71. Amelia Wilkinson - living (and parenting) with Type 1 diabetes

Amelia Wilkinson: Living (and parenting) with Type 1 diabetes - beyond the data

Published on 14 November (World Diabetes Day), this conversation lifts the lid on what most of us miss about Type 1 diabetes - the mental load, the masking, and the trauma that doesn’t show up on a glucose graph.

Podcast host Gill Phillips talks with Amelia Wilkinson, diagnosed at 10 and now a mum, about growing up through school exclusions and assumptions. 

Topics include why behaviour is communication, navigating a high-risk pregnancy, and the power - and limits - of technology. 

Amelia calls for two big shifts: train the adults around children with Type 1 (teachers, carers, clinicians) to spot the emotional toll

AND separate Type 1 and Type 2 awareness, so misconceptions stop harming care.

🍋💡🍋 Lemon lightbulbs

🍋 Type 1 ≠ Type 2: why the confusion hurts

🍋 Grief for a ‘former self’ and the hidden mental health toll

🍋 School stories: control, freedom-seeking, and being labelled ‘naughty’

🍋 Pregnancy with Type 1: what it really took for Amelia to have her daughter

🍋 Masking, peer support, and life beyond the data

🍋 Don’t make assumptions – ask how the person is doing, including mental health

🍋 Train the grown-ups!

🍋 Separate the awareness days!

If you work with children and families- or love someone with Type 1 - this one’s for you.

Links

Type 1 Diabetes: The Comic Book Stories (courtesy of FAB Fab NHS Stuff)

World Diabetes Day

Overview of Whose Shoes

Wild Card - Whose Shoes podcast with Aurora Thompson

💛 #WorldDiabetesDay #Type1Diabetes #NoHierarchyJustPeople #WhoseShoes #WildCard

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Chapters

• 0:00 World Diabetes Day: setting the scene Gill introduces the episode, explains the Whose Shoes? podcast, and sets the context for World Diabetes Day.
• 2:08 Meet Amelia Amelia introduces herself and explains how she and Gill connected through Stephen Russell and his work with young people
• 3:10 Trauma looks different Amelia describes how living with Type 1 diabetes from age 10 created hidden trauma that mirrored some experiences of children in care.
• 5:30 Type 1 ≠ Type 2 Gill admits how little most people really understand about Type 1 and sets up the conversation to explore its impact on every part of life
• 6:00 The grief no one sees Amelia explains the “grief for your former self” that follows diagnosis and how fear of complications shadows everyday life.
• 9:30 School years: control, labels, revolt Amelia recalls being monitored and restricted at school, rebelling in search of freedom, and being seen as a “naughty” child.
• 12:45 Behaviour is communication Gill and Amelia reflect on misunderstood behaviour, and how love and persistence from Amelia’s mum kept hope alive.
• 15:30 The support gap: CAMHS & key adults No key person, no real mental health support - Amelia recalls pleas for help that went unheard and misconceptions that still persist.
• 19:50 Masking and the mental load Diabetics look “normal,” Amelia explains, but behind the mask lies constant calculation, anxiety, and fear - rarely acknowledged by clinicians
• 23:50 Tech helps—doesn’t fix New pumps and sensors are amazing, but the emotional connection between diabetes and mental health is still missing.
• 27:40 Pregnancy with Type 1: the reality Amelia shares her intense pregnancy journey, the sickness cycles, and the relief of safely delivering her daughter, Cleo
• 31:50 Safety: sugar or insulin? A near-miss story shows how misunderstood Type 1 can be - even by close friends - and why everyone needs basic knowledge.
• 33:50 Power of peers: finding Natasha Amelia remembers diabetes camps, lasting friendships, and the importance of peer support and belonging
• 40:00 Lemon lightbulb: train the grown-ups. Amelia’s first big takeaway- educate teachers, carers, and health staff about the emotional as well as physical sides of Type 1
• 48:00 Lemon lightbulb: separate awareness days Her final message - Type 1 and Type 2 need distinct awareness campaigns to end confusion and stigma once and for all

Transcript

Gill Phillips  0:00  

Gill. My name is Gill Phillips, and I'm the creator of whose shoes, a popular approach to coproduction. I was named as an hsJ 100 wild card, and want to help give a voice to others talking about their experiences and ideas. I love chatting with people from all sorts of different perspectives, walking in their shoes. If you are interested in the future of health care, and like to hear what other people think, or perhaps even contribute at some point, wild card whose shoes is for you. So welcome back, dear listeners for another episode of The Wild Card who shoes podcast. This episode is being published on the 14th of November, which is World Diabetes Day. So I'd like you to stop and think for a moment. How much do you know about diabetes, and specifically type one diabetes. What is it like to live with type one diabetes as a child, as an adult? Do you get confused with type two diabetes lots of people do today. I have the great pleasure of talking to Amelia Wilkinson, a young woman living with type one diabetes since the age of 10, and who wants to help us understand more. I am looking forward to learning more about behavior and mental health and other things that I never thought about in this context until I met Amelia. So we hope that by publishing this episode today on World Diabetes Day, it will help raise awareness and understanding in order to provide the care and support that people living with this condition need. So welcome. Amelia, where should we start? Would you? Would you perhaps like to tell us a little bit more about yourself and how we came to record this podcast together?

Amelia Wilkinson 2:08  

Hi, Gill, thanks for having me. Yeah, absolutely. So I have been diabetic, like you say, since I was 10 years old, and I ended up working with a gentleman called Stephen Russell at Elements support a couple of years ago. So it was through Stephen and the work that he does with young people that you and I became acquainted. And it was actually also through Stephen that he opened my eyes into realizing actually trauma looks different for everybody, and just because you came from a specific type of background, doesn't mean that your paths won't be the same. Put that into context, Stephen does a lot of work with children that have come from the care system, and you know, their paths can quite often be quite turbulent. They can get into things when they get a little bit older. And actually, I related to this on a very deep level, because I took a very similar path to these children that are troubled, but I didn't have a troubled background in a family context. I came from a very good family, but the trauma that my diabetes caused me as a child threw me off, and yeah, so it actually opened my eyes into realizing that trauma looks different for everybody, and we shouldn't compartmentalize certain traumas for certain backgrounds.

Gill Phillips  3:29  

That's just so interesting. And for people listening, you might have listened to my episode with Stephen Russell, and if you haven't, then please do, because I really think it's it's such an incredibly important episode, understanding what it's like for children growing up in different circumstances. So Stephen spoke, as Amelia said, about his childhood growing up in care, but he's doing amazing work now helping other young people, and I'm finding that I'm meeting some really interesting people through this incredible network. So the work that I've done, just to put a little bit more context and how I came to meet Stephen, I've been doing a detailed, long term piece of whose shoes work in Staffordshire, working with both Midlands partnership Foundation Trust and, more recently, Staffordshire county council, and to be honest, unless they work together, nothing is going to change in terms of getting under the skin of these problems and integrating services for children and families. So it was through that work that I met Stephen and then through that work that I met both Aurora Thompson, who was a very recent guest on the podcast, talking about her experience of autism and now Amelia talking about type one diabetes. Now I really know, as I suspect, a lot of people, very little really about the detailed implications of being diagnosed with type one diabetes living with. It. How does it affect your day to day? I did mention to Florence Wilcock, whose my great friend from the maternity work that I've done, that I was talking to you, Amelia, and that you've got a little girl, yeah. And she said, Oh, I'd be so interested also, as part of the podcast, to hear, if you wanted to, how that affected you during pregnancy, because she says that she knows it's a very, you know, as an obstetrician, a very controlled pregnancy compared with perhaps most pregnancies, in terms of keeping you safe and giving you the best outcomes.

Amelia Wilkinson 5:32  

Yeah, no, for sure. And actually, I think that feeds really nicely into a lot of the problems I had when I was younger. Mentally, I'd kind of written off ever having a child, because it is such a massive thing that diabetes, there's, there's not really any part of your body that it doesn't affect, you know, physically, I think people are a lot more aware of the physical parts of it. You know, it can affect your heart, it can affect your eyes, your legs, your nerve endings, your kidneys, you know, it really does. It really does affect your body. And then you've got the mental side of it. Now this is the thing that is, I would say, mostly unspoken about. I yeah, I mean, it really does. It. The only way I can describe it is when you get diagnosed. And obviously I can only speak for myself, but I do have friends who are diabetic that I've kind of I met when I was younger, and we've stayed connected. And yeah, the only way that I can really describe it is you feel a sense of grief, and you're grieving your former self. You're never going to get that person back again. Your life is never going to be the same again. And I always grew up thinking I'm never going to have a child because it's so difficult. There's so many more risks associated with a diabetic pregnancy than there is with a normal one. So actually, when I had Cleo, my daughter, it honestly felt like such a such a blessing, but it was, it was really hard. I had a voluntary C section, although I think it probably would have ended in a C section had it not been elective. I was sick all the way through. At the beginning of my pregnancy, I had, obviously, you know, pregnancy sickness, so I was in a horrible cycle of I'd eat, I'd then be sick, and then my blood sugars would drop because the insulin had no food to work with. So I'd then have to have sweets to bring my blood back up, and then I'd be sick again because the sweets were making me sick. So it was just this constant cycle of sickness. And actually I lost weight in my pregnancy, and I weighed less than where I started. So it really, goodness, yeah, it really affected me. You know, my feet was swollen. My blood pressure was very, very high. I spent the entire pregnancy in the hospital, in and out, sort of being checked for for complications, but luckily, I delivered a very healthy little girl. And actually, after the C section, everything went perfectly, and it all went back to normal for me. So I was very, very, very, very lucky. That's brilliant to hear. Yeah, no, absolutely. But I do think that feeds into, you know, the the emotional and mental strain that you feel when you're a younger person, these are all very real risks. I mean, it's hard to kind of explain what it feels like to grow up knowing that you're not just having to watch everything you eat and, you know, becoming almost a mathematician, trying to work out carbohydrate content, but then also trying to think about external factors that might affect what your blood is going to do. So every day, your blood will behave differently, especially with women, with your menstrual cycle, you know, where you are in your cycle, your blood will behave differently. So you've got that side of it, and then you've also got the fear, you know, the fear that you might wake up blind, the fear that you know your heart might stop working, the fear that you're going to have kidney damage, or, you know, all of these things are so real for a type one diabetic, but we look normal, and everyone expects us to behave normally because no one else sees it. It's all inside us. Yeah, there's a lot to it. There's a lot more behind the diagnosis.

Gill Phillips  9:33  

It's incredibly interesting, insightful, and I'm trying to sort of go back to in my head, Amelia, age 10. So had you been healthy, you know, non diabetic, before then? Yeah. Did it come about? And then perhaps talk about school a little bit?

Amelia Wilkinson 9:51  

Yeah, of course, yeah. I mean, I'd always been, I say, a healthy child. I was healthy lifestyle wise, but I did have, I. Unexplained allergic reactions for a lot of my childhood, which actually now reflecting on it, and having done a little bit of research, I think it was probably my immune system shooting out some warning signs that I was going to get diabetes. But other than that, yeah, I lived a very healthy childhood. You know? I was very outdoorsy, very high performer at school. I did very, very well, incredibly well behaved. Just, you know, a good kid. And I got diagnosed when I was in year six. So it was quite a pivotal time to get diagnosed in your childhood, because you're just about to go through the transition of primary to secondary school, which is huge for anybody. So all of a sudden, my kind of normal childhood had then turned into something that I felt was a very controlled environment. So I was, you know, I was watched by people, by my parents, by my teachers, what I ate. I was made to test my blood in front of people. I had lots and lots of, you know, medical appointments and things like that, and I felt very restrained and controlled. And therefore, when I went to secondary school and I started to see older children and children from different backgrounds, and the different levels of freedom that children had depending on what background they came from, I ended up, I suppose the children that had the most freedom that really resonated with me, I wanted to be like them. And you know, when you're looking at age 11 and 12, the kids that have the most freedom, unfortunately, tend to come from backgrounds where their parents might not be as involved, or, you know that the care system things like that. So it wasn't long before I started to, you know, befriend the people that I maybe wouldn't have had I not been seeking this freedom, and I just went on a slippery slope down, really, my, I mean, my school behavior was awful. I was getting excluded, left, right and center. I was always on report. My whole secondary life was just me being an absolute nightmare at school and and at home as well. You know, I started to take alcohol and drink and stay out. And, you know, that never really got better for the duration of the rest of my school year, my school life, sorry. And the deeper I got into it, the less I looked after my diabetes, and the more I seeked, you know, excitement and and being free, although at the time, I think the only person that knew that that behavior was a result of all of this was my Munt. Everybody else just saw it as you know, she's she's come from a great background. She's just been a brat. She's just naughty, a naughty kid. But, you know, behavior always has. It speaks more than what you see. You know, you it's not always what you see.

Gill Phillips  12:46  

Behavior is communication, isn't it? Yeah, yeah, it is.

Amelia Wilkinson 12:51  

It is. It really is. And I truly believe that, you know, you don't wake up one day and decide I'm gonna I'm gonna be naughty. You know, it's more to it,

Gill Phillips  13:02  

but your mom understood, and she might not have done I mean, she'd obviously, she knew about the diagnosis, she knew about the medical side of things, but to actually really understand how that relates to behavior and a naughty child and the change in you. Yeah, tell us a bit more about that, because that sounds incredibly insightful and special from your

Amelia Wilkinson 13:23  

Munt, yeah. I mean, my mom, my mom is amazing, and my mom was always wherever I was in my life. And, you know, she's, you know, my mom is a very good person. She's never been involved with with bad things. So it must have been so hard for her to watch her daughter go through what I was doing, and her in her sort of, her reaction or her like instinct, would, you know, does she pull me in closer, or does she just let me go and let me come back to her? And I think that was the fight. You know instinctively. She wanted to pull me closer, but the more she pulled me closer, the further away I'd go, and it did damage our relationship for a long time, but she was always there. She was always there trying, and she always understood me, and I never realized until I was old enough to reflect. It wasn't until really I started working with Stephen, I was able to reflect on my childhood and be like, Okay, this is actually why I was like that, because that's not who I am. It's just, it's what happened. But my mum knew it the whole time. You know, she knew that I would always come back eventually, and she understood why I was like that, and she tried to get help. You know, she literally cried for help from the teachers, from cams, from social services, like she was asking for help, but all anyone saw was this child that couldn't behave, and the help was never there. There was never a deep level of help available for me. There was never any understanding of type one.

Gill Phillips  14:56  

So your Munt was super supportive, yeah, and I can. Relate to this as a mom, as a grandparent, you know, struggling, yeah, not knowing really what she was dealing with, but just loving, loving your daughter to bits, and wanting the best, yeah, and wanting to sort of help you through it, so you'd have had the rest of the year in primary school and then the transition to secondary school, yeah, and I'm guessing that key people or lack of key people, would have been quite pivotal to that, and how much awareness there was of your diabetes, and yeah, how the teachers address that beyond checking physically that you were safe, which would be the easy thing to do.

Amelia Wilkinson 15:36  

Yeah, no, for sure. And actually, when I think back to that point in my life, there's no key people. There was no key person. So, oh my goodness, yeah. I mean, the one person that stands out for me is a lady called Chris. She was my childhood diabetic nurse. Now I was diagnosed at 10. By 13, she'd already gone. That was the longest person I had in my life, but she had nothing to do with school. She had nothing to do with anything, apart from my diabetic appointments at the hospital, yeah, but, you know, my mum had her number. We could check in with her, like she was very helpful as soon as she'd gone that went with her. So just to put it into perspective, even now, I have no person that I can message out of hours about my diabetes. Really, the only support network available is peers. There's never been an implementation of like, of what I had when I was 11 with that nurse anywhere else so that also, you know, you can take that into school. I never had a key person at school. The most dealings I had with anybody at school was the head of the school, because I was always naughty, and he was lovely. He was really nice to me. I feel like some of the teachers could see behind the facade. Some of them definitely couldn't. But I never had, like, anybody that would sit down and say, what's going on? Like, what is actually going on? I actually remember my form teacher at one point saying to me, if you just look after your diabetes, it could go, can this? And I remember I was only I was year seven, so I was 11 or 12, and she'd said it, and I'd only been diagnosed for a couple of years at this point, and I remember just kind of looking at her and thinking like, really? And I took that home to my mum, and my mum was so upset that she'd said this, and obviously now she was getting it confused, of type two, which is done all the time, and it, it was such a hurtful thing knowing that she thought that. And that's what so many people think it's what, you know, it's so many people, you will mention your diabetic and their immediate response, or, you know, thought is that's, that's self inflicted. You've obviously not looked after yourself, or, you know, you don't eat the right things. I mean, it's just not true. But that, again, just feeds into the absolute lack of understanding. And it's, I know this. I know I'm 32 now, so this is going back 20 years, but it's still very present. I put a LinkedIn post up the other week, and my reason for it was because I was reflecting on some photographs of when I was at school, and this photograph came up of me and this girl I used to hang around with took a selfie in the mirror, and I remember taking it because we were we were skiving off a lesson, so we're hiding in toilets. Took this photo, and I looked at this photo, and I thought she was in care, and this is where I really made the connection between trauma can look completely differently for everyone. You should never judge someone's trauma, but she'd come from the care system. You know, her mum was an alcoholic, and she'd been taken away and put into the care system, and she really struggled. And I'd found a connection with this girl, and we were in the same toilet skies, in the same lesson at the same time. Yeah, our paths had been so different, but they'd both led us to that same destination. And I shared this with LinkedIn, and actually it did really well, and I got 1000s of comments, but one comment really stood out, and it was someone that works in a school in England. It basically minimized my trauma and said you shouldn't be taken away from kids that actually need the help just because you don't like your diagnosis. Something along that lines. And I thought, there's the problem, there's the problem. It still exists. You're still categorizing people's trauma, and you're deciding whether that's worthy of being traumatized by Well, yes. And he's in his school. He's teaching children what's to say. There's not a type one in his class that is feeling all this, and they're not worthy of feeling that, because there's someone that's, you know, had a, in his opinion, more troubled childhood, and actually needs the help. So it's really sad, really, really sad,

Gill Phillips  19:51  

but it's so insightful. And in terms of the work that I do, it's, I'd say, sadly, common across the board. Lord. So, so the example that immediately came to mind was in maternity. And who decides whether it was a difficult birth? Yeah. So according to an obstetrician or a midwife, who see births all the time, that's what they do. They'll have their own idea of coming out at the end of the day and saying, Whew, that was a difficult birth. But in terms of the trauma caused by that experience, somebody else who, apparently, you know, wasn't even on the radar, in terms of what the medic might regard as the difficult birth, might be traumatized for years by their birth experience, absolutely. And it's very similar, isn't it? Yeah, not up to others to decide, like, a pecking order of trauma and to compare you, yeah? And you can see, like, I mean, you've described it so well, two different experiences, two different routes, but effectively on that day, coming to the same place, yeah, yeah, and finding peer support in each other, absolutely, even though you perhaps haven't got that much in common in in other ways or more obvious ways.

Amelia Wilkinson 21:11  

Yeah, no, it's well, it's massive, really. I mean, yeah, yeah.

Gill Phillips  21:17  

So how did you come to work with Stephen? Was that? Yeah, tell me. Tell me more

Amelia Wilkinson 21:22  

about that. Yeah. So I had seen him on LinkedIn, and I'd found him on LinkedIn, and he was looking for a virtual assistant. And I used to be a virtual assistant before I had Cleo, and then obviously, while I was sick, I kind of toned that down and just worked with my dad. So when I saw Stephen's advertisement for needing a virtual assistant, and his work really resonated with me. I thought, Great, I'll get involved. We got on really well, so I ended up working for him for nearly two years, actually, alongside the job that I do with my dad as well. And yeah, I mean, it was, I feel like, actually, that that Job was destined for me, because it helped me find my voice. It sounds like it, yeah, yeah. And it, it taught me so much about myself, not through anything that he'd done in particular, but just how much his cause and the things that he spoke about like I it really just it really resonated with me, and it's not something I expected either. But, yeah, I really just feel like that Job was was meant to be,

Gill Phillips  22:28  

and I think that's how life works. You know, if you're open to different opportunities, and if you're open to learning from things that aren't obviously exactly what you know you relate to at that moment, but just to absorb what's happening around you and so on. And I think the way that Stephen supports young people, I mean, already we've got Aurora, haven't we in common? You know, the network around in terms of other inspiring young people who've probably been inspired by Stephen and others say, to put themselves out there a bit more to see Aurora that day on the stage, public speaking on the first time that, as far as I know she'd ever done that. Yeah, I'm absolutely rocking it. So you get people who give you opportunities around what they're doing, and you see, you see that the kind of experience that someone like Stevens had could either finish you really or you're inspired by someone who goes beyond that and takes the very best and builds and helps others, yeah, you know, in particular, the young, young people these days that he's helping, yeah. Do you think things are changing at all? I mean, in terms of a special person, someone who really understood at school, was that just chance? Is that chance now? Are there any more sort of safeguards in place? I'm thinking about young carers or someone with diabetes, or anybody really who's got some need to be understood.

Amelia Wilkinson 23:56  

I think, from what I understand, there are, I mean, technology has come so far since I was younger. When I was a child, it was test your blood with a finger prick and do your insulin with a pen. And now, you know, a lot of us are on pumps and CGMS, so they work together, and they control your blood like a robot. Really. It still does take, you know, an element of your brain power, don't get me wrong, but technology has just come so far since I was a child, so you've got that benefit, and that also then opens the doors to school nurses being able to have access to students blood sugars and stuff, which is fine, you know? I mean, I suppose that was just a glorified way of how it was done when I was a child. Because when I was a child, it would get to break time lunchtime, and I would be held back in my lesson and asked to test my blood, do my insulin, make sure I eat. So it is similar to that. It's just more of a it's just come along a long way since then. I think the big gap is the Connect. Action that hasn't been made publicly yet between diabetes and mental health. And obviously, mental health can present in so many different ways. Okay, you might know what your student's blood glucose is. It might be fine. It might be a bit high, but do you know how that student's actually feeling? Do you understand what that student has been thinking before school, or, you know, what calculations are they going to make, or what's the weather going to do to their blood today? There's just so much going on in diabetics head that is so much deeper than what their blood sugar is. So safety wise, it's definitely got better, because, you know, if a student's having a Hypo you might have someone that's more trained to deal with it and to help them, but yeah, I think on an emotional level, it's just not there. And just to put that into perspective, obviously, 22 years, I've been diabetic now, and I can hand on heart say, not once, not ever has any of my diabetic doctors, nurses, anybody ever said to me, how's your mental health really now, I'm not talking you know, how's your mental health in general? How is your mental health that is directly associated to your disease? How is your mental health? Because if you look at those figures, they're absolutely awful. I can't remember off top of my head, but diabetics are more likely to have depression, more likely to commit suicide. You know, it can cause anxiety, like I say, it kind of mimics symptoms of grief, so you've got all of that. It that there's so much connected with diabetes, because, like I said earlier, nothing will ever be the same again. And I really want to deliver workshops to like schools and care homes, anyone that's dealing with young people that might be type one. And one of the big things I would talk about is masking, because diabetics are pros at masking, because, like I said earlier, we all look normal. You wouldn't know a diabetic. I've actually had people that you don't look diabetic. I mean, what does a diabetic look like? It's happening inside our body. You can't see. It's ridiculous. Yeah. So the masking is a form of, you know, defense and protection that we're doing, but actually probably a form of self harm as well, because no one is seeing what's happening inside and the struggles that we're dealing with, because people don't understand, and you don't talk about things that people don't understand. Because why? Why would you Yeah, you know, there are conversations I've had with my diabetic peers that I would never have with anybody else, because no, no one else would get it. And that's a lot for a child to deal with, a huge amount. And it doesn't get easier as you get older, you know, I, I genuinely fear about, you know, I There are so many people around me that are literally waking up and they can't see because the, you know, the vessels in their eyes have been so damaged and stuff. And it's a real fear. But diabetes just isn't viewed like that, and it shows in every every aspect of society, including things like, you know, Pip. Pip is available for people with mental health problems. If you've got anxiety, you can get Pip, but you don't get it if you're diabetic. And my question is, why? Why did the diabetics not qualify? Because we just crack on. But it's not easy. It's not easy to just crack on. It's really tough. There's so many sort of aspects and avenues of it where we're kind of just being failed all around us, because all the doctors and all the healthcare professionals, all they're looking at is our data. You can't judge how a person is based on their data.

Gill Phillips  28:41  

You are doing such a good job here, Amelia, you really are, because I'm seeing how much I'm learning, and I've had a good friend, sadly, she's died. But she she, she was, I think I mentioned my friend, yeah, the grandma brought up her grandchildren. So my friend, Joan died young, and Pat looked after the children just brilliantly as a granny. And I always knew that she had type one diabetes, and she was very proud. You know, independent person, sort of cracked on with things. Exactly what you're saying, Yeah, and I'm thinking of her as you're speaking in terms of we all tried to help her, like the young Munt has tried to help. And we did, you know, supported Pat with looking after the two children. She was just lovely, so special. But it was almost like, oh, and she's a diabetic, yeah, rather than really fundamentally understanding that, yeah, you know, any extra sort of pressures or worries, and just bringing up the children on her own with those kind of worries, and as an older person, yeah, yeah.

Amelia Wilkinson 29:47  

I mean, I think a diabetic would never want personally, speaking, I would never want it to be my personality. I'd never want people to look at me. But, oh, there's Amelia. She's diabetic. But by the same token, I do think all the doors need to be opened for the conversations around it, in order for the support to be there, but also like the things, especially for young people, that they're feeling to be validated and to be made known that that's okay, that's normal. There are other people that feel like you, and it doesn't have to be your personality for it to still be regarded and understood to be a massive part of who you are, yeah. I mean, when you talk about your friend, I totally get that. And I've got one thing that sticks in my mind. So I had this best friend, and we were best friends for like, 15 years, and I had a seizure, I had a hypo, and I started to have a seizure, and there was a few people around us, and her instinctive fate, like her first thought was, Amelia needs insulin. Now, if she'd have given me insulin whilst I was having a seizure for a hypo, I would have died well, and it was just lucky that there was someone else in the room that wasn't a particular friend of mine that said, no, no, she needs sugar. But that showed me actually, this is how little I talk about it, because my best friend, who I spent so much time with, and you could ask her anything about me, other than about my diabetes, and she'd be able to tell you, but she was so on, educated about the diabetes, she would have actually caused my death in trying to save me. Because at no point do I sit down and say, Look, this is, this is what needs to happen if this happens, because it's just not you don't want to kind of you don't want to be known as the diabetic. You don't want to be known as the person is different, and again, that feeds into the childhood thing. It's this absolute, like you just want to be normal. You just want people to be normal. So in my quest to be seen as normal, I became naughty because I'd rather have the attention on me for being naughty than the attention on me for being different.

Gill Phillips  31:58  

Makes sense. It does it makes perfect sense, yeah, and so, okay, so within a school setting, yeah, you've got the general population, you know, how much should children know through is it phse lessons, about mental health, about certain conditions, about Yeah, young carers, about diabetes, about children care, yeah, but then you've got somebody that, you know, I'm just thinking, like, really, best practice. You don't want to make those problems that you've just explained so well worse by singling somebody else. Yeah, there's such a massive safety thing, isn't it, for the other children. If something happens, this is what you do, yeah, rather than that random, yeah, of course be nothing. It could be, give us sugar, give her insulin, and what a responsibility for others. 100%

Amelia Wilkinson 32:50  

Yeah. I mean, I think, you know, I think everybody should be made aware, and there needs to be a massive, massive campaign globally, really, to make people aware that type one is not type two. And the bare minimum, if someone is having a seizure on the floor, their blood is low and they need sugar. You know, likewise, if they're confused, you know, it presents very differently per person. But a high a hypo means you need sugar, and a high power is is that they need insulin that should be kind of understood by everybody. But I think when you're talking about the actual emotional toll, and there's the, you know, the psychological toll that diabetes can have, I think that's more something that needs to be available as a conversation for the type ones, but also then understood by the adults, or the responsible adults in the situation, whether that's healthcare, whether that's at their home, at their school, that's not necessarily something that all peoples need to be aware of. It's not that's quite a personal thing, but the people that matter need to know.

Gill Phillips  33:52  

Yes, yeah. Okay, so I think that naturally brings us on. So I've got a couple of things. So one of them is awareness days. So this is World Diabetes, I don't know it's called awareness, yeah, World Diabetes Day. And what do we think? What do you and I think Amelia about about awareness days, because we were talking about this briefly, weren't we, when we had a chat the other day, preparing for this?

Amelia Wilkinson 34:16  

Yeah. Look. I mean, the first time I found out about it was in 2017 and my best friend tagged me on something on Facebook, and I remember seeing it, and I was outraged. I was outraged now I was, at this point, not so much at peace and understanding with myself as I am now. So my Anna towards the diabetes was huge, and that was pretty much more like felt, and I could not understand why such a horrible disease that, in my opinion, at the time, ruins your life, was being celebrated or made aware because the right things weren't being made aware. It was more just, oh, pat on the back. Diabetic. You know, Well done, guys, that has kind of been a similar flavor to how I felt about it each year, although I am more now at peace with the disease than I was back then. But look, I understand the concept you're trying to raise awareness, but I don't think it's being done, maybe in the right way, and the right awareness isn't being raised. It's going to take more than a day designated to the disease for people to actually sit down and have the conversations that are needed at the minute. Personally, I don't feel like there's a huge amount to be celebrated. It's quite bittersweet. On one hand, I can see the positives, but I can't help but feel negative towards it, yes, yeah, it's a strange one.

Gill Phillips  35:47  

It really is. And I think for me, the whole concept of awareness days, and again, I think, like so many things, are being diluted by having, you know, probably every day of the year is a special day for for something, yes, and for me, so I've been living with breast cancer sort of diagnosis since 2002 and then with further experiences only a couple of years ago. So for me, like Breast Cancer Awareness Day, world Breast Cancer Day, you know, breast cancer awareness month in October. Thankfully, it's just finished, because I think we're recording this on the first of November, yeah. And it's, it's such a mixed blessing, because you want people, you want money to be raised. And I think some of these days are incredibly effective in raising money, you know, perhaps having some fun events, Macmillan coffee mornings and all the rest of it, yeah, and obviously, charities and research need to raise money to help people and to research better care and treatment and cures. You know, ultimately, but the crassness with which day to day, some of these things can happen, and yeah, they can really be very triggering for people who are actually living day to day with that condition. So I remember when I was not long back to work in my day job, when I had my sort of first experience of breast cancer back in as I say, 2002 and I've been off work for 16 months. I'd had chemo, I'd had radiotherapy, I'd had the lot, and going back to work, I used to go out at lunchtime and go down to the shopping center. This is in Coventry, and you had to walk down quite a narrow road with building societies. And they used to be and it felt like running the gauntlet, these people with these tabard jackets saying Breast Cancer Awareness, or whatever it was, with clipboards, and literally accosted me and saying, Are you aware of breast cancer? And, you know, it's like, right at Yeah, you've got no choice. And they would have been people who were paid to get some, you know, some comments and statistics, whatever, yeah, who got, as far as I was concerned, very, very, very little awareness of breast cancer. And there they were, apparently with this right to sort of jump out at me on the pavement. And it's funny. I mean, that's what over 20 years ago, yeah, things like that really stick. They do.

Amelia Wilkinson 38:15  

They do. Yeah, no, absolutely, I completely understand what you're saying. And it's, it's just so insensitive. I mean, nobody knows what someone's going through, and the likelihood that someone has been in some capacity affected by something like cancer is big. I mean, that must have been absolutely horrifying for you, and I totally understand. I mean, one of the things that really doesn't sit right with me about World Diabetes Day is that actually is one of my biggest things about diabetes, is that it's celebrating type one and type two, and this is one of the most damaging things that society is causing when we talk about diabetes, there needs to be, I mean, I don't even think they should have the same name. There needs to be a big way to distinguish between the two. And it's, you know, I mean, the amount of diabetics type one that will tell you when they tell someone they're diabetic, and, you know, people's first instinct is to say it must be about their diet, or, you know, they're overweight, or their lifestyle, yes, or even it could be reversible, like we said earlier. Now, type one and type two are two completely different diseases. Type Two, yes, okay, that can be lifestyle related. Sometimes it can be reversible, and it's sometimes treated through tablet and diet. But type one, your pancreas has just stopped working. There's no There's no fault in that. It's quite often genetic, you know. I mean, how can a 10 year old be to blame for being a diabetic? And it is something that all type ones will tell you really, really grates on them, because there's just this massive misconception between the two, and it damages the understanding of type one. Now, personally, I think it's awful that National Diabetes Day is celebrating both of them together. How can you

Gill Phillips  40:00  

right, yes, and that would be Yeah, that would be an amazing result. Wouldn't it if somebody in a high place got that yeah, and perhaps had a type one yeah Awareness Day, yes, just that they can have a type two Awareness

Amelia Wilkinson 40:19  

Day. It's it's Yeah, that's a massive thing. And I hope somebody listens to this and picks that up and does it, because I just think, until you're actually separating the two, they are not related to each other. There's nothing about, you know, yes, okay, type two, your pancreas is not working to capacity, but they are not the same thing, and they should be celebrated, or, you know, made aware of in their own right. Exactly.

Gill Phillips  40:45  

Wow. Okay, well, that's something, because I, like, you know, like lemon light bulbs from these podcast episodes, that is a mega lemon light bulb. Isn't it separate them? Yeah, it's not undermining one or the other or Yeah, it's, it's informative, educational, yeah, this is what it is, yeah. And it's not the same as that. Yeah, 100% Yeah. Two certain things. I'd say that the most of the general population probably don't really appreciate that, and certainly not in the depth, you know, the things that that you've described as a result of, yeah, the diagnosis, yeah. Have you seen yet? I don't know. I mean, this is this episode, dear listener, has come together incredibly quickly. So we've been just chatting a little bit on LinkedIn, and I was able to introduce you, I think, yesterday, to Partha Carol, who has been just an incredible voice in this space, yeah, a very well known doctor who rocks it, I think, in this space, in terms of telling things as they are. So if one outcome from this was perhaps for you to team up with him in some way. And those ideas we've just had about separating an awareness about type one diabetes, but I don't know if you've had a chance yet, and I've only looked briefly, but I absolutely love fab NHS stuff and everything they do, and they've been very supportive of me and of whose shoes. We've got our own whose Shoes Collection. They just I think what we've got in common is I've got a JFDI badge. JFDI is just do it and Fab NHS stuff get on and they collect, you know, it's what it says on the tin, fab stuff from across the NHS. And they don't make a big song and dance about it. You don't have to fill in a 55 page form and go through some registration to put it on. They just collect the good stuff and put it out there. So I think on this same day, 14th of November, they're launching another episode of this comic strip that path has been involved in, and I've only had a chance that with quite a quick look at it. But I think you'll love it if you haven't seen it already. Now, have to have a look. And it's got the one I saw, which I think was the first edition, was a young person at school, and they're feeling a bit sleepy and they're being told off. And, yeah, their behavior isn't as good as it used to be. And why is that? Nobody's really trying to find out why. It is just that they're not as quick mentally or as engaged as they were before. And, I mean, I'm hearing exactly that with this good girl at school, very high performing. And for people to look below the skin in terms of how you're feeling and how you're dealing with something as well as just the medical staff, yeah? So I think you'll enjoy that. We can put a link to that, I think, in the podcast notes for here, yeah, for me, it's all about like, connecting and sharing and cross fertilizing, really good ideas.

Amelia Wilkinson 43:47  

Yeah, yeah, no, I love that. I'd love to take a look at it,

Gill Phillips  43:51  

and I did share briefly on on LinkedIn. It's funny how things come full circle, yeah? So it was some earlier work around the experience of children and families in health care. And we've always had poems in whose shoes. And I had this poem written by a young boy of 10 who had been diabetic since he was age one. And Shall I read it?

Amelia Wilkinson  44:17  

Please do. Please do. I just think it fits perfectly.

Gill Phillips  44:24  

So this was over 10 years ago when I was working on a project called CYP me, first with Kath Evans, who's absolutely brilliant, and just did amazing things around children and families. And we, at the time, were very, very active on Twitter, and this was sent to me by someone who tweeted as one diabetic son, and she sent me this poem, obviously with consent to include in our whose shoes resources, written by her son, who was aged 10 at the time and diagnosed with diabetes when he was one. Okay, so it's called My Life exclamation mark. I needed to go for a lonely walk because at that time I didn't want to talk. I am 10 and diabetic, and sometimes others just don't get it. There. I sat in my secret place so no one could see my face in that place. I can be sad, even angry, and get mad. But then I stopped and sat on the ground, looked at the beauty all around. So what if I have a pump? It doesn't mean I should be in a grump. And then I realized Life was good to me, and all around was as beautiful as can be. It's beautiful

Amelia Wilkinson 45:46  

love that it's really interesting actually, because I've only got my own perspective from when I was that age, but to hear other children that age speak of their perspective, and it's quite comforting knowing that I wasn't the only one that felt so alone despite not being but also, yeah, I love that he was able to vocalize that and bring something positive out of it.

Gill Phillips  46:11  

Yeah, it's beautiful, isn't it? And I'm wondering, when did you when was the first time you got to speak to another child who was diabetic. So

Amelia Wilkinson 46:22  

I was very lucky. My parents would take me to they used to be there were diabetic holidays, essentially for children. And I actually, I met my best friend, who is still my best friend on that holiday. So I went on about three of those as a child, and I connected with lots, and they were really helpful, because it was the most free I felt as a child of diabetes, because you were literally surrounded by people who got it, of course, yeah. Now, obviously we're too young to kind of have any meaningful, deep conversations about how it actually made us feel at the time. But because of those holidays, I developed my best friend Natasha, which is still a very strong connection that I have, and we've kind of done life together. You know, she's had it really tough. She's ended up having a feeding tube, and she's lost an eye. But I mean, her strength is incredible, and she's such a such an amazing person, and we've just kind of like pushed each other through certain hurdles that we've reached, which is really important. So, yeah,

Gill Phillips  47:26  

I'm glad you've got Natasha on it just shows that peer support is everything, isn't

Amelia Wilkinson 47:30  

it, yeah, it is, yeah,

Gill Phillips  47:33  

yeah, very important. Well. So Well, we're coming towards the end. What? Yes. What message Amelia, would you like people to take away from this podcast? What are your lemon light bulbs?

Amelia Wilkinson 47:47  

Okay, so the first one is, anybody working with children that could be type one? Need training. You need to understand. You need to invest in people that are delivering things such as, you know, life experience and dual perspectives on the condition, so that you know what to look out for now, that is education, parents, even care, staff, anything like that, maybe even doctors and nurses, so that you can understand the mental and emotional impact that it has on these people, so that You can ask the questions that you need to ask. And the second one, let's separate the days. Let's have a type one and type two separate days awareness, because that is that is massively important and it needs to happen.

Gill Phillips  48:36  

Well, thank you. Thank you so much for being on the podcast, and I'm hoping that that you have done as much on World Diabetes Day as anybody else in the world, to take an important message and get people to really understand rather than just see something a bit more superficial.

Amelia Wilkinson 48:55  

Yeah, thank you, Gill. Thank you so much for having me. It's been great.

Gill Phillips  49:00  

Thank you so much for listening. If you enjoyed this episode, it would be fantastic if you would leave a review and a rating, as well as recommending the wild card, who shoes podcast series to anyone who you think might find it interesting, and please subscribe, that way you get to hear when new episodes are available. I have lots more wonderful podcast guests in the pipeline, and don't forget to explore and share previous episodes so many conversations with amazing people who are courageously sharing their stories and experiences across a very wide range of topics. I tweet us whose shoes. Thank you for being on this journey with me, and let's hope that together, we can make a difference. See you next time you.