How Do I Parent a Teen with a Chronic Health Condition?

Ask Lisa Podcast, Ep. 137: How Do I Parent a Teen with a Chronic Health Condition?

The Ask Lisa Podcast does not constitute medical advice and is not a substitute for professional mental health advice, diagnosis or treatment. If you have concerns about your child’s well-being, consult a physician or mental health professional.

The following transcript has been automatically generated by an AI system and should be used for informational purposes only. We cannot guarantee the accuracy, completeness, or timeliness of the information provided.

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Reena Ninan
You know, I’m hearing from so many more of my friends who are now required to go into work and not just be at home where you have a little bit more flexibility. And one of the things when you’re talking about childcare is when your kid gets sick. And oftentimes you hope it’s a day if you’re lucky. And then they go right back to school. But Lisa, what if it’s longer? And sometimes it is right?

Lisa Damour
Yeah, no, I you know, we’re at that part of the school year where kids are starting to get sick with stuff and they come down with it. And you kind of deal with it for a few days. And it feels like this giant disruption. But there are a lot of families who are dealing with a situation where their kid has a chronic health condition. And they have to really make adjustments. There’s a whole family around that.

Reena Ninan
Well, it was fascinating, Lisa. So we got two fabulous letters about kids with chronic health conditions talking about different subjects. And so we’re going to start with one letter. And then after the break, we’re going to read the other letter, which tackles a bunch of other issues as well. This one comes from a listener in England, and it reads: “Hi, Dr. Lisa, please can you devote an episode to how parents can support preteens and teens who have a chronic medical condition. Our 12 year old daughter has type one diabetes, and recently started at a new school. Her old school was small and cozy and we feel she was fairly inoculated from the difficulties of life with Type 1 Diabetes. Now that she is 12 and at a new school, she’s acutely aware of being different from everyone else, something no 12 year old wants to be. She is a gentle kind kid who has a lot to deal with on a day to day basis to manage her condition. She was bullied early on at the new school, which we alerted the school to who seemed to take appropriate measures and are providing support to her at school regarding building social competence. We’ve also assessed psychological and therapist support for her and spend a lot of time together as a family. But she seems to lack social competence. We’d love to hear your thoughts on how best to support children in similar circumstances. Life is hard enough between the ages of 12 to 16 without a chronic medical condition. Thank you so much.” Wow, wow, wow. First off, you know, I guess in my ignorant mind, I never viewed Type 1 Diabetes as a chronic health condition.

Lisa Damour
Yeah, I think it’s a fair description. And, and I think the way we think about it, I mean, I’m not I’m not a medical doctor, right, is that it needs constant management.

Reena Ninan
That’s a good point.

Lisa Damour
It is. I mean, and by constant I mean, all day, every day. Anyone dealing with Type 1 Diabetes is having to keep an eye on their blood sugar. And decide how much insulin to inject to regulate their blood sugar. And the thing that’s so complicated about this is that the things that are just typical parts of the day, like what you eat, how much you exercise, literally how stressed you are, those will all affect blood sugar. And so anyone managing diabetes is needing to keep a very, very constant eye on what their body needs.

Reena Ninan
I hurt my heart about the part where she’s aware that you know, she’s got the sense that she’s different. What what do you think her parents can do? To help her with the sense that she understand she’s different and it’s starting to stick out and show.

Lisa Damour
So number one is I would say like, Don’t deny it like it does make it does feel different. And you know, the kids who I have been around or care for who struggled with type one to, you know, not struggle with, but live with Type 1 Diabetes, you know, they show up to places with their own snacks, they’re monitoring their blood sugar levels, and you know, there’s a constant monitor that can be attached to the skin, it’s often on the upper arm. And it’s actually a really helpful thing, because it actually constantly is keeping an eye on glucose levels, as opposed to having to do finger sticks all the time. But it means that they have a plastic little machine that is attached to the back of their arm. And like meaning to remember being 12, 13, 14. And like having a haircut you didn’t like, or a pimple that felt really prominent, like, I cannot go to school, this looks wrong, this looks different, right? I think if we can talk into the, the way in which those even physical or visual differences can feel so exquisitely painful. At that age, I think we can have a lot of empathy for like, the adult, maybe like, this is great, you’ve got a blood sugar monitor, like just lives on your skin, you don’t have to pay attention, this is a great outcome. And that a to a 12 year old that may not feel like a great outcome that may feel really awkward and strange and different.

Reena Ninan
So when you have a child who’s going through a chronic illness of some sort, and you know that the illness makes them look or feel differently, what’s your advice to the parent for tackling that? Because you can’t avoid it? And you can’t brush it aside and say, Oh, no, no, it’s gonna be fine.

Lisa Damour
Yeah, right. Okay. So I mean, I, you know, I think I’m so grateful to be a developer, like, I’m not a developmental psychologist by training, but my training is very developmentally oriented. You know, so they think about, okay, well, this is happening in the box, that is age 12. Right. And that anything we’re going to advise, is going to really center on what it means to be 12. And you know, the ages right around it. And here’s the thing that I think can inform how an adult walks up to this. I would say probably the number one fear and by fear, I mean, like in their bones terror of 12. So 12 is seventh grade, you know, right around there is isolation. I think that at that age, there is an almost primal fear of ending up isolated, and this is true for all 12 year olds. And so if a 12 year old with a chronic health condition is bringing across concerns like this makes me different. This makes me strange, I feel like I stick out. I think the way to address that, as the loving adults is to think, Okay, this kid is terrified of ending up isolated for being different, right? Like, it’s almost always about, like, I’m afraid I’ll be isolated. So then all energies go to isolation, prevention, right, making sure that kid does not feel isolated as a result of their difference.

Reena Ninan
How do you as a parent, make that happen? Because I’m curious about this bullying part. Lisa? Right. Like, what’s up with that?

Lisa Damour
I didn’t like that. I was really bummed to hear that and, and I, like, you know, who knows what the dynamic was. And the thing I’m like, I’m sort of bummed and surprised to hear that is that bullying happens. And it’s awful when it does. But it’s also my experience that usually teenagers are pretty good about leaving alone, kids they see to be vulnerable. Like, I’ve often like, I’ve often been just absolutely, like, really deeply impressed by how teenagers if they sense that someone’s vulnerable, though, actually rally around that kid. So I was really bummed to hear.

Reena Ninan
So why do you think they’re doing that? Then if you if your sense is you’ve seen this over the years, and usually they’re not picking on the kid who has a chronic health issue?

Lisa Damour
Yeah, I mean, who the heck knows what’s going on. But I mean, there are kids who are very insecure or feel very anxious in their own way. And the form that it takes is going after a kid because they are vulnerable. So that could very well have happened here. And what I liked hearing was they brought it up with school, it feels like the school was on it. So I don’t want to in any way diminish or count out the fact that, you know, a kid who’s vulnerable may be more subjected to bullying, maybe then a kid who’s not but I was really sorry to hear that, that it happened. So the first thing is to do actually what the parents did, if it’s really bullying, and bullying is where there’s a power differential and the kid on the receiving end is unable to protect themselves. You do actually need to alert the school like it is important, you know, don’t call the other family don’t, you know, try to handle it yourself. Get the school involved. And from what little information we have, it sounds like they did and it went well. And they can move forward. So I was glad to hear that it seems somewhat resolved at least in this description.

Reena Ninan
That’s good advice, also to hear from you just on this issue just deal with the school directly and have them sorted out quickly.

Lisa Damour
Yeah. But so then, if we just tackle this straight up from a leg, don’t let this kid end up isolated question. So there’s a few things that parents can assess, you know, so one is, does she have at least one good friend And I will say, You kid does not need a big social network kids are not necessarily made happier by having a big social network, they’re often made more stressed, because they’re trying to juggle too many, you know, relationships at once. And even and, like, I want there to be no bullying, but even a kid who is subjected to bullying, you’re looking at two very different situations if that kid has no friends, or if that kid has one good friend, because if a kid is subjected to bullying, and they have no friends, that is a five alarm fire crisis. If a kid is dealing with bullying, but they’ve got somebody school who’s like, ignore them that pick the kids a jerk, come hang out with me, you know, don’t, that is a very different scenario. So do they have one friend? Do they have no friends, like you want to assess that? The other thing, I wonder, and a lot of times kids will be resistant. Sometimes, hospital systems, medical systems will have ways where there’s like support groups for kids and families dealing with similar issues. So I would also wonder, you know, is there a type one diabetes program? That is extra? You know, that that, you know, obviously, they have medical care? They have doctors who specialize in this? You know, is there something that the hospital or the medical system is providing that’s like, and our families meet once a month to talk about this? And so your kid can meet other kids who are dealing with this. Now, most 12 year olds worth their salt will be like, You have got to be kidding me? No way. I would not want to do it. Yeah, my own eyes out. Like, I’m not going. But I think that that’s a possibility.

Reena Ninan
Lisa, what do you do? If, obviously, as you mentioned, they don’t want to go the social groups, and they don’t have that friend, because it can be so isolating often, right? That you you, you climb up into a shell? How does the parent respond that?

Lisa Damour
Well, and especially like, climb up into a shell does sound a little bit like this letter, what she’s saying is this child has very low social confidence, you know, it’s very anxious. Now, these are my words about how things are going to go socially. So the rule here, Reena, is, the only way to get past an anxiety, the only way to build confidence is by doing the thing is by doing the thing, like the more you wait, or dream daydream about how it can go wrong, the more anxious you become. So what I would say in terms of the low social confidence, or a kid who’s like feeling very reluctant to put themselves out there is can the parents create very low stakes, high chance of success conditions, for her to actually start to wade into being a bit more of a social person. There’s a beautiful book called “The Science of Making Friends” by Elizabeth Laugeson. And so I would recommend parents get it, we’ll put it in the show notes. And it really is a very wise book about like, how to initiate conversations, how to keep conversations going, how to even how to deal with bullying comes up in there. So I would recommend the parents get this, look at this, decide how much they want to share it with their kids, or just use it as their own like coaching manual as they coach their kid. But use resources like that, to be able to provide good advice and then see if you can’t say like, why don’t you invite that one kid over, like a kid who you know is going to be, you know, likely to be a fun guest and a wonderful kid. And just treat it all as practice, right? That social skills are like any skills, you develop them through practice. And so she might need to practice her social skills. So you want to set her up for success.

Reena Ninan
When you have seen over the course of of treating, and dealing with kids with chronic health conditions, what works best in building that social competence?

Lisa Damour
So practicing. And then the other thing I would say is, teenagers take their cues from one another about how big a deal something is. And so sometimes schools will help kids either do a quick little presentation to their class, about a chronic health condition. And it can be any variety of chronic health conditions, where the kid actually is like, “Hi, everybody, just a few things you need to know about me… You’ll sometimes see me doing this, you’ll sometimes see me doing that. It’s because I have you know, fill in the blank. It’s something I manage. If you have any questions, feel free to ask.”

Reena Ninan
In the teen years?

Lisa Damour
Oh, totally.

Reena Ninan
Really?

Lisa Damour
I would say doing that a little bit for younger kids, or prepping your team to do it one on one with their peers, right. But the thing is, like, sometimes the advice I will give kids in my practice is like yeah, I get it. You know what, just don’t be weird about it. Right? I’ll say to them, just don’t be weird about it. And it’s the kid can like be or they may feel weird. I’m not saying don’t feel weird. Like you can’t control that. But as a kid can be given advice to be like, Yeah, you know, here’s how you can explain it to your friend. Or you can write it up and like him. Like you can say like, here’s, you know, if you want to learn more, like here’s a little pamphlet about what I struggle with. But the kids can set the tone of like, I got it. I’m on it. You know if you have questions you can ask me. And it can be very powerful. When a person is like you know, this is not this is not these are not the droids you’re looking for, you know that mine like it’s a kid kind of does that these are not The droids you’re looking for, like, it can actually be pretty effective at people being like, “Okay.”

Reena Ninan
I see that going a totally different direction with teens that, that it’s just so embarrassing. I’m gonna do that. So embarrassing. I don’t want to share my private information with them even though it might be public and people aware, but you say it works.

Lisa Damour
Well it can work. And I think I would also I think you’re totally right. I think there’s very few kids when you’re like, Well, I have an idea, what have you just like, dealt with it head on? Yeah, very few teenagers would be like, well, that is brilliant. I think I’ll do that. But I think that it’s the kind of thing where you could plant the seed at 12, 13, 14. Be like, you know, your time may come or you just quickly explain to people why you have to, you know, step away or what the thing is on your arm. And the key may be like, no, no, no, no, no, but that doesn’t mean that they won’t do it in six months, in a year. So I think, again, you know, what we’re getting at here. And so, so critical is, the parent also has to set the tone that the kid is supposed to be setting, like, if the parent is like, you know, it’s cool. This is just This is what it is, you know, we wouldn’t have wanted this, but it is what it is. That’s our attitude about it. That can be your attitude about it at times you can transmit that attitude to the people who have questions about it. So I think kind of modeling a matter of factness about it. Yeah, from the parent side, can help the kid start to model that for peers. But again, probably not the first time you bring it up.

Reena Ninan
That’s great. What else do you think that parents might not be thinking about that you find is also important?

Lisa Damour
I think that just this letter said it so beautifully, it’s already hard enough to be 12 to 16, right? I mean, like, this kid’s gonna have all the other complexities of adolescence layered over having to manage, you know, frustrating and potentially very scary at times, health concern.

Reena Ninan
We mentioned at the top we’ve got another letter. That was a beautiful letter that we first read from England. But I want to get into this other letter because it tackled some other issues on chronic health conditions that we thought were important: “Hi Dr. Lisa, my 12 year old son was diagnosed with Type 1 Diabetes 18 months ago. It all seemed easier for both of us when he was 10. Now he’s 12 and I have to weigh his food, ask him “Did you dose for that?” Not to mention there’s just always an undercurrent of me being aware of what he’s eating. He hates this. When he was 10 he took it in stride, from my perspective at least. Now he forgets to take insulin. He gets mad when I remind him. He sneaks food. I don’t know how to not turn it into a point of contention for us. I understand that he can’t fathom if you’re not careful with your health in 20 years, you could have X problem. So how do I make him care? I don’t even know how to ask the question. Do you have any suggestions?” Why does it feel Lisa this situation is worse, even though he’s only like a couple of years, like 18 months older?

Lisa Damour
Yeah, no, it’s really interesting. And I also I just like, I think I’m so glad we’re doing these two together, because it’s the same disease, right? They’re both struggling the same thing. And they’re actually the same age. But we’re looking at two very different dimensions on this, and which, again, I think, I love that we just happened to get two letters that lined up so beautifully in the kind of facts of the situation. And yet told six different stories about what it was like to parent that child, because again, it just, it just calls so much attention, like how complicated parenting is, how specific it is, how much it’s you and your kid. Okay, so we know this piece around like a 10. It wasn’t that big a deal to coach this boy, he was much more amenable to keeping an eye on his insulin as he was supposed to. And it’s 12. Now, this all feels like it’s falling apart. I will tell you, I have seen this pattern over and over again, around medical concerns, that it’s easier for kids, pre adolescents who attend is usually like right on the cusp pre-adolescent to tolerate having metal concerns. And it’s easier for adults to tolerate having medical concerns that involve other people intruding on their bodies, right, because when you’re a kid, you’re used to people having your hands on you in the you know, care and people telling you what to do. And when. And when you’re an adult, you’ve had time to have a sense of like, my body is independent and autonomous. So now I can decide to grant you access to it to give you medical, give me medical care, teenagers fall into this perfectly normally developmental adolescent window of like, I want autonomy, I want bodily autonomy. And they wanted about all sorts of things, what they wear, you know, how they do their hair, all of that. So it’s a real collision of forces, when a teenager has a medical concern that involves people to be in their bodily business. And so that is why, even though he’s older, and theoretically more mature, it feels like it’s going backwards in terms of this mother’s ability, or this parent’s ability to coach him on the management of his own body.

Reena Ninan
So how do you stop this from turning into a fight? Right?

Lisa Damour
And this is like, you know, we were talking last time about stuff that can matter when you’re 30.

Reena Ninan
Yes, right. Yes. On the crop tops. Yeah, yeah.

Lisa Damour
So this is one that’s tough, because this could matter when the kids 30, that, you know, it’s scary to have a kid with Type 1 Diabetes, because if they’re hypoglycemic or hyperglycemic, a lot like it can have long term implications for their health. So this is, nobody’s in a good position here, the poor kid is having to deal with the support parent is having to deal with us. So I think that one way to go about it, is to really focus on his health and his safety, right, it’s not about the kid bending to the parents well, but really, and this is what we do not just for type one diabetes, this is what we do for how you drive for how you, you know, go to parties, this is about his health and his safety. And that the parent is wanting him to take good care of his own health and safety like this. It’s his own autonomous interests that are at stake here. Now, one way she could go about it, I’m saying it’s a she, I think it’s um, I don’t know, the parent could go right, it doesn’t really matter. The parent could go about it, is to say, buddy, I don’t want to be in your business. I don’t want to be asking you, if you’ve eaten, I don’t want to be asking you where you are with your insulin, I don’t want to do this. You don’t want me doing this. Like, you don’t want me up in your business like this. But here’s the deal. If you’re not on top of it, I have to be on top of it. So if you want me out of your business, there’s, you got all the power, buddy, you start taking control of this. So that would be the conversation to start with.

Reena Ninan
You know, Lisa, they in this letter, they talk about how the child really hates when they’re asking about everything they’re eating, and on top of them about this? What if they’re sneaking food? Like what if they’re doing something that could really have serious critical issues on their health.

Lisa Damour
Yeah, no, it can be very dangerous. So this is actually a really interesting place in the care of Type 1 Diabetes in particular. Most families at this point have an app, you know if they can afford it, yeah, he knows is not something that is affordable to everybody. But insurance companies are increasingly I think very good about covering this. So the kid will usually have a continuous glucose monitor, and the family will be able to have an app that alerts them that lets the parent actually see the kids glucose situation, wherever the kid is, and even has an alarm for when things are concerning. Now I am sure I’m grossly oversimplifying how complicated the realities are of managing.

Reena Ninan
But your point is, you can, you can, this is something that you can keep track of and manage.

Lisa Damour
You can keep track of. And so the parent does have a backup system and can have a backup system, okay? And is not entirely hoping and praying that the kid is making good choices all the time, because they are kids, they will not be making good choices all the time. Yeah. So I think that like, Thank goodness for these evolving technologies, where parents can actually have sort of a safety net in there. And so I think that makes us better. And I think it really is about saying, you want to be independent, I want you to be independent. Now, the thing that’s hard Reena is the kid may be like, Yes, I hear you, I want to do it, I get it, that I have all the power about getting you out of my business. Now, we’ve talked a lot about executive functioning on this. Yeah, cuz, okay, the executive functioning required to manage Type 1 Diabetes, well, is not small.

Reena Ninan
I know. And that’s what that’s what I worry about. How dangerous is this? Really, because, you know, one bad spike one, you know, it can take one forgetful moment for something serious to happen? How dangerous is this? Really?

Lisa Damour
I don’t know that. I know. I mean, I think it can be very, very dangerous. And I think that things can spin out of control. And so I get it, we’re a parent can be very, very scared. But what I would say and I mean, you know, think about the amount of work we’re talking about for the hand involved. Like I’m not, I don’t say any of this lightly. So first, I think it’s about transferring it to a fight not between the parent and the kid, but between the part of the kid that wants to do whatever the heck they want to do, and the part of the kid that wants to take good care of themselves, right, and really try to make it that’s the conflict. And then I think the next part is to say, all right, dude, you want to take this over? I want you to take this over. Are you able to, and what structures can we put in place to help you take it over? Like, do you need reminders on your phone? Do you need to check in with, you know, somebody else who’s not me, right to feel like you’re in charge of this? So trying to disentangle a little bit like the fact that you don’t want this to be a power struggle between you and your kid? That’s one issue. But then if you can get out of the power struggle, does the kid have the supports? They need to manage it effectively on their own? And what kind of supports can the kid and the parent come to agreement should be put in place?

Reena Ninan
Does it get any better?

Lisa Damour
Yes. Here’s what I will say. And I think that, you know, colleagues of mine in the medical field will say, Oh, yeah, no later in life, people manage their Type 1 Diabetes quite effectively. Adolescence is really hard. Because like, you don’t want people in your business as a teenager. That is typical unexpectable. And we, you know, we’re talking about in your business, like, what did you eat? And when did you eat it? And how much did you exercise and you’re going to that party? Are you going to drink at that party? Because like, drinking at the party means something different, too great for a kid with type one diabetes, and a kid who, you know, doesn’t have it. So it’s really hard on kids in their families to have anything like this.

Reena Ninan
Yeah, I’ve learned so much. And you’re right. I think that what got me about this letter, and we felt we needed to do these two different ones are such different angles of the same problem. Yeah. And this, this parent saying, between the ages of 10 going to 12? Boy, have we noticed such a difference? That was really remarkable to have you walk us through it. So what do you have for us for Parenting to Go?

Lisa Damour
So for Parenting to Go, what I would say is, if you have a kid with a chronic health condition, I hope you have all the support in the world, right? You deserve it, and you need it. And I hope you have it. The other thing I will say is, every one of us is parenting in a community with kids with chronic health conditions. And so as our own kids become aware of it, if our kids don’t happen to be in that category, I think there’s some really good parenting that can go on, I think we can work to learn about what that child’s experience might be. And then if that kid is close enough into our own kids social circle, so like, if they’re for social circles away, you probably don’t need to give up much, you know, consideration. But if they’re closer, you might say to your kid, if you had to struggle with this with what this kid is doing on a daily basis, what would you want from other people? How would you want other people to be? And then, you know, have your kid think it through and they’d be like, Okay, go do that. Go be awesome. And so I think having a chronic health condition as a child is incredibly challenging, hard on families hard on the kid. And I think every single one of us can be part of the solution.

Reena Ninan
It’s great advice, because you want to help often when you see this and within your own community, but you don’t know what the appropriate steps are to take. But what I’ve learned one of the big things is having conversations really makes a difference with your children.

Lisa Damour
Yep, they’ll come up with solutions we never thought of.

Reena Ninan
That’s a great point. It’s a great point. And next week, we are going to take on a topic that’s really fascinating. Should you leave town and let your kids be alone. I mean, clearly there’s a certain age for this but Julia teenager house it your teenager should they be able to house it the things you might not have thought of that Lisa is gonna walk us through. I look forward to that one. Lisa, I’ll see you next week.

Lisa Damour
I’ll see you next week.