Ep. 23: Chronic Illness-Letters from our Listeners

💙 Parenting a child with a chronic illness can feel like an emotional rollercoaster—one filled with fear, guilt, exhaustion, and endless searching for answers. In this episode of webe Pärents, Dr. Alona Pulde and Dr. Matthew Lederman open up about their own struggles as their daughter’s Crohn’s disease flared, forcing them to confront not only her pain but also their own emotional patterns.

They also share powerful listener stories:
🔹 Miguel and his wife, who felt completely alone caring for their child—until they found a support group that changed everything.
🔹 Sarah, who was so consumed by trying to find a cure that she pushed away the very people who could help her.
🔹 Jenna, who stopped chasing solutions and instead focused on her family’s well-being—only to see her child’s health start improving.

What if emotional healing is just as important as medical treatment? How can parents manage their own stress without spiraling into guilt or frustration? And what’s the key to staying united as a couple during the hardest times?

Tune in to hear the science behind emotional regulation, the power of connection, and the RAIN tool that can transform the way you cope. Because taking care of yourself isn’t a luxury—it’s a necessity. 🌿💫

To learn more about what Alona & Matt are up to check us out at webeparents.com, or follow us on our socials at Instagram, Facebook, TikTok, or YouTube. Be sure to subscribe to webe Pärents wherever you listen to your favorite podcasts.

Transcript

chronic illness letters- 
 

[00:00:00]  
 

[00:00:19] Alona Pulde: Hello and welcome to We Be Parents, where we explore the joys and challenges of parenting and help families grow closer together. I'm Dr. Alona Pulde.  

[00:00:31] Matthew Lederman: And I'm Dr. Matthew Lederman.  

[00:00:33] Alona Pulde: And in our last episode, we talked about something that has been near and dear to our hearts. for the last couple of months and the subject was the heartache that parents face when their child's health is struggling and doesn't seem to improve or improve fast enough despite all their efforts. 

Today, we're going to be hearing stories, both successes and struggles, along with heartfelt questions from our listeners and offer insights to help you navigate through tough times such as these.  

[00:01:11] Matthew Lederman: And before we jump in, if you haven't subscribed yet, now's a great time. We're here every week with practical tools, compassionate advice, and all sorts of interesting stories. 

So please do subscribe and you'll never miss an episode.  

[00:01:26] Alona Pulde: Yes, indeed. Um, so as I mentioned, we talked about, uh, in our last episode, we talked about the, uh, emotional toll that parents experience when their children's recovery from a chronic condition feels painfully slow, isn't happening, or they're getting worse. 

And we talked about our own experience with Uh, our 13 year old Kylie, who suffers from Crohn's disease and has been medically managed quite well on a, uh, [00:02:00] medical diet for many, many months now, but the last two months she started flaring and, um, And it was, she wasn't feeling well and she was getting progressively worse. 

And we were trying to figure out what was going on and it really took, uh, a personal emotional toll, a family emotional toll, as I think, you know, Matt, you, you and I both shared, we got into our headspace. space in different ways, but still spent so much time in that headspace, disconnected from our hearts and the impact that that had. 

[00:02:42] Matthew Lederman: Yeah, it's been a tough time. And as we're always trying to grow and learn, there's the old way that I deal with things, which is intensity. And sort of shutting down and getting hyper intellectual and trying to solve the problems so that I can rest later and sprinting, staying up late. All of these things that are really, as I say them out loud, clearly unhealthy. 

And at the same time, my body is drawn to these old, familiar, habitual patterns of trying to navigate stress. And When we talked about the RAIN tool, R A I N tool, it's a way of trying to get people back into that felt space. And if you have time to go listen to that episode, I recommend it. Because it's also, for me, it was very important to speak to skeptics who say, why, you know, feeling feelings is great, it's a luxury when you have time, but when There's emergencies going on. 

This is not a time to talk about feelings. This is a time to figure out the solution and fix the problem. But when you're running a marathon, [00:04:00] stopping and fueling up along the way, is the key to finishing the marathon. You can't sprint and expect to run a marathon. And my growth has been around being able to convince myself and my body that we're in a marathon, not a sprint. 

And that stopping to care for yourself and to feel for feelings is not only Helpful, but essential.  

[00:04:25] Alona Pulde: And not just for you, but for your children too. I noticed that when you and I can get down to our heart space, how much more connected we are with the girls and how I truly believe that helps. Kylie in her healing process because she's more emotionally regulated because she's able to sleep better because her, you know, everything that she's doing is in a space of, of, uh, regulation and expansiveness versus contraction and constriction and tension. 

Where we cannot optimize, nor can our immune system optimize in that mobilized state.  

[00:05:08] Matthew Lederman: Which is exactly what she needs to be able to heal.  

[00:05:11] Alona Pulde: Exactly.  

[00:05:12] Matthew Lederman: And it's so hard to do that. And I noticed that I have this belief that I will fix the problem, and once I do, then I can rest and restore. And then I'll feel peaceful, and then everything will be okay. 

But the, that's not how this disease process works. This is, this is a long time. This is, this is months, sometimes longer, to fully turn around. So, I can, what I found when you and I are connected and we're, we're meeting needs for hope and clarity and trust and, and care for each other, that even though Kylie might still be flaring, [00:06:00] that there's this sense of inner peace and lightness and, and clarity and hope and security in that connection and in that trust. 

So you don't need, we don't need Kylie to be fixed for us to experience inner peace. Hope and optimism and lightness. And that was really enlightening for me to learn to not learn it intellectually but start getting a trust of that in my body.  

[00:06:27] Alona Pulde: Yeah.  
 

[00:06:30] Matthew Lederman: So for people that aren't, uh, haven't listened to the fir, the episode from last week, RAIN stands for recognize, allow, investigate and Nurture, and that was one of the tools. 

Yeah. A little  

[00:06:43] Alona Pulde: bit. We go into a lot more depth Yeah. About it in that episode.  

[00:06:47] Matthew Lederman: But if you hear us re um. Referring to that, it's just one of the tools that we find really helpful to do ourselves and with each other.  

[00:06:57] Alona Pulde: And one of the most helpful things is that it's a pause. It's a, it's a moment of, or many, a few moments of reflection. 

The ability to tap into our own barometer. And then from that, come to a space of emotional regulation that allows for clarity of thought, allows for expansiveness of thought, um, allows for greater personal connection to yourself and to your family. And it's not just a nice to have, it's a scientific, scientifically proven way to actually improve physical. 

And mental well being. So, uh, again, not just a nice to have. Um It's  

[00:07:47] Matthew Lederman: essential. I Yeah. It's essential. And some of these stories that we have here, I think, are very, very impactful and help clarify some of this. Would Do you [00:08:00] mind if I read one of these?  

[00:08:00] Alona Pulde: Oh, please.  

[00:08:01] Matthew Lederman: So one of them that I found helpful was Miguel, this person, Miguel and his wife, and I changed the name. 

But They basically felt isolated, caring for their daughter with severe asthma. And one night they attended a local support group for parents of chronically ill children, and hearing others share their experiences lifted an emotional weight. And they realized they weren't alone, and that community that togetherness gave them the strength to keep going. 

And it's so important to find community that can be transformative. And your community can be friends, it can be family, it can be other, other people dealing with similar issues. You don't have, but you don't have to carry the burden alone. And a lot of suffering happens when you carry things alone. So, so reaching out to others who understand your struggle can so impact you. 

Your sense of hope and resilience.  

[00:09:03] Alona Pulde: Yes. Reaching out to those who, you know, support groups, people going through similar situations, but also to friends and family, even if they're not going through the same situations, you know, I. It makes me think about, um, my own family, my mother and my sister, when I share that Kylie wasn't doing well, their first response was, how can I help? 

What can I do to support you and to support Kylie? And that just, I mean, it brought me to tears. And the tears were tears of relief. Oh, somebody is here with me helping me through this process. I'm talking to doctors that are managing her care, you know, and feeling like there are other people invested in her well being. 

It offers such a relief for me.  

[00:09:57] Matthew Lederman: And that's it. It's it's. about [00:10:00] showing up and supporting the other person, not telling them what they should do, not having a specific idea of what you, you should do for them. You know, you mentioned that if you just need a good cry and your mom can listen and just be there with you so that you feel safe, that's so helpful to you. 

She's not fixing anything. She's not doing anything as far as What a lot of people think of as doing but she's in reality. She's actually doing a lot.  

[00:10:32] Alona Pulde: Yeah yeah, because that's a hard you know, I I noticed that because I did break down with my mother and When I reflected on that, there's so much of me that wants to show up soldiered up and positive for Kylie and hopeful and strong. 

But that really results in a repression of my own fears, my own worries. And being able to release that on my mother, um, and have her just be there with me, just hear me, you know, just hold me in that space again, was, it was just such a release and it was so healing for me and it didn't change any of our outcomes. 

But it, I, I felt not, I felt like there wasn't this facade of strength. I really felt strong and I felt hopeful in that space of care. Uh, so I think it's, it's super helpful. And this is actually a story in the opposite of what happens when we don't nurture that side. Um, and this is, uh, Sarah, whose daughter was. 

is also battling Crohn's disease and was in the middle of a painful flare up. And Sarah [00:12:00] had been staying up late, obsessively researching alternate treatments, exhausted and angry at herself for not finding a solution, fearing that she was missing something, and it resulted in her snapping at her husband. 

And then Feeling on top of everything else consumed by guilt, that now she was not only in that state herself, but completely disconnected from her partner. And so that experience is equally relatable. We feel helpless and exhausted and frustrated, and it's so. It's easy to project that frustration onto a loved one, and even if you don't verbalize it, the tension that you hold is felt, not only by your partner, but by your children as well. 

[00:12:50] Matthew Lederman: And that's the other thing is the downstream effect of not caring for yourself increases the chances that you're going to snap. So. Not only do you do it because it's good for you or good for your family, but it also builds up sort of a savings account of resilience that can decrease the chances of snapping when you're under resourced. 

You know, the other night, I took personally when you, when I, for some reason I always leave your coffee cup out of the dishwasher, and I took personally You know, when you said, why do you keep forgetting my coffee cup? You know, like what's, is it different than the other dishes? And because I was under resourced and I, and, and it's how I'm hearing things. 

I was, I was taking that personally. Like, why does she think that I have something against her coffee cup? And it's, and when I say it out loud, it sounds silly, but that's the thing that can happen is these like silly, uh, incidents can pop up. And I, and I knew that when I'm working myself. You know, staying up late and, and then you actually hear, it actually, the, what you [00:14:00] hear and the sounds and the intensity and the emotion that you're perceiving can be different than what the other person is actually sending because I'm mobilized. 

So it all adds up.  

[00:14:10] Alona Pulde: Absolutely. Not only are you mobilized, but you have an internal loop that says, I am missing something. I am not enough. I am not doing enough. I'm  

[00:14:19] Matthew Lederman: failing. One more time that I'm screwing something up.  

[00:14:22] Alona Pulde: Right. And, and then something as, you know, benign as that kind of a comment triggers that same neural pathway. 

Again, I'm failing. Um, and it just gets to be too much. Yeah. And here's the, you know, yet one more side of, of that coin, which is Brian and his wife thought they'd finally found a treatment plan that would manage their son's eczema, but when the flare ups returned with a vengeance, they were devastated. 

Brian started doubting. every decision they had made, wondering if they'd overlooked something crucial. And that fear of what if, what if I miss something? What if I'm not doing it right? What if I'm not doing enough? It can be paralyzing, but it's really important. It's super important to remember that when plans fail, setbacks are not necessarily a sign of failure. 

These chronic diseases. Are unpredictable, they will go up and down and it's really kind of navigating that roller coaster that ends up, it's that marathon, not that sprint that ends up leading to. Yeah.  

[00:15:44] Matthew Lederman: It's about doing your best in every moment, step by step. And if the goal is how, around how you show up instead of fixing the problem, then downstream the [00:16:00] problems tend to start to, to fix without you having to, to do it. 

You can focus on how you show up. And then together, strategies sort of emerge. That's a big nonviolent communication concept, that instead of coming in with a strategy or focused on what you need the outcome to be, focus on connecting. Focus on connecting around the feelings and needs. And then once there's that strong connection, strategy, all these strategies start to emerge and solutions start to happen, often many of which You didn't even think about when you started the conversation. 

[00:16:36] Alona Pulde: I love that. I love that. And that actually leads to, before we get to letters to our listeners, our very last story, um, to share, um, which talks about just that. After months of sleepless nights and failed treatments, Jenna decided to pause and focus on her family's emotional well being instead of chasing the next medical option. 

To her surprise, As the family began to communicate and relax more, her son's symptoms eased slightly. It wasn't a cure, but it was the first improvement they'd seen in months. And what I love about this story is the reminder that sometimes Progress doesn't come from more effort, but from giving yourself permission to step back and breathe. 

Jenna's story is a really important reminder that emotional healing can be just as important as physical treatment.  

[00:17:35] Matthew Lederman: And we have all sorts of. talks and material around the impact of how you show up and how you think and perceive your environment and the impact that can have on your physical health. 

We're not going to get into that today, but maybe that's another topic we can cover another time. But it's, it's so true. It's really amazing how much data there is around how you show up. mentally and spiritually and how that [00:18:00] affects everything from gene expression to inflammation to blood flow to, uh, uh, cortisol and adrenaline and all sorts of. 

Hormone release. It's, it's really amazing.  

[00:18:13] Alona Pulde: In fact, our wonderful audience is an opportunity to engage you. If that topic resonates with you, shoot us a, a word, let us know and, uh, we'll prioritize getting that out.  

[00:18:25] Commercial Break 
 

[00:18:25] Matthew Lederman: Yes. All right. So we jump, jump into some letters. Letters from our listeners.  

[00:18:31] Alona Pulde: Let's get into letters from our listeners. 

Dear Weeby parents, I've been doing everything I can to help my son manage his chronic migraines. We've tried every treatment recommended, but nothing has worked long term. I feel like I'm failing him. How do I cope with the guilt that comes with not being able to fix my child? Oh, yes. And have we been there personally, recently, it is first and foremost, so hard, so hard. 

When one, we put the expectation on ourselves, it is up to us to fix a problem. And then when that doesn't happen in the way that we imagine, we are failing, failing as people failing as parents. And the emotional weight of that is so heavy. So I think this is where that RAIN tool can be so, so very helpful in just taking a pause to acknowledge the weight that, that all of that carries. 

[00:19:49] Matthew Lederman: Yes. So the RAIN, recognize, allow, investigate, and nurture. So it's super [00:20:00] helpful. And I think just to help people. Just a little bit more on that since we've mentioned it a couple times again You can hear it in the episode from last week, but recognize what are you feeling allow that some some space? to actually feel those emotions Investigate the story and the fear and the feelings and needs behind that and then nurture with compassion and additional connection and support You know  

[00:20:27] Alona Pulde: what? 
 

I just connected to That it sounds, again, so simple and kind of like a duh moment, but, but at the same time, I, I didn't think about it before when I am living in a state of guilt and worry and frustration and fear, it's kind of the equivalent of sympathy over empathy. I am actually engrossed in myself. 

Not in my child, um, in the same way that when I sympathize with someone, I bring it back to me. And one of the gifts that RAINN can give you is you give yourself the empathy to allow yourself to now have availability to empathize and focus on your child and not yourself and your, what, what's happening for you and the impact on you. 

[00:21:27] Matthew Lederman: It's such an important thing for parents that guilt does not. heal or serve. It's a feeling that can come up and it needs a lot of work and support. But when people say, I'm so sorry, I feel terrible, that that is not healing or supportive. Yet we're taught often that if you did something wrong, you should feel terrible about yourself. 

So we teach people that that's how you handle it, but that's, that's actually not healing to [00:22:00] the other person. So it's a little confusing, but it's a very important topic, I think.  

[00:22:04] Alona Pulde: Yeah. Yeah.  

[00:22:07] Matthew Lederman: So let's jump into another letter. Yeah. Hi, Dr. Hi, Dr. Poe and Dr. Lederman. My daughter has a rare immune disorder, and I can't stop researching treatments. 

Every time I find a new lid, I a lead. I think this is it, but then I hit another dead end. How do I stop myself from spiraling into this obsessive research cycle? So, anytime your focus is on how do you stop yourself from doing something, or if you're a parent, how do you stop your kid from doing something, it's the opposite of where you want to go. 

You really want to connect to the need, the feelings and the needs that you're trying to meet with that action. And if you say your goal is to stop that action, you're basically telling yourself or the other, or your child, that whatever they're doing to meet needs, That need doesn't matter because you just want them to stop. 

So I think the way in when you're, uh, researching and can't stop yourself from researching is to have compassion for that part and empathize with the part of you that is trying to meet needs through this action or this strategy of researching tirelessly.  

[00:23:13] Alona Pulde: And what are those needs? And some of the needs that come up for me are needs for competence and needs for peace of mind. 

[00:23:21] Matthew Lederman: Protection.  
 

[00:23:22] Alona Pulde: Protection. And when you connect to those needs, what you notice is that, that, uh, Obsessive, for lack of a better word, um, that desire, that drive to be constantly researching is one of many, many strategies and actually may be counterintuitive to the disease processes because, like we mentioned, chronic disease, not only is it unpredictable, but it is long term, often doesn't resolve. 

In just a day or [00:24:00] two. So jumping from therapy to therapy to therapy doesn't actually give any of those therapies time to potentially work.  

[00:24:09] Matthew Lederman: And there's this idea that when you're often, I think what fuels this constant researching is if I can just find the one solution, it'll fix all the problems and then I can relax. 

Now, maybe you'll get lucky and find something that is the solution and does reverse that problem, but it doesn't teach your body how to relax. In the, in, in the chaos, because even if you fix that solution, this could, if it's a chronic condition, it can come back. There can be other issues that come up. So it's, it's a, a coping strategy that maybe once in a while can quote unquote work at least temporarily. 

But long term, it's never the most effective strategy, in my opinion. And it's like that quote, learn to dance in the rain instead of waiting for it to stop raining.  

[00:25:00] Alona Pulde: Absolutely, because when you have kids, it never stops raining. There's always some potential worry. Worry about their well being, worry about their safety, worry about their security, worry about, you know, they're, it's an endless list. 

of things that we can worry about. And once a child, just like you mentioned, has chronic disease, that doesn't go away, even if, even if, and when it is in remission, you know, the, the worry and the fear, will it come back? What will that look like? How do we prevent it from doing so? Um, so I love that quote. 

And I think it's so important to remember and really easy to forget when it's, you know, monsooning and, and you have to remember. To get, get that umbrella out and those rain boots and go dance in the rain.  

[00:25:49] Matthew Lederman: Yeah. And we have. the same issue around financial security as we do around health security. 

There'll be so many, I have clients that I work [00:26:00] with that will, you know, say, I thought that when I got all this money, then I would have, I would feel secure and I'd stop worrying and I'd be happy. But then they started worrying about losing the money. So it's almost like, even if you get the remission, then you're going to be worried about Then getting a flare again or preventing another one. 

So, so there's this worry that never goes away. If your inner peace is attached to having zero problems, zero conflict, zero challenges. If you can connect your inner peace and make that available to you, regardless of what's happening outside of you. All of a sudden, life starts to get a little better.  

[00:26:42] Alona Pulde: I, I love that. 

And I think that that, um, advice lends itself well to our last letter, which is, Hello, I'm struggling to maintain my marriage while caring for our child with epilepsy. My partner and I are constantly on edge and arguing about how to handle her care. How do we stay united in the face of so much stress? 

And I think part of that is what you just mentioned. It's that really leaning into, you gotta dance in the rain. And, you know, so much of our worry is our worry about what's going to happen in the future. What's going to happen in a few hours. What's going to happen if we don't fix this. And we lose sight of what's actually happening now. 

Now we are here. Now we are with our partner. Now we are with our children. You know, now we have an opportunity for connection. And we can make that choice. Dance in the rain or wait till it's done. But it may not be done for many, many months to years.  

[00:27:56] Commercial 
 

[00:27:56] Matthew Lederman: Yeah, I think this, this idea of done is more of an illusion than a [00:28:00] reality. 

And finding ways to meet needs for connection again, it's around needs for connection and you need to have time to connect to yourself. You need to have time to connect to your partner. You need time to connect to your kids. And when you and I. Found a strategy. My favorite strategy is when we came up with the thinking couch or the feeling couch instead of the thinking chair, and it was because you would want to connect small moments all around the day. 

And I had a hard time because I was in sort of my head, I'm thinking, I'm working, I'm, um, there's an intensity, and you would feel distance, and then I would feel pressure, I gotta talk about feelings, and I don't want to talk about feelings right now, or I would give you like a quick answer, or it wouldn't be a heartfelt, even if I, it was more of an intellectual connection than a felt connection, and we realized the way we connect is a little differently, and I need to unstick myself, sort of pull myself out of the chaos, Because I was feeling pressure to stop the chaos, or if I found the solution, the chaos would go away, and then I could connect with you. 

So I would work harder to try and create that time where we could connect, versus, hey Matt, pause the chaos. Step out, physically step out, let yourself feel, let yourself connect, look, you know, look into each other's eyes. Finish connecting, and then I step right back into the chaos. And I'm still working on decreasing the chaos and making it less chaotic. 

But boy, did it create a lot of relief when I didn't have to get rid of the chaos. Sort of my old go to habitual, uh, coping strategy of intensity and But then also when I had a clear way of connecting with you. So if you might say, Matt, I'd like to connect now, or you ask me how am I feeling, I would say I can give you a quick answer now, or do you want to go over to the feeling couch? 

And you would say, let's make an appointment to go on the feeling couch. So we found a way that worked for both of us. And I think families, and I recommend people [00:30:00] trying to find that way, different strategies to meet your need for connection.  

[00:30:04] Alona Pulde: Yeah. And I think the RAIN tool is helpful there too, because sometimes You know, getting yourself to a space where you're even open for that connection makes that connection more possible and fruitful. 

Um, so really check that out, listeners.  

[00:30:21] Matthew Lederman: And maybe, you know, listeners, you can come together and try and put a menu together so that when you want to connect, imagine if you hand someone else a menu and say, Why don't you want to pick something from the menu, and it's easier when the strategies are in front of you versus trying to come up with those on the fly. 

[00:30:39] One last thing 
 

[00:30:39] Alona Pulde: I like that a lot. So Matt, what are we, as we're wrapping up, what's the one last thing that we're leaving our listeners with today?  

[00:30:51] Matthew Lederman: The one last thing. When things feel impossible, remember that caring for yourself is not a luxury. It's a necessity. You are your child's anchor, and by nurturing yourself, you strengthen the entire family. 

[00:31:06] Alona Pulde: Oh, I love that. I love that, and I think that's so important to remember. Your impact is not just on yourself, but on your loved ones as well. And that's, uh, when we're in a negative space, but also when we're in a positive space, how that radiates and pays it forward. Um, So listeners, thank you so, so much for joining us today.