Transcript for
Nurturing wellbeing when a child experiences chronic illness

Narrator (00:02): 

Welcome to the Emerging Minds Families podcast. 

Nadia Rossi (Host) (00:05): 

Hi, I’m Nadia Rossi, and welcome to the Emerging Minds Families podcast. Before we start today’s episode, we would like to pay respect to the traditional custodians of the land on which this podcast is recorded, the Kaurna people of the Adelaide Plains. We also pay respect to all Aboriginal and Torres Strait Islander peoples, their ancestors, and elders past, present, and emerging from the different First Nations across Australia. 

(00:33): 

Today’s episode is part one of a two-part series where I’m joined by Nikki, a parent of two young people living with chronic health conditions. Nikki shares her family’s experience of supporting her son after his diagnosis of type 1 diabetes and how an ongoing chronic health condition can shape a child’s day-to-day life, relationships, schooling, and mental health, as well as the wellbeing of parents and siblings. We talk about the early days after diagnosis, the learning, the appointments, even the small wins, and the moment when the daily reality sets in and families can begin to feel grief, overwhelm, and isolation. 

(01:11): 

Nikki reflects on what has helped her family through the ups and downs, leaning on support networks, finding peer communities who understand, making space for a child to be more than their diagnosis, and gently adjusting parenting support as children grow towards independence. And so, let’s jump into this conversation with Nikki. 

(01:34): 

Welcome, Nikki, and it’s great to speak with you today. Thank you for joining us. 

Nicki Walsh (Guest) (01:39): 

Thanks for having me. 

Nadia Rossi (Host) (01:40): 

Nikki, at Emerging Minds, we acknowledge that families come in many forms. So, what we like to do is start with asking our guests about who makes up your family. 

Nicki Walsh (Guest) (01:52): 

Yeah, sure. So I think my immediate family is myself and my husband, Greg. And we have two children. So, I have an 18-year-old daughter called Emily and a 15-year-old son called Riley. And then we have a fairly big extended family and support network, which we’re very lucky to live very close to as well. 

Nadia Rossi (Host) (02:13): 

Oh, that’s wonderful to hear that you have that. So I wanted to ask, when your son was diagnosed, can you talk a bit about that and take us back to the time of his diagnosis and how he processed the diagnosis and also the effect it had on him and yourself? I know that’s a big question, but you know? 

Nicki Walsh (Guest) (02:30): 

Yeah, yeah, no, that’s okay. Riley, I guess to set the scene a little bit, before Riley was diagnosed with a chronic illness, he experienced some mental health challenges from when he was about 10 or 11 years old. He experienced pretty severe anxiety and panic attacks. And unfortunately, those were all around his health. And so, then when he was diagnosed with a chronic health condition, it kind of all jumbled in together and became this really complex web of feelings and emotions. 

(03:00): 

So from when he was 10 or 11, he has been living with anxiety and panic attacks. And then when he was 12 or the week after he turned 12, he became critically unwell. And we went to the hospital and he was diagnosed with type 1 diabetes and we ended up staying in the hospital for a week or two. And yeah, I guess our whole lives changed and his whole life changed in terms of what it was like before and now what it’s like after. 

(03:29): 

And I guess initially his view on it, he was quite positive. And I don’t know whether that’s common or not, but he was almost grateful, I think, that we’d caught it in time and we’d gotten to the hospital in time and he didn’t actually have to go to the intensive care unit. So he was quite positive about his diagnosis. While we were in the hospital, he did a lot of learning. He was able to talk about how he felt and talk to his friends about what the diagnosis was. And so, we kind of went through the first couple of months feeling almost like, we’ve nailed this. This is so good. All of the mental health support he’d had prior to his diagnosis has really paid off and he’s been able to accept this diagnosis and really just move forward in a positive way. 

(04:18): 

So I think, yeah, we’re really excited that that had happened, but what we didn’t anticipate happening was that within six months of the diagnosis, when it became an everyday challenge and school was challenging and he wasn’t feeling good all the time, that he really just hit a bit of a slump then. So I think initially there was just so much to learn. So it was like, you were busy all the time learning, learning, learning. And so, it was not a necessarily super negative kind of experience, but for us that came later. 

(04:49): 

And for me, it was really the same. I was worried. Initially, I was really anxious, but once we started all of the training and the learning in the hospital for the first few weeks and going to, we had daily appointments for a period of time, I was like, “We’ve got this.” We’re both smiling, laughing. We’re nailing it. And then it wasn’t until we had a bit of space and time to think and reflect that things really settled. And I became really probably sad for him and grieved kind of all of these things that had changed. And he experienced the same type of thing. 

Nadia Rossi (Host) (05:25): 

Yeah. You’ve described it so wonderfully and painted such an amazing picture of that process. I wanted to ask what you’ve learned about that experience, how it can affect your child’s mental health in that having an ongoing condition. 

Nicki Walsh (Guest) (05:39): 

And look, I think I probably felt initially that we were maybe in a better position or maybe that was my mind giving me positive things to hold onto. But I was like, “We’ve been on this journey.” His older sister had been through a mental health and chronic illness journey herself. So I’m like, “We’ve got the tools. We know what we’re doing. We are the best people to manage this difficult scenario.” 

(05:59): 

And I don’t want to say that I really felt that we were immune to it, but I did feel like any challenges that popped up wouldn’t be a big deal for us. And what I learned was that actually it just brought a whole bunch of different challenges that we hadn’t experienced before and that it’s such high emotion and such high emotional kind of load when you have a child that has a life-threatening chronic illness and an illness that will never get better as far as we know right now. I hadn’t dealt with that before. 

(06:35): 

And so while I was thinking, “Oh, I’m in the best position, I might’ve been in a pretty good position because I did have some tools,” but I really underestimated how much it was going to impact our entire family. I think that the message for me in it is that you can’t prepare for something like this. You could be a psychiatrist or a psychologist that works in medical trauma and stress, and you can still experience just this awful difficulty of not only your child’s mental health, which is very, very normal for them to experience difficulties because this is a life-changing thing, but the whole family’s mental health. And every child will need to manage that differently and every adult. 

Nadia Rossi (Host) (07:16): 

Yeah. I think what you mentioned before about your daughter having a condition and then also your son having a condition and kind of walking into this thinking, “Oh, we’ve got this and we’ve got these tools.” But every child is different. And I think it’s that saying of, I have two children of my own and you go, they’re raised under the same roof by the same parents, in the same conditions, but they all turn out different or they have different needs. And actually they are just different people. 

(07:44): 

I was wondering how you supported him through the diagnosis and how that shifts over time. 

Nicki Walsh (Guest) (07:50): 

Yeah, I think initially… So my husband and I think it’s important to note that everyone has different strengths. And even if you might have a partner or they might have different kind of strengths to you when it comes to parenting. Or if you don’t have a partner, you might have a grandparent or a close friend who shares that role. So I think the important thing to note is that I haven’t had to do this alone in the areas that I’ve struggled with. Thankfully, my husband and I are a bit of yin and yang, so he’s kind of good at the things that I’m not good at and vice versa. 

(08:21): 

So I think initially upon diagnosis, I was really in a role of just, “Everything’s cool. We’ve got this.” Just confidence. Just exuding confidence to hear my son needed me to take charge and be like, “Everything’s fine. We’re going to manage this. We got this. We’re fine.” That’s kind of the role I played for the first few weeks, I think, and very much an organiser. So we’ve got this appointment and then we’ve got this and I’m buying all the equipment and we’re setting up diabetes stations in our house and I’m connecting with peer groups on Facebook. And it was really quite an action-oriented phase. And he needed that. He just came along on the journey and I think he was quite comforted by the fact that I was like, “This is cool. We’ve got this. We’re super confident.” And he absorbed that. 

(09:07): 

My husband was more, I think at the time of all of that, a bit more of the emotional nurturing role, and that’s not my forte. I’ll be very honest, as a parent, we have strengths. My husband’s more of the emotional nurturer than I am. And so he was the one who would go, “Hey, mate, let’s cuddle on the couch, watch a show.” While I was buzzing around doing all of the organising. So he had that. 

(09:32): 

And then as time went on, I think I’ve remained fairly steady to that action-oriented, confident advocate role because that’s just my style and that’s my personality and that’s my parenting style. And my husband’s remained more of the just talk about whatever and we’ll just cross that bridge as we come to it. 

(09:54): 

And so I think the thing that made me think about this when you were asking the question was that my son sees mental health professionals regularly. And he won’t mind me sharing this because I’ve shared it before, but he was in a recent session with his psychologist and his psychologist was like, “Tell me about your mum and dad and how they help you with your condition.” And he said, “Mum is great at distracting me. She’s funny. We have a lot of fun together. She does all of my organising and takes me to appointments and gets all the stuff from the chemist. But when I’m really struggling and I want to talk about it,” he said, “that’s where my dad steps in for me.” And he said, “It’s not that I can’t talk to my mum, it’s just that I go to them for different things.” 

(10:35): 

And the psychologist said to him, “That’s essentially divide and conquer. And it’s really great that you can recognise that your parents have strengths and different talents, I guess, and that you know that you can go to both of them for everything, but there are people you feel more comfortable in different scenarios with each of them.” 

(10:52): 

So I think I’ve remained relatively steady in my action-oriented advocacy stuff, but I’m definitely more low-key now. I used to be really, “Have you done this? Have you done that? How are you feeling? Let’s do this.” And now I’m realising he’s growing up, he’s 15, he’s going to move out one day, so I need to take a step back and allow him to start self-managing. But I’m still the one who will order all of the supplies. And if he’s having a down day, we’ll have fun. We’ll watch some really funny videos. And if he wants to talk about his feelings, he’ll go and have a nice little chat with his dad and they’ll have a drive. And that’s awesome. 

Nadia Rossi (Host) (11:26): 

It seems like you’ve found such a wonderful balance and recognising each other’s strengths and how you can both support your son instead of trying to push each other to do one or the other thing. I was wondering if you could talk a bit to parents that are listening today and what the key things you would want other parents who have a child with a serious illness to know? 

Nicki Walsh (Guest) (11:48): 

That’s such a tough question because anything that I’m saying now is just my opinion, and everyone’s situation is different. But I think broadly it’s, you’re just doing your best, right? None of us go into this journey as a parent of a chronically ill or disabled or child thinking that we’ll just give it a bit of a crack. We all go into this 100%, even though we’re terrified, 100% behind our children, advocating, wanting them to be as healthy as they can be and have the best life that they can be. 

(12:19): 

And I think usually in life when we try our hardest at something, you see the payoffs relatively quick. You try really, really hard at studying, you’ll get a good mark. You try really, really hard at exercising, you’ll become fitter. And I think the problem with parenting any child, any child at all, but particularly a child with chronic or additional need, it’s not that linear. Putting all of your effort into supporting them and helping them manage their condition and helping manage their mental health doesn’t mean that next week you’re going to see an improvement in their health or an improvement in their mental wellbeing. You can influence it somewhat by doing the right things, making sure things are taken at the right times and appointments have gone to. But at the end of the day, it will throw curveballs many times a day, multiple times a day, and there’s nothing that you can do to control it. 

(13:07): 

So I think talking to your own supports, but also talking to your child’s health professionals is really helpful because Riley’s team, and I mean his team in a broad sense from both his condition and his mental health and his school and all the rest of it, are really good at bringing my anxiety down to earth a little bit and going, “You are. You are doing amazing. You are trying your best. And we can’t ask for anything more from what you’re doing right now as a parent.” 

(13:34): 

You can’t control chronic illnesses. This is never going to be a smooth sailing journey. And you have to accept that while you’re doing your best, you’re not always going to see the benefits for that really quickly. It might be longer term because as Riley will have really bad periods with his diabetes due to puberty and hormones, due to illness. 

(13:53): 

I just think as a parent, being gentle on yourself and realising that actually there is things that you have to do and there is appointments you have to make and things you have to follow up with your child to make sure they’re doing, but don’t put all of your… or try not to. It’s easy for me to say, I’m a few years down the track, but try not to put all of your self worth or how well you feel about yourself into managing a condition. Because no matter what condition it is, you don’t have control as a parent over how that condition goes. And so you can only do what you can do. 

(14:28): 

And I think that’s what we have to tell ourselves is, “I’m doing the best that I can do. I’m supporting my child’s wellbeing mentally as well.” But there are going to be ups and downs and there are going to be things you miss. There has been massive things where something’s gone wrong and I haven’t noticed because I’ve been busy with my other child or at work. I’m being gentle on myself and going, “It’s okay. I’m perfect all the time.” And if you’re getting lots and lots of anxiety around not being perfect and not being able to control things, I think that’s the time where it’s better for you and it’s better for your child that you go and seek some additional support around that. 

Nadia Rossi (Host) (15:01): 

That’s such a great message in families to hear that this is not something that you can control and that it is something that you can prepare as much for. But as parents, you want your kids to be happy and you want to be able to fix everything and you want to be able to manage everything. And it’s just, this is a situation where that’s just not possible, but to give yourself grace in that. 

(15:21): 

You mentioned your son having some friends that have a similar condition to him. Is that something that you explicitly sought out for him to have around him? And how has that affected his management and growth with his illness? 

Nicki Walsh (Guest) (15:36): 

Yeah, look, definitely something that we sought out. Although when he was diagnosed, I had a couple of friends my age, so adults that had the same condition. And they were wonderful at reaching out and going, “If he ever needs to chat.” But I mean, he was 12 at the time and he’s like, “I don’t really want to go chat to a 37-year-old mum of three.” But I think it’s still helpful because he was able to see these adults having normal lives. 

(16:04): 

But I really connected in with a lot of support organisations. So they exist for most chronic conditions as well, different Facebook groups of local area, parents of kids with type 1 diabetes, all of those types of things. And it’s been a really amazing experience, I think, probably more for me than him. We’ve been able to go and do camps. We travelled to Canberra last year with Breakthrough Type 1 Diabetes, which is a charity, and we went to Parliament House and advocated for research funding. And through that experience, he met a really lovely friend who’s his age that was diagnosed at the same time. And it was so lovely to watch him sit there and they were eating and going, “Oh, how much did you inject for this muffin?” 

(16:53): 

“I inject…” Things that you just can’t do with people that don’t have diabetes. And me and this child’s mum really were like, “Oh my God, bless…” It’s so nice for them to be able to connect over something that he doesn’t really get to talk to. Or when he’s talking to people, it’s usually laypeople, like family and friends that don’t understand it and he’s having to explain it. 

(17:12): 

But I will share a beautiful little story of that trip, not about Riley, but there was a whole bunch of kids that went. And when we got to the airport in Brisbane, there was two little girls, they didn’t know each other. They probably would’ve been about five or six years old, and they both had type 1 diabetes. Their parents were having a bit of a chat and they introduced these little girls to each other and went, “You’ve both got type 1 diabetes.” And they were like, “Oh my goodness.” 

(17:36): 

Anyway, it was so sweet. They sat together on the plane. They were attached at the hip. And then when we got to Canberra to check into the hotel, they were dancing around holding hands going, “We’re the type 1 diabetes girls” And it was the first time either of them had met another child with type 1 diabetes and they just absolutely… You could just tell that it was one of the best experiences that they’d ever had, meeting somebody else that was just like them. And so that was really sweet. 

(18:02): 

Obviously Riley and his mate went not quite that effusive being teenage boys. There was a lot of grunting and some smiles, but I think it has been… And particularly for me as a parent, being able to connect in with other parents has been really helpful practically because sometimes if you run out of supplies, it can be really helpful to have that network where I jump on and go, “Does anyone have a spare sensor? Because we can’t get to the chemist until tomorrow.” And it’s such a wonderful community that people are like, “Yes, I live in this suburb and you come and pick one up.” And it’s amazing in that regard. 

(18:38): 

And then I’m also able to help with the skills that I have support others. So in terms of mental health and having a lot of experience personally with my kids and working in mental health, I find that when parents are really struggling and they reach out online, I can step in and, “It’s normal to feel this way. But here’s some other places you might be able to access. And if you need to chat, let me know.” 

(19:00): 

So I think if there is… And you’re that type of person that enjoys talking to people that have a similar lived experience to you, it’s actually so helpful on so many different levels from practical to emotional to even my son’s social. There’s lots of social events that are organised by different places, Christmas parties and bowling. And he can be quite isolated socially otherwise, so it’s great. 

Nadia Rossi (Host) (19:24): 

I wanted to touch on that isolation because it does, from what you’re telling me, it’s that finding that community and just knowing that you’re not alone from what I’ve heard having a diagnosis and then managing it. And there’s so many things that you and your son and your family take on board that the overwhelm or just the day-to-day life of it could be quite isolating, that your peers not fully ever understanding what you go through. 

(19:51): 

I wanted to talk about Riley a bit, and feel like these camps and this kind of community is definitely an up in his life. But what are some of the ups and downs that he has experienced and as he has learned to manage the illness and how it affects his life? 

Nicki Walsh (Guest) (20:06): 

Yeah, look, I’m going to preface this for everyone listening. We’ve had a pretty rough time lately. So I’ll try very much to temper the downs with the ups, but we’re very much in a down at the moment. And I think it’s important for me to recognise that they’re the things that are going to come easily for me. 

(20:25): 

So I think I’ll start with the ups in that he has grown up emotionally so much. He is just so much more mature, I think, I’m his mum, than some other kids his age because of the challenges he’s had to deal with that are so far beyond what a normal teenager thinks they’re going to have to deal with. And I think his resilience, just to watch that resilience grow over the years and to know that he’s having a really tough time and we’re having a down at the moment. But I know that there will be an up because I know that he has developed this really strong sense of resilience, that nothing’s hopeless, that things are tough, but they get better. 

(21:12): 

There’s a resilience that comes with having a chronic condition and knowing that that is life-threatening and that all it takes is like some poor management or a night out drinking if you’re a teenager and you might not wake up the next day. Which is really depressing to talk about, but I think it has really fostered him to be maybe a bit more responsible and a bit more resilient, a bit more open about sharing his ups and downs. 

(21:37): 

And I think the other up is that it has provided us as a family with a lot more empathy, I think. We had a lot of empathy to begin with. We’ve never been a family without struggle, but this struggle has really helped us to, I think, broadly about anyone who’s going through difficult challenges that may never change, like those real lifelong… Usually you can be in hospital, you can… It’s terrible, it’s awful, but you’d get better and there’s rehabilitation and then you get better. It’s the whole coming to terms with the fact that there’s no getting better. And so you learn to really try to appreciate, which will sounds really wishy-washy and hippy, but you do try to appreciate what you’ve got because Riley will say it really grinds his gears when people talk about recovery from illness, like these illnesses. And while he understands that people don’t mean anything bad by it, for him, it stings because he’s like, “I’m not going to recover.” And so I think having to come to terms with all of that has emotionally made him stronger. That’s a plus. 

(22:37): 

And I think the downs, there’s so many of them, but for us, mental health, number one. A lot of children with type 1 diabetes will experience mental health challenges, and a lot of their parents. I think the research says that the parents are far more likely to experience anxiety and all of that type of stuff. So I think mental health for the family has been much more up and down since his diagnosis. Schooling is really, really difficult. He’s found it very difficult to remain in mainstream schooling. He’s been to two schools since he was diagnosed and neither one of them have really felt equipped to manage not just the day-to-day stuff about his diabetes, but the mental health and attendance. And that becomes really difficult for us as a family because he needs to go to school and we need to go to work and we haven’t found the right fit yet. 

(23:30): 

So I think that’s been an ongoing challenge and it remains an ongoing challenge. And I think because of that, there’s this isolation of because of the schooling and because of his mental health and because of his diabetes, he tends to be quite isolated from peers. And that obviously is difficult for us as parents. We want him to have a normal teenage experience. We want him to go to parties and have girlfriends or boyfriends or do whatever his sister was doing at that age, but he is far more isolated and introverted. And that’s a bit of a mix between, number one, “I don’t want to go out and take all of my equipment and blah, blah, blah.” And then the other element is, “I’m really, really anxious about going out and being away from home. And what if something bad happens?” 

(24:14): 

And so it’s stuff that we’re working through, but it’s certainly been a challenge. And I think for him, he would say a major challenge is people not understanding his condition. And we have tried very hard to support him in the fact that it’s a very difficult condition to understand. But when you’re the one living with it, he’s still getting that, “Oh, did you eat too much sugar?” Or, “I can’t believe you’re diabetic, you’re skinny.” And just a comment like that will take him back ’till the beginning and he’s like, “Will I have to explain this to people my whole life?” Because it’s not something he can hide and pretend that he doesn’t have necessarily because his alarms are going off and whatever. 

(24:50): 

So I think there’s been a lot of the isolation, the mental health strain, and just his futility. I guess the feeling of futility that, “Oh, I’m going to be having these same conversations and people are just never going to get it.” And that’s been the major downs, I think, for him so far. 

Nadia Rossi (Host) (25:08): 

And when he’s experiencing these downs or these things that can trigger those ongoing thoughts or when he experiences mental health challenges, what have you noticed that has helped him to cope? 

Nicki Walsh (Guest) (25:19): 

I think it depends, but it could be things like spending time with us just doing something that’s not diabetes-related. So a lot of it has to do with actually just separating… Not pretending that it doesn’t exist, but when it becomes too big of an issue in his life, stepping back and doing things and not talking about the diabetes and reminding him that we can have this life where we go out and where we watch TV and where we have friends over and not mention the diabetes. We just say to our friends, “Don’t mention it when you come over.” 

(25:53): 

So just reminding him that his whole life isn’t diabetes. He is not diabetes. Yes, it’s a big imposition in his life, but I think what really helps is making sure that he has some opportunities to have some time where he’s just Riley, where I’m not reminding him. So I’ll go, his specialist gave me this really good hint one day where they’re like, “If you are a parent and you’re anxious, you are often reminding them about their condition. Have you done this? Have you done that? Have you checked this? Have you checked that?” And they said, and that’s normal for a parent to do. But for a child, what it does is it makes your whole relationship about the condition. 

(26:30): 

And so they’ve said, “As hard as it is, sometimes when he’s not doing so well, you really just need to step back and just trust.” Do what you need to do, obviously if it’s a younger child, but don’t talk about it. Don’t talk to other people about it in front of them. And sometimes he doesn’t do what he’s supposed to do when we do that, but he also will then go, “Oh, things aren’t going well, I’ll fix it up.” And just having that space, I guess. He’s just a kid. He’s not a diabetes kid. He’s just a kid that lives with diabetes. 

Nadia Rossi (Host) (27:02): 

And having you as a constant in his life, those reminders will come through and eventually so hard to step back and let them figure it out on their own. But yeah, what wonderful advice from that specialist. 

Nicki Walsh (Guest) (27:13): 

They’ve seen it and they’ve seen the significant burden of mental health and eating disorders and things like that in children that have this condition as teenagers. So I’m like, I put my full trust in you. And actually Riley has said to me as he’s grown older, “I hate it when you lead with the fact that I have diabetes.” If we meet someone and his alarm goes off and I’ll go, “Oh, that’s just his alarm. He’s a type 1 diabetic.” I don’t think about it, but he’s like, “I hate that.” He said, “You should just let me say it or don’t say anything at all.” For him, he’s like, “I just want to be a normal kid. I don’t want you to go into a room and say, ‘This is my kid with type 1 diabetes.’ I just want you to go, ‘This is my kid’.” 

Nadia Rossi (Host) (27:48): 

It’s such a balance, isn’t it? But how you’ve done something right there and have those hard conversations with you and tell you that, and then you can go, “Oh, well,” because you think you’re doing the best that you can and you’re doing the right thing by them, and now that he has this voice where he is able to express, “Actually, no, I want to manage it this way.” Find your way through it together, right? You’re never going to do everything right. 

Nicki Walsh (Guest) (28:08): 

And I think my advice to the parents in regard to that is your first response, and my first response, is to become defensive. Like when he says those things like, “Mom, I hate it that you make my diabetes your whole life.” And I want to go, “No, well, I just am trying to keep you alive, mate.” But actually, just zipping it and being quiet for a second and reflecting on what he said. I actually can see it from his point. I think we’ve got to put that defensiveness to the side somewhat and go, “I’m trying to do my best. I am doing my best, but my kid’s telling me that they want me to do something different and I need to respect that if they’re going to grow up to be well-adjusted and confident.” 

Nadia Rossi (Host) (28:47): 

Thank you for listening to part one of this episode. And thank you to Nikki and our listeners for joining us. Please join us for part two where I talk with Nikki about what this journey can mean for siblings and how it can shape relationships with partners and extended family. We also talk about the importance of supporting your child’s wellbeing by supporting your own and the value in reaching out for support. Bye for now. 

Narrator (29:12): 

Visit our website at www.emergingminds.com.au/families for a wide range of free information and resources to help support child and family mental health. 

(29:24): 

Emerging Minds leads the National Workforce Centre for Child Mental Health. The centre is funded by the Australian Government Department of Health under the National Support for Child and Youth Mental Health Program.