March 19, 2025
Cindy Lopez: Welcome. My name is Cindy Lopez, the host of this CHC podcast, Voices of Compassion. We hope you find a little courage, feel connected and experience compassion every time you listen.
Living with a chronic illness isn’t just about medical care, it’s about daily management, because there’s not a cure. In this episode, we talk with CHC experts Dr. Tracy Cavaligos, licensed psychologist, and Caroline Gillenson, clinical psychology doctoral intern, as we explore the deep connection between chronic illness and mental health, from the emotional toll of ongoing symptoms to the impact on friendships, social life, and academics. How do young people navigate these challenges while maintaining their well-being? Join us as we discuss strategies for coping, building support systems, and fostering resilience in the face of chronic health conditions.
Welcome, Tracy and Caroline. I’d love it if you could take a minute to tell our listeners a little bit more about yourselves.
Tracy Cavaligos, PsyD: I’m Dr. Tracy Cavaligos, but everyone on here will refer to me as Tracy, which is totally good. I’m a clinical psychologist at CHC. I specialize in working with youth with chronic illnesses, and prior to my time at CHC, I actually trained as a pediatric psychologist at many different hospitals across this country, so lovely experiences. I’m really passionate about this area and serving youth.
Caroline Gillenson, MS: Hi, I’m Caroline Gillenson. I am a clinical child psychology doctoral intern at CHC and also Stanford, and I’m getting my PhD in clinical psychology from Florida International University in Miami. I’ve also worked with children and adolescents with chronic illnesses in all of my training, both in outpatient settings and working with children in children’s hospitals and have really valued this work.
Cindy Lopez: Well, thank you so much for joining us today, both of you. As we think about this topic around chronic illness and mental health, let’s start by defining what we mean when we talk about chronic illness so all of our listeners have context around that.
Tracy Cavaligos, PsyD: Typically when we’re thinking about illness, they’re going to fall into two categories. So we’re going to have an acute illness or a chronic illness. With an acute illness, it may be something you would think of like a cold. It could start pretty quickly, and there’s usually like one cause, and you’re going to get that diagnosis pretty fast with some decisive tests. They’re also going to have like a short time where you’re probably feeling sick and then your symptoms are going to resolve or you’ll start feeling better.
For chronic illnesses, it’s going to be a little different. Things may start slower or kind of like gradually increase over time and how intense things feel and how it impacts your day-to-day or how you’re feeling. There could be many causes, so it might not just be one thing. And there’s not really a defined time frame for symptoms to stop. So some stuff can last throughout your lifetime or last indefinitely. And we usually say someone is experiencing a chronic illness if symptoms last about like three months or more.
Also, an important distinction is diagnoses can usually be uncertain or it might take years to even get or understand what this means. And like I said previously, those goals are going to be less around a cure and more around symptom management. So like, how can we cope or feel better throughout while the year is lasting indefinitely versus things ending and changing. Different diagnoses or like examples that we think of with chronic illnesses are things like diabetes, arthritis, gastrointestinal concerns. Things like IBS or Crohn’s or colitis, cancer, congenital heart disease, and asthma to name a few, but we could go on and on and on.
You might be wondering too, like, well how often does this happen, especially to kids. We don’t really think of chronic illnesses in our younger kiddos, but it’s actually very, very common in the U.S. About 6 in 10 adults in the U.S. are having a chronic illness. And about 2 in 5 children and adolescents will have a chronic illness in the U.S. Also important to note is these numbers are really increasing, especially with our ongoing COVID pandemic. And it’s estimated that about 80 percent of people are gonna have a disability at some point in their own life. So it’s really far-reaching and important to know, for all of us to hear about chronic illnesses.
Cindy Lopez: And Tracy, when you say about 80 percent of people will have a disability at some point, I’m thinking about the term disability and how that relates to chronic illness – are they interchangeable?
Tracy Cavaligos, PsyD: Yeah, they can be interchangeable. I think throughout this podcast, we’ll probably most often be talking about chronic illness, because that can maybe be like a smaller section underneath the wider umbrella, where disability might be that larger term, where we’re covering lots of different aspects, and chronic illness can fit underneath that umbrella term like a smaller section or description of it, but yeah, great clarification.
Cindy Lopez: Thank you. As you were describing it, chronic illness is about really management versus cure, right. And it sounds like it’s probably a lifelong thing, which is not easy to hear depending on the intensity of it, and it ebbs and flows.
So let’s talk about that for a minute. That sounds hard: dealing with chronic illness and managing that when it goes on indefinitely and there is no cure, like talk about coping with that chronic illness.
Caroline Gillenson, MS: Yeah, it’s a really important question, and many children and adolescents with chronic illnesses face lots of different kinds of challenges in their daily lives. It can have impacts on their mental health, their social well-being, their school and academics and their cognitive development, and I can speak a bit more to each of those. So thinking about their mental health, the mental health of children and adolescents with chronic illnesses, it’s often impacted by stress related to the illness or hospitalization, which is really interfering with the child’s daily life. So that stress can be related to managing symptoms, experiencing pain, fears associated with the illness, or even difficulty following really complex medical regimens and treatments. Also thinking about mental illness, children and adolescents also commonly experience symptoms related to anxiety, depression, or behavioral challenges too. So this could look like a child who’s having more tantrums because they don’t want to take their medications or who’s getting into arguments with parents about specific foods they can and cannot eat, for example. Also a child or teen who’s more anxious or sad may be avoiding going to school or hanging out with friends. And it’s also pretty common for children with chronic illnesses to have had some major trauma related to their medical treatment, whether it’s a scary procedure or so many needle pokes that they’re scared to have another one or other kinds of changes due to their illness. So these kids may experience post traumatic stress symptoms, and that could be anything from a flashback to a medical event to always being on high alert of not feeling well, or even negative thoughts about themselves.
And another aspect of development that’s often impacted is friendships and social relationships. I’ve worked with many children with medical conditions who experience social withdrawal and loneliness related to kind of feeling different than their peers or feeling that others won’t understand what they’re going through. They may even feel that if peers know about their condition, they would be treated differently and because of hospitalizations and frequent medical visits or even symptoms limiting their participation in school and activities, kids may have less opportunity to just participate in developmentally typical social interactions.
Tracy Cavaligos, PsyD: These impacts can kind of seem hard to pinpoint, but an example might be, so let’s say a kid who’s having a gastrointestinal concern, so maybe there’s stomach pain or urgency to use the bathroom or extended time in the bathroom for their needs, and they’re thinking about going to hang out with their friends. That then comes in with a lot of different questions and planning and maybe stress around just like, going to spend time with someone. And we’ve all been teenagers before, and if you’re listening to this, you’re probably not a teenager, but we can all remember, like, how important our friends are and like what they think about us is so now let’s take that and also add in, okay so where am I going with my friends? How long are we gonna be out? When are we gonna get there? Are there gonna be bathrooms there? What happens if I have to go to the bathroom or if I am starting to not feel good? What are my friends going to think if I’m, like, spending a long time in the bathroom? All of those things are going to go into just, like, a typical time to hang out with someone. So there’s a lot of added pressure and emotional labor that’s going in, and worry, for just a small interaction.
Caroline Gillenson, MS: Yeah, that kind of thing comes up a lot. And also, another area that we see that’s often impacted is academics and learning. So having to miss school due to an illness like getting sick or being in pain or even frequent doctor’s appointments, hospitalizations that can lead to dropping in grades, not being able to be learning the material at the same rate, or like even having to work harder to make up work. It can also require additional support like tutoring to maintain academic levels, and children and teens may also have more difficulty focusing and learning while they’re actually at school. So schools can provide support to these children, but this typically requires a lot of advocating from parents in order to get accommodations for their child.
And another area we see that’s often impacted is how children feel about their identities and how they view themselves, and how they feel their body works and what it can and cannot do, and that can often really impact their self-esteem and their mental health in general, too. I know I’ve been talking about a lot of really negative things, and these are all unfortunately the reality of a lot of children with chronic illnesses, but on a more positive note being a child with a chronic illness can also lead to a lot of resilience through having a more positive self-view or gratitude for parts of life that are often taken for granted. And children and families often find comfort in shared identities and connecting with communities, with others with disabilities or chronic illnesses too.
Tracy Cavaligos, PsyD: So not all doom and gloom.
Cindy Lopez: And it’s interesting because as you say that, I think the parent or caregiver’s response to the child’s illness is an important piece of how the child responds. I’m guessing if it’s doom and gloom for the parents, the child is going to also feel that same way. They’re seeing that from their parents and that’s being kind of modeled for them. So that idea of being able to experience this chronic illness and being resilient at the same time. I think that’s probably an important point for our listeners to hear because I think you as parents and caregivers can also model that resilience and that’s kind of contagious with your kids. So speaking of that, what do you think caregivers really need to know as they care for their kids with chronic illness?
Tracy Cavaligos, PsyD: We’ll definitely touch on the modeling aspect again, which, if you’ve listened to any of our podcasts, regardless of emotions or stressful situations, that’s one of our biggest roles as caregivers is that modeling ability, but having a child with a chronic illness, like does not just impact the child. So we touched a lot on how it can impact that child or teen, but it really impacts their whole world. So we’re talking about like, parents and siblings, extended family, school, friends, extracurriculars, like we could continue the list going on and on. And if we think about all of those different aspects for parents, there’s time management, you’re going to these medical appointments or these hospitalizations. You’re trying to navigate the medical system in the United States, which is very complicated and requires a lot of extra work and understanding and advocacy. On that day to day, you might be managing like medications, refills, administering medications to your kid and there’s even time away from like siblings or other family members and their needs and activities during those possible flares or hospitalizations where your child may require some more time, not to mention like there’s the time off of work or not being able to work because of the needs to go to appointments or have those care appointments and time with your child who’s not feeling well. And so, like, all of these things are really impacting that whole family system. And to kind of pull it back a little bit to what we were talking about earlier is, like, coming away from this podcast, we would really love for caregivers to take away that they’re not alone, and that accessing supports for themselves, for siblings, for the child and teen with a chronic illness. And hopefully like reduce some of those impacts of those stressors and help them all to flourish and really build that resiliency and coping style.
So, I’m going to throw it back to what Cindy said earlier because you covered it so wonderfully, but it really is this opportunity for modeling. Not only just like coping with a chronic illness, but we can even think of how do we handle stress? How do we handle our emotions? And our kids are taking all of that in like a sponge. So we may say one thing, but then when we’re feeling upset or we’re feeling in pain, if we’re kind of flying off the handle, our kids are going to take that. And that comes into how they’re handling pain, how they’re viewing themselves, how they’re viewing their illness, how they’re viewing that disability. So there’s all these different opportunities that we have for change and influence as caregivers, even something simple as just like, how they ask for help, or their curiosity in accessing resources or supports. All of these are very, very impactful, and lessons that our kids are picking up, even if we’re not saying anything.
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Cindy Lopez: And as you both are talking, lots of really good advice and guidance for our listeners around supporting kids with chronic illness. I’m wondering, there might be some of our listeners whose child might have just been diagnosed with a chronic illness, and I’m wondering if you have any words of advice for them.
Tracy Cavaligos, PsyD: Yeah, definitely. And, similar to that identity, this is a process. So, if you just got diagnosed, you’ve had a diagnosis for years, you’re in that process, it’s all a marathon and not a sprint. You don’t have to have everything figured out right away, especially, you might have that urge of okay, I just got diagnosis, I need to know everything, I gotta be an expert, we gotta have this regimen figured out. It’s okay. There are going to be times where needs change, especially throughout life and development. You know, like, we’re not gonna expect a six year old to manage their medication or illness the same way that we might expect a sixteen year old. That’s all going to change, and it’s okay.
Caroline Gillenson, MS: Yeah. And one thing I’ve seen in my experience with many families is that they’re often scared to share diagnoses with their children. They may not want their child to feel different than others or to worry about their future and what it means to be diagnosed with an illness, and these are really understandable concerns. And there are also developmentally appropriate ways to explain diagnoses to children of all different ages and really help them to understand how their body is functioning and what it needs. And when parents are not talking about these things at developmentally appropriate levels, it can often lead to more worry for the child. They might be wondering what it is that their parents are talking about and thinking it could even be something worse than it actually is. So if you have questions about words to use or how to explain diagnoses to children of different ages, it can definitely be a topic that you bring up with the medical team or mental health supports.
Caregivers also often wonder kind of what to look out for and when to connect with mental health providers. So there are many different kinds of warning signs. Some that we often think of in terms of when to seek mental health supports are when a child is constantly worrying about what’s happening to them or what will happen to them in the future or if a child is avoiding things they previously enjoyed, just like the example that Tracy shared earlier about a child who isn’t wanting to hang out with friends or is worrying a lot about what that would be like and is kind of avoiding it because of their chronic illness, that’s a really common situation that we see. And some other concerns are when a child is avoiding things or places that remind them of the illness, or if they’re acting out in school or complaining of headaches or stomach aches that aren’t related to the illness. Even things like fighting with peers, dropping in grades, fear or stress around medications or needle pokes or doctor’s appointments. We sometimes see changes in sleep or kids blaming themselves for the illness, or even feelings of hopelessness. And these are all really common reasons that children often are seen by a mental health provider.
Cindy Lopez: Yeah, I can imagine that as children, teens are going through this, that they’re being impacted emotionally, socially, you’ve already explained, you’ve already described a lot of those kinds of things. And there will probably come a point because of the nature of chronic illnesses and that it’s about management and that it’s indefinite in terms of time. I think it’s likely that you probably want to access some support for yourself and/or for your child. As we think about that, what are some mental health supports for those who are dealing with chronic illness and some coping strategies maybe for caregivers of kids with chronic illness?
Tracy Cavaligos, PsyD: So one of the biggest things is–we were saying a little bit earlier–is really like talking with your kids, being sure to have that open communication, knowing that they can come to you and share what’s going on and that you’re aware of what’s happening. So like have check-ins, they don’t need to be a big sit down ordeal like they can be a more routine kind of casual conversation, and also like validating their experiences. This is a lot that they’re going through, you know, you’re feeling it as an adult with all of your own biological and cognitive abilities that have matured over your life. They have some different resources in their younger ages, and it’s really all encompassing like we talked about, so making sure you’re validating, and you can always check out our other podcast on validation, because we don’t have the time to get into that today, but it’s a tough skill, so we really recommend practicing and kind of following up on that one, but it’s such a big one to let your child know, they’re seen, they’re heard, and they’re understood by their caregivers. It’s such a safe place.
Also, there’s lots of other options for mental health providers who specialize in working with children and teens with chronic illnesses, as well as across the lifespan. So, they may be called behavioral health specialists, pediatric psychologists, chronic illness specialists. We love to have a billion different names for the same thing in our medical system. So those might flag up like, oh, these are trained professionals who can provide support. So that’ll really be helpful. One avenue is if you are connected with a medical clinic already, you might be able to have some of those providers, such as like your oncology clinics or your gastroenterology clinics, have in house support supports for mental health, they may be able to come to your next outpatient appointment or even like an infusion appointment, for example, so you can kind of like double up a little bit or have some of those outpatient services if you want more of the weekly support. So we always recommend first check in with your medical clinic, see if they have those providers available. And even if they don’t, they’re going to be able to provide you referrals for those mental health providers such as Caroline and myself who provide specialized care for chronic illnesses in the community.
Cindy Lopez: So Tracy, thank you so much for that and as you mentioned, for our listeners, we have other voices of compassion podcast episodes that might be helpful for you. There is one on validation. There are others on talking with your kids about mental health, communicating with curiosity and compassion, all of those kinds of things. So please feel free to take a look at past episodes to see if they might be helpful to you. And as we wrap up our time, thank you Tracy and Caroline for sharing your insights and your expertise with us. I’m wondering if there are any final words or takeaways you really want to make sure our listeners hear today.
Caroline Gillenson, MS: I think living with a chronic illness builds tremendous resilience. It can often lead to learning how to cope with really hard things early on in life, which is both, you know, a challenge and can be helpful in many ways. Another thing I think that’s really important to keep in mind is that it’s just one part of a child’s identity.
Tracy Cavaligos, PsyD: And it can be complicated. You know, you’ve heard a lot today that can be really stressful, and it’s okay to feel stressed or feel any emotions coming up around it. Also knowing you’re not alone. There are support networks out here, such as CHC, you can always reach out and hopefully we can all help out and build that community.
Cindy Lopez: Thank you so much, Tracy and Caroline, for being with us today. And to our listeners, thank you for joining us. We are here at Children’s Health Council, at CHC, ready to help. You can see people like Tracy and Caroline. Please reach out to our care team, you can email them at careteam@chconline.org, or you can call us at 650-688-3625. Thank you again for joining us.
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