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Episode 4: When Your World Changes Overnight: Coping with Your Child’s Diagnosis
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In this episode, we dive into the emotional journey that begins the moment a parent or caregiver hears that their child has been diagnosed with type 1 diabetes. The shock, fear, confusion, and grief that often accompany this news are very real and can be overwhelming. Understanding that this is a form of trauma is the first step to healing, adjusting, and ultimately thriving in a new reality.
Today, we are joined by a special guest, Angie Manske, a counselor who has worked with families managing Type 1 Diabetes for over 15 years. Angie’s compassionate approach and years of experience provide us with valuable insights into the mental and emotional aspects of handling a type 1 diagnosis. She’ll share practical strategies for processing the diagnosis, supporting the mental health of both the child and the family, and finding a new normal.
Whether you’re in the early days after diagnosis or further along the journey, Angie’s guidance and empathy will resonate deeply. This episode is for parents, caregivers, family members, and anyone who wants to understand the unique challenges and resilience of families living with Type 1 Diabetes.
Further Information about Angie Manske:
Reflective Haven Website
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If you enjoyed this episode, please subscribe, leave a review, and share with anyone who might benefit from the Type 1 Foundation’s message.
Further Resources:
Type 1 Foundation Website
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Transcript
Introduction and Disclaimer
00:00:00
Speaker
The content provided in this podcast is for informational purposes only and is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Reliance on any information provided by this podcast is solely at your own risk.
Welcome to the Type 1 Club
00:00:22
Speaker
Welcome to the Type 1 Club. Whether you're a parent grappling with a new diagnosis, a caregiver seeking guidance, or simply someone wanting to learn more about Type 1 diabetes, this podcast is for you.
00:00:36
Speaker
Together, let's dispel myths, break down barriers, and build a community of understanding and resilience. Join us as we embark on this journey together, because with knowledge, compassion, and support, no one should ever feel alone in managing Type 1 diabetes. Welcome to the Type 1 Club.
Guest Introduction: Angie Manske
00:00:59
Speaker
Hello everybody and welcome back to the Type 1 Club. I'm one of your hosts, Jackie Kidman. I'm here today with Angie Manske. She is very well known in the Type 1 community. So welcome, Angie. Thank you for having me. Can you please start off by telling us a little bit about yourself and then that will help to create the context of what we're going to talk about today? Yeah, sure. So I am a mental health accredited social worker and a child p psychotherapist.
00:01:30
Speaker
I've been a counsellor for 20 years and I've been working in the Type 1 field for 15 years. So I've seen a lot of changes over those years. And I'm very passionate about supporting families with Type 1 diabetes from babies all the way to adulthood.
00:01:47
Speaker
Some of the great things that I've been a part of is research. I've presented overseas a couple of times at endocrine conferences to doctors to raise the awareness of type 1 in mental health and my own private practice called Reflective Haven, which specialise in supporting families with diabetes.
00:02:05
Speaker
Amazing. What an introduction.
Understanding Diagnosis Shock and Trauma
00:02:08
Speaker
So Angie, we have got you on the podcast today because we thought that it would be extremely beneficial to talk about newly diagnosis and the trauma that we as parents and caregivers go once we hear that our child has type 1 diabetes. So I guess that's the first question for you to kind of dive into.
00:02:33
Speaker
It is extremely intense for most families because I think the thing that happens with diabetes is there's no real warning. Some families have, you know, and another family member with diabetes, but that's not common. And so families will be playing netball or having a Sunday afternoon session, think there's, you know, a few little things that have happened to their child that makes them think, oh, it's something quite not right. Maybe they're growing. It's summer. Maybe they're just drinking more water.
00:03:03
Speaker
And it just takes them by surprise. And I think that that element of the unknown is it just sideswipes families like a wave. And because they haven't been able to prepare themselves, that I think is one of the hardest things around the diagnosis. Sideswipe and wave. Wow. Yeah, I can totally feel that. And then the avalanche as well. You could add that one.
00:03:32
Speaker
It's just people don't see it coming and I think it's hard to prepare your nervous system for that. Yeah, absolutely. I can, I totally get that.
Coping with New Responsibilities and Grief
00:03:40
Speaker
I, just thinking back to when Harvey was diagnosed a couple of years ago and it was just that the disbelief of, no, what, what are you saying? Like, you know, what do you mean I've got to go to an emergency and this is, I've got to learn all this stuff and And I think the other really difficult thing is it's not like you're just getting news. You also have to learn all these really technical medical things and be a scientist when your child gets home. So you're grieving and trying to process everything yourself and what does the future look like while trying to look after a child. And it's very important you do that well, because they can get very sick. So then you've got all this responsibility, but your brain can't even
00:04:22
Speaker
Take in the education because you're in this survival mode of just trying to protect your child and people can describe it as like a free state. Your brain's foggy, become quite forgetful, it's hard to focus and that's because the brain is just trying to survive this moment.
00:04:40
Speaker
Because the brain is very um protective in that when something as devastating as a diagnosis of a chronic illness happens, the brain is in such overwhelm because all you want to do is protect your baby is that you're just looking at surviving in that moment. So any new information, the cognitive parts of the brain that taking in new information, the neurons shut down because it's just trying to get you to focus on surviving in the moment. So you get all this adrenaline and cortisol and other hormones pumping through your system, just so you can fight off something or run away from something because your brain doesn't know the difference between
00:05:20
Speaker
a threat that's in front of you and a threat that you can't
Hypervigilance and Loss of Normalcy
00:05:23
Speaker
control or change. It just knows there's a threat to the system. Yes, absolutely. I can yeah feel that, that thats sort of that fight or flight. So that's just it. You feel like that's just at the start. But for most people, do you feel that that that continues? like Because I feel i felt like that that continued for me quite heavily for at least the first six months of Harvey's diagnosis. It can definitely continue. And what it's called is a hypervigilant state.
00:05:49
Speaker
Well, we feel like we're on the edge of our chair waiting for something bad to happen. And we're in this protection survival mode. So we've got all of kind of our defenses up. We're finding it really hard to be creative or focus on other things in our life. We just want to keep our child safe. So when we're in that state, it is used very hard to give any energy to other things. And that's why a lot of parents, especially moms,
00:06:13
Speaker
end up leaving work in the first six months or dropping it or changing it because they're just trying to work out, how can I survive this? So something's got to go so you can function. Absolutely. Absolutely. And that you use that word grief, which was something that I had a professional say that to me was that you're going through the stages of grief, like the the motions of grief. And I think that we've We kind of associate grief with things like death or you know loss of. But for me, I felt like, yeah, it was it was a um I was grieving the loss of this independence, my own independence, the loss of
00:06:56
Speaker
ah child's independence, the loss of my child's health, the loss of control of lots of things, and that constant worry of what does the future look like for my child now, and just that constantly playing over and over in my head, but also kind of not understanding how I move out of it. a The brain likes to solve problems.
00:07:21
Speaker
And it's very unsatisfying type one diabetes because no one can give you a clear answer as why, but your brain will constantly search for that or try to get ahead of it. Like, okay, well, i if anything else I can predict and minimize, I will. And so a lot of parents, especially moms, talk to me about constantly scanning for other problems to try to get ahead of it, to try to minimize it, to change the outcome, like another illness or something else in the family happening.
00:07:49
Speaker
And so they can have that hypervigilance and they're grieving, but they're also, you know, it's interesting that you say that it sometimes can be shocking when someone says you're actually grieving to be able to validate that feeling that you're experiencing.
Recognizing Family Trauma
00:08:05
Speaker
And I think another word that's important to talk about today is that trauma. Your child being diagnosed with a chronic illness is a trauma.
00:08:16
Speaker
Regardless of how they diagnose, it might've been a relatively quick diagnosis with no DKA, compared to some families who have gone through ICU and have almost lost their child. On the spectrum, it's still trauma. Of all the things that you have to try and get your head around, around supporting your child and helping your child to navigate this chronic illness for their lifetime. And I think it's important to validate that. And I've even had counsellors that have had a child diagnosed And it wasn't until we had counseling and I said, you know, you've experienced a trauma. And I feel like that's so true. For some reason I put trauma in a different basket of something else, but actually I am. And then she was able to actually just be kinder to herself and appreciate that when you're going through grief and a trauma, you're not going to be able to do all the things that you were doing before. And it's okay.
00:09:11
Speaker
to allow yourself that space to grieve and to heal that trauma? It's hard, I think, as a parent, though, because you feel like you're not the one who's technically going through the actual diabetes, but you're the one who's having to um you know manage it as well. But you kind of think, wow, what's going through for my child as well? But we'll talk about that in another episode. But you kind of think, well, you know it's him that's got the diabetes. like He has to deal with it every day. But but it's actually, as the parent,
00:09:41
Speaker
you're having to deal with it every day as well, particularly when they're little. I mean, I'll still, even even as teenagers, I think you're still more so having to deal. But I think as a parent, there's ah it's a different type of love. And if something happens to our child, it feels it happens to us. We're so connected to them on every aspect. When your child is hurt, you feel hurt. There's this beautiful bond And I suppose the risk of all those, all that love is that when they're grieving, we're grieving because we just want to protect them and we feel responsible to protect them. And so there's that different element of the guilt and the what ifs and have have I let you down. And so all of that gets triggered as well. Even though we know there's no logic to that, we still feel some sense of responsibility.
00:10:35
Speaker
Don't ignore the four. The four early warning signs of type 1 diabetes, excessive thirst, frequent urination, unexplained weight loss, and extreme fatigue. If you or someone you know is experiencing these symptoms, don't wait. Get checked by a healthcare care professional. Early detection and treatment are key to managing type 1 diabetes effectively.
00:10:59
Speaker
Oh, you're making my eyes well up again.
00:11:04
Speaker
Just those words come back to you and you think, yeah, that's just how I feel and felt and how much you would just want to take it away from them if you could. For me personally, like I, I mean, we had a lot of family and friends support and I know there was a lot of stuff out there to connect, but I almost had that little bit of it, like of, you know, particularly kind of six, post sort of six months of diagnosis that and this little bit of shame of like, why can't I get my shit together?
Stress of Technology and Seeking Support
00:11:34
Speaker
You know, like that, you know, we've kind of been doing this for six months and you know, like it should be getting easier. But I found that I got this hyper fixation as well, where I would, I would be checking my phone all the time. I had to work out strategies to put some serious kind of rules around it. ah Because we've kind of got so much access to technology now.
00:11:58
Speaker
that it almost can make things, it's amazing, completely amazing, but it can also kind of make us constantly focus on that sort of all the time. um And I kind of got to the point where I was just like, oh,
00:12:15
Speaker
you know, this can't be normal. I can't keep doing this for the next, you know, 10 years, like really, but I didn't know how to get out of it. And I was also very worried when you talk about looking for something else. I was also very worried about myself getting sick. So I was ignoring some of the obviously stress signs that were obviously going through with my body. And remember, I was started to get like UTIs and you know like i I put on a lot of weight and you know like I was just ignoring my own health because I was so hyper focused on Harvey's health. And I ended up going to my GP and saying, I need help. I need to talk to somebody. I'm just i'm not um not coping with this.
00:12:57
Speaker
which I feel is ah a tough thing for us as parents to do because we kind of think, well, we're not the ones that are directly going through it, but we are the ones that are directly going through it kind of thing. But I have to say by me making that call and knowing that my mental health wasn't great and that if I'm not great, then my kids aren't going to be great, that I was at that kind of like, I need some external support here. Yeah, totally. You need someone else to just be on the outside and say, have you tried this? And it can be so obvious. And you're like, oh, I know all that. I didn't think about doing that. But you're so tired. Insomnia is another thing that is really common at diagnosis as well in trying to trust the technology and trust that your child's safe at night. And so that is really hard to switch off.
00:13:51
Speaker
And because you're under quite a large threat on your family, it's hard to trust the world. It's hard to allow your body to rest, to sleep and say it's going to be okay because you've got one eye open. And I think that impacts your ability to just use strategies for anxiety. So what you're able to do before when you're anxious really gets diminished when we're tired. We just don't have the same accessibility to our skills. So even though we've been, you know, experiencing anxiety before,
00:14:21
Speaker
And we've had some ways to manage that when you're not sleeping well for weeks, potentially months. And for some moms that I've spoken to years, it's really hard to pull those resources. And so I think that's really courageous of you to be that vulnerable, to ask for help. Because like you said, you're not just going to be able to build your own resources and ability, but there is a definite impact on the rest of the family.
00:14:48
Speaker
Yeah, absolutely. And I was lucky enough to be in a position where I could afford to pay for that. And I know that that's not available to everybody. And I think we meant I mentioned before that, I felt like and when we're in hospital or through the hospital visits, there is social workers there. and But I felt like that was more focused on Harvey, which is great all for that. But I felt like I was the one that needed the help. But because Harvey was sitting next to me, I felt like I couldn't i couldn't actually say,
00:15:18
Speaker
I'm actually really struggling guys. And then because I was worried about what he, like, you know, you try and protect them so much because i you don't want them to feel guilty for them making you feel the way, you know, like, like that because of what they've got, the pressure it's put on you. And I remember even just having ah my social worker that I found was amazing. And even just having someone to spell a date to say, geez, that's tough.
00:15:45
Speaker
that is really tough, like what you're going through. is so tough. You know, I mean, the first few sessions I just spent crying. So, you know, just being able to even have someone, you know, sit there and just just support you while you cry was um in a professional way. It was quite, it was quite helpful, too. But um but yeah, I did find that valuable. And I know in the past, I've reached out to other moms who I can see are going through the same thing, who have got newly diagnosed and said, look, if you can talk to somebody,
00:16:18
Speaker
And their their feedback has been, I just can't do another appointment. I just can't, you know, so I guess it is interesting, isn't it? It's also just about mums and dads validating their mental health as important because you can have, there's so much accessibility around online sessions. You don't have to go anywhere to have your appointments these days. And one hour a fortnight,
00:16:47
Speaker
can literally change your brain pathways and your chemistry, which impacts on your child's directly.
Prioritizing Mental Health
00:16:55
Speaker
Because I have, I counsel parents and all their child's anxiety and depression minimizes just by seeing the mum, just by talking to the mum. And a lot of parents will want me to see the child. And I'll say, I actually don't need to see the child to make the child change and improve themselves. I just need to work on the parents.
00:17:16
Speaker
and support the mum especially. And the reason why that is is because if the mum and dad feel supported and you upskill them with knowledge around anxiety and how to express themselves and release their anger in a healthy way, they have all the skills to be able to support the child for a lifetime, not just for this episode of anxiety, but forever because they'll have those skills.
00:17:43
Speaker
And even when we had free counselling sessions, we got a grant and we had 500 counselling sessions offered across the country. There were still people that, so even though it was completely cost them nothing, didn't book in, not just because the financial there was no financial strain, they were too busy. And so we really need to start to prioritise mental health.
00:18:06
Speaker
because they're too busy and the other things that people say are a barrier, it'll always catch up with you. We can't get away with not addressing our mental health. Just like you had mentioned that your body starts to get louder and louder with clues saying, please, can you just help us out here with this nervous system? We can't operate like this for that long. And we just we just can't get away with it. So it's so important to prioritize um mental health. Which is in general anyway. I sort of feel like not just not just with type 1 diabetes diagnosis, it's in general I feel like as a society we need to and I think Australia maybe is a little bit more because I remember saying to my girlfriends I was like I've started seeing a social worker and oh my god I'm like a different person like why do I not do this sooner?
00:19:03
Speaker
and I think we we sort of feel like it's a it's not something that we do as Australians, I don't know, but in America it seems like... Oh, in America it's kind of like fashionable to have your own psychotherapist. It's kind of like, oh, you must be, you know, hip. Or in Australia it's like, oh, what's wrong? And we we're slowly changing those conversations and culture in Australia. And I think just like you said earlier, why am I not, you know, over this now? Why am I still struggling?
00:19:33
Speaker
And it's so hard to actually realize that you're actually exactly where you should be in terms of still finding it overwhelming because it is. It's gigantic. And to be able to sit with that and say, I am doing an incredible job. I'm still getting the kids to school. The house looks like it's moving in some sort of direction.
00:19:57
Speaker
kids are being fed. I had a shower today. that's Amazing. It's like, I think just being able to step back and look at the achievements, it's so easy to look at, oh, well, I don't um feel completely joyful about my life right now. Maybe there's something wrong. Or actually, it's really, really normal. So can you just think before we kind of and These are these are little quick mini series because there is sort of, you know, just to help people to realise that there is a process that your, you know, your body and your brain goes through, and that there is support out there to help shift if you are feeling stuck in those sort of areas.
Managing Anxiety Effectively
00:20:38
Speaker
um And I can highly recommend it. um Is there anything that you would like to just kind of
00:20:45
Speaker
give a little bit of quick advice to assist somebody who out there who just maybe just needs that little push or little support. I think that your body um know knows you well and knows you what knows what you need. So just listen to your body. Your nervous system will guide you if you've had enough support or if you don't have enough. So just stopping for a moment in the chaos and just asking yourself, what's happening with my body? What's my body trying to tell me? What do I need right now? And trying to find a way to help your nervous system to reset and to not be sitting on the edge of the chair waiting for the next disaster. You don't have to be sitting with all that armor and shield up every day and night. It's exhausting. Your arms will get tired.
00:21:38
Speaker
So knowing how to hold the shield differently, knowing how to protect your family in a way that doesn't mean that you're on the edge doing everything. Be vulnerable, ask for support because it is there, it is accessible. And I think also just validating what incredible job you're doing. And if you've having those moments where you just feel so anxious, you feel very sick of just staring at that CGM, move your body.
00:22:07
Speaker
go for a walk around the block, whatever you have access to, to move it. Because when we are having a lot of anxiety, we get a buildup of all of this energy. And if we're just sitting at home looking at a phone, it's got nowhere to go. So it just builds toxins in our body and makes our muscles tight. So when you're feeling that wave of anxiety, move.
00:22:32
Speaker
move in any way that you can that's accessible to you. If it's freezing cold, clean the house like crazy, that's always a benefit no matter what's happening. Walk the dog, go for a swim, hike, canoe, whatever is your thing, just move so then that energy doesn't get stored and doesn't build up. So good, such good advice.
00:22:53
Speaker
Angie, thank you so much. I know we could keep talking for forever, but um and we probably will have lots of chats like this anyway. Angie will be back with us over that the time, and she'll pop up and do some little series like this.
00:23:07
Speaker
um so we can sort of specifically target some of those sort of mental health kind of questions and areas. But I really wanted to thank you on behalf of the Type 1 community for all the work that you do um with families and with children. And thank you so much for your time that you've given today to come and share a little bit more about what our bodies and our brains go through when we have a newly diagnosed child.
00:23:35
Speaker
So thank you so much, Angie. My pleasure. Thank you for having me.
Conclusion and Call to Action
00:23:42
Speaker
Thank you for tuning in to the Type 1 Club podcast. We hope you enjoyed today's episode and gained some valuable insights. If you like what you heard, be sure to subscribe to our podcast on all the platforms so you never miss an episode. We also appreciate it if you could leave us a rating and review. It really helps us to reach more listeners just like yourselves. For more updates behind the scene content and to join the conversation further, follow us on Instagram and Facebook, the Type 1 Foundation, or visit our website type1foundation.com.au. Thanks again for listening and we will see you next time on the Type 1 Club.