Dr. Kate (00:00):

Every parent just wants their child to grow up into the person they want to be and have the best life that they can as that person. And if your child has a medical illness, then my goal as a mental health professional is to help you trade that responsibility in a scaffolded way over time.

Dr. Sarah (00:25):

Time navigating childhood chronic illness can feel like an endless maze between getting a diagnosis, managing symptoms, and supporting your child emotionally. The journey is often overwhelming. In this episode, psychologist Dr. Kate Herts shares her personal experience growing up as a sick kid and how chronic illness can show up in unexpected ways like school refusal anxiety and even fevers. We dive into the challenges that families face from the emotional toll of waiting for answers to the fine line between protection and overprotection. Dr. Herts offers insight into how to involve your child’s pediatrician, how to foster resilience without minimizing their experience and why community and social connections are essential for both kids and parents. Plus, we discuss very practical strategies like how do you help your child take ownership of their care? When should you push them to participate and when should you step back? How do you separate medical symptoms from anxiety? And so whether you’re in the midst of the diagnostic process or navigating life post-diagnosis, this conversation is filled with guidance that’s going to help you and your child move forward with confidence.

(01:37):

Hi, I’m Dr. Sarah Bren, a clinical psychologist and mom of two. In this podcast, I’ve taken all of my clinical experience, current research on brain science and child psychology, and the insights I’ve gained on my own parenting journey and distilled everything down into easy to understand and actionable parenting insights. So you can tune out the noise and tune into your own authentic parenting voice with confidence and calm. This is Securely Attached.

(02:06):

Hello. Welcome back to the Securely Attached podcast. We have Dr. Kate Herts with us today. Thank you so much for coming on the show.

Dr. Kate (02:18):

Thank you so much for having me. I’m really excited to be here.

Dr. Sarah (02:23):

I’m really excited you’re here. I feel like you are the perfect person to speak to this, and it’s an episode we’ve been wanting to do for a really long time because I just think that there really is a lot of families who are navigating chronic medical issues, whether it’s from the parents or the kids and all of this stuff. So for all of our listeners, can you let talk a little bit about how you came to specialize in this area?

Dr. Kate (02:52):

Sure, absolutely. So I actually was diagnosed with ulcerative colitis when I was nine years old, and that is an autoimmune disease where basically my immune system attacks my digestive system, specifically my colon. So I was a sick kid myself growing up. I went to camp for kids with Crohn’s and Colitis was a counselor there and really became interested in becoming a psychologist to help families and kids and parents with chronic illness. As an undergraduate I went to Brown and there I joined a mentoring program where college students with chronic illness got to mentor teenagers with chronic illness in the community. And it was just a wonderful experience through there. I really then decided I wanted to do that work forever. So here we are.

Dr. Sarah (03:42):

That’s amazing. I mean, I think the fact that you have such a personal experience with it is probably really clearly informs your desire to do this work, but I imagine it also helps when you are working with families to really be able to know what it is like to go through it.

Dr. Kate (04:00):

Oh, absolutely. I will definitely tell the clients that I work with, normally I’m talking to parents first. I particularly work with teenagers in high school all the way up through college and adulthood. And often parents will come to me and say, Hey, I heard you specialize in this. My child is just missing a lot of school. I don’t know what to do. My child seems really down. They really hate going to the doctor. They need to be taking these medicines and they don’t want to. They’re adherent. It’s like a fight every morning or they’re really scared all the time and don’t want to be away from mom, and they’re just very worried about their child’s future, which I can completely understand. And what I usually say to them is when I got sick, I never, I was eight years old and I hated getting blood work done and I didn’t know how to swallow pills. And I really can understand from your kid’s side how crazy and difficult it is, but also from your side. And I want you to just know that your kid’s going to be okay. And really my goal for our work together is to help you and your child live a big, full fulfilling life because I unequivocally believe that it’s possible and sort of have seen it at this point, not just myself, but through many, many years working with patients who have all kinds of different medical challenges, anything from sickle cell, cystic fibrosis, type one diabetes, which I was recently diagnosed with Crohn’s colitis and now I’m seeing a lot of pots, which is an acronym for a dysautonomia where people will faint or kids will have kidney function off be very thirsty, heart rate will be up. So I feel like especially post covid, there’s been a big increase in general malaise and pots is a serious diagnosis, but people often don’t know what it is and kids don’t know how to communicate it, right. So they might present to us as psychologists as, oh, they’re having school refusal or they’re really anxiously attached to mom. And the classic, I have a tummy ache, I want to stay home from school, doesn’t trigger mom always to say, oh, there’s something going on here.

Dr. Sarah (06:26):

Yeah, no, that’s really interesting. And I think I have a practice, we work with a lot of kids, we work with a lot of parents and I’m always very mindful of the ways that health issues and sleep issues. We did a really, really amazing episode with a sleep specialist who’s like an triple board certified MD pediatrician who specializes in sleep. And we were telling all the ways that sleep interruptions can really mass overlap with A DHD symptoms. We should put a link to that in the show notes. It was very interesting and not so dissimilar to what we’re talking about, which is there are ways in which chronic medical symptoms or conditions can overlap the presentation or could maybe look like other things like anxiety or…

Dr. Kate (07:20):

Absolutely. And if your kid is, so it’s different if your kid has asthma from very early age. Maybe two can be diagnosed with asthma, maybe even younger versus sickle cell that you’re born with and you figure out there’s some illnesses that you figure out very early in childhood through genetics and they just show up and what they are. But I think especially for little girls who tend to be more internalizing anyway.

Dr. Sarah (07:48):

Interesting.

Dr. Kate (07:49):

If they start to have become quieter or withdraw or if they loved school and now they don’t want to go to school and if they’re complaining of physical complaints, a big problem that I’ve seen in my practice as we get towards the teenage years is that those kids are more likely to end up in my office diagnosed with an anxiety problem, and nine times out of 10 if they find me it’s because they’ve gotten a medical diagnosis, but a lot of their distress as a teenager or a young adult is because it took years to get to that. And a lot of thinking that I just am totally crazy, am I making this up? How do I understand this? And I think that parents’ validation of kids’ physical symptoms is really important. You don’t want to promote school refusal, obviously. You don’t want to promote anxious attachment to mom, not wanting to go to sleepovers or go to playgroup, things like that. But you have to hold that with just keeping an ear open. Is this normal for my child? Is this an abrupt change? Is this overlapping with something like a sleep disturbance or not wanting to eat or more symptoms that could be more physically oriented fevers?

Dr. Sarah (09:19):

Yeah, because the other thing I was curious about, right, because there’s a bi-directional feedback loop. So if a kid has, I imagine it’s like you were saying as they get older, it could become more like, well, just the lack of treating the medical condition for so long has kind of crystallized in this anxiety disorder that might actually never have developed should…

Dr. Kate (09:48):

Absolutely.

Dr. Sarah (09:49):

Everything had gotten caught earlier, which sometimes we just miss these things and it’s nobody’s fault. But I’m thinking for younger kids, instead of it actually being like this is a true anxiety disorder that’s come out of an environmental mismatch in us validating they’re actually true experience and treating it. But for little kids, I think when they don’t feel well and they can’t necessarily put their words to that, it can really come out and actually be expressed as behavioral dysregulation, as anxiety, as nervousness, as like cleanliness. Absolutely. So how do you help parents parse that out?

Dr. Kate (10:33):

Yeah, so I am a big proponent of check everything out medically. So I will have parents of an 11-year-old come to my office and say, okay, he’s been complaining of stomach aches for three years. It’s just his anxiety. And I’ll say, it might be just his anxiety, will you do me a favor and have the PCP, clue the PCP in, talk to the pediatrician and say, Hey, I think this is anxiety, but now it’s been going on for a long time. Is there any blood work we should do? Is there anything just to make sure we’re okay? And similarly, I will have, when it’s a very young child, I really believe that parents know their children. And you’ll know if your kid is just a kid who always has been clingy and always has had a little more trouble going to school or gets nervous if it’s like a day they have to have their special day or your kid. And so I really encourage parents to look for changes. So if that is new behavior and you’re three and you went to daycare at 10 months old with no problem, Ciara, mom and dad, that is something that we look at and say, okay, if we have this marked change, I always encourage just letting the pediatrician know.

(12:03):

Because even if it is just, I do air quotes, I think anxiety is really serious and difficult, but even if it’s mental health, it’s still good for the pediatrician to know because that might inform how they talk to your child about immunizations. It might inform how they talk to them about taking a multi of things like that.

Dr. Sarah (12:27):

And so I imagine, so this, I’m sure there’s a, sounds like there’s a cohort of people who come to you with this ambiguous stuff and they’re like, what is it? Is it this, is it medical? Is it emotional? Is it a combo? But I also imagine people come specifically to you because they have gotten a diagnosis or they have been navigating a chronic medical diagnosis for a while with their kids, and that’s a very challenging path to walk as a parent. I mean obviously it’s a challenging path to walk as the kid, but the parent, can you talk a little bit about how parents they understand this, what you have found to be helpful in grounding parents and helping them feel hopeful but also agent full?

Dr. Kate (13:17):

Absolutely. And so I think with younger kids and even pre-teens, teenagers who are still in grade school, it’s really important not to overly limit them because they are really wrapped up in their day-to-day life. They’re not thinking about when they’re 45 what impact will have on me. They’re thinking about what did my friends say at school and what am I going to have for lunch? And those are the important things to them. And you might have a doctor say, okay, so your child really needs more rest or needs more sleep or needs to have this specific food schedule. And that’s all great and you should always do everything medical. But what I see a lot is parents overly responding to the illness in a way that actually limits the kid more than they need to be. And so for example, I can give my own example, which is that I was very, very sick from age nine to 14 and I actually dropped out of ninth grade and I did that because I was so sick I could not go to school, I just couldn’t walk upstairs. I was really terribly ill and I ended up having major surgery going back for 10th grade. But I think that’s parents’ fear a lot is if I don’t really control this when they’re young, then it’s going to really mess up their future.

(14:45):

And I think that kids develop their idea of who they can be by the ideas we give them, right? So if we say you’re going to go to community college and live at home and you’ll always need us, we’ll always support you. Those are messages. Kids actually get really young and I think that even by fourth grade, fifth grade, sixth grade, kids are taking in those messages of who they’re going to be. And so I missed ninth grade, went to 10th grade, and obviously have my PhD and I’m working and have a full life that I’m really happy with. And I think that part of that is because so much changes in medicine over time. So in the 30 years that I’ve dealt with some chronic illness diagnosis, there have been treatments that didn’t even exist when I was a kid. And so I think for parents, they tend to jump to the future in their worry. And so bringing it back to how do I help my kid have a good life right now where they’re taking care of themselves and they’re not worried about junior year SATs, if they’re 10, how this might be a totally different picture by the time they’re there.

Dr. Sarah (16:01):

Which I think I could see that being a very reassuring thing. I feel like parents of kids who are navigating chronic medical illnesses need some real self-talk, really need to be noticing what they’re saying to themselves, what they may be indirectly communicating to their kids, what they might be explicitly communicating to their kids. But in order to do that, we really have to, to notice our self-talk, we have to notice what we might be projecting onto them. And if we can notice self-talk or sort of just an internal narrative of very, very fear-based thoughts and maybe catastrophic thinking that one example of like, okay, there are going to be new medical things that are going to evolve between now and when my child’s growing up fully grown. And so I don’t know that this is what the landscape we have now will look like the landscape we have in 10 years maybe it will…

Dr. Kate (17:02):

Absolutely, it probably won’t. Because science is advancing so quickly right now. And even since I was a kid to now, even since I would say in the last 10 years, there’s pretty much a cure for 95% of people who have cystic fibrosis, which when we were kids was a death sentence by age 1920. They’ve major advances in almost every medical field. I think that one thing that can be really helpful to parents is to just get on an email list about the newest treatments because there’s a lot of hope there to be found. I think the other thing that I’m a huge proponent of is social connection and not being isolated, not just for your child, but for you as a parent. At my practice, we do run groups for parents of children with chronic illness to help them support each other and also so that we can support through psychoeducation. We have a fantastic clinician who does a lot of work with parents around that. And I just think the most important way to navigate this is to be in community and not just with medical providers for people who are also living their lives. And you have your child who has a chronic illness and you have the two healthy siblings, and what do you do with that when you have to be going to medical appointments? This is real life and it’s important not just to live in the medical part of it, I think.

Dr. Sarah (18:28):

Yeah, that makes so much sense. And what are some other things that you’ve found to be helpful for parents in reframing this or even just being in commiserating of like, oh yes, this is a legit, what are some of the things that are truly difficult when you have a kid who has a chronic medical condition? Just to validate that?

Dr. Kate (18:49):

Oh, absolutely. It’s so difficult to have school absences and try to help them continue to be a student and figure out what to do with their siblings. When you need to go to an appointment, maybe you live in New Jersey and you have to come to New York City for the specialist who is going to see you. And it’s also financially demanding for the family. So a lot of times the treatments are expensive, insurance doesn’t, the state of our healthcare system doesn’t quite cover it, and so it can cause stress on the parents that really the child will probably not be aware of. And I think that for the child, I think it’s incredibly important to go to camp with other kids who have what you have. And I’ll give the example of Crohn’s and Colitis camp. I know that when I went there when I was 13, it was normal camp. You do archery and play tug of war and go swimming and all of those things, but everyone took medicine at lunchtime and that was the only difference.

Dr. Sarah (19:51):

You weren’t in a bubble, you weren’t fragile children sitting in the air conditioned room making knitting.

Dr. Kate (19:58):

Exactly.

Dr. Sarah (20:00):

Who are running around and being kids.

Dr. Kate (20:02):

Exactly. And I think it’s so empowering for kids to be able to do that. And that’s when I talk about as parents, you really want to protect your kid. That’s your main job. And so it’s incredibly, when you get a major diagnosis, whether it’s cancer, really, no matter what it is, there’s going to be a pull to put them in bubble wrap. Things are so bad, I want to make sure they don’t get worse. I want to do the latest things. And you can get really pulled into that world, and that can limit childhood in a way that it doesn’t need to be limited, not just for your child, but for you.

Dr. Sarah (20:45):

Yeah. I feel it’s so important to hear coming from someone like you, right? Someone who is a mental health, licensed mental health clinician, like a doctor, a person who’s experiencing themselves, but also someone who really specializes in working with kids with chronic medical illnesses. Because I think sometimes, and I really understand how this could happen, and I am pretty sure all of our society really feeds into this, that we’re like a parent who has a kid with a chronic medical illness is getting a ton of information about how they have to all the things they have to do. They’re probably incredibly burnt out because they really do have to do so much more.

Dr. Kate (21:23):

Absolutely.

Dr. Sarah (21:24):

It’s a full-time job. There’s probably a piece of like, okay, well if you don’t know about what I’m going through, there’s no way that you could tell me not to protect my kid in this way. I have to make it all easier. I have to make it all easier. And I think it’s important to hear from someone who can say like, Ugh. Yeah, you really do. In some ways, you really do need to make it all easier. And in other ways you’re going to have to push through that desire and almost maybe even wish to be able to make it easier because it is okay, it is okay to focus on…

Dr. Kate (22:09):

School or camp or art class or whatever your child likes to do because as they grow up, if it’s from zero to three or from three to six, whatever, they’re always growing up. And the goal of the American Academy of Pediatrics psychological societies, and I think just every parent just wants their child to grow up into the person they want to be and have the best life that they can as that person. And if your child has a medical illness, then my goal as a mental health professional is to help you trade that responsibility in a scaffolded way over time. So responsibility for things like taking your medicine when you’re a young child, maybe you’re a toddler up through grade school, mom’s going to the pharmacy, calling the pharmacy, dealing with the insurance, all of those things. By middle school, you can start to help and you can know where your medicines are and your job can be remind mom to call. And in high school maybe you start to call and you start to take ownership over those things. And the more that you can sort of transition that very, very gradually over time, the more successful your child will be when they’re 18, if they’re going to college or getting a job or whatever they’re doing because it is something that it’s theirs.

Dr. Sarah (23:44):

And I love it because I feel like what we’re really talking about is yes, there’s a medical condition and there’s also dependency.

Dr. Kate (23:55):

Yes.

Dr. Sarah (23:55):

And they often co-occur, but they don’t have to. And so what I hear you trying to do with families is to help families understand you can do both. You can treat and support your child in an age appropriate way, in a very emotionally attuned way about coping with chronic medical illness. And you can promote resilience and independence and agency and reduce that risk of that codependent piece that can be so co-occurring in chronic medical illness.

Dr. Kate (24:28):

Absolutely. Yes, that’s exactly right. And I think it also offers a lot of hope for families because as the child can, and I’m very interested in this transition age group of 18 to 25, what happens when you’ve had this for your whole life, but your mom has done everything for you. She’s monitoring your insulin on her cell phone and texting you at college and saying, eat some Skittles. She’s just really up in it. And what I have found in my research and all of my, I run a lot of groups for people in that age group who have chronic illness and who are trying to set up their lives. And I think what gives so much hope, and it’s not false hope, it’s earned hope, is that yes, you can learn to manage this as part of your life and you can integrate that into the self that you are developing, the self-concept that you’re figuring out when you’re an adolescent and a teenager. And it does not have to be the main thing about you. This can be something that you manage that flares, sometimes your focus has to be completely on it, but more times than not with what we think of as chronic medical illnesses, there are times when you can pay more or less attention to it.

(25:49):

With the baseline of medicine or whatever you’re doing. And I think if we neglect those things in childhood and we say, okay, all of our focus has to be on the illness, then that really affects self-concept. Then the child becomes the identified patient in the family, which can happen in mental health also, if your kid has anxiety, a DHD, depression, externalizing, and that’s what we really want to avoid from a parent perspective. I think we want to message to our kids that, okay, this is something you deal with. We will deal with it. We’ll get you the best care possible. Sometimes it’s painful and we have to be really focused on it, but when we’re not really focused on it, we need to play sports and we need to draw and we need to read books and figure out what you like to do and live this whole life.

Dr. Sarah (26:46):

So I feel like we’re speaking a lot to the parent who’s maybe letting their fear drive the train a lot and maybe is struggling to see the potential their child has to take on more responsibility. I’m wondering too, for the parent who’s like, I’m doing that, I’m so ushering them into a lot of autonomy. I’m trying to help them try new things and not see themselves as the kid that can’t do this, but the kid is feeling like, I can’t do this. I cannot do this.

Dr. Kate (27:15):

The kid needs to. So I have lived as the kid, so I have many patients who are the kid. And I think that those are more often, actually the people who come to my office are the kids, the parents who are very empowered, who were able to find the psychologist who specializes in this, who are, and it’s the kid who’s saying, I can’t do 10th grade, I just can’t do it.

(27:36):

Or I don, I shouldn’t have to do this. I am sick and I don’t want to go to school today. This is happening. And it’s really counterintuitive to challenge that a lot of the time because they are sick. And I don’t think it’s an art, it’s not a science, it’s trial and error. It’s knowing your kid. And I think that what really in my experience helps kids the most is being in community. And so going to the most illnesses, have a walk, take steps to raise money for Crohn’s and colitis. The family can do that. Asking your doctor to put you in touch with other parents who have kids around your age dealing with the same thing. Can we get them together? Can we make this a more community experience? And this is particularly why I run the groups in my practice, and they’re not typical therapy groups.

(28:38):

I think a lot of typical therapy groups, the therapist will say, don’t talk to each other out of group. Here are all these ways that we’re supposed to interact. We have the norms of the group. I do the total opposite. I say, this is your community, this is your goal, is we have this 12 week group and then you’re friends and you can reach out if you have a question about blood sugar or whatever it is. And you guys can actually go to a Halloween party together. The goal is to say you’re a normal person, you can do these things. And I think there’s nothing that you can really say as a parent that’s as powerful as a peer showing you.

Dr. Sarah (29:18):

Yes, that is. Especially once you move to the 8, 9, 10.

Dr. Kate (29:23):

Yes, exactly.

Dr. Sarah (29:25):

Then you’re really starting to really developmentally the orientation shifts away from the parents and towards peers.

Dr. Kate (29:31):

Absolutely.

Dr. Sarah (29:32):

And I mean once you get into the teen years, it’s like, forget about the parents. I only care about peers. But I think even for very little kids, I’m hearing what you’re saying too is for the parents who are really trying to, oh God, I’m signing him up for soccer, doing everyth, but he just wants to sit on the side the whole time. And really I’m wondering too, and I’m curious, my thought would be, and I want to know if you would do the same thing, because looking at it from, again, independence and sort of a separation anxiety piece, right? Totally. Or a sense of distress tolerance building, whether there’s a medical, chronic medical condition or not. My goal is always to help parents sort of see is the goal soccer or is the goal distress tolerance, stretching? So if my kid is, I always tell story, often tell the story how my daughter had a lot of trouble separating for me for activities for a while. And I remember I signed her for a dance class and I joked that it was a very expensive and separation. There was no dancing, but we still went every week because that was what we were practicing.

(30:53):

We weren’t practicing her dance routine. We were practicing separating. Now, did I sign up for another session? No, but I saw it all the way through because I just really wanted her to have practice each week in stretching that distress tolerance. And I imagine that comes up a lot with younger kids who are dealing with chronic medical conditions that can make distress and make tolerating distress just really, really overwhelming.

Dr. Kate (31:26):

Yeah, no, no question. Definitely does. And I tend to encourage the same thing you did with your daughter. It doesn’t matter what the source is, but I think the difference is there will be times when that child with a chronic illness is too sick to dance and when that’s the cause instead of the separation anxiety. And so I think starting to ask questions really young, probably by three or four you can get answers to does your tummy hurt and maybe even a little younger. And if you can start to model thinking about is this physical or is this anxiety even if you don’t get it right all the time, I tell the teenagers I work with always, it’s an ongoing experiment because the answer won’t be the same every day. It’s not something we can learn. Oh, every time I go to dance, I’m anxious. Sometimes I go to dance and I’m anxious and sometimes I go to dance and I am feeling really weak. And how do we figure out the difference in how we respond to those things?

Dr. Sarah (32:36):

And I imagine just giving kids that permission to be like, Hey, it’s not always going to be one thing and I am not always going. That flexibility, I think modeling that flexibility and that willingness to be like, oh, you know what? Today we’re not going to try this because you really, you are warm and you didn’t get a lot of sleep. I think there’s a tempering of the consistency with the distressed tolerance building strategies that you would do with a kid who’s dealing with a medical condition while also walking that balance, that line of not being flexible in the other direction too. Not exclusively not pushing them or not stressing them.

Dr. Kate (33:20):

No, absolutely. And also giving more options maybe than you would with a kid who has anxiety alone. Because I think with the child with chronic illness, as they’re learning what their physical tolerance is, sometimes they won’t be sure if they can do it. And so I always say, well try and if it’s too much stop, you don’t have to stay for the whole class. I’ll be outside. You come and get me. We’ll see. And more often than not, the kid will then stay. But it’s having that out of like, Hey, I know that you won’t always know at the beginning, and that’s okay too.

Dr. Sarah (33:59):

Yeah.

Dr. Kate (33:59):

When you don’t know, try when you don’t know. Don’t overly not try.

Dr. Sarah (34:05):

Yeah. I’m thinking too, as we’re talking, I’m like, oh man, mindfulness and in interception are probably two really critical things to help teach kids who are navigating chronic medical conditions.

Dr. Kate (34:18):

Absolutely. And I think that mindfulness of understanding their own body so they can start to communicate about it and take whatever they’re supposed to take. But I also think there’s a huge role for distraction that we would not promote in anxiety disorders because distraction in chronic illness, we really think of as a very, very excellent short-term coping strategy. It’s a terrible long-term coping strategy, but if the goal is your seven and you need to get blood work done, and this is just a one time thing, we got to figure it out. Here’s the iPad. Just get through that. This is something Triage. Triage, yes. Take your battles. Triage. I think especially around medical procedures, I really do encourage distraction because something we know about pain and managing pain is actually that distraction helps considerably.

Dr. Sarah (35:15):

Yeah. I have a thought about this. Tell me what you’re, I’m curious. Hear my take and tell me your read on it. But I’m a really, really strong proponent of helping a kid. And again, this is typical medical. It is like kids who don’t necessarily have a chronic medical illness. But for example, even when my children were very infants when they got shots at the doctor’s office, I did not distract them. I would hold them in my lap and I would say, Hey, you’re going to get a shot. It’s going to pinch I’m here. And I would engage with them. And it doesn’t mean they never freaked out and they never cried. They didn’t like it. But there was this, I was really trying to leverage my sort of co-regulation and my physical presence with them almost as a distraction I suppose, but more like a pulling focus.

(36:20):

I really wanted to reinforce that safety and reduce that threat response as much as I could. If I was dealing with a kid who consistently had to be getting a lot of invasive medical procedures, I definitely would move towards distraction, but not until I first help them get that baseline understanding of this is going to happen. You are going to be safe. It’s going to feel like this. This is what they’re going to do. It is going to feel uncomfortable or it’s might even hurt. I’m here. Can you talk to me a little bit about the difference between immediate and full-blown distraction versus being present and engaged with what’s happening to your body and then using distraction as a tool within that larger picture?

Dr. Kate (37:07):

Absolutely. And I’m so glad that you spoke to this because it’s incredibly nuanced and I think that one thing that’s incredibly important that I want to make sure I say is to always be honest with your kids. There’s a big pull in most parents that I’ve spoken with to protect them emotionally. And so maybe they were told when your child is five, they’re definitely going to need surgery by the time they’re 15. And you’re like, well, they don’t need to know that right now. I’ll tell them later. But the problem is they know something’s wrong in their body usually, and when they’re five, they dunno how to talk about it, but most likely they’re very scared.

(37:55):

Most kids react to, I don’t understand this with fear, and we worry as adults about putting fears in kids’ heads and more often we are stating fears that they already have and it’s a big relief to have words for it and to be able to talk and speak to it.

Dr. Sarah (38:16):

Yeah, I always say, and not necessarily about medical stuff, but in general, kids are going to fill in the blanks and they’re going to fill in the blanks with either egocentric thoughts like, I caused this, I did something wrong that made this happen. Or sort of magical thinking thoughts that could be scary. And that’s true for anything if there’s a death in the family or if there’s a divorce or if even just if mom and dad are having..

Dr. Kate (38:48):

A fight or something.

Dr. Sarah (38:48):

Tension. So there’s a difference between in I and filling in the blanks with developmentally appropriate information, but to say, Hey, you saw me and daddy yelling at each other that happened, we made up and blah, blah, blah. But filling in the blanks versus keeping it kind of ambiguous. And I would imagine the same thing is true with this.

Dr. Kate (39:08):

Yes.

Dr. Sarah (39:12):

And I’m again, sure there’s a little difference between TMI and overwhelming them with medical information that they can’t digest, but still not leaving blanks open for them to have to fill themselves.

Dr. Kate (39:25):

Absolutely. And I think that’s incredibly important. So you don’t want to tell them everything as though they’re an adult, but you want to think about their developmental stage and what they can understand. And often they’ll be asking questions, answer their questions truthfully in a developmentally appropriate way, because that’s just going to build trust with your child around the medical stuff and help them from later feeling betrayed when they’re 13. If you have known this, and they haven’t known this. But to go back to your question about distraction, I think that what happens during the diagnostic phrase phase for chronic medical illnesses often is, as you said, a lot a of shots, a lot, a lot of blood tests, a lot of weird medical procedures that you have to drink contrast for all this stuff you have to do. That’s really uncomfortable. And I think that kids reach a limit with how much they can deal with that. And so I think always informed consent, right? Always, okay, hey, we’re going to go to the hospital today. You are going to drink a chalky tasting milkshake and then you’re going to sit in an x-ray machine for an hour, and then do you have any questions? I know that you don’t want to drink that. We’re going to get pizza after set it up. But I think if they get there and they’re really overwhelmed, you don’t need to talk to them about it. If it comforts them to play with their fidget spinner or be on the iPad or read their book, I would just let that be.

Dr. Sarah (40:59):

Oh, yeah. I mean would think, and I think that’s the important difference between distraction as a way of saying, don’t pay attention to this isn’t happening, versus, Hey, this is happening. We’re all paying attention to this. And you don’t have to be, you’re allowed to cope by checking out of this. Right? Absolutely. But again, using it as a tool, and again, to your point earlier of just like you’re trying to eventually scaffold this development of being able to manage their medications on their own or see themselves as a totally regular person who happens to have this thing, we need to give them coping strategies, and it is an important tool in their toolbox that we really want them to have the agency and the knowledge of how to skillfully leverage it. But that’s not going to get learned if you don’t have that baseline. Right? Absolutely. If we’d immediately put the iPad in their face or we immediately distract them from all of the stuff as so they’re not, what’s the word? As they’re not a direct participant in this process, then they’re not going to learn that skill of being a direct participant in this process who then uses coping skills.

Dr. Kate (42:17):

To manage the process.

Dr. Sarah (42:18):

Yeah.

Dr. Kate (42:19):

Yes. No, exactly. Yeah, and I think that it is really complex is they can tell, I think everything we’re talking about, there are so many nuances to it, but I think that the takeaway that I always want parents to have is just your child’s a whole person. You’re a whole person. You need support. They need support. And this is really overwhelming, and it’s going to feel better. It’s going to feel better soon. It really is because it’s, the diagnostic time is the hardest because for parents, there’s so much uncertainty. But once you have a medical plan and you’re enacting the plan, that feels really different. There are different phases. It’s not always emergency. And I think that that’s when you can kind of settle into, okay, what are my ongoing things that I’m helping with that we’re working on? How are me and my child and their siblings and to my partner, how are we all talking about thinking about this as a family and how are we making sure that life goes on?

Dr. Sarah (43:29):

Yeah. No, I think that’s also so important and very hopeful too. We were talking about what are some of the things we can remind ourselves to keep us feeling like, okay, we can do this. Also knowing like, okay, there’s inherent ups and downs to this journey, but they’re not always, the slope isn’t always up.

Dr. Kate (43:50):

Yeah. The slope is really variable, and this is where the mindfulness practice can come in because when we’re doing mindfulness of our emotions or of our breath or whatever we are trying to be present with, the experience is always changing. That’s true with pain. Also, the experience of emotional pain, the experience of physical pain, they’re not constant. They’re not always at a 10 because our bodies and our minds can’t sustain that, but we feel like it’s always at a 10 because it goes there sometimes. And if we can learn to mindfully ride the waves and see that it’s a 10 for five minutes, but then it’s actually I feel a little better. It’s an eight. Just knowing you’re not getting stuck there. I think is incredibly helpful as well.

Dr. Sarah (44:42):

Yeah. Are there any other coping strategies that you teach kids to physically? It sounds like tracking pain and becoming aware, the pain comes and goes. It’s not always there or using distraction as a tool. What are some other helpful coping strategies for kids who are navigating this?

Dr. Kate (45:07):

Yeah, so one thing I would say is learning how to talk to the doctors and nurses themselves can be really empowering and helpful, and usually pediatricians will talk to mom and dad and kid will be there and maybe ask a couple of questions. But the sooner you can ask the doctor to speak to your child and you can work with your child before the appointment on what’s the goal of the appointment? What do you want to tell him? What do you want to know? What are you going to say? What am I going to say? And really helping them take control I think is incredibly empowering. I think that in terms of the other coping strategies are really the way you cope with anxiety, right? Because once you have the base of, okay, we’re doing everything we can to medically help you be well, you know how to do those things, why they’re happening, et cetera. Now, anything that’s left that we have to work on is probably anxiety.

Dr. Sarah (46:12):

Or like the fear that I can’t handle this.

Dr. Kate (46:14):

Exactly. And I do think it’s really important for parents to know that rates of anxiety and depression and PTSD are like 30% higher in kids with chronic illness and also higher to some extent in their caregivers.

(46:30):

And so I think it’s a good idea to get a therapist for your child if they are diagnosed with a chronic condition as sort of a preventative, we’re going to get you someone who is an adult, who is not your parents, who you can talk to about this, who knows about this, who can teach you the deep breathing, who can teach you the mindfulness, who can help you regulate just because the risk is so high that they will go on to develop those disorders. I think we want to be proactive with that if we can as well.

Dr. Sarah (47:03):

Which I imagine is very in alignment with most parents’ ethos when they’ve got a kid with chronic medical illness. They’re probably very invested in getting ahead of stuff. Absolutely. This should just be part of that package.

Dr. Kate (47:16):

It should. Yeah, it really should. And most doctors, most pediatricians or pediatric specialists, I think it’s getting a lot better now. We’ll have a psychologist on staff or we’ll have referrals that they can give you to someone who works with people who have your child’s illness. And I think that that’s always a good place to start if you’re looking for a psychologist.

Dr. Sarah (47:37):

Yeah. And if people want to learn more about the work that you do or reach out to you or connect, how can they get in touch?

Dr. Kate (47:47):

So they can go to my website, which is healthpsychny.com. And I’m also happy to put my email in the show notes or however that would be helpful.

Dr. Sarah (47:56):

Perfect. Wonderful. Thank you so much. This was really, really helpful. I think I could see this being really validating to a lot of families and also really hope instilling you’re doing such incredibly important work.

Dr. Kate (48:13):

Well, thank you so much for having me. It’s really been a pleasure to speak with you and to meet you, so I really appreciate it.

Dr. Sarah (48:20):

Yes, thank you.

Dr. Kate (48:21):

Thank you.

Dr. Sarah (48:29):

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