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A podcast from the Paediatric & Neonatal Clinical Psychology Service in the Northern Trust supporting the psychological and emotional experience of young people and their families, in living with health-related difficulties, or infants and families who need to spend time in Neonatal Care. The series will focus on providing information and sharing experiences that relate to families who are in contact with the Paediatric & Neonatal Services.
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Paediatric Psychology - Living with Type 1 Diabetes - Aoife's Story
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Hello and welcome to the Let's Talk podcast from the Paediatric and Neonatal Clinical Psychology Service in the Northern Health and Social Care Trust. This series will consider and discuss a range of topics relating to the experiences of children and young people living with health related difficulties and their families.
We also provide a service to infants and families who need to spend time in neonatal care. Along the way, we will be joined by special guests, including young people themselves, their parents, and members of the healthcare teams who support the families. My name is Maeve Cushnahan, and I'm the clinical psychologist working within the Paediatric Diabetes and Epilepsy teams.
With me, I have Aoife Maguire, who is a young person living with type 1 diabetes. So Aoife, there's so much I'd love to know about your experience of living with diabetes and really looking forward to having this conversation with you today, so thank you very much. I was wondering, just as a start, would it be possible for you to give us an idea around some things that might help the listeners to understand your stage of life at the moment and what you're up to and how things are going with you?
So, you're 17? Yes. Is that right? Yes. And, and what are you up to in, in terms of school and social life at the moment? Well, at the minute I'm currently studying, um, AS levels, so I'm in lower sixth. I'm studying maths, English literature, health and social care, and biology. Wow. That's a mix. It is. Yeah. Some people tell me it's kind of an odd mix, but I like the subjects.
Good reason to choose them. Yeah. Yeah. Um, and I kind of hope to, I hope to study psychology. Very good. Not quite sure what path I want to go down yet, but that's the hope. Brilliant. Brilliant. Well, it's lovely to have you here and thank you for taking your time out at this early hour. Thanks so much for having me. You're very, very welcome.
Um, so could you tell us a little bit even about, in terms of where you're at in your family Aoife, who's around for you at home? Um, so I live with my mum, my dad and my twin brother. Um, there's just the two of us. I think it's, it's a very supportive system that I have. I have my grandparents, um, from both sides, and my aunt, my uncles and cousins, but it's a very, it's a very supportive family.
That's lovely. We're all really close. Very, very, very nice. And you're a twin, so you can't get much closer to someone than that. No, you really can't. Tell me a wee bit about your twin. Uh, his name's Jack. We're at the same school. Um, he's very, he's very tech. He, he's all, he's all computers and that kind of, that line of work.
Um, So yeah, he's, he's really supportive of everything I do and I'm very supportive of everything he does. So like we're, we are really close. That's lovely. And am I right in saying Aoife that Jack doesn't have a diagnosis of diabetes himself? He does not, no. So his experience of living with diabetes has been through your experience of living with diabetes? Yeah
So today Aoife, I suppose it's a bit of space for us to have a conversation about your experience of living with type 1 diabetes. And our hope for this podcast series is that families and young people who are living with a health condition will be able to listen in to hear a little bit about how it has been for you.
With the hope that that helps them to sort of feel a little bit less alone, or maybe to be able to relate to parts of your story. Or for some people, maybe earlier on in the stages, just post diagnosis, to think about how things can change with time. Because I understand that you have been living with diabetes for a very long time.
Yeah, I've had diabetes since I was two and a half, so it's coming up on 15 years this year. You were two and a half? Yeah. You think about how small you would have been at two and a half years old. I was very young. Yeah. Um, so I don't actually remember any of my diagnosis. It was all very much on my mum and dad at the start to kind of care and manage for the condition.
And have you heard, because I'm thinking about how family stories get told, you know, we talk a lot about our experiences and particularly those early years where you won't have any memory of that. Um, what do you know about what might've been told about stories of your diagnosis or that time period? I don't.
Um, well, it was actually early summer when I was diagnosed. It was the 19th of June. Um, so, I've, I had all the, like, the typical symptoms of type 1 diabetes. So I was thirsty, I was running to the toilet a lot, that kind of thing. It kind of passed my parents. It didn't really Um, I don't think anything of it because I was out playin a lot, so they kind of put it down, they kind of put the water and the, running the toilet down to that.
Yeah. Um, so it wasn't, it didn't really click. Yeah. For a while. And then I remember one, my mum, saying one night I had no energy, I was really weak. They just, they took me to the hospital. And, um. Um, I was diagnosed and that was the start of it. Yeah. That's how it all started. Because we hear, you know, we hear so many parents and young people talk about those early symptoms of thirst and needing to use the bathroom and all of that, and it can so easily be understood as something very different, particularly with a very active toddler.
Yeah. You know what, two and a half, I guess you were probably moving quite a bit. Yeah. Yeah. And they also would have had Jack in the picture. Yeah. So another toddler running around the place. Did they speak about how they felt about that time of diagnosis, Aoife? Was it a shock to them? Was it something at that point they might have had suspicion of or?
There was no real indication at all because there's absolutely no history of type 1 diabetes in my family. So they didn't really thought that didn't really come into their minds at all. Um, so it was very, it was difficult on them at the start. Because it was so sudden. It was just, one minute they didn't know anything, and next it just kind of thrusts into this whole new kind of path in life.
With no kind of idea what they're doing. Yeah. Can you imagine that? Just, we hear parents talk. Parents and carers talk so often about, you know, the learning that they have to do so quickly. Yeah. You know, where their head is nowhere near that space and then suddenly it's like, diabetes is here and now you've all this to do.
Imagine 15 years ago that even some of the ways of managing diabetes would be very, very different than how it is now. Yeah, it's, it's very different. It has changed a lot. What's, or do you have like a first memory or a very early memory of, you know, living with diabetes or what that involved? Or noticing that maybe there was something you had to manage there?
I think the earliest memory I probably have is probably on, when I was on the pump. So I was on injections for the first few years and then I. First got the pump the I think I was on the Medtronic pump when I was just over five years old So I just started primary school so it was a big change in that way as well because I was starting school and I had a pump to kind of Manage the condition so it The pump helped in that way, to kind of control the condition.
But, you know, probably the earliest memory would be on the pump, when I was maybe, like, seven. Kind of just realizing, I'm gonna have the condition for the rest of my life. And I'm gonna have to manage it every day. Like, there kind of, there really is no break from it. It's a really big thought, isn't it? It is, yeah.
It's a big realization, at any age. But you think of, you know, You know, a seven year old version of yourself, having that recognition of like, wow, this is something that's around, you know, and even that move into primary school, if, uh, how do How do you think, I know we're taking a couple of steps back here, but we think about transitions and changes and how often we negotiate those, you know, so by the time you reach young adulthood, I mean, you've done nothing but transition and change constantly with school starts being the first of those.
What do you remember about starting into primary school? Are they diabetes related memories, or are they just completely different memories? Um, well, I don't really, I don't have a lot of memories, but probably they, they would be mostly related to just school in general, kind of being around a lot more people than I'm probably used to, and making that, making that change and into, into school and Kind of having a routine of you do a set thing at a certain time, which I think helped the diabetes as well, because there is a sort of routine that you kind of need, um, it really does help with the management of it.
Um, I think anyway, yeah, you hear so often that routine can be diabetes, his friend helps and I suppose with routine, it helps us to remember things and it helps us to, to know where we're going to next. And there can be some comfort in that as well. Um, yeah. Yeah. So yourself and Jack, twins in P1. Lovely, lovely.
So you were talking, Aoife, about your memory there of using the insulin pump. You'd have been about seven, so that would have been around P3 ish. Yeah. Do you remember the change from the pump, from injections? Do you remember noticing a difference with that at that time? I don't know. Um, I just remember my mom.
Tell me about kind of going from injections to the pump. Like there was a lot of new information It was almost like, it was almost like half a diagnosis over again Because there's so much new information you need to take in. There's so much more you need to learn It was, it was just, it was a lot for my parents at the time on top of the change from primary, into primary school So it would have been a lot for them at the time.
There's a lot of continual adjustment, isn't there? Yeah. And we often think about diagnosis itself as being an adjustment to living with the health condition, but actually what you're doing is continually adjusting to life and then having the additional adjustments around diabetes care with it. Yeah. Do you remember much about, um, Your peers, peers, recognition of diabetes or was it something they just became aware of as they had sort of grown up through school with you?
Or were there questions about it or noticing about it in primary school? I think my earliest memory of this is probably when I was in primary five mm-Hmm. . I had to wait maybe primary school. Um, we had like chairs outside the principal's office. Mm-Hmm. . And there was one time we were just on like a walk outside.
With just my, my class and my bloods went low. I had, so I had to go inside and sit down. So then when my class came back in, they were just, they were all kind of asking a lot of questions. Like, why did you have to go back inside? Like, why are you sitting here? It was kind of, it was odd for me because I was used to having to just go inside or Change whatever I'm doing like because of diabetes, but it just kind of didn't it didn't really I didn't really understand Why they had so many questions about it because it was something that you had grown up with Yeah, I've always been there always part of your life Yeah, so I was I was used to it at that point But I think I mean it was probably just curiously of children really because mean we were we were really like What, maybe eight, nine.
Yeah. So it was just curiosity. Absolutely. And I know this is a, this is a way back for you, but I guess whenever we do speak with young people, sometimes that curiosity can be something that they manage quite well. Sometimes they can feel a little bit of doubt. you know, upset about it or frustration around it.
I'm wondering, do you have any memory of that, Aoife, and like how that felt to you to have peers curious about diabetes or about you? At the time, I was confused about why they had so many questions about it, because it was in my life for so long at that point. I just didn't really understand the whole curiosity around it.
But now if people have questions, I have a different, I have a different outlook, really. I'm kind of I want to raise awareness about it and I, like, I'm more vocal about it. Yeah. And I think that comes with age, really, too. Absolutely. Absolutely. The confidence just kind of grows as you grow older. So.
Absolutely. And it sounds like you welcome that in some ways now. Yeah. Yeah. Yeah. Absolutely. Because you have effectively grown through all the, the life status to this point with diabetes there, you know, um, and it's very understandable that your relationship with it will change. Yes. As that happens. You touched there Aoife on noticing a few points, I guess, within those early primary school years.
The first one being the move to the insulin pump from injections, which as you were describing was something that was maybe within more the awareness of your parents. The secondary you touched on was that recognition of, oh, other kids aren't used to this. You know, they haven't grown up with this and they're noticing something different with this.
And then you also touched on that idea of a recognition of. I have to deal with this for the rest of my life. I mean, those sound to me like quite significant points of time, you know, even within those early ages. Would it be okay if we talked a little bit about those? Yes. So suppose I was thinking about that question of what helped or didn't help, you know, within that sort of primary school stage.
And if we think about that time, maybe first where you noticed this is here for good. This is something that I have to deal with. And you were saying that you noticed that at around sort of the ages of seven or eight. Do you remember what it was or what was around at the time that that thought suddenly hit you?
I think it was just sort of a. Growing awareness of Mm-Hmm. of the condition and the kind of the presence I had in my life. Yeah. Because I had it, like I had, I had it for so long at that stage and it was managed by other people. Um, but I think it was more as I kind of got to the end stages of primary school.
So it was probably more when I was around nine or 10 when I realized, started to kind of realize I'm gonna have to manage this in my own at some stage. Yeah. Um, because all throughout primary school, I had a classroom assistant. Um, she would manage it. She would manage the condition, basically, for me. Um, but sort of near the end stages of primary school, I sort of realized I'm gonna have to manage it on my own.
It was sort of like a fear of, how am I gonna do this myself? There was a good support around me to kind of help guide me and help me to realize that I'm not on my own, even though I might feel like I am. Um, yeah. And it sounds like what you're describing there, Aoife, is sort of, you know, that developmental changes that happen and even when you think about that age group, you know, coming into P6, P7 and the conversations that start to happen around transition of school and, you know, the messages, I guess, that It can be given just to kids at that age around, you need to be growing up here, you need to be taking on independence, you need to be managing, you know, your own organization for school.
You're going to have to do this when you step into secondary school. So yeah, diabetes on top of that is a different level. And I guess, you know, not only have you grown up with diabetes, you've grown up with a twin brother who hasn't had the condition in the same way that you have. So yeah, it's been in his life, but Not in the same way that it is for you.
Yeah. So you were talking there Aoife about the support that you had around you. So the classroom assistant support. Um, and then as you reached sort of that cusp of primary school, the support that was around from other people around you, like you talked about the support network of your family as well.
How did you find that experience of classroom assistant support? I don't really think I realized how much the classroom assistant was really worth until probably P6 or P7. Because that was when I started to really realize that, you know, there's so much to manage with the condition. That having someone else to do it and kind of help me with it really helped my understanding of the condition.
And helped me realize that there was a lot to come with it. And in many ways, you know, I'm thinking as you're talking there about that idea of, as you get older, just your, your understanding of things developing, your insight of things development. And it's almost like you were experiencing an adjustment here further down the line than what your parents had.
You know, as your brain matured to the point to be able to start to ask questions or to think about, you know, other kids and their experience and the differences and the similarities, all of that. You mentioned a feeling of fear around that time, P6, P7. Could you tell me a little bit about that and maybe what some of the, you know, the The thoughts were, or the fears you might have had?
I think there was a very, it was a very general fear, kind of with the diabetes combined with the fact that I was going to be moving to a new school, meeting a lot of new people. So there was a very general, you know, fear of change, really. Yeah. I think that's, that's really The, the basic of it was, was the fear of change and transition to new surroundings and new people and the fact that I would have to basically introduce myself all over again.
People wouldn't know about my condition because I went to a very small primary school. There was maybe like 30 people in the class. So it was, it was quite small. So everyone knew everyone. It was sheltered in that way. So everybody kind of knew about my condition at that point because we'd grew up together for seven years.
So we all knew each other really well. So I think there was a fear of people not knowing me. It sounds like a lovely, safe environment that you had. Yeah. As you describe it there, a sheltered environment, if it's a lovely way to put it. It's almost like anything frightening was kept out. Yeah. Just out of curiosity, were there other young people in your primary school that had diabetes or other health conditions?
There was, there was none. I was the only one. Um, they had a pupil quite a few years before me, but I was the only one during my time there. And I guess what we know about feelings of fear and worry is that They show up at times, you know, whenever we feel out of control or we feel like there's unpredictability around and there's things that we don't have information about and just listening to you talk there about that change into secondary school, you know, you're, you're talking about so many unknowns.
How did you prepare for that, I guess, or how did other people help you prepare for that transition? Personally, my transition into secondary school was, I think it was very, like, other people's. Just, there's, there's gonna be a lot of new people, there's gonna be a lot of new things to learn, new subjects, um, new teachers, all the general stuff, but I think with diabetes on top of that, there was, there was a fear for my parents, actually, I think, because they trusted me.
The people in primary school. And then, me moving to a secondary school, there was this kind of unknown for them, as well as me. I think in that way, there was, the change was, um, it was different in the sense that it affected my parents as well as myself and my brother. Because he was, you know, he was there alongside me.
We were both going to the same school. He was scared for me, almost. And do you remember talking to Jack about it, Aoife? Would you have had the words to do that or had the thought to do it, I guess, at that age? I don't really think we talked a lot about it. Um, we talked more in a general sense about the change from primary school to secondary school, not in the sense of diabetes, but just in the sense of normal change for people at that age.
Um, the general change into secondary school and the move that The move in life. Yeah. Really, at that stage. And it can be such a time where, you know, there can be such a mixture of feelings. Sometimes people will talk about excitement and readiness to start new subjects, you know, to get to know new people, to get into a different uniform, you know, things like that can be important.
But absolutely there can be a mix of fear and worry, you know, questions about who will be in my class, you know, what will my teachers be like? Will I make friends? And for yourself on top of this then, how will, how will I cope with my diabetes? So, Aoife, you were talking there about the, the support that was available to you from other people around you, from your brother, your parents, and through primary school from your classroom assistant.
And it sounds like just a generally lovely school environment. I'm wondering a little bit about that sort of step and independence that comes with going into secondary school. Because, Yeah. You know, often it's a time where young people can feel a bit of pressure, you know, potentially coming from different places around having to maybe be in a different place with their diabetes than they actually are.
And I'm wondering a little bit about your experience of that, you know, in terms of your diabetes management yourself, did you feel pressure from other people to be more independent than you were, or did it feel like that pace was okay for you? I think, um, it wasn't so much a pressure from other people at that point, it was more pressure from myself, you know, I realised I need to be independent, because I talked about kind of realising at the age of, like, 11 or so, that I kind of had to be independent at some point, so I think it was more of an internal pressure that I realised I need to be independent at some point.
Yeah. So yeah, I think it was more, um, It was more pressure on myself than by anybody else, really. And what was your idea around that time of independence? So, practically, what would that have looked like? What did you feel you had to put pressure on yourself to be able to do? I think it was more managing my condition because I was, you know, I was getting older.
I was moving into secondary school. I kind of, I wanted independence at that, at that stage. I was ready to kind of start managing it myself, but I think I kind of underestimated it. How much there is to manage, because there's so much. I had like a newfound respect for everybody that had managed the condition up to that point, because I had not, I had severely underestimated how much there was to manage for it.
Was there a point where you turned to your parents and you were like, wow. Like, that's an impressive job you've been doing. Yeah. Yeah. There was, there's just, there's so much information. There's so much, there's so much that affects the blood sugar levels. It was, it was amazing. It was amazing, but it was definitely a big step of independence for myself because I was managing the condition myself entirely.
There was nobody there to kind of tell me, oh, you know, you need to do this or do that. It was entirely myself making my own decisions. Yeah. And I had never done that before. So it was a big step. That's incredible. So you moved from such a protected small space where effectively it sounded like everyone else, the adults around you who were helping you to manage your condition was freeing you up to be, you know, throwing yourself into school, to be enjoying all your friendships, all of that.
And then suddenly there's this point where you're like, wow, this is what this involves. Just for the purpose of the listeners to the podcast. When you're talking there about so much to manage, what are you thinking about in particular? What are the different steps you're talking about? It's, it's more the fact that there's so much that influences.
Blood levels. It's not the fact, because I'd watched, like, like, The Classroom Resistance, my parents kind of managed the condition, I knew what came with it really, but I hadn't anticipated how the lifestyle kind of influences the condition, because there's, there's so many factors that can change, like, your blood, your blood levels in a really short space of time.
The likes of, like, sport and everything, you need to, you have to think before you do everything, basically. It's so interesting what you're saying there, Aoife, about so much to think about. Um, it's making me think about the difference between what someone might, you know, potentially be reading in a textbook about the science behind the management of diabetes, but then the lived experience of that.
Which is completely different. And I, I get a sense that that's what you're touching on here is this idea of you maybe had a rough idea around the science or the management, but this now was life with diabetes in it. Yeah. I think there's, there is a very big contrast, but there's only so much that words can kind of get across.
Yeah. There's a big difference between explaining to someone what diabetes is and actually living with it. Yeah. Because you can give as many definitions of diabetes as you want, but there's so much that goes into living with it that I think people don't really understand. And that's, that's so important, isn't it?
You know, because I guess assumptions are often based on something being, and I'm using quotation marks here, manageable. You know, you hear so often of, okay, diabetes is a manageable condition, which can sometimes minimize the experience for someone of living with that. Would it be okay if we talked a little bit and more, well, quite a bit in more detail about that lived experience, if that would be okay?
Because I think it's really important for that part of your story to be heard. What about this daily sort of life with diabetes, if you can sort of think about that preteen stage when you've just moved into secondary school, what are the things that you were having to think about? What sort of space in your mind was that occupying?
I think kind of the transition from primary school to secondary school. meant that I had a lot more to think about, like, in terms of both, in general, school and then diabetes on top of that, because there's, like I touched on earlier, there's a lot of, there's a lot of lifestyle factors that will affect, there's a lot of everyday things that people don't really think about that will affect your diabetes management.
Say, for example, I'm going to walk, right, I need to check. My blood sugar levels, am I okay to go walk? Like, are my blood sugar levels low? If they are, I can't go. I need to wait for them to come up. If they're okay, do I have enough hypotreatments that if I go low, then will I be able to treat on my walk? If I'm high, then is the walk gonna bring me higher?
Or is it gonna bring my blood sugars down too fast? There is so much that goes into just an everyday thing, like someone who doesn't have diabetes can just go out and walk and walk. And no other thought, just bring a phone with them. Someone with type 1 diabetes has to bring like, pump, scanner, hyper treatments, a finger pricker.
There's, there's so much extra, I think, in, in your mind. There's so much extra going on as well. And that's, as you say, that's an activity that can so easily be taken for granted by someone who doesn't have to think about this. It's going for a walk. Yeah. And we think about how many times in a day that can happen.
Yeah. So that would touch then on things like PE, obviously, I guess, with exercise. Yeah. Yeah. How did you, how did you manage things like that? Like the structured sort of classes and even the teachers being aware of it and those sorts of things, Aoife? So, when I was in first year, I kind of, not went overboard, but I kind of made it aware to all the teachers about my condition.
Because, I use the FreeStyle Libra, so the reader that comes with that looks very much like a phone. It does, yes. And that can be very ambiguous when it comes to teachers and a school that doesn't let you have phones out. So I think there it kind of, um, kind of made me think, right, well I need to, you know, I need to let them know that this is not actually a phone.
But when it came to, like, managing. Managing diabetes and PA. Like, obviously, I was on the Freestyle, FreeStyle Libra. So, it was, it was a lot easier, in a sense, because, compared to, um, like, finger prickering, it was a lot more efficient, because all you have to do is just scan, scan the sensor, and That'll give you your rating.
Um, that aspect definitely helped manage the condition like in the move to secondary school. So something about the technology being helpful there. Yeah. I suppose as you're talking Aoife, I'm just finding it really striking to think about how much as an 11 year old you were having to manage things that your peers just weren't even having to think about.
You know, you talk there about the basic sort of, you know, Go for walks. Yeah, then, you know, the more structured classes of PE where it sounds like the technology sort of helped with that. Um, are there other sort of. Areas that you have found or that you remember thinking, gosh, everyone else just does that.
Like they don't think twice about it and I have to. I think definitely eating break time and lunchtime. So I think what, what helped me with the management of my diabetes, obviously it's going to be different for every single person, but definitely routine having a break time and a lunchtime is set time every day.
A lot of people didn't have to. Think about, like, very basically, how many carbs is in whatever you're eating. Whereas some other type of diabetes is gonna have to think, many carbs is in that. What's my blood sugar levels? Am I going to have to pump for it? So there's a lot of, a lot more thought that goes into simple activities when you have type 1 diabetes.
So as an 11 year old moving into secondary school, Aoife, it sounds like you were having this sort of increasing awareness of everything that came with thinking about life with diabetes in it. Then also this part that was about educating other people. So you know, that image of you at that age having to remind teachers that you needed to have certain equipment in the classroom, you know, alongside that you're trying to manage school.
So you're trying to manage, how many subjects do you do in first year? Is it 11? 11 or 12. Yeah. Isn't it? Yeah. Roughly. You know, and was it, was this new school, was it much bigger than your primary school? I'm imagining it was a lot bigger. I think there was maybe like. 300 people at my primary school and there was nearly a thousand in secondary school.
So it was a big move. There was a whole lot more people. Um, there was a lot more interactions through the day that I would have had in primary school. Yeah. And even the organization that comes with that, I mean, I remember myself, one of my striking memories of going into first year was I have so many books and I have a locker and how do I use that?
Yeah. And you think of that, that's one task that can be quite overwhelming for a young person at that age. Nevermind what you're talking about here, which is about multiple tasks. And alongside that, this requirement then to help other people to understand. You talked there about the benefits of routine.
I suppose I'm just curious about how did you find that routine? You know, was that something that other people were able to help out with, or was that something that you were sort of left to create by yourself? But I think Well, routine's always been a very big part of my life growing up because my mum, my mum loves her routine.
She's, she always loves her routine. She's always said that. Like, she always, she always loves going back into the school year after summer because you get out of your routine in summer. Yeah. You're up late. You're up late. sleeping in in the mornings. Whereas when you start back at school, you're up in the morning, you have your breakfast, you have your lunch, you have your dinner.
There is a, there is a routine. So I was used to routine at that point. So I think there wasn't so much of a change in it for me. With, in terms of routine, um, I think the people that I'd surrounded myself with in first year, so like routines were new for them in secondary school. So I don't think they necessarily hindered my routine, but they didn't really, there was no like,
Accommodation for it. There was no, yeah, there was no accommodation. They, they weren't, they weren't really willing to change a routine to kind of understand what my routine was. Yeah. Because it's quite a striking image that you're painting there of a young person who is having to prepare so much to go for a walk.
You know, when this is something that you sort of picture spontaneously for young people not living with diabetes, not having to think about these things to just do, and how, how much are they aware of or able to sort of recognize, right, we have to hold back a little bit here and maybe forget sort it first.
Is that the sort of thing that you're talking about there with the accommodation? Yeah. Yeah. And that's, that's a lot as an 11 year old to be managing. It really is. You mentioned that your mom loves a good routine. Would you agree with that, do you think? Yeah, yeah. Do you know, because I'm thinking about, you were talking about your, your parents worry for you and their fear about this move into secondary school.
Do you know what helped them or didn't help them at that time? Was there anything around that, that they ever mentioned about that? I think the technology at the time definitely helped, helped their confidence that I would be able to manage it because I was on the Freestyle Libra, I had the pump. I think the summer before starting secondary school, I had a lot more, like, they kind of stepped back, because my mum always helped me at home, kind of gain my independence without, without completely stepping back, like, she would still help me a wee bit if I ever needed it.
Like, I knew she was still there, but I think that definitely helped kind of almost pre preparing for the change between secondary Primary school and secondary school. I think, I think between, kind of, preparing me and the technology, it really helped them, kind of, have a, have faith that I would be able to, to kind of, manage it myself.
They, they had, they did, they did, they did trust me. Anyway, because they knew, I knew the consequences. If I didn't, uh, kind of manage it, that's exactly the word that was springing to my mind. There was the trust, you know, and how, how it sounds like you and your parents have managed to negotiate that, you know, a level of trust, but then also that summer beforehand, like a safe practice space.
So you get to practice this at a point whereby you're in the safety of the close proximity to your parents. Yeah. You're not having to balance the additional pressures as yet of schoolwork. Yeah. Um, and I'm thinking too, time wise Aoife, that potentially that was what, five, six years ago? Yeah. Yeah. So that would have roughly been around the time potentially where the Freestyle Libra was just becoming very available, I guess.
Definitely. Yeah. Yeah. I had first got the Freestyle Libra when I was in primary seven, I think I was just going into primary seven when I got it. So it was still very new to me and my parents. I think we had a lot of trust in the, in the technology itself and like how it was developed and we knew it was able to help manage the condition even more than I already had.
Yeah. It's incredible. And I assume mental reduction and finger pricking. Yeah. Yeah. Which meant time saved and maybe a little bit more privacy or less visibility within some parts of school. Maybe not so much with PE and things like that. And if you think about PE kits and visibility and is it okay if we speak a little bit about that Aoife?
Because I'm thinking about those teenage years where, you know, what becomes so important to us developmentally is about, Peer relationships and to an extent fitting in with other people and not standing out, but then also trying to find our own identity in that. So it's a little bit of a double edged sword there.
And then also privacy. So we know that health conditions can sometimes make what you would like to be pretty private can make it quite public. What do you remember about that? Because I'm thinking that Diabetes, in my experience of speaking with other young people about it, has a way sometimes of making itself quite visible to others when you don't necessarily want it to, and you're already talking about having to approach everyday tasks with it.
A different level of preparation and less spontaneity than, than some of your friends. How did you find that period of growing up with diabetes around? So a lot of people think that diabetes is an invisible condition, but it definitely, in its own way, it's, it's both visible and invisible. The visible is very much the technology side of it.
You know, you're carrying, you've, you've got your pump, you've got your, maybe your injections, you have, whatever, so say if it's Freestyle Libra, so you're carrying all of the technology, but then there's the invisible side of it, so it's the kind of, what, everyday things that affect you. The condition, and how you manage it.
So as I touched on before, like, going for a walk, like, it's a simple activity. There's so much more that goes into it because there's so much that can affect your ability to do certain things. It doesn't stop you from doing things, but it can kind of pause it for a certain length of time. Yeah. And I think there's, there's a lot of, kind of, uncertainty.
Around that, where people don't really understand how much there is, kind of, under the surface. It's kind of, it's kind of like an iceberg. You can only see so much of the top of it, and then there's so much underneath. And I'm thinking there too, even Aoife, about how much could be misunderstood, you know.
Because it's reminding me of that image that you talked about in, you know, when you were seven or eight years old. Having to sit out and wait because your bloods went low. How do other people understand that, you know? Do they notice that actually you could be exhausted, that potentially you might not have had good sleep the night before?
That might have been interrupted if your blood sugars were all over the show. You know that, um, potentially, you know, concentration might be tricky because your blood sugars are maybe high or low or fluctuating. And I'm just thinking about how, how that might look to peers or to teachers. And the work that you're having to do to allow yourself the best chance to perform to your best ability on your schoolwork as well, you know, there's a huge amount of work goes into that.
There is. There is a lot of, um, kind of management really comes down to how you, how you manage the condition. Really. I think a lot of people, a lot of people say that, you know, it's, it's all, it's all numbers. It's everything is numbers, but I think a lot of people forget that. There's an actual human that has to manage this, and I think that can be, it can be difficult when you're just constantly seeing numbers all the time.
You have to count things, you have to check your blood sugars, you have to do so much with numbers that you forget that there's actual other things that can affect it. I remember speaking with a young person one time who said that they felt that they really had to be their own pancreas, you know. Yeah.
It's quite a powerful image of, Um, for someone without diabetes, their pancreas just works 24 seven all the time, busy in itself. Do you know? Yeah. As a human, as you say, and as a person, you're trying to do that, but also school friendships, growing up, organization, food, all of those things. You were touching there on the idea of numbers.
I guess I'm wondering about the visibility of that part, because in many ways we hear a lot about, you know, things being in a. Quotation, good range or otherwise. And yet that idea of where your blood sugar levels are as being quite apparent to other people. So other people can see those numbers. Other people can print those numbers out.
They can upload them. They can look at them. They can comment on them. What is your experience of that being? I think a lot of people assume that the diabetes is all numbers because that's all you really see on the surface. For healthcare professionals it is. how much time you were in range. I think there's, for people that kind of don't know diabetes, there's a, if they know the surface of diabetes, if they know kind of what it looks like, so they're able to recognize it.
I know personally for me, one time me and my mom were out shopping for a birthday present and we went into the shop, but I had to, I had to check my bloods because I felt low. Um, and the, the person, there was a person in the shop said, oh are you a diabetic? You must be, you must be, quotations, 'a bad diabetic'.
At that, at that moment I was kind of, I was kind of shocked because I was, what do you, what do you mean by that, really? Yeah, yeah. Because you don't, you don't know really how, how my management of diabetes is. Don't know much about diabetes. So, how can you, how can you judge me and say I'm a bad diabetic if all I'm doing is checking what my blood sugars are?
Like, there's kind of a, there's a misconception really around what technology is needed for, for diabetes. It's just so interesting as you're talking Aoife about how much your experience of living with diabetes relates to other people, do you know, and you're talking there about judgments
Comments? I mean, how do you, or have you found a way to cope with that? How do you manage it? There's not so much how you manage it, but it's your kind of outlook on it. You kind of, there's, there's two, there's two options really. You kind of, you blame the educational side where they're not educated enough, they don't know enough about it.
Or you blame the fact that they're just judging you because they've nothing better to do. I tend to blame the fact that they're just not educated enough, they don't know enough about the condition. So I think that kind of drives me to raise awareness for the condition. Because I think a lot of people Don't distinguish between type 1 and type 2 diabetes.
Yeah. Even. I think a lot of people just assume that they're kind of one and the same. Yeah. When they're not. Yeah. And both conditions are very different for people to live with and come with different sets of challenges. Yeah. Do you remember diabetes either type 1 or type 2? Were they Was there much education that you were given on this, aside from through your clinical team?
If you hadn't had a diagnosis yourself, do you think would it have come across your radar? I don't think I would have had any education on it at all. Yeah. Um, I know in school, in recent years from, from GCSE level, there has been a couple of, because I do biology, so I've had a couple of mentions of, you know, diabetes in general.
Ok. Thank you. But, there's been no kind of education on it. It's been to do with the biological side of it, which I kind of find strange because, you know, you're, you're talking about this condition, but there's people living with these conditions, and you're not kind of acknowledging that. Yeah. And I kind of find that strange because you're educating people about it, but you're not educating them about it in the right way.
So Aoife, you were talking earlier about your change in responses, I guess, to the curiosity of other people. And it sounds like in some ways when you were younger, you were saying that that felt annoying. It felt confusing to you because you couldn't understand why are they querying about this? You spoke earlier about feeling that as you get older, you welcome those sort of questions more.
Yeah. And then it sounds like there's this other part that is about people not even thinking to question, not even thinking to be curious about it. I'm wondering, this is potentially a big question, but what would you like them to know about living with type 1 diabetes? I think for people with the condition, I know it's a lot to manage, but it is manageable and you know, you just, you need to You just need to trust yourself that you're going to be able to do it.
Um, I think a lot of it comes with, like, trusting yourself. You know, having faith that you will manage to, kind of, understand everything that has to come with it. I've mentioned previously that there was a lot, kind of, underlying things that, kind of, contribute to living with diabetes, but, overall, they're, they're They give a picture as actually managed, they just kind of come along with managing the condition.
They're just second nature when, when you kind of have the condition for so long. So there's a lot of learning. Yeah. Yeah. And it's, it sounds like that's very appropriate within those teenage years in particular, isn't it? Because you talked about the learning your parents did when you were diagnosed at two, two and a half Aoife.
And is it a sense of, for those not living with, with type one diabetes to be aware of this is what people are trying to learn and live with? Yeah. I think for people not living with type one diabetes. I think a lot of people underestimate the amount of thought that goes into just getting up every day and the amount of effort that goes into just getting through the day.
I think that's really why I wouldn't be able to understand. I don't want to make assumptions on it Aoife, but I guess in listening to you talk about your experience here, what's coming to mind and to the fore really is just the relentlessness. Of diabetes. Yeah, definitely. Actually, what comes to mind when you say that, actually, is, um, the motto for Diabetes UK is that diabetes is relentless, but so are we.
And I, I just, I love that. That is brilliant. Honestly, I love that because it's so true. Yeah. Because the diabetes is relentless, but people that manage to condition and carers of people that manage to condition are relentless and we can. Live with it. It's such an empowering statement, isn't it? It is. Yeah.
It's so empowering. Covers everything that it means to live with diabetes really. Yeah. Sounds like it really acknowledges the challenges, but then also emphasizes that these challenges, you can challenge them back, I guess, in a way. Yeah. You know, it's leading me to think about periods of burnout, which we do hear young people, parents talk about.
And when you think about it, you feel like, you know, the definition of burnout is having to be so relentlessly working on something to maybe feel like you're not getting reward or joy or a break from that. Um, so we do see that actually burnout can show up for any young person trying to manage anything on a long term basis.
I'm wondering, is that something that you can identify with, or has there ever been times for you where it's felt like, I'm just so tired, I've had enough? I think at times I wouldn't, I don't think it was, I don't think it would be burnout exactly, but I think there has been times where I've just been, Um, and I think that just comes with time.
Especially, probably at the start, if people are diagnosed, maybe later in life they can kinda, they maybe feel it earlier on in their diagnosis where they're just, yeah. So drained from having to manage the condition for so, for every single day, every single second of every single day. Yeah. But there's, there's so many support systems that you can go to for, for kind of helping with burnout.
Like, especially, you know, like in, in this age of social media as well, it's definitely, there's so, there's so many communities online. That can, that you can relate it to. Can you tell us a wee bit about that? Because that sounds, it sounds like that's something that maybe at those points of fed upness that you have found helpful.
Definitely. Especially YouTube, actually. It's kind of unexpected, but there's a lot of YouTube channels. You can search up for type 1 diabetes, and there's so many that come up, and there's so many realistic expectations that you can identify with. I think there's a lot of expectations for people with diabetes, because you're expected to, you know, stay in range, stay in target, keep the numbers good, basically.
I think will help the online communities, even in person communities. They help with kind of breaking down the expectations and making them more manageable and making them more kind of tailored towards managing life instead of managing numbers. Yeah. So that idea Aoife of managing life. Instead of thinking primarily, I guess, about managing diabetes, can you tell me a little bit about that?
So tell the listeners a little bit about what you're thinking of there. I think touching on what I said earlier about that diabetes seems to be on numbers but really isn't. I think there's a lot more to kind of managing the condition. A lot of people kind of misunderstand how, how much goes into managing diabetes.
Uh, there's a lot of expectations to be, I guess, quotations, a good diabetic, and I think, I think we need to lower the expectations. I guess everyone's good looks different, like sometimes. On a daily basis, it can change, and I think that's what a lot of people don't really understand, is that every day does not look the same.
Every single day is different, and you can do the exact same thing on two days, and everything's different. And do you feel, Aoife, I don't want to assume on this, but do you feel that the quotations good is primarily about numbers? It is a lot about numbers. Yeah. And I guess one of the things that we're hoping that people can start to think about is the importance of recognizing the effort or the energy or the thinking time that you're talking about that, that someone gives to this condition, you know, regardless of what a number might look like.
Because often numbers do not reflect what a lived experience has been. And I suppose that idea of rather than in quotation marks, good, maybe looking at quotation marks, Good enough to allow someone to participate fully in their lives. Yeah, so it sounds like you have found a lot of benefit in Reaching out to the online communities and you were talking there about the in person communities and organizations like Diabetes UK.
What do you think has been helpful about that? So you talk there about helping to rethink expectations. Has there been other parts of, of linking in with those types of supports that has been useful for you? Definitely making you feel like you're not alone in the condition because living with type 1 diabetes, it can be isolating at times because You're managing the condition on your own.
You're kind of expected to have all these targets. Um, you may feel like you're not good at it. Yeah. But I think if you, like, connecting with other people with type 1 diabetes. Can make you feel like you don't need to be perfect all the time, because you don't, you don't even need to be perfect any of the time.
You can't be perfect. Yeah. It's physically impossible to be perfect. Yeah. You just need to try your best. That's mainly what you need to do. Absolutely. And for other people to recognize that. Yeah. That everybody's just doing their best. Yeah. You know, it's interesting that strife for perfection, isn't it?
That none of us can achieve with or without diabetes and yet a health condition that involves numbers and involves being able to look at something technically as private as your blood sugar levels can feel so exposing and can lead to judgments on that or to categories of quotations good, quotations bad, you know, and it's a lot of pressure.
So it's, it's wonderful to hear you for that. Some of those connections have helped reduce the isolation, but also to help think about doing your best is more than enough. So the future then there's more changes and transitions to come. Yeah. Yeah. So you're you're middle or sixth. Is that right? Yeah, and I'm just wondering a little bit about your hopes for for the next few years Where would you like to be thinking about?
What would you like to be doing? It's a big question. I think obviously first Finishing secondary school, you know, there's still, there's still so much fun to be had. I, I, I, school's not, school's not just about, you know, the educational side, there is, there is fun. So yeah, fun's so important to balance out all the pressure, isn't it?
Yeah, yeah. Because I guess we have spent quite a bit of this morning talking about the pressure of exams, the pressure of transitions and managing diabetes, and yet, absolutely, so important to think about where's the fun in the middle of it all. Yeah, you need, you need the fun to kind of manage all the other stuff that comes along with life, really.
But no, I think finishing, finishing secondary school and then I'd love to go to university to study psychology and hopefully get a career in psychology. I don't know what, I don't know what path I would want to go down yet, but a career in psychology is what I'm definitely looking at. Excellent.
Excellent. And isn't it, isn't it lovely to have so much opportunity to think about things Aoife rather than to feel tied down to them right now, to have a rough idea of where you want to go. Where, where do you see diabetes in the middle of this? I'm wondering about when you spoke earlier about transitions and how there are certain things that have helped those transitions.
Are you aware of things that may be helpful for you going forward into that sort of young adulthood or have your thoughts even went there yet? Thank you I haven't really thought that far ahead really, um, but I'm just aware that diabetes is always going to be there really. I know there's research going on all the time to try and find different ways to manage.
Diabetes, but I think I knew diabetes will always kind of be there. I will always probably have to manage it. That's just something that really comes along with having the condition, you know, it's It's just always going to be there, really. There's no getting rid of it. Yeah. It's not all bad. That's It really isn't all bad.
And you know, Aoife, when you talk there about balance with fun, it's just, maybe think of the importance of that idea of knowing what has helped in the past and thinking about how to access that whenever things do get a wee bit tricky for any of us. You know, when you've spoken about the support of other people as being invaluable at times, you've talked about routine and being able to, to influence that as being important to you.
And you've spoken about how as you've gotten older, that sort of educational role has been something that has become more important to you. And yet recognizing too, that. It's important to think about other things other than diabetes. Your future, the fun you're having at the moment. And I suppose, bearing in mind that sometimes we don't know until we're in a situation what the tricky parts might be.
And it's just to think about, well actually, how do I access what I know helps? I'd just like to say thank you so much Aoife for spending the time with us this morning and for being willing to talk about your experience and for giving of yourself so that others, you know, can listen to the podcast and hopefully feel a little bit less isolated in the way that, that you've described being able to link in with, with online and in person communities also.
And best of luck for everything. Thank you. Thanks for having me. You're very welcome. In the podcast summary, you'll find a short survey link, which we would really appreciate you take a few minutes to complete and help us to receive feedback on the podcast you've been listening to today. There will also be a link to the Northern Trust website about our service, what we offer and information about other podcasts in the series.
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