Navigating Chronic Illness Together: Deborah Sharp on Couples, Community and Care - S2 E16

Alysia Thomas:  Hey everyone, welcome back to Autoimmune Adventures. Today we're going to be talking about something that is often overlooked, but it is deeply needed. Emotional connection and support when you are living with chronic illness.

Stacy Griffin:  We are so excited to be joined today by Deborah Sharp, a licensed clinical social worker based in Austin, Texas. Deborah specializes in helping individuals, couples, and groups navigate chronic and catastrophic illness. She's led chronic illness process groups, works closely with couples facing health challenges, and is an advocate for deep authentic connection during difficult times.

Becky Miller:  Deborah, welcome to Autoimmune Adventures. We're so glad you're here with us. Can you take a moment to introduce yourself to our audience and share a bit about what led you to focus your work on chronic and catastrophic illnesses?

Deborah Sharp:  Oh, I can. And thank you for that lovely introduction, Stacy. That um. I'm happy to be here. Um, as you said, I'm I'm a licensed clinical social worker. I'm a psychotherapist, and I uh, my practice focuses on running psychotherapy groups, including those for people with chronic and catastrophic illness or disability. Um, and what led me to my first education was in nursing. I've always uh, had a a love for physiology and understanding how things work. And so um, I worked as a midwife for a while um many moon ago and then I went back to school because I through my work uh, in midwiffery I came to understand how important emotional connection is for individuals in any sort of crisis.  

Um, and I wanted to do more of that work. I wanted to learn more about that work and so that's what brought me into psychotherapy. Um, my mother had um, narcolepsy. Um, she and she had the full complex of symptoms of narcolepsy. So she had sleep episodes and uh, cataplexi and hypnogogic hallucinations and um that was at a time when the disease was not very well understood. Um, and so some of the treatments were uh worse than the disease and um so I, I uh my earliest, she was diagnosed with narcolepsy when I was five. So my earliest memories are about living with chronic illness, and um how you cope and how you compensate, and how uh one person's illness or disease has an impact on the whole family system um, on the whole social network. Uh so I breathed that in with you know at the same time I was learning how to write how to how to read. Um, so this has always been part of my life. And then my father, um, who developed early onset Alzheimer's, um, and lived with his disease for 10 years before before dying at age 65. So I was 15 when he was diagnosed, and 25 when he died.  

Deborah Sharp:  Um, and so that gave me another experience of what it's like to live with, um, I would categorize that as both chronic and catastrophic. Um and um again the impact on not only the individual um but on the family system and on the social network uh and how important it is to have a social network to now whether that's your family or whether that's a friendship network or whether that's a team of professionals or whether it's all three simultaneously. um it's so important to have the kind of support you need. And then I discovered again because my second daughter was diagnosed with leukemia and um, she had a a chromosomal translocation which was is associated with an especially poor outcome and she died of her disease after living uh with it for three years. And so again, uh, a personal experience with catastrophic illness. And so, both my professional training and my lived personal experience from childhood on has has led me to have a a deep understanding of what it's like living uh, in and with chronic illness.  Uh and also to be really dedicated to doing what I can to make things better or to help people uh, make their own lives better.

Alysia Thomas:  It is an honorable, honorable, kind of work that you are doing. We are so grateful to have you with us. Um we talk a lot about having support systems. That's we have our big six principles that we suggest to everybody living with chronic illness and and um one of them is to have a strong support system, and we are blessed to have each other us three sisters um as as you know the top the top people in my support system are my, are my girls here um, and I have a wonderful husband but we we started this podcast because we know not everybody has that.

Deborah Sharp:  Mhm.

Alysia Thomas:  Not everybody has that and Um, I think we're very blessed to live in a day and age where we can connect online and and um build our network that way. But I love the work that you're doing. And so you've led chronic illness groups in the past. And so for people that might not know the difference, what exactly is a process group and how is that different from a traditional support group?

Deborah Sharp:  I'm so glad you asked that question. It's uh it's important to talk about the distinction. Um so when we were chatting a minute ago, we we um all agreed, I think, that chronic illness is a part of life. Um if you're living with your disease, then it's part of your life, but it's not who you are. It's not the only thing you are, right? that that uh you still have to fix breakfast and figure out what you're gonna do for work and you know you you have a life, right? You form relationships, you have all the problems that relationships bring and all the joys, right? Like you you have a whole life. And so when I'm running a pro a support group, um support groups are wonderful. Well, they're wonderful period, but they're especially useful at diagnosis, right? Or around the period of time. Uh I, I want to I want to call it diagnosis to accommodation, that phase, right?  

Deborah Sharp: Um and I, I, I will not use the word acceptance because nobody signs up for this, right? It's like we're we're not going to endorse, oh boy, that's what I want, right? Um but, but I ,I do like the word accommodation. And so support groups are especially good during that period of time and can be good on an ongoing basis because both giving support and receiving support is part of the same circle, right? And so even if if you personally ha - I'm talking now about a support group - that even if you personally have reached the point of accommodation um you have a you've gained a lot of wisdom in that process. The three of you know a whole lot, right? And each person that lives with their own experience of chronic or catastrophic illness has a lot of wisdom to share. And so, um, it can be marvelous at diagnosis when you you're you're just, you know, dear in the headlights. You know nothing, um and you're trying to figure out what the impact of this is on your life, what it means, how you're going to cope. Um. and it can be really valuable years down the line um in sharing your wisdom and helping those that are coming behind you to learn the ropes so to speak to be able to figure out to be empowered to figure out their own path. Uh, so that's the value of a support group. I think also support groups often share tips and tricks, right?

Alysia Thomas:  Yes.

Deborah Sharp:  Because you have figured something out along the way. You know something, you know much probably more than you want to know about the medical system and how to navigate a medical system, right?

Alysia Thomas:  Yeah.

Deborah Sharp:  And um, also I there are different aspects of course to various chronic illnesses, but but autoimmune diseases share a lot of common factors. And so even though you may have one and someone else has a different one, uh perhaps you're both dealing with fatigue for instance. And so you can share tips and tricks back and forth about how to manage your obligations, your your uh how to talk to other people, about what your needs are. Um there there's a lot of joy in a support group, right? I mean, it's not always joyful, but there's a lot of goodness in a support group.

A process group, and this is true of any process group, including the ones that I run for people with chronic illness, brings in more there's uh less focus on exclusively your illness and um, it brings in more aspects of your whole person, uh of of everything that you are. Um. and it uh and so in a process group we work relationally uh between members. Um and uh we work more in the present moment about um knowing how you're feeling in what emotional experience you're having in any particular moment and building up our resilience, our tolerance for our own emotional states and other people's emotional states. Um, what is lovely and I really enjoy about running a chronic illness process group and you'll tell me if this matches for you. I'm gonna going to believe it does, but you'll tell me um that it's not often-- the three of you have it- you can talk shorthand about chronic illness, and then also talk about this cool new recipe you found or whatever. I don't, you know, some day-to-day aspect of your life and then perhaps some emotional challenge that you're facing that doesn't necessarily have to do with your chronic illness but you must bring in your chronic illness in order to be understood fully.

Stacy Griffin: Yeah.

Alysia Thomas:  Yep. That that's definitely and and for years when I, I felt like this obligation to explain myself to others sometimes if I couldn't do something or I had to do something differently or and uh I've I've stopped I've stopped feeling the need to explain. I don't know if it's just that I got to the point where I'm like, you know what? First of all, nobody cares that much. Usually, if you're in a support group, probably people do care, but out in the real world day-to-day, most people just don't care. But that's really an interesting thing to think about, because uh, I have three kids that have celiac disease and they have to learn in their childhood to advocate for themselves. And so food is involved in a lot of social settings and they have to bring it up, and they know they have to know how to communicate to keep themselves safe, and they at the same time don't want to don't want to be different from their peers and they don't want to have it be weird or or they don't want to trouble anybody, and so um yeah that's an interesting that's an interesting thing you work through with people. I hadn't really thought about it but it's very very true.

Deborah Sharp:  My granddaughter has celiac.

Alysia Thomas: Yeah.

Stacy Griffin: Yeah, it it is interesting to learn how to navigate the world with something that is so much a part of you that you don't usually think about it until other people become involved. And so I, I would agree that that that is a challenge, but it's it's something that has personally strengthened me. And it's because I've chosen to let it strengthen me. But it's because I had good therapists and I had a good support system. And I understand that that is not always as easily said. It's a lot easier said than done in a lot of cases. Um, is there a particular moment or insight from one of your groups? I know you need to obviously not cross lines, so I'm not asking for specifics, but could you maybe give us an example of something that has really stuck with you or shaped how you work with your clients from your experience?

Deborah Sharp:  This is is an idea that we talk about a lot and make reference to in um talking about our experience in in group. Uh is this idea maybe maybe you're familiar with it the the Damocles syndrome. Are you familiar with the story of Damocles?

Stacy Griffin:  I know about Damocles but I don't know what Damocles syndrome involves. So I would love to hear more about that.  

Deborah Sharp:  Yeah. Well, I I hope this will speak to you. It it does to a lot of a lot of people. Um Damocles, you know, wanted to be king and um saw everything that the king uh benefited from. saw the feast, saw all the tribute, saw all the regalia, saw all the luxury, wanted that. And so the king said, "Okay, you can be king." And so, uh, Damocles came up to the throne and the feast was before him and everything he had always wanted in life was right there until he noticed that there was a sword hanging over his head by a thread. It could fall at any moment. And so, Damocles was faced with the choice that the king already knew about, which was he could focus on the feast, or he could focus on the sword.

Deborah Sharp:  And that idea comes up in our group continually. Um it it uh people will will you know make reference to Damocles, right? Like, oh, this is a Damocles moment, right? When um, your whatever, your disease process is, whatever your autoimmune disorder is, uh whatever your catastrophic illness is, it doesn't go away. It's still there. And uh it there can be the the temptation, the siren song of of focusing so much on that your illness or disorder that you lose the moment, you lose the joy in life. Um and that's the sword, right? But uh if you are able to know that the sword is there and yet focus on the feast, focus on relationships, focus on connection, live fully in every moment. Well, that's the trick, right?

Stacy Griffin: I love that so much. That that's a really beautiful analogy for what we have to do. I think our diseases do hang over us on a thread at times, and we do not always realize that it's not going to change. Thinking about it isn't going to change that it's there. But what we choose to focus on instead makes a huge difference in how our lives go. So enjoy the feast.

Deborah Sharp:  Mhm.

Stacy Griffin:  Enjoy the feast carefully.

Deborah Sharp:  Don't lose track of the sword.

Becky Miller:  Exactly. 

Stacy Griffin:  Carefully. Keep track of the sword. Don't Don't sit under it and wildly throw your arms around.

Alysia Thomas:  Yeah, I was going to say don't party so hard that the sword starts swinging.

Deborah Sharp:  Yeah, exactly. Yeah.

Stacy Griffin:  But yeah, I love that. That's a beautiful analogy.

Becky Miller: Well, um I was going to say I think you've given us a little bit of an example of the magic that happens when people are trying to heal together in a group setting when you get chronic illness people that come together. And again, obviously we understand you can't give specific examples for HIPPA reasons, but just in general, what are some of the most powerful things that you've seen happen in those spaces as people are coming together as in a group trying to heal.

Deborah Sharp:  Well, sure. Well, I think universally the most powerful thing is to know that you're not alone. That um, whatever because it's well, I'm I'm telling you something that you live with every day, but I'm I'm going to say it even though it's obvious that it can be so isolating to have a a chronic illness or an autoimmune disorder.  It can be so isolating and um it can sometimes feel like well I'm the only one that this is happening to. Why me? Right. Um...

Alysia Thomas: Yeah.

Deborah Sharp:  ,,,and when we come together as a group even though each individual's experience is unique, and you can have exactly the same disorder, exactly the same disease and have a completely different experience particularly with autoimmune disorders which show up. so randomly and unusually which also makes them difficult you know the diagnosis journey to be difficult um but when when people come together and um I don't pick your most problematic symptom whatever in your mind right whatever that is um that you you at some point in life are thinking really this is like what why is this happening to to me. I'm the only one. This, you know, a little bit of it's unfair because it's not fair. It's sort of it's so random. It's not fair. Um but when we come together as a group and we think, "Oh, well actually I'm not the only like this other person, these two pe, everybody in the group is dealing with that, right?"  Then you have a social circle. Then you have a network. Then you have then you're not alone.

Becky Miller:  Thank you. I, I really think that's powerful because I think sometimes because they talk about them being invisible illnesses and because, you know, like we said earlier when we were meeting before the podcast, we don't necessarily go and introduce ourselves as, you know, my name is Becky and I have these diseases kind of thing. When you're meeting people out in the world, most people if, if you have an invisible illness, people don't always realize what's going on. And so it can feel isolating because people don't see what's going on. And being in a setting where everybody, like you said, has it out in the open and are discussing it, I can see um how that is very, very beneficial.

Deborah Sharp: The other thing I want to say about a process group again versus a support group and and both of them are are incredibly valuable. Um I I just something I want to say in contrast is that um there is a joy and a solace in being completely known. Completely known. Not only known in our illness or disorder, and not only known in the rest of our lives, but excluding our illness or disorder, but to be known fully as a human being living with a chronic or catastrophic illness. It's a wonderful it's it's hard one to get there. Takes time to get there. But uh it's a joy and a solace.

Alysia Thomas:  It is extremely um, it's terrifying to me to let people see me completely sometimes. I mean, really only the very closest people to me get to see that because you when you develop friendships not in a support group setting, you know, out in the world, whether that's through work or community or church or neighbors or whatever, um I always just dread the the moment in my friendship with someone that I have to let them know that I'm going to be unable to do A, B, or C because of my chronic illness. I always dread that feeling that they're going to be like, "Oh, she's a downer." Or, "Oh, she's just trying to bail because she doesn't want to do this., or..."  

Deborah Sharp:  Well, that's what you imagine they're going to think.

Alysia Thomas: Right? Ninety-nine percent of the time, people are so generous and even though they don't understand if they're a good friend, they they're generous. Um, but it does take a, a no small amount of um, bravery to let yourself be seen completely. And I can see how being in a support group or a process group would feel like a very safe place to let yourself be vulnerable like that. Um, because you know that the people there understand where you're coming from. There is there's so much power in that. There is, it's, I mean, when you feel validated there is so much power in that that you can really allow yourself to be seen. I think that's beautiful. And and moving on to the next question kind of dovetails into it. Um, the person who sees me the most is my spouse. And um I know that you work with couples that uh well, where one or both partners are managing chronic illness. So, what would you say are some of those common struggles that you see in those relationships?  

Deborah Sharp:  Oh, I'm so glad you asked that. Um the most common uh, difficulty that comes up is let's use the example - and this can work even if both people have uh something that they're managing - but, uh, let's pretend for a moment that only one member of the couple has a chronic illness or disorder, right? And so we talked a minute ago about how isolating that can feel and the tendency and again you tell me if this matches your experience but the the tendency can be for the person with the illness with the auto, with the illness or disorder. Um it it's it's that person and their illness and then there's the other person, right? Um and and uh that can feel like the primary relationship is with the illness. So what works better, um what what the goal could be is for the couple to be the primary relationship working together to manage the illness or symptoms. It's a very different mindset.

Uh you you um one of you, Alysia, I think it was you talked about food. Oh, with your kids, right? And um social gatherings, which are often based around food and often cause problems. Um, I was talking at a reflux summit recently where this was just the topic of the day was um what to do about food. Uh and um if the couple is working together around choosing restaurants, around planning social events in their home, around how to manage Christmas parties or holiday events, uh you know, whatever it is you're going to um if the couple is working together, then then this is the couple and the symptoms or disorder is out there and and that's that's what you want.

Becky Miller: And that is helpful. I know sometimes when I go out in public and my husband sometimes advocates for me knowing that I can't eat gluten, like he's sometimes a better advocate for me than I am myself if I'm with a group of people who aren't aware of that. And uh, and you know, even he keeps it he always keeps it at the forefront of his mind. If I go in to kiss him and he's just eaten a piece of bread, he's the one who's going to be like, "Whoa, whoa, whoa. Let me go brush my teeth first or whatever." you know...

Deborah Sharp: Oh, what a gift.

Becky Miller:  ...like, and, so, so I think that's very true. I think it's very easy to get consumed by our illnesses, like you said, and make them almost our primary relationship. And so, yeah, I can see why that would be such such valuable way to work with people and help them understand.

Stacy Griffin:  I would agree. Um, when when illness centers the picture, as we've already discussed, it impacts everything.

Deborah Sharp:  Mhm.

Stacy Griffin:  But I always think about how it can impact communication. One of my really good friends when she got chronically ill, the communication in the, in her relationship started to deteriorate quickly. Um, how do you help couples talk more openly about the emotional and physical toll they're experiencing with one another so that they can address it together?

Deborah Sharp: Well, first I want to say that's scary, right? Um, Alysia, you said that there were very few places where you're fully known. And uh, of course we want we want of course we want that. We all want to be seen and known and loved for who we are. We all want that, right? And because we're terrified, we do everything in our power to make sure that never happens. And so acknowledging that uh, for instance,Stacy, you and I could say to to your friend, we could say, "Well, just talk about it, right?" But but that's not taking into account how very difficult and frightening, how many imaginings we have about someone else's thoughts or feelings. how much fear we have about what they're going to do with the information we offer them, right? And so, um, to to just say, well, just talk more. Ahh, it's not that easy, right? And so, um, acknowledging how difficult and how terrifying it is is the first step. And taking it slow. We don't have to dive in with everything all at once, even with our partners. Even with our partners, we can test the waters, you know, right? 

And it does help if you have a facilitator. It helps reduce the anxiety. You've got someone else to hold uh your couplehood, right? someone else to hold the anxiety. Um, and so sometimes we can manage th, that communication on our own. Uh, sometimes it goes great and and there we go. We're just off to the races, right? But, but sometimes we need a little bit of help in overcoming our our fear and facing our imaginings and finding out what's actually true for the other person. Because remarkably, when we find out what is actually true for the other person, we can tolerate that. But in our imaginings, it's everything all at once. But when someone..

Stacy Griffin: I love...

Deborah Sharp: tells you what's true for them, it's only one thing. It's only whatever it is. That's all. It's only that. And we can tolerate it. I'm sorry, Stacy. What were you going to say?

Stacy Griffin:  That's fine. All I was going to say was that I really love that, because I remember my father telling me when I was young that it's all, that the things we imagine are always so much bigger and uglier than reality. that reality is usually a much kinder, gentler thing than our wild imagination will make it.

Deborah Sharp:  Mhm.

Stacy Griffin:  And so having a facilitator who can walk you through the process of unpacking things...

Deborah Sharp:  Mhm.

Stacy Griffin:  ...so that you can actually realize that it's not as bad as you thought it was and that this other person does care about you and maybe doesn't understand, but cares. That helps a whole lot.

Deborah Sharp:  That helps so much.

Stacy Griffin:  Yeah.

Deborah Sharp:  And again, that's where a process group can come in because um in order to have those difficult conversations, it is necessary to be able to tolerate our own emotions and someone else's emotions. And a process group can give you a lower stakes place to practice that.

Becky Miller:  How do you handle it as you're helping couples if you find that um the couple [member] who doesn't have the chronic or catastrophic illness genuinely isn't interested in taking care of the other person. because I know that doesn't you know usually, usually like we were just saying our imagination is going to be far worse than what happens but occasionally - because I guess I always think about when I was going through cancer, I was, it was before I had married my husband and honestly it made me very shy of dating after I went through cancer, because of it, but I can't tell you how many times I would be sitting at the cancer center just talking to people as we were waiting to see the doctor and how many people, both women and men, had their significant other leave them when they got sick with cancer.  So, I guess if you're seeing that, like how do you how do you help a couple where one of them, the one that's not ill, seems like they're ready to check out.

Deborah Sharp:  I feel so sad as you're saying that. It's such a sad idea, and I think that's what everyone's afraid of, right? Is um being alone. It's terrible to be alone, to feel alone. Solitude is wonderful, right? But uh to feel like you're facing something difficult alone, like there's not, someone that's not there for you, it's the very worst. And I, I wish that I could tell you that therapists are magical, but you know, we're not. And and sometimes it, it's heartbreaking.

Alysia Thomas: Yeah, we've seen a good number of people on um, some of the online groups that I am a part of, a heartbreaking number of people post um, about their relationships failing or being hanging on by a thread um because of their chronic illness, or I'm sure there's other things involved, but they perceive it to be because of their chronic illness. And um, it it made me think about when you were talking about how during that diagnosis period and the accommodation period in my imaginings and in my recollection of of my own experience that period of time is the hardest time to communicate with your partner because I didn't understand what was going on in my own body. So...

Deborah Sharp: Yeah.

Alysia Thomas:  I didn't know how to talk to him about it. I didn't know how to say. All I knew how to say is I feel terrible. I feel like garbage. I can't keep my eyes open. I'm exhausted.

Deborah Sharp:  I'm so tired.

Alysia Thomas:  You know, my joints hurt. Blah blah blah. And in the be, I mean even even when my celiac diagnosis was new and and never would have found that if not for my sisters. But um even when that was new um I remember my husband questioning the validity of a lifelong diet without gluten. He was like uh are you sure? This is crazy. And I'm like I've done the research. Like if you want to do the research, you can or you can just take my word for it, you know, but that that period of time where you're you're trying to um come to terms with what your life is now and it there's this very real sense of grief um when you receive a diagnosis. And um...

Deborah Sharp:  Grief about the life you believed you were going to have.

Alysia Thomas:  Exactly. Exactly. That's what I was going to ask is how do you help people cross process that grief or that loss of identity that, that you can feel when you get a diagnosis?

Deborah Sharp:  It's so hard um at a time because that diagnosis, initial diagnosis period is so vulnerable, right? It's so vulnerable um, and there's so much pain and this is true when couples are facing grief of, of any kind, right? that um the the problem with grief around chronic illness diagnosis is that it's not labeled as grief. Like we're not talking about it as a loss. 

Um and so it's very hard to do grief work if you're not acknowledging that you're doing grief work, right? If you're not acknowledging that there's a loss happening. And uh, I feel a little tearful as I'm thinking about it, because it's a loss for both partners.

Stacy Griffin: Yeah.

Deborah Sharp:  And um, what's true for grief in general, and this is it relates to what we're talking about right now, but it relates to grief in general, that if two people, for instance, if you've had the death of a loved one. You're never in exactly the same place at exactly the same time, even if you're grieving the same loss. So, one person may be in the depths of despair and the other person has just gotten, you know, like, okay, maybe I can do this. I've got a, I can, I can do this, right? It's going to be okay. And, and that disparity between where the two partners are emotionally at any given moment. Now, of course, their experience is also different, right? One person is grieving what's happening in their body, and the other person is grieving what's happening relationally, right?  

Deborah Sharp:  Um and and so they're not grieving exactly the same thing. And of course, even if they were, they're not going to be at exactly the same point at all times. What happens when You know, there's a lot of ways for it to go well, but it's pretty much the same way when it goes poorly. And that's um resentment. And the person living with um chronic illness or disability um needs help. Like we need help, right? Um, and who knows what kind of help we're going to need today because it's not going to be the same as what we needed yesterday or tomorrow or maybe five minutes ago, right? And so it's hard to plan for that.

Alysia Thomas: Yep.

Deborah Sharp: and it requires so much communication and so much communication at a time when one you don't know, two, how can you know? And three, you're feeling so vulnerable. And so resentment in the person with the illness can build up rapidly about, because we want our needs to be met, you know, like we're humans, and we have needs and we want them to be met. That would be nice. And we can, you know, we can cope with okay, it didn't well, you know, he didn't know. She didn't know. Whatever. I don't know either. How can you know? Okay. So, we can do that for a while. Um, and uh, under the best of circumstances, we can limp along like that until we actually do know what we're doing and communicate enough to build a structure. In the partner, "Um, well, we couldn't go out to dinner. Well, we couldn't go to that party. Well, you were so tight. Well, you're ne..." why, you know, like the resentment builds up there also. And um, and but I don't want to be that person, you know, that's mean. I'm selfish. Right? And so then it's not communicated and then that's the key, that the resentment builds up on both sides and it becomes a wedge. And that's why I say that it needs to be the couple managing the disorder, not this person over here trying to figure it out and that person over there kind of standing by and feeling helpless. Um, that that's not that's not going to go well.

Stacy Griffin:  I would agree that that is a huge problem for many, many people. Um, like like we've said, we've talked to countless people on support, on online support groups, friends that we have, people that we bump into who find out what we do and want to say things and, and I've, I've told people on multiple occasions, "if you're not managing it together...

Deborah Sharp:  Mhm.

Stacy Griffin:  ...then you need to get help from someone like a therapist who can help you navigate how to manage it together, because I'm not going to do that." I'm not going to offer that kind of advice. I don't have the credentials to be doing that. I can tell people that it's important to have support, but they need someone who can facilitate that support when they're in their relationship. and and then of course above all else they need both of them be we to be willing to do that. So um...

Deborah Sharp:  And to have patience...

Stacy Griffin:  ...and to have patience to do it.

Deborah Sharp:  Because it's not a quick process.

Stacy Griffin:  It is definitely not a quick fix. I would agree.

Alysia Thomas: No. And it's up and down and like you were saying, you don't know what we're we never know like what we're going to need one day and what we're going to need the next. And it takes a certain kind of commitment to someone to sign up for a life of that with them. And uh unfortunately a lot of people don't really live up to their wedding vows of "in sickness and in health." Um and...

Deborah Sharp:  On that day, we seldom know what it's going to mean.

Alysia Thomas:  Exactly I was going to say.

Deborah Sharp:  Uh-huh.

Alysia Thomas:  When I got married I was young. I was healthy. We had three kids and we were traveling the world and we were doing things and...

Deborah Sharp: Yeah.

Alysia Thomas:  ...and our lives changed. Our lives changed and I'm, I'm blessed to have a man that has stood by me and has supported me. But man, it is not easy for either of us and, and I appreciate you giving the insight into what it really might be like on their side. That's good to think about.

Deborah Sharp:  It's a loss on both sides.

Stacy Griffin:  I would agree. I would I would definitely agree. Um...

Deborah Sharp: And we don't want to think that's true, you know.

Alysia Thomas: Yeah.

Deborah Sharp:  We want to think um, I'm the same person I've always been. And uh, and it's life is different now. You said it. life. In fact, that, that is was the original title of my chronic illness group is Life is Different Now.

Stacy Griffin: That's a great title, it's great.

Alysia Thomas: It's perfect.

Stacy Griffin:  Um, I love that you mentioned that because I think that leads into my next question I wanted to ask, which is what role does self-compassion play in the healing process?  Not just physically, but emotionally and relationally, because I think we're often very, very hard on ourselves.

Deborah Sharp: That's so true. Yeah. Well, if you hadn't said self-compassion, I would have said self-compassion. I love the work of Kristen Neff um and her book, Self-Compassion and her website. I recommend it. Um, and I want to talk about judgment. Um, and imagination like I've, I've mentioned imagination, right? And so, so there there's two ideas here and both of them are very important. So, y'all help me keep track that I've talked about both of them, okay? Judgment often I can't say 100% of the time, but it's pretty close in my experience. Judgment is based in fear. That if, if you're, you know, feeling righteously indignant about something, you're afraid. I don't know what you're afraid of. I can imagine a lot of things, right? Um, I'll use an example from the perspective of the person who is living with chronic illness. Um, we were talking a few minutes ago about needs and about how unpredictable it is.  

Deborah Sharp: You're not going to know. You're not going to know. So, how in the world could they know, right? Um, and yet we want our needs to be met perfectly at all times. Of course we do, right? Like that's just what being human is about. We want that. Seldom get it, but we want it. Um, and uh, we can get because we're afraid of that idea of being alone, of facing this difficult, of being vulnerable, of facing this difficult journey alone by ourselves. That's our fear. And so we can get really judgmental of the other, like you know like I, I'm feeling whatever you're feeling and I need whatever I need and you want to go bowling or I don't know what, right, um and, and that is somehow a character flaw in you, right?

Stacy Griffin: ,Yeah.

Deborah Sharp:  Um, so, so judgment is based in fear. So if we can get in touch with the fear, then it's easier both for ourselves and for our partners, family, whoever we're talking about to have compassion for our experience. And it doesn't lead to resentment because resentment corrodes the pipes.

Deborah Sharp:  What keeps us from saying what's true for us is our imagination of what the other person is going to think or feel or do right. We have so many imaginings. Many of them are negative, right? Our brains are kind of hardwired to uh imagine negative outcomes, which makes sense, right? Uh you're walking through the jungle, you need to kind of remember where the tiger is in order to stay alive. I talk a lot about tigers. Um so, so when we are imagining things, we're often imagining negative outcomes. It, it's just kind of the way our brains are wired. We can use that same imagination to imagine wonderful things which will bring us peace and confidence but we seldom do it.

Um, so I do recommend it as an exercise like just to kind of build the muscle of imagining good things like the next time you start imagining dread consequences. Uh, just experiment. See if you can come up with like something really wonderful that would come out of this. For instance, being seen and known and loved for who we are. Um having a stronger connection, feeling incredible confidence in the foundation of your relationship. Wouldn't it be great?

Becky Miller: I love that and I think that's a great exercise that even those of us that feel like we have pretty good relationships. I think like you said looking at it from the other person's perspective, and I do think we always have that "are my needs being met" and like you said if we don't even know what our needs are at any given time how is our partner supposed to know? Um so I think that's all wonderful advice.

Alysia Thomas:  Medical care professionals... what do you wish that they understood better about the mental and emotional side of living with chronic illness?

Deborah Sharp: I wish they would slow down, and not, I wish they would use conditional language. This may happen. It's possible. You might rather than predictive language like you're going to, this happens. Um, especially when talking about the worst possible outcome.

Alysia Thomas:  Yeah.

Stacy Griffin:  Oh, amen. Some of the things that I have had doctors say to me about my diseases terrified me. And then I would go home and I'd do a little bit of research myself and realize, okay, yes, this is possible, but it's not likely. If I'm doing things the right way, I can live a very good, fulfilling, wonderful life for a long time. Yes, I will have pain I have to manage. Yes, I will have these other things that may happen. very much like Damocles. I've got a sword over my head...

Deborah Sharp: Right.

Stacy Griffin:  ...but I still have a feast in front of me, and I can still enjoy it. But when you have that it will be this way and your life is now a miserable waste, it's hard to move forward from that. It's...

Deborah Sharp:  Right.

Stacy Griffin:  ...really.

Alysia Thomas:  And it's shocking to hear from a doctor's mouth.

Deborah Sharp:  Yes.

Stacy Griffin:  Yes,

Alysia Thomas: I mean, sitting in a doctor's office and having somebody say, "You're never going to run a marathon and you shouldn't even consider anything like CrossFit, and you know, like your thyroid is going to shrivel up and die and you're going to have to just take more and more thyroid medication for the rest of your life." I all of those things I heard from a doctor's mouth and it was borderline traumatic for me.

Deborah Sharp:  Yeah, probably, probably not borderline.

Alysia Thomas:  At that point. It, I mean...

Deborah Sharp:  That's...

Alysia Thomas:  ...it, it, it's obviously stuck with me all these years later and...

Deborah Sharp:  Yeah, because...

Alysia Thomas:  ...uh, so yeah. Yeah.

Deborah Sharp:  ...physicians carry authority. Well, it's it's kind of a one-two punch. like one, they carry authority, and two, they're kind of your lifeline, right? To solutions, to help, to medication, to whatever.

Alysia Thomas: Yeah.

Deborah Sharp:  Diagnostic procedures, right? Like that, that, they are the gateway.

Alysia Thomas:  We are big proponents of educating yourself and being the own your own expert on your disease, because when you do that and you have a doctor that pulls that on you, you can advocate for yourself or you...

Deborah Sharp:  Push back.

Alysia Thomas:  Can say, you know, I think this is not going to work for me. I'm gonna find a, I've walked out of a doctor's office. I've walked out of...

Deborah Sharp:  Good for you.

Alysia Thomas:  ...exam and and and fired the doctor on the spot. Um, I've done that, and it was hard to do. It was scary to do because we do grow up feeling like uh, like we're taught that the doctor knows best. Um, so we've found in our years of experience, the three of us, that the doctor does not always know best.

Deborah Sharp: Well, you are the resident expert on your body.

Alysia Thomas: Yeah. Yeah.

Deborah Sharp:  You're bringing in this idea of agency of uh your own power that you are, whatever anyone position or otherwise, tell me too right like anybody uh whatever anybody tells you you have choice, and you are the only one that can weigh the impact of decisions on you. Nobody else knows. No, nobody else can know. I mean, you can tell them, but um but that still quiet place inside you that you can go to and know what's true for you. Nobody else has access to that until you tell them.

Stacy Griffin:  All right, we have one last question that we would love to ask you and it is this. You've seen a lot in your work with practices, mindsets or tools. And I'm sure you've seen people um who need some help with understanding the importance of emotional resilience, and we've talked about a lot of that. But what we want to end on is a high note. So we're going to ask you this. What gives you hope in this work? What is for you the most hopeful thing that we can take away and give to our audience today?

Deborah Sharp:  Oh, there's so many success stories. So, so many. I mean, they're just cascading in my mind right now. Um that, what gives me hope is that I've seen it time and again um what happens when we slow down when we, like slowing down is really important. I want to say that just slow down. Um and when we find that still quiet place inside uh, where we can know what is true for us and then communicate it to ourselves, to our partners, to our families, to the world, to our physicians, right? Um, you know, it's almost like you become a superhero. Like if you've got that, you can do anything.

Stacy Griffin:  I love that. That's beautiful. That's beautiful. Thank you for sharing that with us. So as we close up, we'd like to ask one last question about what you have to offer for our audience. So, if you'd please share a little bit about how they can get in contact with you, how they can learn more from you, we'd appreciate that.

Deborah Sharp:  Oh, sure. Yeah, I appreciate that. Um, well, I think the best way to get in touch with me is through my website, which is my name. You can see it on the screen. It's deborah-sharp.com. Um, and uh, I, I have availability to work with individuals uh limited availability for couples and um I'm starting a new chronic illness group, and so I'm interviewing me potential members for that group and there's, if you scroll down well you know you can read my website but if you scroll down on my website, you'll find a um, make an appointment link. Um, and you can just send me a message. Uh, there's there's two options. You can send me a me an email message or you can um book an appointment.

Stacy Griffin:  Okay, fantastic. Thank you so much. To everyone listening. Um, remember that your journey is valid. Your emotions are real. You don't have to walk this path alone. You can find support. There are wonderful people like Deborah who are willing to help, and we don't have to do this by ourselves.

So, we'll see you next time, adventurers. Remember, you are worthy of joy. Your disease does not define your life. You do.

HELPFUL LINKS:

Visit Deborah's Website for more information about her, and to book counseling sessions or apply to join a chronic/catastrophic illness process group: https://deborah-sharp.com/

Kristen's Neff's website: https://self-compassion.org/

Self Compassion: The Proven Power of Being Kind to Yourself by Kristen Neff

https://amzn.to/4nyTCy2

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