes, suddenly you are a cancer patient, you are a chemotherapy patient, you are receiving radiation. And all the details of who you are as an individual may not affect much about how that happens. The the things that mitigate against that loss of identity are that I hear over and over again how wonderful the nursing staff is in the infusion clinic and how compassionate folks are and and how even connections happen between patients. And so realizing that there's going to be recognition of who you are and your social impact will be appreciated in in the context of that treatment.

SPEAKER_01 10:42

Yeah. Well, great. Well, thank you so much. Trevor Burrus, Jr.

SPEAKER_03 10:43

And I think I think another piece is we as individuals can remind ourselves okay, I am still me, even though I'm going through this cancer experience, I am still me. You can let your loved ones know. It would be helpful every now and then to remind me that I about who I really am. So that's worth holding on to.

SPEAKER_01 11:09

Is there pressure for these patients to kind of fight hard or stay positive? Uh and and can that actually become emotionally harmful? And also, how does a patient strike a balance between expressing their feelings in a healthy way versus feeling like they're a whiner or a complainer?

SPEAKER_03 11:24

Mm-hmm. Well, I think those are really important issues uh to consider. Yes, there is a pressure to be a good patient, to be positive, to take what you know, take the discomfort that you need and tolerate whatever side effects happen to the the treatment. But in reality, it's really hard.

SPEAKER_01 11:46

It is.

SPEAKER_03 11:47

And I think that being willing to admit that this is difficult. You you may need to go through it, but you do not have to like it. I uh I'll tell people that you don't have to like this.

SPEAKER_01 12:02

And you don't have to suffer in silence, do you, Diane?

SPEAKER_03 12:05

No. One of the things that you know, it's it can be vr it can be frightening to be overwhelmed by sadness or anger or just kind of strong mixed emotions. And I I find that when people that are in the the cancer experience or some other chronic illness experience are willing to admit how overwhelmed they feel and maybe you know, and their loved ones may feel the same way. And I say cry together, be sad together, be angry together, but you don't have to stay there. You can share that experience, you can experience it, and then you can take a deep breath and move forward. And I think that helps with an an authenticity in the especially the relationship with close caregivers or loved ones, just acknowledging that both of you are struggling, this is hard, you're sad and angry together, but you're gonna move forward.

SPEAKER_01 13:13

My uh father-in-law, Gordon, wonderful guy, was a true cowboy out west, and uh he had this saying, cowboy up or suffer in silence. And uh I think that may work on the ranch, but it's probably not a good idea for a chronic illness. And so uh to some degree at least.

SPEAKER_03 13:27

There is some extent of you, you know, you you put put on your big boy pants and you get through it.

SPEAKER_01 13:33

Yeah.

SPEAKER_03 13:34

But realizing that it's hard and being honest about that, I think, is important.

SPEAKER_01 13:39

Aaron Powell Yeah, and and I I think people just understanding that that grief is normal and it it it's you should anticipate it. It's not a weakness i in your character that you have grief over this. And so I think that's really an important message here.

Regaining Control During Treatment

SPEAKER_01 13:52

So a lot of times in a situation like that, people just objectively like lose control of their life. And so how can we actually help patients regain a sense of control when so much is objectively outside of their control?

SPEAKER_03 14:08

It's a very, very important question and and concept. I do think one of the things that's happened in medicine is there's much more of an authentic shared decision-making culture than there used to be, where patients really do get to decide you know, this chemo is going to have these side effects, and if they are too much for you to tolerate, we will pivot and change. And so I think that gives a sense of some level of control. Another thing that I've learned over the years that I've worked in this context is that just having the program and making it through, you know, if you have, you know, 12 chemotherapy treatments to get through, you know, as you move through each one, you could check that one off. And, you know. But there is there's a clear roadmap. And that the energy that it takes to stay on that roadmap and stay in the game is energy that's being devoted to taking care of one's health, to moving toward a healthier future. And that is a sense of being able to cope or a sense of some agency. Okay. And something that was initially surprising to me was uh there are folks who soldier on through their their chemo, their treatments, and then after it's all over, they get tremendously depressed or anxious. Instead of, you know, let's throw a party, we'll ring the bell. They realize in those first weeks or month after treatment that they are very much struggling. And my sense of how to understand that is they no longer have any active coping roadmap to be taking care of their health. Now they're just kind of left alone, and it's terrifying.

SPEAKER_01 16:21

Aaron Powell Yeah, I could see that. Yeah.

Wellness Culture Blame And Money Stress

SPEAKER_01 16:23

And by the way, we've been talking about cancer a lot. However, I just want to make clear that uh this podcast is about chronic illness in general, which should include, you know, Parkinson's ALS or COPD or uh congestive heart failure, but certainly cancer does come to mind. You know, I've been part of the wellness community for quite a while. In fact, that's part of the name of my podcast. And the wellness culture often implies if you just eat right, think right, uh try hard enough and take the right supplements, you can stay well or heal from illnesses. So what does that message do to somebody who seems to do everything right, but they still get sick or they stay sick? And sometimes uh it it seems like the the nicest people are the ones who take great care of themselves and and and look like the picture of health are the ones who get sick. And these folks might rightfully ask the question, why me?

SPEAKER_03 17:07

Uh-huh. And that is a tough question. And of course, there's no answer. We don't understand exactly why one person, you know, develops cancer or Parkinson's or ALS. And I think one of the things we need to remember is when we find someone who has been taking exemplary care of themselves and they get sick, that is that just sticks in our mind. So, you know, in general, taking care of yourself and doing the quote right things is going to reduce one's risk of illness. But it it it certainly is not a real protection. I think one of the the potential dark sides of the wellness culture is for someone who is sick, their friends, their family may say, Oh, well, well, I heard that you should be taking this acacia berry supplement. And if you just take enough of that and and eat organic food, that'll you'll you'll be okay. The emotion behind that is I care about you, I would like to be able to help you get through this. That's that's the underlying message. But the message in the comment is that you weren't able to sufficiently take care of yourself and you have messed up because you haven't taken all of these supplements, and that is a very hurtful message. The person who's already ill doesn't need to hear that it's their fault in some way. Does that make sense?

SPEAKER_01 18:49

You know, another thing that occurs to me is that there are a lot of people out there who are trying to make a buck off sick and desperate people who will try anything. So you have influencers, uh, you have people selling snake oil and and promising these amazing outcomes, and boy, oh boy, it it it's really disheartening to see that. And and a lot of people they sucker for it, uh, but uh it it's unfortunate. So anyway, well tell us also about the impact of what I call financial toxicity of the people sort of knowing that their disease can bankrupt their family.

SPEAKER_03 19:20

Well, this is a a real concern. And it's something that if financial struggles are part of the consequence of a diagnosis, ask for help in how to navigate that. At UAB in supportive care and in other, you know, in in oncology, other units, there are social work staff. And their skill set includes helping identify sources of financial support and financial easing. So when I have somebody that, you know, in my office that's you know struggling with something financial, I make a referral. And you know, there are grants you can get to pay for X, Y, and Z. There are local programs, and so just asking for the assistance is is really important.

SPEAKER_01 20:16

Aaron Ross Powell By the way, I love social workers. They're just the most wonderful people in the world. We used to see them in the ER. People come in and they were so desperate. And you know, what do you do with this person? You call a social worker and they just seem to take care of everything. So uh hats hats hats off to social workers, a shout-out to them.

SPEAKER_03 20:32

It's a different skill set. It's really important.

SPEAKER_01 20:34

It really is.

Life Stage Intimacy And Role Changes

SPEAKER_01 20:35

So two people with the same diagnosis may face very different psychological challenges. So, for instance, talk to us about the psychological task of chronic illness across a lifespan. For instance, let's say a child who gets rheumatoid arthritis versus a 70-year-old person who gets rheumatoid arthritis. It's very different.

SPEAKER_03 20:52

It's very different. And part of the way we can understand that is you know, the predictable, we know what the developmental tasks are at at various stages in life. But we also just need to ask someone what uh you know what their concerns and struggles are. One of the areas that I think is being appreciated now is for people who've had a a chronic illness as a a child or adolescent, as they transition to adulthood, they are actually trying to become adults and will need to now be in charge of their own medical care. And so that transitional period when we can help with that getting integrated into the adult care system in a way that the the person feels their emerging adulthood is being honored, um, is something that I've I've had the opportunity to. Do several times and is important. When illness changes what someone can do in midlife when they've still got kids at home and they're trying to provide a a stable situation for a child going through middle school or high school, that's just can be very challenging. And it's just important to recognize that each person's an individual with their own life situation and life challenges.

SPEAKER_01 22:33

Yeah, that's a great point. So we've never shied away from the topic of sexual health on the show. And so let's just briefly touch base on that for a moment. Uh chronic illness can profoundly alter sexual function, attractiveness, body image, desire, physical intimacy, and the partner patient uh dynamic. So share with us some thoughts on these issues, please.

SPEAKER_03 22:52

Mm-hmm. It's a really important topic. Trevor Burrus, Jr.

SPEAKER_01 22:56

It is an indeed.

SPEAKER_03 22:56

And and I you know, I do just do a lot of listening to try to understand, you know, for s for a woman going through treatment for breast cancer, for some women the change in their appearance is devastating. And something they're having a very difficult time getting past. For others, the scar is a a symbol that they've faced this and gone through it, and it doesn't have the same role as a disfiguring kind of something to be hidden. One of the things I have learned is that the only way to understand the impact of changes in physical intimacy for an individual is to ask. You know, I will ask, you know, how's the physical relationship with your husband or with your wife? And it's completely unpredictable whether if that changes, if you're if they're no longer intimate, whether it's the husband or the wife that feels it most acutely, and what it is they miss. Do they miss intercourse or do they miss just being touched? And but being willing to, for a a health professional, to be willing to ask those questions and listen and try to open the door to the idea that intimacy can be maintained even if the sexual relationship has maybe changed either temporarily or or for the long term. So I think it's just important to ask and listen.

SPEAKER_01 24:44

Aaron Ross Powell Okay. And then which of your providers might have the say the tools or the resources then to help them with that? If you listen and you identify, yeah, there's a big problem here, then then would you take care of that? Or would is there a sexual health expert that you refer to, or how does that work?

SPEAKER_03 25:00

I do not know of a a kind of sexual health resource at UAB, for example. So it's something that I usually work with people on.

SPEAKER_01 25:11

Very good. Very good.

SPEAKER_03 25:12

Individually.

SPEAKER_01 25:21

For instance, when the spouse, partner, or loved one becomes the caretaker?

SPEAKER_03 25:25

Mm-hmm. Yeah, excellent question. The family system, the roles that one has in family, in the workplace, in a community are going to potentially change when someone's health has changed. And there are many pieces to that. Sometimes a spouse will step up and be absolutely present, come to all the appointments, and just uh and and it's a whole lot better than their partner could have ever imagined. So sometimes there's a very positive risk of surprise and even a an increased sense of closeness. Other times it's much more fraught. A a frequent scenario is the mom, the wife who's been the church lady and taken care of everybody, you know, on the caring committee at church and helping with all the family dramas and the, you know, the the center of the family. And then when she is not able to fill that role because she's struggling with you know treatment and and her own health, the a sense of what am I worth? How you know I've lost my my place in my family and my community. And for folks who f have had their their role as the caretaker, to accept help from others feels like a a tremendous loss of their status and their themselves. One of the ways I try to reframe that for people is to recognize that being in the helper, helper position is a really special position. It's you realize you're being trusted and valued for for that role, and that accepting help from somebody else is actually a loving, trusting thing to do and can be a real gift. And so if somebody can change the way their narrative goes about the idea of accepting help, then that makes that a much smoother process.

SPEAKER_01 28:04

Sometimes you can look at challenges also as opportunities, and it's certainly an opportunity to express loving-kindness in a very uh intimate way, isn't it? But uh caregiving can be incredibly stressful and exhausting in in really every

Caregiver Strain And Respite Planning

SPEAKER_01 28:19

way. So what kind of emotions might caregivers have sometimes uh they they could even be ashamed of, to admit, like for instance, resentment, exhaustion, or even wishing they could just escape?

SPEAKER_03 28:30

Mm-hmm. Yeah. Well, those things are certainly normal. And my sense, my advice is to try to be proactive and create the needed respite, whether it be arranging for a friend to come over and stay while you while the caregiver goes out for a little while, you know, arranging for the help you might need. And also often when there's an illness, people say, Well, how can I help? What can I do? Being prepared for that question. You may not need any more casseroles. The freezer may be overflowing, but maybe what you could really use is could you plan to come over every, you know, every other Wednesday for, you know, an hour or two so that you know the patient, Mary, can, you know, can have some company and I'll I'll plan to do some things that I need to take care of. But planning ahead so you don't have to be always asking for help, but you arrange kind of an or or put somebody else in the this the position of being the captain of the team that will arrange for you know somebody to come by and visit for whatever you need. Does that make sense?

SPEAKER_01 29:52

Aaron Ross Powell It does. You know, uh my sense, and you correct me if I'm wrong, uh I think as a society we don't do a very good job of caring for the caregivers. And I think that uh would love to have any ideas you might have about how friends or family, medical professionals, or society at large can help care for the caregivers. Anything else besides what you already mentioned?

SPEAKER_03 30:11

There are support groups that are available or are appearing for caregivers in particular contexts, for caregivers of dementia patients, for caregivers in in cancer and so on.

Listening Better And Holding Hope

SPEAKER_01 30:31

You know, I think sometimes when somebody gets sick, we really don't know what to say to them. And so we'd love some guidance on uh what we might should say or should like never say, like uh you look terrible today, or everything happens for a reason, which implies that they did something more fault. It's their fault. So yeah, give us some guidance on some things that are okay to maybe say or we should always avoid.

SPEAKER_03 31:10

So being way being willing to just listen and be present rather than feeling a need to try to fix it or to find, you know, to be giving advice that's going to, you know, somehow help. Probably the your friend and their medical team have got a pretty good plan. They don't need all a lot of extra advice, but just a, you know, how are you feeling? How how is this? What what is what's been the most difficult? What are the things you're doing that bring you a sense of peacefulness or what what things are you doing that are are helping? How are you spending your days? Just listen, asking those kinds of open-ended questions that let somebody be heard and seen, and then following up with asking more about that. It's very valuable to just be able to be present and engaged with someone when they're having when things have changed and you're you're trying to be supportive.

SPEAKER_01 32:25

Years ago, Diane, I wrote this article. One of my favorite I've written is called Listening, the most powerful tool in medicine. And I think that could be expanded to life, couldn't it? And to relationships, and to especially to this uh situation. But uh, yeah, listening is is huge. So anyway, let's let's talk about the role of hope and and what I call false hope for both the patient and the provider. And just to sort of set the stage uh with a true story, I I had a one of my best friends from high school. Unfortunately, he got terminal brain cancer, and he was in his mid-30s, so he saw an oncologist who told him the truth, that this was incurable, he needed to get his affairs in order. So my friend promptly fired that doctor and went looking for a new doctor who would say, We're going to fight this with everything we have and we're going to beat it. And as it turns out, the first doctor was right. And but I can kind of see it both ways. Uh, you know, people want hope, uh, but then do you give them false hope? I don't know. I would love to hear your thoughts on that from the patient and the provider point of view.

SPEAKER_03 33:23

Yeah, it's a it's a really challenging balance. One of the phrases that I've learned from palliative care colleagues is we're going to hope for the best, but prepare for the worst. And so it's that sense that we're not going to take away all hope. And whether whatever the source of that hope, whether it be that there's a a drug that we haven't tried that might might make a difference, whether it's a a spiritual belief in healing that can happen through through spiritual means, whatever that source of hope is, we're not trying to take that away. But thinking through if if things you know don't go in a a positive direction, what what decisions will you need to make? How do you want your family to to handle end-of-life issues for you? What what would do you have a will? You know, all of those sort of things are the preparing for the worst. And the conversations, you know, for example, about end-of-life decisions, about resuscitation, intubation, those sorts of things, those are hard. But they can produce an authentic sense of communication and caring and respectful love. Trying to understand what the, you know, the patient, the the loved one wants, and then thinking about, okay, what would it be like for me to honor that wish? And those those can be very intimate, meaningful conversations and important. And so we as as health, as providers, need to be providing as much opportunity as possible for people to have the resources they need or preparing for difficult times in a way that ends up being positive.

SPEAKER_01 35:39

Mm-hmm.

Meaning Purpose And Simple Practices

SPEAKER_01 35:40

You know, I've always felt like a sense of meaning and purpose is uh super important in life. And this can actually be tied to our identity. That sense of identity can change in an instant when somebody gets a call about the spot on their x-ray. How does one go about coping with the loss of meaning and purpose or perhaps finding a new sense of meaning and purpose? For instance, I'm reminded of a guy named Jim Valvano. Some of y'all might be familiar with him. He's a former basketball coach at NC State who won the national championship one year and then was diagnosed with terminal bone cancer. So he went on to spend the rest of his life as a passionate advocate for cancer research, uh, giving him an entirely new sense of meaning and purpose in life, bigger than basketball. And so even in the face of imminent death, he was able to find that meaning and purpose. So any thoughts on that, how we can uh maintain that meaning and purpose in our lives, uh, even in the face of chronic illness and potential death?

SPEAKER_03 36:31

Yeah, this is a hugely important question. And something that when I'm working with folks through the supportive care clinic, that I almost always end up focusing on. We do need to have something that's pulling us forward, something that we are aspiring toward, something that is worth our energy and our time. I mean, it might be a grandchild, it might be, you know, wanting to accomplish something, it might it it can be whatever it is for for an individual. An illness, you know, a cancer, some other chronic illness, can change the possibilities that somebody can reasonably entertain for their future. And that is an enormous loss. And so part of what I as a therapist, but also friends and family can do to help with this is to open the door to thinking about other ways to maybe accomplish the things that are really important. And those things may have changed with the illness. You know, for example, when somebody has developed what's likely to be a terminal illness and maybe has young grandchildren or young children. They say, Oh, I wish I'm not gonna be around, most likely to see my granddaughter get married. I'm not gonna be around when these things happen. And so one of the things we talk about is, well, that may well be the case. Maybe you could write a letter that that grandchild will open when you know she graduates from high school. Maybe a different letter that she will open when she's going to be married. The things you would say to her that you maybe don't say to a nine-year-old, but you would like to say to a 19-year-old or a 30-year-old who's having her first child, go ahead and write those down. And it can be a such a meaningful experience. And so it's a matter of trying to think about what is going to be a new sense of purpose. And you know, you and I have talked about the power of using a journal as a way to sort through that. Many of us, maybe most of us, have a narrative of negative narration going on in our heads, especially when we're struggling with something hard. And that gets in the way of thinking forward or or diff or thinking about alternatives. And using a journal, when that is is getting in your way as a way to sort through, you know, write down what what those thoughts are. And then I think the analogy you used, which I was beautiful, was the idea of mold them into something else. But you know, write it down, take a deep breath, maybe read over it, and then think about what's going to be next.

SPEAKER_01 40:03

Trevor Burrus, Jr.: Yeah, Don, I've I've been through a few challenging health situations in my own life, and sometimes I think of this sort of amorphous blob of negativity in my brain kind of going round and round and round. But if I can force myself to write it down, then it start I start to make sense of it. Uh it starts to take shape. And then I can sort of mold it and start to move forward. So thank you for bringing up that journaling. I think it's super powerful and important.

SPEAKER_03 40:28

Uh so I think I'm gonna I'd like to make a comment about a journal, because many of us have tried to keep a journal and failed. And I think it's important to define the role a journal would make would take. I I always tell people, you do not have to write in this every day. Write when it feels like it would be an outlet, when it feels like it would be a release. And that means it becomes a tool, not a responsibility or something to fail at.

SPEAKER_01 41:07

Yes. And uh some people do write every day, and they are some people are morning journalers. They kind of uh help the journalists sort of set the tone of their day and what they hope to accomplish. Uh others are uh I was more of an evening journal. I would kind of wrap up my day, and and so uh but yeah, I mean you can make it what you want. Some people like the just a whole handwritten, you can type it. You could there are actually journal apps you can get on your iPhone these days. So there are lots of different options there for you. But you know, this whole discussion reminds me of a wonderful old country music uh song called Live Like You Are Dying. It's a real tearjerker if you haven't heard it, but I kind of like the song. But uh the meaning of the song as I see it is to do your best to sort of live in the moment and appreciate each passing day and not to dwell in the past or uh for our former selves or to live in the future with anticipatory grief about where this disease is going. However, living in the moment is a nice sort of catchy phrase, but it is hard to do. And so do you have any uh suggestions for us as far as how people can go about just sort of being here, being now, being fully present in this moment?

SPEAKER_03 42:09

Well, that's an excellent question. And I think it's a challenge for all of us, whether we are coping with an illness or or not. My my sense is that some pretty simple things can help with reminding us to stop and look around and be present. I read a book recently called Breathe, and you know, the idea of just taking a moment, a couple deep breaths, opening my eyes, and everything around me looks different. And doing that even a few times a day helps with my sense that I can recognize how beautiful the green is on the trees. I can understand how wonderful it is to be able to communicate with a caring health professional like you that wants to make a difference. And I can be present in my own life. There's an app that you can get for your phone that'll give you a random chime. And when you see that chime, when that chime happens, the idea is to just breathe and be present. So something that breaks the cycle that is going on in our heads can be very, very useful.

SPEAKER_01 43:35

You know, we talked about journaling as a really important tool. One other tool that we we kind of alluded to was just connection with nature. You know, uh sometimes just uh getting out of our lazy boy or a sick bed or whatever, and just going out to the porch and and and just looking at the blue sky and the green trees and just the the the wonder of nature. There's something special about that that I think is is very healing. I think there have been some good studies showing. Showing that the connection with nature actually does help with things like anxiety, depression, and and that kind of stuff. So that's another little tip we'll share with

Hospice Palliative Care And Hard Choices

SPEAKER_01 44:08

you. So, Diane, we've talked a little bit about dying and the the fear of death. Is it more about pain or loss of control or leaving the family behind, unfinished unfinished business, or uh what the process of dying might look like? Or is it all above all the above?

SPEAKER_03 44:26

That's an excellent question. And what I have learned is you just need to ask and listen. The I can't predict whether for an individual it's going to be a fear of pain at the end of life and being not being able to endure it, whether it's just sorrow at leaving people that one loves. I ask and then I listen. And often if we really understand what somebody is worried about or s or sad about, we can help with that. You know, for example, hospice care at the end of life can be very effective at keeping people comfortable. And they don't need to worry about suffering or putting their loved ones through the experience of watching them suffer because they won't be experiencing that.

SPEAKER_01 45:29

Mm-hmm. That's very comforting. And you do have a lot of experience in palliative care. And uh would you comment on the role of that for us for these patients and also address the persistent misunderstanding that palliative care means giving up?

SPEAKER_03 45:43

Aaron Ross Powell Well, there are several terms that there's overlap and they get used in interchangeably when they shouldn't be. Hospice is a Medicare benefit that is available for those that are expected to have less than six months to live. And it provides for end-of-life care and as I said can be very effective at keeping people comfortable during that last phase of life. And that but also at with hospice, the active treatment to try to cure the problem has has ceased. With palliative care, palliative means comfort, comfort care. So it's the goal is to reduce suffering and ongoing treatment to try to cure or change the course of a condition or disease is absolutely consistent with palliative care. So I work with a number of people who are receiving palliative care and they're in inactive treatment. People are referred to the palliative and supportive care clinic at UAB when they have complicated medical and andor psychological issues around their illnesses. And we have an interdisciplinary approach to provide as much assistance as possible and to reduce suffering. We use the term supportive care at UAB for this interdisciplinary approach on the outpatient in the outpatient context.

SPEAKER_01 47:48

And in most instances, I think these folks were not actually contemplating suicide, but as a provider, you never really know. So so should the doctor, the mental health provider, or the family ask about the issue of suicide, and if so, then uh how do you go about that?

SPEAKER_03 48:05

If if my sense is that someone is distressed, distraught, depressed enough that that there's a concern, then I certainly, you know, I certainly ask, you know, have have you thought about have you thought about hurting yourself? If you you know, and have you thought about giving up? Many, many times what people really want is to suffer less and to get help with how to move forward in the context where they are.

SPEAKER_01 48:45

There are states where physician-assisted suicide is an option for these folks, so where the death is certifiably imminent, especially for those who are also in significant pain. This is a controversial issue, and I'm not coming down on either side of it on this podcast, but I'd love to get your thoughts on this matter.

SPEAKER_03 49:01

Aaron Ross Powell I I'm a uh a real advocate for people being able to make informed decisions about their own health and their own future. You know, we as providers do everything we can to cure, to help, to you know, help with with coping. I personally believe that we ought to have the agency to make a decision about end of life, if that's what we want to choose. I think it's one a choice that has to be made very carefully, of course. And so I when somebody brings that up to me, I want to just listen and try to understand what what are they saying? Are they saying I'm at peace with this and I'm ready, I would be ready to let go? Are they saying I'm angry and I want to just get, you know, I don't think I've gotten good care and my family's not taking good care of me, and you know, I'm gonna just if if it's a something that's uh that's from anger or desperation, then that's what I would work with.

SPEAKER_01 50:25

Mm-hmm. I also have a question I'd like to ask you for the providers in the audience. I once had a friend who was a pediatric neuro oncology nurse practitioner. And for those of you who may not be familiar with that terminology, she went to work every single day to help children with brain cancer. And oh my gosh, Diane, she's just such a hero to me. And but oh my it seemed like that would really take a toll on her. So how does a provider strike a balance between being kind, caring, and compassionate and being a witness to suffering without taking ownership of it and burning out?

SPEAKER_03 50:57

That's very well stated. You have to be present and uh uh receiving the experience that the patients are having. But there has there needs to be some kind of psychological boundary. There are some times when I feel like putting my fist through the wall. I am so angry for this person that has, you know, been dealt a bad hand, and I mean I just, you know, they don't see that of course. But but mostly I think realizing that what we do as providers is important, that we're making a difference is is key. I try in my work to make sure that whenever I've you know I I see somebody, they have something to take away, something that is their next step. And that helps me feel like being present with their situation has been that it mattered. I think healthcare providers support each other and that is crucial. As a psychologist that's part of a team, several teams, I'm often the person that somebody would come to when they're really struggling with you know how difficult a person's situation is. And I think it's important that that there be that honesty of and authenticity of relationships among providers to prove to. And sometimes it's humor. You know, when there's a tremendously complicated situation saying, oh, well, I'm gonna go fix that, and it's like, of course, that's absurd.

SPEAKER_02 53:01

Right, right.

SPEAKER_03 53:02

But just to it's a way of acknowledging what we can and what we can't do. And but it's but it's certainly taking care of oneself psychologically is very important in order to be able to do this kind of work long term.

SPEAKER_01 53:21

Aaron Ross Powell You know, Diane. My wife, Dr. Cheryl, her mother had ovarian cancer and she went fairly quickly. But uh one thing we did towards the end was we showed this kind of loop of I Love Lucy in the Dick Van Dyke videos. She loved him and she got so many good laughs out of it. And so we we definitely tried to use uh humor as a tool there. Now, for you younger people in the audience, you don't know uh what I love Lucy is, but uh but uh yeah, she's pretty funny, you might want to check her out. But uh you know, there are a couple things we hang our hat on on this podcast,

Support Groups Online Use And AI

SPEAKER_01 53:52

Diane. Number one is being evidence-based, but number two is to try to give people practical solutions. And so I'd love to leave our listeners with some practical tools, approaches, resources they can use to cope with chronic illness. And so uh can you discuss some of those things that you would recommend? And uh I'd be glad to leave a list of resources on the website. We'll call it Tools for Chronic Illness. How about that? It'll be on the helpful resources page on the website at McMinnMD.com.

SPEAKER_03 54:16

Yeah, I think that the internet certainly provides way more information than we can use. And there may be some things that are useful in terms of uh appreciating the complexity of emotional reaction to chronic illness. And I think the most important thing is authentic communication with the people that matter to each individual. That that those, whether they be family or friend relationships or church community, become so important when one's life balance is threatened. And I'll I'll be happy to we have some resources on the supportive care clinic website that I'll be glad to share with you. Trevor Burrus, Jr.

SPEAKER_01 55:10

Wonderful. And so yeah, we'll post those. We all we already mentioned journaling and time with nature and stuff like that, so we'll post those as well. You know, I would imagine that some of the social media support groups and other online resources can help people and you kind of touched on that, but uh it seems like they could also be kind of a rabbit hole to others, so leading to some doom scrolling and and that kind of stuff. So uh any thoughts on that?

SPEAKER_03 55:31

I mean I think you're you're right on the money. Sometimes they can be so helpful, especially if somebody has a a relatively rare condition where there's you know not a support mechanism available in their their home city. Here it in Birmingham, I want to mention, or in Alabama and now Mississippi, for breast cancer patients, there's an amazing organization called ForgeOn, forgeOn.org. And they have a wealth of resources, everything from counseling and and peer support to you know medical information. So I would really encourage people to connect with them. What I recommend in terms of online support groups is for people to just gauge the impact for them. If it is reducing their distress and helping them feel connected, great. If it is draining or increasing their pessimism, I'd say, you know, leave that one. It needs to be a support.

SPEAKER_01 56:46

Okay. Now I know everybody's tired about hearing AI. It's everywhere, right, these days. Uh but I just have to ask the question. So in many places, for instance, uh the rural counties of Alabama, especially if you're poor, it can be very difficult to access mental health resources and to help the patient and families through these difficult times. So is there any role for AI to be involved in any way in helping these people? And let me be clear, I'm not trying to talk about replacing competent human mental health professionals. I'm asking about using AI as an adjunct, or in some cases we're, for instance, in a situation where a person can only see the provider every few months or can't access mental health at all. Any thoughts on that?

SPEAKER_03 57:25

You know, that is just an excellent question. And and I think we are at a a tipping point in a way where the potential is enormous for AI to augment the resources available for patients and caregivers. The I think we've all many of us have also heard that you know AI, when it is in the mode of just reflecting what it's hearing from its its conversationalist, may reinforce somebody's negative thoughts to the point of reinforcing suicide. And so if the AI is only reflecting and listening, I would be pessimistic about whether it will make a significant change for the person and help them develop new, more effective ways of handling the challenges that they're facing. However, the potential to provide a customized or a conversational environment that would help reinforce more adaptive ways to interpret things and additional strategies for coping, that's an enormous frontier, which I think has great possibility. I anticipate that in the neck in the coming years there will start to be well-done research looking at how do we structure these AI environments to be a good substitute for or at least adjunct to other mental health resources. And there may be, you know, may not be too far down the line where I can work with somebody and then I can put some parameters into an AI program for them to use at home that is based on what I have understood about their particular way of viewing their situation and their coping.

SPEAKER_01 59:50

That's an excellent point because a lot of these AI chatbots are programmable. And that's great. Just a few thoughts of my own on that. I'm kind of into AI a little bit, and I think that even now, although it's early, we still have uh already substantial literature on AI chatbots for mental health support. There was a randomized controlled trial published in the Gemma Network uh just April of this year, and it showed some benefits for anxiety, depression, overall life satisfaction, and well-being in the AI intervention. However, at this time, I do think it's fair to say that still in the investigative stage, it's really not ready for prime time. These AI programs are proliferating rapidly, but most of them have not undergone rigorous testing. And there does remain some concern about safety, especially in folks who might be in crisis or who might have suicidal ideation. And by the way, I think it's important to clarify that there are chatbots that are built from the ground up for mental health concerns, such as WASA or Therabot, whereas others are more generalized, like uh the familiar, say, ChatGPT and many others. And uh they also have some digital uh cognitive behavioral therapy apps uh that are available as well. So, in summary, these AI tools have some potential for benefit, but they're it's really too early to merit the overall stamp of approval or to know exactly what role they will play in the future. So stay tuned with us, though, because AI is like it or not, it's with us, and we're gonna see it probably emerge in the mental health field. Well, all

Closing And Ways To Support

SPEAKER_01 1:01:13

right. Well, Diane, oh my gosh, uh, that was so informative. Thank you so much for coming on the show today and sharing your uh expertise with us. It was really fun to talk to you, and uh, I think we uh got through a lot of material, and so I appreciate it very much.

SPEAKER_03 1:01:25

Okay, thank you. You're welcome. It was great.

SPEAKER_01 1:01:28

Well, that will about do it for this edition of Wellness Connection MD. Thank you so much for listening, and a special thanks to Dr. Tucker for joining us today on the show. I hope that we were able to share something with you that informed and inspired. Before we go, I'd like to remind folks that our podcast is one of the rare podcasts these days that remains completely unbiased and commercial free. If you'd like to make a contribution to the show to help us keep it coming to you, then there are a couple of ways you can contribute. First, if you buy nutritional supplements and we're not asking you to buy anything you don't already take, then consider purchasing from our Full Script Dispensary at a 10% discount. You can see the link to Full Script below in the show notes, or you can go to McMenMD.com and the link will also appear there at the bottom of the homepage under Helpful Links. It's quite simple. Just click on the link and they'll guide you through the process. It's a win-win. You get the high quality supplements at a discount and we get your support for the show, for which we are very grateful. You can also make a contribution directly to the show via credit card or PayPal at the SupportThe Show link, which is in the show notes. And thank you so much for your support. It really means a lot to us. Don't forget to subscribe to the show so you won't miss an episode and tell your friends and family about us. Help us spread the word about evidence-based, holistic, functional, lifestyle, preventive, and integrative medicine. If you like the show, then please help us out by taking a moment to rate us on iTunes and keep the love coming. It really means a lot to us. If you would like to reach out to me to comment on the show or to make recommendations for further topics, then you may do so at dr McMahon at yahoo.com. And if you would like to view a complete transcript of the show, then go on over to McMahonMD.buzzsprout.com and you will find it there. And that should do it. Until next time, stay curious, stay informed, keep it real, and remember small actions can lead to big changes. Take that first step towards better health. This is Dr. McMinn signing up. Take care and be well.