Cystic Fibrosis’s Impact on Mental Health

**Caleigh(Host):**
Welcome to our Fight to Breathe, a podcast rooted in resilience, community, and the power of storytelling. My name is Caleigh Haber and I'm so glad you're here. I was born with cystic fibrosis, a progressive, genetic, rare disease that affects the lungs and digestive system. I've undergone two double lung transplants, spent years navigating the healthcare system, and I've lived through moments I wasn't sure I'd survive. But through it all, one thing has kept me going Community. The fierce, brilliant and brave voices of others who know what it means to fight for every breath. This podcast was born from that fight.

Our Fight to Breathe is a space to elevate the voices of people living with chronic illness, disability and rare disease. It's a space where we talk about the realities of what we face. The triumphs and the grief, the injustice and the joy, the medical complexities and the very human stories behind them. Each episode will feature guests from all corners of the CF and medical world, from patients and caregivers to healthcare professionals and advocates. Together, we'll explore not just what it means to survive, but what it means to truly live. My hope is that you'll walk away from each episode feeling seen, understood, and a little less alone. Whether you're navigating this life yourself or you're here to learn, listen, or support someone you love, this podcast is for you. Thank you for being here. Let's keep fighting together.

Welcome to another episode of our Fight to Breathe. In today's episode, we turn our focus to a critical aspect of living with cystic mental health. We'll discuss the psychological impacts of this chronic illness, share effective coping strategies, and explore how to build resistance and and foster a supportive community with increasing recognition of mental health and quality of life. Our aim is to provide valuable insights and practical advice to help manage the mental health challenges associated with cf, ultimately enhancing the well being of those affected.

Our mission with our Fight to Breathe is to offer a platform for people to voice their opinions in an accepting and nonjudgmental atmosphere. We want to foster a sense of belonging and support and offering insights, sharing experiences and amplifying the voices within the CF community. Each episode will bring you closer to understanding the realities of living with cystic fibrosis, while also highlighting the strength, resilience and hope that binds us together. Now, let's dive into our episode.

Today I'm thrilled to welcome KC White, a leader and trailblazer in the CF community. Diagnosed with cystic fibrosis at age three, KC has dedicated over two decades to building and leading purposeful communities. She has been a committed volunteer and advocate since childhood, speaking at her first event at just nine years old. KC has been serving on the Cystic Fibrosis Foundation Board of trustees since 2005, chairing the foundation's Adult Advisory Council since its inception in 2014. She co chaired the first Breathcon in 2016 and helped create ROSE UP in 2020. And most impressively, KC was named Chair of the Board of Trustees at the Cystic Fibrosis Foundation in 2022.

KC also holds a Master's degree in Applied Positive Psychology from the University of Pennsylvania, where she now teaches as an assistant instructor for the program. Additionally, she is the head varsity Women's Lacrosse coach at her local high school, as well as coaches athletes on mental performance toughness. Her vast experience and personal journey make her an invaluable guest for our discussion on mental health and cystic fibrosis. Welcome to the show,KC White

Welcome to the Our Fight to Breathe podcast. KC, I am so excited to have you here as our expert guest. Do you mind introducing yourself and sharing your personal journey with CF and how it's affected your mental health?

**KC White (CFF Chair of Board of Trustees, CFF Adult Advisory Council Member, Co-Creator of ROSE UP, Asst Instructor at UP, Mental Performance Toughness Coach)**
Thank you so much for having me. I'm so excited about our conversation and really excited about this podcast. I know it's going to be important for so many people in our community and I've always appreciated the way that you have shared your story and how that's inspired so many people. So it's an honor to be here.

**Caleigh (Host):**

Thank you

**KC White (CFF Chair of Board of Trustees, CFF Adult Advisory Council Member, Co-Creator of ROSE UP, Asst Instructor at UP, Mental Performance Toughness Coach)**

My name is KC White. I was diagnosed with CF at the age of three in 1981. Obviously I've had CF since I was born, but because it's genetic. But I wasn't diagnosed until I was three. I was failing to thrive and after many, many doctor's appointments, my mom found a doctor who realized that I needed to be tested for cf.

And so once I got that diagnosis, it was obviously a very scary time for my family, as it is for all families, but especially in the early 80s when the life expectancy was in the teens, it was just a very different time.

And I would say my origin story around my mental health really started with my diagnosis story because the doctor that diagnosed me really encouraged my parents to raise me to be a responsible adult, even though the life expectancy was in the teens. And it was sort of a bold statement at the time, but she really believed in the mission of the CF Foundation and also the encouraging potential research on the horizon. And so she really gave my parents this message of hope that there's possibility. And that is what my parents really, and my grandparents as well, like, really latched onto. And they chose this idea of hope over fear. And that idea of hope has been so central to my life with cf, both from the mental health aspect, but also the physical health aspect.

And because of that, in 2022, I graduated from a program at the University of Pennsylvania in Applied Positive Psychology, which is the study of human flourishing and well being. And one of the reasons I wanted to go to that program was to really understand the science of hope and whether hope had been studied in people. With CF and what we know about the role of hope when dealing with chronic illnesses.

**Caleigh (Host):**
It is very difficult to know what the future holds in medicine. I believe as long as we continue to have a goal for the future, I think that it's possible to reach that goal.

You mentioned your family playing such a big part in you being positive and continuing to pursue your goals despite our life expectancy with cystic fibrosis.

Do you have any other motivating key factors that played a role in, you know, continuing to strive for a career and a family and all of those things that mean so much to you?

**KC White (CFF Chair of Board of Trustees, CFF Adult Advisory Council Member, Co-Creator of ROSE UP, Asst Instructor at UP, Mental Performance Toughness Coach)**
Yeah, I mean, I think again, my family, just another story about them that I think really played a role in my life.

My grandfather, he was such a big personality. Gosh, I. I loved him so much. And one of the ways that he lived his life was he had this 11th commandment that he referred to all the time, and that was **“thou shalt go for it”.** And so that was another piece of the way that I lived my life was that idea that I should always go for things that any challenge was just an opportunity to go for it. And that really was a big part of our family life. But then also me personally. And so I really had a mindset of CF not being a limiter for me, but really just being an opportunity to overcome the next challenge.

And then I think the other piece is I had a doctor who told my parents to get me into exercising as fast as possible because I really hated airway clearance, as most people with CF do. And one potential alternative would be to exercise. So I actually got like, extra gym classes in school. Like, I was pulled out of, like, math class to like, run laps with the gym teacher.

**Caleigh (Host):**

Wow, wow

**KC White (CFF Chair of Board of Trustees, CFF Adult Advisory Council Member, Co-Creator of ROSE UP, Asst Instructor at UP, Mental Performance Toughness Coach)**

And I've been, yeah, exercising every day since I was 4 years old. And I think that played a big part both in my mental and physical health. Physically. Obviously, we know exercise is good for the lungs, but for your mental health, it's also equally as good. And also it made me feel like even in a body that's flawed in so many ways, I always saw it as a body that can do incredible things as well.

**Caleigh (Host):**
You're so wise. Just the way that you express yourself and articulate your life and your family is quite impressive.

It actually reminds me a lot of my family because I had a doctor who encouraged my parents to have me exercise. And when I actually got into track and gymnastics, my lung function just skyrocketed. And as soon as my parents saw that, they were like, okay, we need to financially put all that we can into her exercise and encourage her to be the best she can be at exercise. Because I am quite like a competitive soul. So I think them telling me to be my best just made me exercise more, which was in the. You know, I didn't realize. Maybe I knew it was good for my health, because exercise in general is good for everybody's health, but I wasn't quite aware that they were doing it for me to be the best person I could be with cystic fibrosis and have my lung function be the best that I could be. So we're very lucky to have families who support us. And I know that we're.. Not everybody has that. So thank you to my family. Thank you to your family.

So you've researched a lot about cystic fibrosis and obviously positive psychology as well. Can you kind of fill in our listeners about the background in that research? How did that process work? Who did you speak to, and what did you gain from researching these two subjects together?

**KC White (CFF Chair of Board of Trustees, CFF Adult Advisory Council Member, Co-Creator of ROSE UP, Asst Instructor at UP, Mental Performance Toughness Coach)**
Yeah, absolutely. I feel very grateful that I had the opportunity to go to the Master of Applied Positive Psychology program at Penn, particularly because I got to study under a professor named Marty Seligman, and he is really the founder of the field of positive psychology.

Back in the 1990s, he was the president of the American Psychological association, and he challenged the group at their big meeting to really take a closer look at the aspect of psychology that was around well being instead of just the ways that our mind can focus on more negative things. So prior to that call out, most of psychology was focused around mental illness, which is vitally important to study. But he challenged the group to think about, well, what are the ways that help people thrive?

And so to be able to study under him was just such a gift. And I'm currently an assistant instructor in his class now in the program. So I stay connected to the work, which I love. What brought me there was the idea of hope and understanding the science of hope.

And what I love about hope is it's not just wishful thinking or, you know, a lot of times we think about hope, we say like, I hope it happens. Right? But what hope is in the scientific definition, it's about action and it's about deciding what goals you want to have and then taking steps to get there and then also being able to change your course if you find obstacles along the way.

So as we know, life in general, there's lots of different twists and turns. And especially living with CF because you think you're going down one path and then something with your health happens and then you kind of have to regroup and then maybe build back your strength again. And so I don't know about you, but I feel like I'm constantly sort of starting over again.

**Caleigh (Host):**
Oh, of course.

**KC White (CFF Chair of Board of Trustees, CFF Adult Advisory Council Member, Co-Creator of ROSE UP, Asst Instructor at UP, Mental Performance Toughness Coach)**
Yeah. That piece of hope, like, allows you to take that next step or build back or maybe find a different path. Right. Because sometimes your original goal doesn't align with where you are. And there's a whole concept about re-goaling and using hope to regal when life throws a curve at you. So, yeah, I don't know if you want to say anything about that.

**Caleigh (Host):**
I was going to jump in and say that you saying that hope is actually a something you can do with action. I've never heard it put that way before, but when I was in the hospital and organ rejection and I was waiting for my second transplant, I actually believed the whole time something that kept me motivated and kept my will to live was setting small goals, which I strongly believe in. Even if you're on hospice or if you're, you know, in end stage lung disease or wherever you are in your health. Goals are very important. And that doesn't mean you necessarily have to say, I want to buy a house or I want to skydive. It doesn't have to be a goal in the future that's really big and built up, but it can be something really small. As small as I want to eat my entire dish for dinner.

**KC White (CFF Chair of Board of Trustees, CFF Adult Advisory Council Member, Co-Creator of ROSE UP, Asst Instructor at UP, Mental Performance Toughness Coach)**
Yep.

**Caleigh (Host):**
Or I want to get through this conversation because I'm sick or whatever it is. You know, you set your small goals. And I believe that part of achieving those goals are actually medical management and, and the way that we can manage our health. Because I think every single step that we take toward good health is actually a step towards goals and futures and not necessarily quantities in the days of our life, but the quality of those days.

**KC White (CFF Chair of Board of Trustees, CFF Adult Advisory Council Member, Co-Creator of ROSE UP, Asst Instructor at UP, Mental Performance Toughness Coach)**
Yeah. I love the idea of small goals. Like, I know that there's been times when I've been on IV antibiotics and I'm like, I'm walking to my mailbox today, which is at the end of my driveway, like I'm getting outside and where if I'm not an IV is like, I might be able to walk for several miles. But just getting outside and getting to the mailbox, like, okay, maybe tomorrow I'll try to go a little farther and just all of those steps add up. And so those small goals really matter.

And the other thing about hope, actually that's been studied in people with CF is that people with CF who have higher levels of hope have better mental and physical well being and they also have higher adherence to treatments and they have less disease related stigma. So hope actually plays a really important role not only in making those steps with those goals that you set, but also in your overall health. It's been shown that actually hope is a big part of living with CF and survival as well.

**Caleigh (Host):**
This is a question from a community member and she asked, what do you believe are the key ways in which cystic fibrosis can impact mental health?

**KC White (CFF Chair of Board of Trustees, CFF Adult Advisory Council Member, Co-Creator of ROSE UP, Asst Instructor at UP, Mental Performance Toughness Coach)**
I mean, that's a great question. And I think part of that is really personal because we know that cf, everyone's journey with CF looks very different, both with their physical and their, their mental health.

I think there's ways, at least in my personal experience, where CF has actually been beneficial to my mental health because of all the advances I've seen in my lifetime. I've really. That actually also gives me hope and feeds to that idea that it can always get better.

I think I've learned so much about my own strength and resilience. We've been tested over and over again and every obstacle that we overcome just leads to that self efficacy that, “hey, I can do it again next time”. I think that I've developed really strong and amazing relationships with people I've met, my family, my husband, my son, also people in the CF community. Because we share, especially in the community, we share this bond that no one else can truly understand. And so to make those connections with people who know what it's like to live with CF has been so life bringing for me.

And I think that I have had some incredible opportunities because of living with cf, whether speaking at events or now in my role at the foundation as the board chair, like, these are just opportunities that have come from this disease that I live with.

So I think in a lot of ways there's been positive aspects to having CF and also knowing that life is short and confronting some of those Dark Places allows me to really savor each day in a different way. And it's helped me cultivate gratitude.

At the same time, living with CF is incredibly challenging, as we know, both with our physical health, but also our mental health. Because there's some dark days, right, when you're just feeling terrible and you're not sure what the next step is gonna be, or you are just frustrated that you have to make life changes that maybe your peers with CF, like, don't even have to think about, right? And just times where I've had to like, readjust my expectations or re goal in a way that I wish I didn't have to.

So it's both. Like there's some really incredible lessons I've learned out of living with CF and then some really, really hard days. And I think what I've come to know based on life experience and my studies is that human beings have this incredible capacity to hold both. Hold the joy and the sorrow, the frustration and the hope, the anger, and then also the joy. Like we can do hold both of these at the same time. And that we shouldn't be afraid of those negative emotions. They serve us in important ways. But we should always be a seeker of the good in our life because it's there. There's. There is so much good that's very natural.

**Caleigh (Host):**
And all of us experience those days and those swings from sometimes moment to moment, especially when we're having a CF exacerbation. We're sick. And it's hard not to compare to others, which is never healthy for our mental health. But it's human to compare ourselves, especially to our peers, especially to individuals with cystic fibrosis. I know as somebody who's in the older generation of CF having a transplant already, sometimes I think, well, what would life have been like if I was born today and I had all of the medications available to me today? Would I have had to suffer all of those years? But you point out really good things with just that suffering has led to me being so grateful as well and kind of having a different perspective on life in general and on people, on relationships, on my values, on knowing myself. I think having cystic fibrosis has confused me about who I am, but it's also forced me to understand myself, to spend a lot of time in isolation, spend a lot of time figuring out things on my own. And while sometimes that's led to self doubt, it's also led to a lot of self worth.

So these things do play, you know, they go hand in hand and Everyone listening. KC has so many good points, good strategies. I mean, I'm listening to you and I'm like, soaking it in because you're just this, like, wealth of knowledge, this mentor that I really look up to. And I love reading everything that you write, and I just love it.

I'm wondering in your studies if you've observed any notable differences in mental health challenges among individuals with cystic fibrosis based on their economic stance, race or gender?

**KC White (CFF Chair of Board of Trustees, CFF Adult Advisory Council Member, Co-Creator of ROSE UP, Asst Instructor at UP, Mental Performance Toughness Coach)**
Yeah, that's a great question. You know, I don't know too many specifics because I've really studied really the positive aspects of mental health in the CF community, more so than some of the harder places. That's just where my expertise lies. I do know that people with CF have higher levels of depression and anxiety than the general population. And also parents of people with CF tend to have higher levels of depression and anxiety as well. So it is a problem in our community.

If you're someone who has depression and anxiety, there are ways to manage that and treat that. And you should absolutely talk to your care team or trusted adults, parents or peers in your life who can help you get the support that you need. It's really essential to pay attention to your mental health because it has so many effects on your quality of life, but also on your physical health as well. So it's not something to be ashamed of. It's just part of your overall health is how do you care for your brain in the same way that you care for your lungs, right? Or other parts of cf, so it's whole body.

So talking about your mental health, asking for help about your mental health is so essential. And everyone has these very different circumstances in our community, whether it does come down to socioeconomic status or race or opportunity or where you live. I mean, there's just so many differences.

And everyone deserves the best care when it comes to both your mental and physical health. So I would say that's number one. Like, take care of yourself, ask for help. You deserve to be able to care for every aspect of your health. And on the other side, where my expertise lies is around proactively building well being. And there's a lot of strategies and, and things that we know that work to help cultivate and proactively build mental health.

**Caleigh (Host):**
I was actually looking online and I saw that the Cystic Fibrosis foundation patient registry in 2023 said that 26% of individuals with cystic fibrosis above the age of 12 have depression and 28% of individuals have anxiety.

So listeners, if you're out there and you have, you know, you deal with these two aspects of mental health. You are not alone. And as KC said, definitely speak to somebody and seek health. There's no shame that surrounds that at all.

I have gone through depression, I have had anxiety in my past and I know that through having cystic fibrosis and going through many stages in my health. I do daily check ins every single day. I've been doing it when I was in end stage and I've still doing it today at the peak of my health. So it's really important that we do these daily check ins. And I know that your strategies are very researched and they work. So tell us a little bit about the three things, intervention and how it can be applied to daily life.

**KC White (CFF Chair of Board of Trustees, CFF Adult Advisory Council Member, Co-Creator of ROSE UP, Asst Instructor at UP, Mental Performance Toughness Coach)**
Oh, the gratitude exercise. Three Blessings exercise. Yeah, that's a great one that I use every day and have for the last five years. And I think it really does make a difference.

**Caleigh (Host):**
I think I used it without even knowing what it was. And then once I started reading it I was like, I think I do this. Like I just have put it into my daily life, I guess.

But I attribute that to my mom because she is a very positive person who has sort of instilled this into me even in times when I didn't want to do those exercises and practice it.

So please share with our listeners because I know that it's so valuable.

**KC White (CFF Chair of Board of Trustees, CFF Adult Advisory Council Member, Co-Creator of ROSE UP, Asst Instructor at UP, Mental Performance Toughness Coach)**
Yeah, absolutely. I mean a lot of what I've discovered around positive psychology is that some of the recommendations are things that we already do.

But it's really helpful to know to understand the science behind it. And studies have shown how certain things have been useful to proactively building well being. So then you sort of even more invested in continuing to do it because you're like, wait, this actually matters and makes sense.

But the three blessings exercise is one that helps cultivate gratitude and positive emotions in your life. And so it's very simple. At some point during the day, you just take a moment to think about three good things that happened. Either it could be or three pieces of gratitude that you have that day. You could write it down or you could say it to yourself. I like to write it down because for me I can look back and be like, wow, this was a hard month. Like look at all the good things that happened.

And we really are what we turn our attention to. And so if we're only turning our attention to the hard things in our life, which is important, we can't ignore them. But if that's our only lens, then we will continue to sort of be oriented towards the hard things. But if we can redirect to also focus on the good, then we can see like a sort of a bigger picture of what our life really is. And these don't have to be big moments. Like, you can write your gratitude in your gratitude journal or your three blessings exercise.

Like, I had the best cup of coffee this morning and it just tasted really good. Or the sun came out even for five minutes and just to see the sunshine. This happens to me. I live in Ohio. So in the winter the sun is very hard to see sometimes. So whenever it comes out I'm like, “hi, thank you, it's so good to see you”. So just be grateful for that.

Or it could be a meaningful conversation you have with someone in your life, or maybe you had a great day and something amazing happened, right? It's those little moments and the big moments. And they're. It's worthwhile to just take a minute and reflect on them and savor them and have that gratitude practice for the three blessing exercise. And when researchers have studied people who commit to this three blessings exercise, they do show higher levels of subjective well being in the moment, but also over time as well.

**Caleigh (Host):**
Do you have methods for when you're having a really, really bad day and you're really having difficulty finding these moments? That something maybe you practice in order to like seek the moments out. Because you did mention that seeking this positivity is very important. So maybe you can share with myself and the listeners how you do that. That might be useful to them and also maybe to parents on how they can encourage their kids and raise their kids to find these grateful moments, these blessings, these positivities.

**KC White (CFF Chair of Board of Trustees, CFF Adult Advisory Council Member, Co-Creator of ROSE UP, Asst Instructor at UP, Mental Performance Toughness Coach)**
Yeah, for sure. I mean, even though I believe so much in the power of positive thinking and gratitude and hope and all of these things, and I'm well studied in them. Like I have my moments, I have my days where I'm like, oh, like nothing is going my way and I'm like so frustrated and like I have moments of doubt and is it going to get better? And oh, like the suffering, I'm over it, you know, so it's not that like our brains are programmed to actually focus on bad more. Part of it is for survival, right? Like we look both ways before we cross the street because of fear. Like it's really important to have these negative emotions.

And sometimes negative emotions are essential for change. Like how many times have you made a change in your life because of fear or because of anger and you're Like I want something different. And then you start making the steps. So those negative emotions I think are, they're very important and they should not be ignored.

But it's also important to turn your attention to those positive moments. So in my days of frustration or my darker days, like I definitely make a point to be a seeker of good, as I said, and think about, okay, what do I know? Brings me more positive emotions. So I may call a friend because I know that connection piece is so important to our well being. And so just picking up the phone and hearing someone's voice of someone I care about and maybe I'm just like venting about all the frustrating things and I'm like, okay, I feel better and then I have this little moment of connection and then I'm left feeling better about my day or the conversation.

I think it's always important to get outside if you can, even as I said, even when you're not feeling well at all, just, can you walk a few steps and just get some fresh air? Often that can just give a little bit change of perspective. Maybe there's certain songs that you love that always kind of boosts your mood. Can you put those on? Can you look at pictures on your phone of good memories and sort of recall some of those easier days? And that gives you the self efficacy to be like, okay, like this has happened before, I can do this again.

And so I think the thing about positive emotions is that when you seek them out, they actually broaden your thinking and then it also can build on that. So when you feel one positive emotion like gratitude, then you might also feel joy, you might also feel awe. You might also feel like this idea that the world is bigger and there's more connection. So they sort of build on each other. And that's what I love about them. Even though they're fleeting, they make a positive change in your life.

**Caleigh (Host):**
Those are really good points. I love this tactic of finding the things that make you happy and leaning on the things that you know when you're sort of confused and you're down and you're just not feeling like yourself. Even maybe. I know in the hospital I am a person who loves to create and loves to paint and color and draw. And there's been many times where I'm like, surprise, you're hospitalized. And I have nothing with me. I have like no clothes, nothing, barely a phone charger. So during those times I definitely have been able to lean on the hospital system to ask for like art supplies.

So for people who are maybe in that position and they're in the hospital and they're like, oh, well, usually I play video games, but I don't have my video game. You know, lean on the people around you, maybe ask for help, ask for resources. Because it's possible possibly that these other people may be able to bring resources to you and it doesn't hurt to ask.

So I think leaning on people is never something to be like shy about or embarrassed about. I do it a lot in my life, especially when I'm down. I sort of lean on my family like you said. Call them, ask how they are. Because I think hearing about the positive things in their life automatically shift my brain to be happy.

So thanks for sharing that because that's like a really, really good tactic that I know I will use going into my future personally and I know I hope other will use it too. You shared with me this method of PERMA. Can you talk about the philosophy behind that a little bit with people? Because it's fascinating and it's another way to sort of find positivity in your life, I would think.

**KC White (CFF Chair of Board of Trustees, CFF Adult Advisory Council Member, Co-Creator of ROSE UP, Asst Instructor at UP, Mental Performance Toughness Coach)**
Yes, absolutely. I love talking about perma. So perma is a structure for the building blocks of well being in your life. And so it stands for.

The P in PERMA stands for positive emotions which we joss talked about and the importance of trying to cultivate them.

The E in PERMA stands for engagement. And engagement is around finding activities where you can get into a state of flow and what that means. I don't know if you've ever. Maybe this happens to you when you're doing your art projects. You get so engaged in the task that you sort of lose sense of time, you sort of lose your self consciousness. Like you're not even really aware of yourself anymore and you sort of get lost in it and you like look up and an hour's past you're like, I feel like I've only been doing this five minutes. But you're just so engaged in an activity and that is so good for your well being is to find activities where you're fully engaged and really fully present. Engagement is also around being fully present to your life, which I admit for me is very hard because I'm always distracted by things around me, especially my phone. But the more I try to just be fully present to what what's going on in my life at that moment, the more engaged I am in activities and it really matters. It helps like calm your central nervous system and just to be where you are.

It's also the idea of like a mindfulness, movement and then meditation, it's really around being fully present to who you are without judgment and that you can allow yourself to. You feel some of your feelings. You don't judge them. You just sort of let them flow through you. And the more you can. It's a practice. This is why mindfulness and meditation is a practice. This is not easy, but the more you do it, the more comfortable you get just being where you are and not judging where you are. And so I really. It's something I want to be better at is the engagement piece.

**Caleigh (Host):**
But I feel like that takes a lot of vulnerability.

**KC White (CFF Chair of Board of Trustees, CFF Adult Advisory Council Member, Co-Creator of ROSE UP, Asst Instructor at UP, Mental Performance Toughness Coach)**
Yeah, it does.

**Caleigh (Host):**
For me it does.

Yeah. But it is very, what do I say? Like, needed. Yeah, like to understand yourself and to understand your feelings. I use writing as a way of expressing myself. That's how I sort of started writing online. Because a lot of what I was going through was always very overwhelming and confusing and I was in a really depressed state in the beginning. And so I think writing was my way to sort of write out what was happening and understand it better, understand others better and understand myself better and my emotions surrounding that. And through that I was able to like seek the positive out of the situation as well. So anyways, side note, we'll go back to PERMA now.

**KC White (CFF Chair of Board of Trustees, CFF Adult Advisory Council Member, Co-Creator of ROSE UP, Asst Instructor at UP, Mental Performance Toughness Coach)**
Well, no, I think that's just so important because you found what works for you.

Like for you, the ability to just get the words on paper and get your thoughts out was essential. For others it may be to talk to someone else. For others, it may be to make like voice memos. Maybe because their writing is not how they want to do it. Maybe it's going outside for a walk. You have to find like, what are the ways that help you cope the best. Because if you find the ways that feel life bringing to you, you will continue to do them right. So that's why you can't be like everyone. Right. Because some people be like, oh, I hate it. It's like, I'm not going to want to do that again. Right. But you found what worked for you. And I think that's so essential.

**Caleigh (Host):**
It's like doing many, many things and maybe the first thing doesn't work, but keep going and you'll find it.

**KC White (CFF Chair of Board of Trustees, CFF Adult Advisory Council Member, Co-Creator of ROSE UP, Asst Instructor at UP, Mental Performance Toughness Coach)**
Yeah. Or you may change your mind. Like, you may say, like, that was part of, like in my twenties I wrote all the time and like now in my 30s, I'm have a different approach. Right. It's okay. It's okay. Like we're always totally falling. Okay. That was, that was a good side note, I'm glad we went there.

Okay, so the R in PERMA is all about relationships and how you connect with with other people. And having those high quality connections is so important to your wellbeing. So the way that you connect with the people you love, but also even connections with people you don't know, those exchanges you have like at a coffee shop with the barista and you're like, how's your day going? And it's like just very quick. It can take like 30 seconds. But even those exchanges are so important to your well being because it sort of reminds you that you're part of a bigger world and a bigger community and you have this commonality with other people. Even if you know nothing about them, you can still smile with each other or have this exchange of positive emotion. And that is really essential to well being. So I remember like in the pandemic, everyone was locked in, but people CF were especially locked in. And it was hard because not only were we locked in. Okay, but we also were missing those connections with strangers that we would see. And we felt even more isolated because we didn't like see the bigger world we were a part of. And so during that time, I really was intentional about making some sort of connection with someone outside of my house every day, whether that was a phone call or a zoom call or maybe if I didn't text message at the bare minimum. Right. Just to remind myself like, there's a bigger world out there and there's people I connect to. So I think connection is so vital to our well being and it doesn't have to be with someone. You know, it can be just a really quick exchange throughout your day. And if you seek it out, it's kind of fun because you can see how other people smile and you sort of leave like just feeling just a little brighter. Right. The world's a little brighter after you have a connection.

**Caleigh (Host):**
I do that in the hospital sometimes if I'm alone and I haven't had a visitor in a day and I feel a little bit more isolated. Like you're saying, I may take an extra moment to sort of strike up a conversation with a nurse or phlebotomist or X ray technician, whatever it is. And it doesn't have to be a deep conversation, but it can sort of like you said, how's your day going? You know, whatever it may be, but it is, it's definitely uplifting.

**KC White (CFF Chair of Board of Trustees, CFF Adult Advisory Council Member, Co-Creator of ROSE UP, Asst Instructor at UP, Mental Performance Toughness Coach)**
Absolutely. I think that's such a good strategy. And as you know, especially in the hospital. Right. It's it can be very isolating. And at least for me, when I'm in the hospital, I feel like all these just thoughts run through my head and I'm like reassessing my life and just all this stuff comes up and like you're thinking about past hospitalizations. Like there's just a lot of emotion around hospitalizations, at least for me, or even home IVs or whatever it is just like changes in my health sort of bring things up. And so during that time I allow those feelings. But I also really intentional about how am I proactively building, well being in my life, how am I experiencing positive emotions, how am I connecting with others, how can I find activities to be engaged in?

**Caleigh (Host):**
It can be a reset sort of. You're stuck in your thoughts and then you sort of distract yourself by talking to somebody else and then your brain resets and all of a sudden you might have a different outlook or your day may shift to something more positive.

That's my experience.

**KC White (CFF Chair of Board of Trustees, CFF Adult Advisory Council Member, Co-Creator of ROSE UP, Asst Instructor at UP, Mental Performance Toughness Coach)**
Yeah, 100%. It's sort of this idea. Have you heard the phrase like fake it till you make it kind of thing?

**Caleigh (Host):**

Yeah.

**KC White (CFF Chair of Board of Trustees, CFF Adult Advisory Council Member, Co-Creator of ROSE UP, Asst Instructor at UP, Mental Performance Toughness Coach)**

And like faking it isn't authentic. Right. That's not going to actually build your well being. But like the faking it piece of it can kind of jump start something and then you may, then you may actually feel it. Right. And then you build from there.

So if you're feeling down or struggling, always reach out for help. Always, Always. But you can also jumpstart your distraction or different approach by striking up a conversation or engaging in an activity that matters to you or that happy song or whatever it is. Just, it doesn't have to be so big. It can just be a little moment. And even for that moment, if you feel a little different, hey, that's a win, you know?

Okay, so the M in PERMA is around meaning. And I think meaning is really important. And it's this idea of where do you find the parts of your life that just sort of bring it all into focus and make you feel like, oh, that really matters to me or I feel like I'm part of something bigger than myself or I feel connected to a greater world. And so everyone experiences meaning in so many different ways. But just being aware of where you find meaning, I think is, is really important. Is it in your work? Is it in your relationships? Is it in your faith? Is it in the woods? Like where is it, like where are the places that, that you find meaning and I'd be interested for you where you have found meaning. In your life?

**Caleigh (Host):**
I think it's mainly surrounding my family and my relationship. So it is a lot about what you've talked about in PERMA so far. Sort of like seeking the positive emotions through my relationships and engaging in the other people to sort of find out what mean, what brings me meaning.

So being sick for so long and being in the hospital, it really caused me to feel sort of not, I wouldn't say outcasted, but just very different than others my age, especially in my late teens and young twenties because everyone was sort of in college, they were partying, they were striving towards a career and I was sort of feeling stuck, like my life was spiraling in a decline rather than growing.

**KC White (CFF Chair of Board of Trustees, CFF Adult Advisory Council Member, Co-Creator of ROSE UP, Asst Instructor at UP, Mental Performance Toughness Coach)**

yep, yep

**Caleigh (Host):**

And so I found meaning through my family because there was, you know, only a handful of people outside my family that really stuck by my side. And so those people to me now I guess I refer to as family as well, because those individuals are key to my life and those are sort of like the relationships that I seek out when I'm down.

So you kind of gave me this idea of like, you know, I need to do that more. I need to strike up a phone call, not just a text, call these people and talk. Because I think during COVID I did get good at it. But now I've sort of slipped into just the day today and especially living in a new country, I'm just constantly trying to learn the language and constantly seeing new things and the days go by really quickly. And I'm good at texting, but I'm not quite as good as at colleague. So I need to bring more meaning to my life by making these calls.

**KC White (CFF Chair of Board of Trustees, CFF Adult Advisory Council Member, Co-Creator of ROSE UP, Asst Instructor at UP, Mental Performance Toughness Coach)**
I believe the relationships you have in your life are a huge source of meaning for people and to invest in that is always important to proactively build your well being. And then the last part of perma, which is a for accomplishment or achievement and that is all about sort of striving for what is important to you. And I think we talked about this at the beginning.

It can be the big goals, of course, but it can also be those really small goals that you set. And every time you accomplish a small win, then you can strive for the next small win. And those definitely add up and create that, yeah, that self efficacy, that belief in your own abilities and that's another really important part of your well being. So celebrate those small wins.

Celebrate when you pick up the phone and you call your friend and have that point of connection and build your meaning like that is an accomplishment and achievement and should be celebrated. Celebrate when you get your treatments done, like, good for you. It's not easy to do that day after day, but when you show up for yourself, that should be celebrated. That's an accomplishment and is part of your well being. And celebrate the bigger moments too. I think we often we'll accomplish something and then we're like, okay, on to the next task. But if you could just give yourself a moment to be like, yes, like, knock that off the list. Like, well done. Here we go. That's just important for your well being. And just we need to celebrate more. We need to savor the good stuff because we know especially living with cf, there's times when it's harder to find. So the more you can celebrate when you have it, I think builds that idea that those wins are always available.

**Caleigh (Host):**
So I believe that perma and the three good things go hand in hand with building resilience. And this is a community member's question. He wants to ask you, “what are some tips for fostering resilience and finding joy amidst the challenges of living with cystic fibrosis, particularly for people living a double life and balancing inpatient and outpatient responsibilities?”.

**KC White (CFF Chair of Board of Trustees, CFF Adult Advisory Council Member, Co-Creator of ROSE UP, Asst Instructor at UP, Mental Performance Toughness Coach)**
That's a really good question. I think before I answer, I'd love to hear from you about that experience of feeling like you're living in two places, inpatient and outpatient, and how, what strategies you turn to and how you felt like you built your own resilience. Because I think if you looked up your name in the dictionary, resilience would be part of that definition for sure.

**Caleigh (Host):**
It's such a complicated question to answer myself because I believe when I was younger it was really difficult. It was sort of the fake it till you make it strategy for me.

I truly did live this like James Bond double life of sort of being in the hospital and totally disappearing for weeks at a time and then coming back to my social life and my outpatient responsibilities and for a while being in denial of the situation.

**KC White (CFF Chair of Board of Trustees, CFF Adult Advisory Council Member, Co-Creator of ROSE UP, Asst Instructor at UP, Mental Performance Toughness Coach)**
Yep.

**Caleigh (Host):**
So I just wasn't honest about it at all, like, of how serious my health was or sort of like what stage in my health I was at. And I sort of at that point hadn't transitioned from the invisible disease to visible. I would like wear oxygen at night, but I didn't have to wear it during the day. So people couldn't really see what was going on. And I was just totally faking it. And I think that the resilience part just came from wanting to be like others. And so I wanted to not necessarily, like, be exactly like others, and be a clone of everybody else. But I just wanted to fit in in the simple manner of not being the person who was sick and not being viewed as that person, but being viewed as an equal.

And so therefore, I sort of just pushed it to the side, faked it till I make it, pretended like it wasn't even a factor in my life. But now I think that, you know, having the support of my family, being married, being older, all of those things play a part into, like, building who I am today and the resilience I have in myself today. And that truly comes from the self confidence and what I've overcome.

**KC White (CFF Chair of Board of Trustees, CFF Adult Advisory Council Member, Co-Creator of ROSE UP, Asst Instructor at UP, Mental Performance Toughness Coach)**
Yeah.

**Caleigh (Host):**
So I sort of just look back on times where people doubted me and said I wasn't going to overcome something, and I did overcome it. And I think about how strong my body was during those times and how strong my mental ability to overcome those hurdles were. While I may be down in the moment, if I look back and think I overcame that, I can overcome this.

That's sort of what I rely on. I know. Like, a weird example is when I was really sick, I had a really, really high pain tolerance, like, so high. Right. I really didn't request anything for pain, like, ever. And last year I went snowboarding for the first time and I hurt my knee. And, you know, it wasn't serious. It did look serious. It swelled up. I couldn't walk, but it wasn't super serious. And I was in a ton of pain. And my husband's like, I understand you're in pain. I feel bad that you're in pain,but look at all the other things that you overcame. When you did your second double lung transplant, your kidneys were failing and you literally couldn't be given anything to help with pain. And you were broken bones, broken chest, broken ribs, and split like your chest was cut open. And you overcame that. So I know you're struggling right now, but think about that. You'll get over it sort of thing. And it's like a little bit of tough love.

But I think it did help me because I was like, okay, wait, let me reset. I cannot be as much of a baby as I want to be about this. And let me think about all the strategies I used back then to survive this. And I will survive it. I will move on. I will move past it.

**KC White (CFF Chair of Board of Trustees, CFF Adult Advisory Council Member, Co-Creator of ROSE UP, Asst Instructor at UP, Mental Performance Toughness Coach):**
I think that's actually a great example, and I think you're welcome to stay in that place of complaining. Right. Like, you can. But did that really serve you in the best way in that moment? Right. Your ability to reframe the situation probably helped you move forward a bit. And I think that's a big piece of resilience. We talked a lot about all of the aspects of PERMA. All help build resilience.

But the other aspect is around this reframing. And there's so many circumstances in your life that you don't have control over, especially living with cf, right? You can do everything. Right? You can do every treatment you're supposed to do, and you can still get sick. Right. And still end up needing more treatments. And that can be very frustrating. And just I think that's where I sometimes feel the most defeated, where I'm like, I'm doing everything I know how to do. Like, and yet, like, here I am in this situation, and so it's easy to sort of go on that path of like, well, I guess none of it matters, because it doesn't. No matter what I do, like, I'm still going to end up here. But that type of thinking doesn't serve you. And in those moments, don't really have all the control I want over my health. Like, I always have the ability to try to control my mindset and reframe how I'm thinking.

And so one question that's been really helpful for me to ask in those moments is to say, okay, well, what else is true? So it is true that I'm doing everything I know how to do, and yet here I am again. That is true. But what else is true? Well, what else is true is I have a doctor who's on it and trying to figure out the next steps. I have the support of my family. I have been through hard things before, and I've gotten to the other side. And so just to name what else is true, that simple question has been really helpful to me. And then all of a sudden, I'm sort of like, okay, I have some things with me that I can turn to. And I think that's a huge aspect of resilience is your mindset. And that question of what else is true has been incredibly important for me.

**Caleigh (Host):**
That's very, very well put. And I love that. I absolutely love that. Can you sort of help, or aid, in sharing how you believe healthcare providers can support in mental health for CF patients?

**KC White (CFF Chair of Board of Trustees, CFF Adult Advisory Council Member, Co-Creator of ROSE UP, Asst Instructor at UP, Mental Performance Toughness Coach):**
Yeah, absolutely. I mean, I. First of all, I'm so grateful for all the mental health, physical health, all of our care team members at CF care centers, and I'm sure you would say the same about your transplant team as well. In cf, it takes, I always say, it takes a lot of people to keep me going, and so I'm grateful to have so many experts around me that I can turn to.

I think it's same with sort of anything. It's that connection piece that matters. And so I know our care center appointments are long, and we're trying to get through a million things, but just taking that moment to connect on a personal level, I think really, truly matters. And it builds this sense of trust. And for your care team members to be interested in more than just your health, like, “how's your family doing?” “Or what have you been up to?” or just to have a full picture. And I try to ask similar questions of my care team members so that we actually form a little bit of a relationship of mutual respect and trust, I think matters a lot.

I think having hope on the care team side is really important, too. There's been studies that have shown that doctors who have higher levels of hope are able to have sort of better alliances, therapeutic alliances with their patients. And I've definitely had times where my hope was fading, but my care team member has said, “hey, like, I think you're going to get through this, so I'm going to hold this hope for you”. And just to be in that partnership with them is actually such a relief because sometimes I'm like, oh, like, I just. I don't want to be hopeful right now. Like, I'm just in this dark place, you know? She's like, that's okay. Like, feel this. Yeah, yeah. She's like, that's okay. Like, you be there. It's here waiting for you.

And I say that all the time to friends who are struggling with the effort. Otherwise, hey, I'll hold this for you. I'll hold this hope for you till you're ready to take it. But it's here for you. It's not out of reach.

So I think that, you know, care team members play such an important role in our lives, and my advice would be, like, the human aspect, to make those connections and be able to cultivate hope. And also know if you don't know the answer, that's okay. Just say, hey, I'm gonna get

**Caleigh (Host):**

100%.

**KC White (CFF Chair of Board of Trustees, CFF Adult Advisory Council Member, Co-Creator of ROSE UP, Asst Instructor at UP, Mental Performance Toughness Coach):**

Let me research this. This is a new one for me. Or I've never seen this side effect before. Let me do some research and figure out what to do next. I think I always appreciate that, too, because it's a complex disease and it affects people very different ways. And so I think it's always good for them to reach out for help, too.

**Caleigh (Host):**
100%. I agree completely with everything you said. I think that I've had doctors that I absolutely don't connect with because they don't take the time to look at me as a human being, but they rather look at me as a statistic, or they see me as a challenge and they want to conquer it and succeed, or they see me as a challenge that they don't want to take the time to invest in.

And I easily see through both of those. I think patients see through that very quickly. But when we have a doctor that asks us a question. I had a doctor. I've actually said this before on the podcast, but if you're a new listener and KC, you've never heard me say this, probably, but I had a doctor who asked me the question post transplant of ,“what are your goals now you have new lungs, you're on a good trajectory. We're kind of out of this critical point. What are your goals in life?”.

And that was following my question of now, what. What's next? How often do I need to come in? I was so calculated in everything that I was doing, and I was always used to going to clinic multiple times a week and having my blood all this time and like, blah, blah, blah, blah, blah, without a life outside of my medical world, because my life was my medical survival. And he's like, well, “What do you want to do? What are your goals? I'm going to treat you in a way that we succeed at those goals”. Yeah. It just made me feel understood. It made me feel seen. It made me feel like an individual that he really cared in as a person, and it made our relationship flourish even more than it already had. So it was great.

I have one last question for you, and then I'm going to let you go. Do you have any advice for patients and families fighting cystic fibrosis?

**KC White (CFF Chair of Board of Trustees, CFF Adult Advisory Council Member, Co-Creator of ROSE UP, Asst Instructor at UP, Mental Performance Toughness Coach):**
Just in general?

**Caleigh (Host):**
Yeah, just like, how to stay positive. Anything that helped you. I mean, you've shared so much, but anything outside of what you've already said.

**KC White (CFF Chair of Board of Trustees, CFF Adult Advisory Council Member, Co-Creator of ROSE UP, Asst Instructor at UP, Mental Performance Toughness Coach):**
I mean, I have so much advice. Right. I've shared a lot of it already, but I think that just it's okay to be where you are. And, you know, not everyone has this the same path and not everyone has the same mindset. You really have to think about, like, just exactly what your doctor asked you, like, what do you want for your life? And just when you have those goals or you have those ideas of what you want, and then you can start making steps towards them. I think is. Is really powerful and very personal and so the advice I would say is maybe going back to my grandfather is like, thou shall go for it. Like, go for your life, whatever that looks like for you. Find out what it is that makes your heart sing or your world bigger and brighter and pursue that. And even if that feels far away in the moment, like every small step you take towards that is really important.

There's actually an exercise called the Best Self Exercise where you think about if your life turned out exactly, exactly how you'd want it, like, everything fell into place five years from now, like, what would that look like? And just even picturing that and writing that down actually cultivates hope and optimism. And so you can write that best self exercise, like, what is if everything went well, what would my life look like? And then in the present moment, you can say, well, what can I do today to start building towards that best life? And I think that is such an important thing to dream a little bit, Go for it and dream big for yourself. Because, hey, we get one shot at this. And so even with the challenges of CF there, you should have an expectation to flourish and to make a meaningful life for yourself.

**Caleigh (Host):**
Thank you for being on the podcast and I really, really appreciated you being here at the. Always a pleasure to speak to you and I can't wait till we can just get together in the future.

**KC White (CFF Chair of Board of Trustees, CFF Adult Advisory Council Member, Co-Creator of ROSE UP, Asst Instructor at UP, Mental Performance Toughness Coach):**
Absolutely. Thank you so much for having me and for hosting this podcast and just so grateful to know you and to be continued.

**Caleigh (Host):**
Have a great day.

**KC White (CFF Chair of Board of Trustees, CFF Adult Advisory Council Member, Co-Creator of ROSE UP, Asst Instructor at UP, Mental Performance Toughness Coach):**

Thanks. Bye.

Bye. As we wrap up today's episode, I want to convince Connect directly to you, our listeners. Your involvement, your stories and your support are what make the Our Fight to Breathe podcast a source of inspiration and change within the cystic fibrosis community. We believe every story holds the potential to inspire and drive change. Whether you're living with cf, a caregiver, a medical professional, or a supporter, we want to hear from you. Share your experiences with us on social media using the tag @Fight2Breathe. or email us at [caleigh@fight2breathe.org] your stories provide comfort, offer valuable insights and bolster advocacy and awareness to get involved. Follow us on social media @fight2breathe and share our episodes with your friends and family. Engage with us through contact, comments, questions and discussions. Advocate for better treatments, support systems and awareness by partnering with us in campaigns and initiatives. Reach out to others in the community, offer your support and build meaningful connections. Together, we can create a powerful network that uplifts and empowers everyone.

Every action, no matter how small, contributes to the strength and resilience of our community. By engaging and sharing, you're helping to foster a sense of belonging and hope for all those affected by cystic fibrosis. Together, we can unite, inspire and empower each other to face the challenges ahead with courage and confidence. Thank you for being part of the Our Fight to Breathe podcast.

Let's continue this journey one story at a time.

And a heartfelt thank you to the Cystic Fibrosis Foundation's IMPACT Grant for support supporting this podcast.