Helen Wills‘ daughter was diagnosed with Type 1 Diabetes at the age of 9. Helen shares the realities of living with Type 1 Diabetes, the added worries of having a child with the condition, and the misunderstandings people place on those who have to manage it.
- “She was still very healthy and very well. So, had I not already had a friend whose child had diabetes, I perhaps would have persevered quite a long time before I’d taken her to the doctor.” – Helen Wills
- “What people don’t realize is that diabetes can kill. If it’s left untreated and undetected, it kills.” – Helen Wills
- “Technology is our best hope as a community of Type 1 Diabetics, not a cure.” – Helen Wills
- “Before she had the glucose monitor that I can see on my phone, I would get up in the night at 3:00 AM and go and prick her fingers to find out what her blood sugar level was.” – Helen Wills
- “You know you’re right, you just know you’re misunderstood, and that’s hard.” – Helen Wills
- “I find this with schools, even very good schools, which both of our schools have been: In general, they come at things that are different with a view to minimizing disruption in their day, their time, and the other children’s situations. I understand why they do it, but it really is distressing for parents of children who need something different.” – Helen Wills
- “Of course we’re respectful, of course we’re trying to collaborate and partner wherever we can. But there are some moments where, you know, we just need to push and fight until we get the result we know is right for our kids.” – Emily Melious
- “It is going to be okay, it’s going to be more than okay. Your child will learn to live with this and do probably more with their lives as a result of it, than they ever imagined doing before. Because the resilience that they learn and the strength and the self-confidence that they have in themselves at a much younger age will carry them there.” – Helen Wills
- 1:03 – Being diagnosed with Type 1 Diabetes
- 4:53 – How common is Type 1 Diabetes among children?
- 6:28 – Living with Type 1 Diabetes
- 11:15 – Processing the diagnosis as a child
- 13:07 – Having a child with Type 1 Diabetes
- 14:41 – Misunderstandings of childhood Type 1 Diabetes
- 19:45 – Working with the school system and diabetes
- 25:05 – Advice for parents who have a child with Type 1 Diabetes
- 27:21 – Connect with Helen
Mothers of Misfits: [00:00:00] Welcome to the Mothers of Misfits podcast. Join me for conversations about how to advocate for our kids in a one size fits all world. Be sure to subscribe, so you never miss an episode.
[00:00:17] Emily Melious: Welcome back everybody. I am really glad you’re here with us again today. Helen Wills is a blogger and podcaster from the UK on her award-winning family lifestyle blog Actually Mummy.
[00:00:28] She writes about the challenges of parenting a child with type one diabetes. She also explores teenage mental health on her own podcast called Teenage Kicks. Helen has a daughter Maddie, who is 16, and a son Evan, who’s 13. Helen, thanks so much for coming on. Glad to have you today.
[00:00:47] Helen Wills: Oh, thank you so much for having me. It’s so nice to be able to talk to you on such a lovely podcast. I love it.
[00:00:54] Emily Melious: Oh, I’m so glad. And you’ve got some great content out there too. So we’re going to make sure everybody checks out your blog and podcast as well. But today we’re going to talk about your daughter, and her process of dealing with type one diabetes. So tell us more about your daughter. She’s a high schooler, right?
[00:01:13] Helen Wills: Yes, she’s 16. So she’s just in the middle of her last GCSE year. That’s kind of final exams here in the UK before you choose to go onto further study, or college or start work.
[00:01:27]Emily Melious: [00:01:27] And that happens fast. And you’ve got lots of insight about getting into those teenage years, but I’m curious to hear about Maddie and her process of getting diagnosed with type one diabetes. What were those early warning signs? What was that process of getting the diagnosis?
[00:01:46] Helen Wills: Yeah, so it’s a classic set of symptoms. And there’s always a campaign here in the UK to raise awareness because it’s not something that most parents or indeed, most initial consultations with a doctor tend to think of. and the two most obvious symptoms, she had them in abundance, which was a great thirst. The body gets such a high blood sugar before you even know there’s a problem that it tries to expel the extra sugar levels by urinating. So constantly going to the toilet up in the night for the toilet where she hadn’t been before
[00:02:24] drinking, lots, asking for drinks, she couldn’t go anywhere in a car for more than an hour without finding a toilet. And it was all quite quick, quite sudden with her. And she was still very healthy and very well. So had I not already had a friend whose child had diabetes, I perhaps would have persevered quite a long time before I’d taken her to the doctor. And in fact, I took her to the doctor with a urine sample, asking him to test it for sugar levels.
[00:02:54] And, he looked at me like I was being neurotic and paranoid and said, oh, it might be a bladder infection, but it’s probably nothing. And yeah, he looked shocked when he dipped it, and it’s such a simple test to do. It’s just a dip in a urine sample. And he said, yep, that’s it. She is a type one diabetic, and that was it.
[00:03:19] Helen Wills: She was nine, almost ten.
[00:03:21]Emily Melious: Do you think if you didn’t have that friend who had a child with diabetes, do you think you might’ve backed off with the doctor in that moment? I mean, it seems like you wouldn’t have even known to ask for that particular test in the first place.
[00:03:32] Helen Will: Yeah, I wouldn’t, I would never have known to do it. And what tends to happen is that parents, because kids feel alright in themselves , and parents put it down to, oh, it’s hot weather so he’s drinking more. Maybe he’s having a stressful time at school so he’s going to the toilet more often because he’s more anxious.
[00:03:52]All sorts of different things, but then it gets further and further down the line and the body can’t access the carbohydrate it’s taking onboard. And so children start to lose weight. And then you think, well that’s normal. They kind of fill out a bit, and then they lose weight a bit, and then they fill out a bit, that’s really normal with kids.
[00:04:11]And then a number of kids, quite a lot of kids do get to the point where they’re very seriously ill. And they have what doctors think is a chest infection, cause that’s another way that the body tries to get rid of the sugar is by coughing and getting stuff out of the system.
[00:04:29]But by that point it’s incredibly dangerous and a lot of kids end up in a coma, in intensive care. And with nurses saying to their parents, thank goodness you got him here as quickly as you did, because he didn’t have very long left to live. And what people don’t realize is that diabetes can kill. If it’s left untreated and undetected, it kills.
[00:04:53]Emily Melious: How common is type one diabetes amongst children?
[00:04:57]Helen Wills: So, percentage wise I don’t know, but there are 400,000 type one diabetics in the UK. Around that number, of which I think it’s something like 29,000 are children under the age of 16. And the most common age of diagnosis has always been in the past, around the age of puberty. So coming up to 10 years of age was a reasonably classic time for her.
[00:05:26] Although it often happens to 12 and 13 year olds, which is a terrible time, awful time to be diagnosed with something like this. But more and more at the moment they’re finding under fives are being diagnosed, and that’s a worrying statistic that people don’t understand, no one knows why. With puberty, they tend to think it’s related to a change in hormones that triggers the immune system to make this response.
[00:05:52] And I understand that, cause I developed hay fever when I was pregnant, having never had it before. So all these auto immune things, I do think they’re triggered by hormonal changes. But at five, I don’t know. There’s hormonal changes going on at every age aren’t there.
[00:06:08] Emily Melious: Well, it always feels scary when we don’t have a sense of the cause, or a feel of control over that. And gosh, for little ones under five, and they can’t even report the symptoms as well. You know, that’s a hard age because they’re not communicating very well about changes that they might be feeling or experiencing. Helen, I’d like to understand for all of us, what are the day-to-day realities for Maddie of living with type one diabetes? Now she’s had about six or seven years of experience with it, what does that look like everyday for her?
[00:06:42] Helen Wills: Okay, it’s labor intensive. And I think that’s what most people don’t really understand. I thought when she was diagnosed, gosh, this is devastating. She’ll have to have a couple of injections a day, which is terrible for a child, and she can’t eat sweets anymore. And I was so wrong. She eats exactly the same as everybody else. The same as she ate before. She just has to have insulin with every carbohydrate, and sometimes with protein, depending on what she’s eating. So the reality of that is an injection every time she ate. every time, which meant that she started to restrict what she would eat, which for child is a mentally, quite difficult thing to have to deal with.
[00:07:30] So Maddie now has an insulin pump, which again, people think is a cure. It’s fine, that’s it, all sorted. It’s so not, because an insulin pump is just an injection that you do once every three days instead of an injection that you do 10 times a day, I would say 10 injections a day is not unusual for a child with diabetes.
[00:07:52] Instead, her insulin pump is changed every three days. And she still continues to take insulin every time she eats. But she does that now by pressing a couple of buttons on a handheld device that she has like a little mobile phone. She tells the pump that she’s having 36 grams of carbohydrate, for example, and the pump works out how much insulin she, in theory, needs for that.
[00:08:19] And I say in theory, because diabetes is its own manager and it does its own thing, and it never tells you in advance. So having taken the correct amount of insulin and done all the maths for the bowl of cereal that she wants to eat , it very frequently goes wrong. And so two hours later, she might be putting some more insulin in because she’s too high or drinking some high sugar drink because she’s too low.
[00:08:50] And that is how it is day in, day out, and in the night sometimes. she had a hypo, which is when you have a low blood sugar in the middle of the night, 4:00 AM. It began a couple of nights ago, she was asleep. She wasn’t doing anything. And it lasted for nearly two hours, and she was up for nearly two hours guzzling sugar, trying to get her blood sugar back up just because diabetes decided it would do something different today. And you never know, So it’s tough. It’s a big deal.
[00:09:19] Emily Melious: Right, and it’s clearly an inexact science. But the good news is that technology has come quite a long way, even in recent years. So just the amount of monitoring and having technologies like information on your phone or having a patch or a device so that you’re not having to physically do injections all the time. Have you found encouragement in the technological developments that have helped her in recent years?
[00:09:45] Helen Wills: Absolutely. And technology is our best hope as a community of type one diabetics not to cure. They’ve been promising a cure in the next 10 years for nearly a hundred years now. And we’re 99 years since the invention of insulin. Also, it’s the first injection of insulin today, actually. And we always celebrate that because without insulin you would die. But the cure is still, there’s hope and research, but it’s still such a long way off. What is exciting as you say, is the ability to hook up an insulin pump with a blood sugar monitor that you wear on your body, and they talk to each other. And more and more of these devices, we don’t have one yet, but more of these devices will become common in the next decade to say, your glucose monitor says, oh, you have a high blood sugar. I’ll tell the pump to deliver some insulin, and you may not even know about it unless you go back and look at your use statistics. And that’s exciting.
[00:10:48] Emily Melious: Oh yeah, because this is something her mind can never retreat from. She has to constantly think about this. And I have a very dear friend that also has type one diabetes. She wasn’t diagnosed until she was in her twenties. But she just laments that her mind can never rest. And it is constantly with her wherever she goes. And you really can’t completely focus on anything else. And, you know, I’m kind of thinking back to putting myself in Maddie’s shoes as a nine-year-old and you get this diagnosis realizing that your life will forever change. That now you have to think about this thing all of the time, you have to learn how much sugar is in every single food you eat. What was that like for her to process this diagnosis as a child?
[00:11:38]Helen Wills: Oh, that’s a really interesting question because the thing that was hard for her to deal with was forever now being different, and misunderstood, and not the same as her friends, and that life wasn’t as easy as her friends’ lives. That took a lot of coming to terms with. But in terms of the relentlessness that your friend describes, you see adults saying that and you see a lot of adults in burnout because of it, and older teenagers.
[00:12:11] When they just get so fed up and all they want to do is sleep without worrying if they’re safe to be asleep. And they can’t ever, ever give up, you never catch a break with it. I would say, she probably hasn’t got to that point. She hasn’t really felt burnout, probably because she’s got our supports as well. We do take a lot of the load off her with it. But I do think kids, from what I see on forums, they’re massively
[00:12:43] resilient kids just get up every day. And where my thinking is, what was Maddie’s blood sugar like overnight? I need to look, what should we do today? What should I coach her on this morning?
[00:12:56] She just gets up and thinks, right, have I got the correct book for this lesson today? And is my friend still in a bad mood with me from the conversation we had last night, you know, they’re getting on with their lives.
[00:13:07]Emily Melious: Well on that note, I mean, you talk about the added worries of having a child with the condition and being in the role of a parent. Can you talk more about that?
[00:13:17] Helen Wills: Yeah, it’s getting better now because she’s older, is taking the reins and I know I can trust her to make safe decisions, even if they’re not the healthiest decisions always. But a child, you
[00:13:30] can never stop worrying. And so you send them to school or you go to bed and try to sleep yourself. And there’s always that backdrop in the back of your mind, that rumbling in your stomach, the whole time of, is my child safe?
[00:13:45] Is he or she okay? Should I phone someone? Shall I check? And before she had the glucose monitor that I can see on my phone, I would get up in the night at 3:00 AM and go and prick her fingers to find out what her blood sugar level was. And so many parents do that because blood sugar can become unsafe in the middle of the night.
[00:14:05] So you just never rest. This is terrible, but I’ve seen parents say that the first thing they think when they wake up in the morning is, is my child still alive? Every morning. And I know that’s the same other conditions as well, it’s a horrific thing. And what’s worst about it, is that no one expects that to be your life. Everybody outside of your life thinks you’re making a fuss about nothing. And yet everybody inside this bubble of type one diabetes is doing the same as you. So you know you’re right, you just know you’re misunderstood, and that’s hard.
[00:14:41] Emily Melious: Let’s flush out those misunderstandings of it more. Cause I know there’s quite a few of them, and it sounds like the first big one is that people perceive it as making much ado about nothing. What are some other misunderstandings of life with childhood type one diabetes?
[00:14:57] Helen Wills: Yeah, well Maddie would say that her biggest frustration is that people will raise their eyebrows if she hits a cupcake, for example. Should you be eating that? Because the stereotype of someone with diabetes is of someone who is overweight, doesn’t exercise , maybe has type two diabetes and isn’t managing it with insulin.
[00:15:19] So if you’re trying to manage a type two diabetes diagnosis with diet, yeah. A cupcake will cause you problems, but with type one, Although a cupcake has to be managed very, very carefully and your timings need to be careful. So it’s arguable whether it’s worth it or not, but for a 10 year old, of course it is.
[00:15:42] She can eat that cupcake as long as she takes the right amount of insulin. Enough time before the glucose from the cupcake hits her system, cause insulin has a 20 minute time lag before it starts working. So you have to take your insulin and then sit and wait for awhile before you eat the cake. So that’s her biggest issue.
[00:16:02] Emily Melious: Yeah, spontaneity really isn’t allowed with diabetes.
[00:16:06] Helen Wills: Well with type two, it can’t be managed easily at all. It’s too difficult. And so yeah, of course, with type two diabetes, you probably do want to avoid eating cake. But with type one, you absolutely can.
[00:16:18] Emily Melious: Yeah. What other misunderstandings are there out there?
[00:16:22]Helen Wills: That you brought it on yourself. That it’s something you did . That you’re maybe, overweight, that you’re not very healthy, that your mum fed you the wrong things when you were small, all of which aren’t true. It’s an auto-immune condition. It happens to skinny people as much as it happens to overweight people, it happens to elderly people, it can happen to anybody. And it, it’s hereditary in some respects.
[00:16:48] It does come from somewhere within your family. So that’s another big one . We have a comedian over here who’s brilliant, he’s so funny, diabetic comedian. He will make jokes about the fact that people look at him injecting and will say, Oh, I could never do that. And he says, well, you could, if the alternative was dying. And making a British sense of humor.
[00:17:14]the other one is , Maddie has had this once or twice, is that you’re doing something horrible and dirty if you’d have an injection in a restaurant. So people are told by other guests in the restaurant, you should go to the toilet and do that. Now, the toilet’s the most unhygienic place in the world to do as a sterile injection.
[00:17:33] Whereas, sitting at your table and looking at your plate of fries, for example, it’s absolutely the right thing to go, right. I think that plates of fries is 46 grams of carbs. I’m gonna dial up my insulin and give myself an injection. And they do it discreetly, but oftentimes there’s problems with judgment for that.
[00:17:54] Emily Melious: Oh my. Yeah. I’m curious about Evan’s perspective in all of this, because it clearly takes a lot of time and attention on Maddie, from Maddie to manage her condition. Does he ever feel left out? Does he feel sort of out on the sidelines because so much attention is going to Maddie?
[00:18:15] Helen Wills: I think he did at the time, cause he was only six. And he was, you know, mommy’s boy, and he lost a lot of my attention and I had to explain to him why that was. And he was great about it, but he was small. So I do worry that that hit him back then. Equally, he loved his sister. And so he was one of my first Instagram posts about it was, a picture of him going through a book called Carbs and Cals that we have, and he was working out the way to, I don’t know, let’s say it was a plate of fries, to figure out how much insulin she, it was like a maths equation for him. So he’s never, if he’s resented it, he’s never shown it really. And he doesn’t resent it, I have asked him now that he’s older and he doesn’t resent it. He does feel it gets in the way of our lives sometimes and that frustrates him. So, for example, if she has a high blood sugar and I’ve got dinner ready, we have to wait, and that dinner might get cold. He might be hungry, but we as a family eat together. And so he might have to wait half an hour for his dinner, for the insulin to start to work. And that does frustrate him of course, but it frustrates all of us, and it’s just a thing that we live with because we love her and were kind to each other and that’s a learning curve in itself, I guess, as a teaching point.
[00:19:33] Emily Melious: Well you’re a family, and that’s what family does for each other. And I’m sure , you know, that changes, you all need different things at different times, and there’ll be times when Maddie sacrifices for Evan. I want to hear from you how you worked with the school to manage your daughter’s needs. I know that wasn’t always a smooth process.
[00:19:53] Helen Wills: Yeah, it wasn’t. It wasn’t, and they kinda ambushed me on my first meeting, I will never forget that. I was devastated by this diagnosis, Everything sent me off crying. I couldn’t talk about it without floods of tears. And I walked into the school expecting to meet the local diabetes nurse who had taught us how to manage this, with the head teacher. This was a primary school, so she was still in fifth. I don’t know if you’d call it fifth grade, but she was only nine. She wasn’t in secondary school, middle school, high school. And, there was six people in the room when I walked in. And it was the school secretary, I later learned because she’s in charge of overseeing medical procedures , her teacher, lots of people. And I was so overwhelmed, and I felt so ambushed because they were coming at it from the point of view of, right, this woman has called us, she is clearly neurotic, she is clearly uptight. We understand it’s a difficult diagnosis, but it’s nowhere near as difficult as she is pretending it is. And so we’re going to tell her based on other children with diabetes, that we know how this will be managed. And I find this with schools, even very good schools, which both of our schools have been . In general, they come at things that are different with a view to minimizing disruption in their day, their time, the other children’s situations. I understand why they do it, but it really is distressing for parents of children who need something different.
[00:21:42] And I’ve found in both schools
[00:21:44] actually, that I’ve really
[00:21:45] had to fight and stand firm and say, no, that’s not how this will happen, and make her case for her to get them to listen.
[00:21:58] Emily Melious: Has that worked?
[00:21:59]Helen Wills: It has, but I’m not every parent. I’m not saying I’m anything special, there are plenty of parents like me, but there are also lots of parents, and one of whom came behind me in the system to secondary school because her daughter was a bit younger, who would feel overwhelmed and would back down and run away and say, oh okay, well this is not how we manage it, but that’s how the school are telling us they will manage it. So, honey, you’re going to have to change. You’ll have to do it their way. And that’s not right in my opinion. And so yes, the schools have changed. They’ve mostly changed as they’ve learned to watch her, and see that she knows what she’s doing. And trust her , which is easier with an older child and Maddie’s always been older than her years, so that was a good thing in our favor.
[00:22:50] But with younger children, one of the things they wanted to do as an example was if she had a low blood sugar, she was not to drink or consume sugar in the classroom, she had to go to the reception where the first stages were, and treat that low blood sugar there in front of them. And they said it was for safety reasons, so they could monitor and make sure she was okay, came from a place of concern.
[00:23:17] But as I said to them, you make that child walk with a low blood sugar. She could end up collapsing on the ground before she ever gets to treat that low blood sugar. She sits in the classroom and she eats her sugar, and she waits until it’s back up and safe before she goes anywhere. Then you can take her wherever you like. But that was hard.
[00:23:40] Emily Melious: Of course, and not to mention, as you said, Maddie already feels a bit of a misfit.
[00:23:45] and you know, being in those years, those early, you know, pre-teen teen years, the last thing you want is to draw attention to yourself as you’re not feeling well. And you have to take the walk of shame down to the office. Whereas she could very discreetly manage that. And the other thing that I’m thinking is, I don’t know how frequently this happens to her, but she’s missing out on instruction every single time. So, you know, that’s easily 20 minutes and, that puts her at a disadvantage even academically and feels like a punishment, where she’s already experiencing enough. So I hear where you’re coming from. I just love hearing that reinforcement, because we hear it a lot on the podcast, but it never gets old to hear, that you know your child best, you can’t let up. Of course we’re respectful, of course we’re trying to collaborate and partner wherever we can.
[00:24:38] But there are some moments where , you know, we just need to push and fight until we get the result we know is right for our kids. And we may not make friends along the way, but that’s what our kids need. So that’s what we show up and do.
[00:24:53] Helen Wills: Absolutely that, You’re in the right, you are not in the wrong, and you must not be ambushed. You must do what’s right for your own child, in respective of what the system tells you you have to do.
[00:25:05]Emily Melious: Since we’re talking about advice, for parents and really coming together in solidarity on this note, I’m curious to get your advice very specifically for parents who have a child that was just diagnosed with type one diabetes. So they haven’t lived with this, they haven’t really grasped this. What do you want to tell them?
[00:25:27]Helen Wills: That you know what, it makes me feel tearful even thinking about someone who’s newly diagnosed, and it does every time. I would like that person to know that it is going to be okay, it’s going to be more than okay. Your child will learn to live with this and do probably more with their lives as a result of it, than they ever imagined doing before. because the resilience that they learn and the strength, and the self-confidence that they have in themselves at a much younger age will carry them there. The other thing is, they’ll do all the things that you’re scared they won’t be able to do. I did not think my child would ever be able to sleep over at someone else’s house, go on trips with the school. I felt she would need to be with me forever, and of course that isn’t true. It does come, you can’t imagine how it will come, but it will happen. She’s been abroad without me already, she’s 16. By the age of 14, she’d gone abroad without me with the school to ski. To ski!
[00:26:33] Emily Melious: That’s quite the triumph.
[00:26:35] Helen Wills: Yeah, and now we’re getting to the point where she wants to go away to festivals. And I know there’ll be alcohol coming and university, I still can’t imagine how that will happen safely, but after seven years, I know that it will.
[00:26:49] Emily Melious: Well, now she gets older. You start passing off the reigns, and she becomes her own best advocate. And while I know you’ll never stop advocating for her, the shift of the role and the prominence of that will move to her, or continue to move to her into adulthood.
[00:27:07] Helen Wills: Yeah, absolutely. And that’s terrifying for parents as well. It’s yet another stage of parenting that is very difficult, but it happens. It’s what you want, it’s what you’ve trained them for, and they will do it.
[00:27:20]Emily Melious: So true. Helen, how can listeners connect with you?
[00:27:23]Helen Wills: “Iamhelenwills” on Twitter and Instagram. I’m always there every day. Or you can reach me via my contact forms on the website, ActuallyMommy.co.uk, or come and listen to the podcast, and I’m always interested in ideas for things that you’d love to see covered, that teenagers might be struggling with, Teenage Kicks.
[00:27:44] Emily Melious: Yeah, we definitely all have to take you up on that. And you also offer a free download of your Top 10 Ways to Cope as Your Child Becomes a Teenager, for those who join your mailing list at Actually Mummy. Helen, thank you for helping us to see how resilient our kids really are, and for giving encouragement and some really practical advice for folks out there who are managing type one diabetes. We really appreciate you.
[00:28:10] Mothers of Misfits: Thanks for joining us for this episode of the Mothers of Misfits podcast. Make sure to subscribe, so you never miss an episode. We also invite you to visit us at MothersOfMisfits.com.