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Episode 43: 16 Years of Silence: Aron Mazur's Turning Point with Type 1 Diabetes
37 Plays10 hours ago
For 16 years, Aron Mazur managed his Type 1 diabetes largely on his own.
From the outside, he looked like he had everything under control—a successful career, extensive travel, an active lifestyle and a HbA1c that suggested he was "doing fine." But behind the scenes, Aron was carrying something much heavier: shame, fear and the emotional burden of living with Type 1 diabetes.
In this incredibly honest conversation, Aron shares his diagnosis story at age 17, including an initial false negative result that delayed his diagnosis, the devastating impact diabetes had on his mental health, and how a single conversation with his dad completely changed the way he viewed his condition.
We also explore why the emotional side of Type 1 is often overlooked, how perfectionism and shame can become barriers to better management, and why finding the right support made all the difference.
This episode is a powerful reminder that Type 1 diabetes is about so much more than blood glucose numbers.
Connect with Aron
Follow Aron on Instagram @aron.mazur for honest conversations about living with Type 1 diabetes, mental health and improving diabetes management.
If this episode resonated with you please subscribe, leave a review and share this episode with someone living with Type 1 diabetes or supporting someone who is. Every conversation helps remind people they are not alone.
Further Resources:
Type 1 Foundation Website
Follow us on Instagram
Join the Facebook Group
If you'd like to share your story with our podcast listeners, please email: podcast@type1foundation.com.au
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Transcript
00:00:00
Speaker
The content provided in this podcast is for informational purposes only and is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Reliance on any information provided by this podcast is solely at your own risk.
Introduction to the Podcast
00:00:18
Speaker
Welcome to the Type 1 Club. Whether you're a parent grappling with a new diagnosis, a caregiver seeking guidance, or simply someone wanting to learn more about type 1 diabetes, this podcast is for you.
00:00:31
Speaker
Together, let's dispel myths, break down barriers, and build a community of understanding and resilience. Join us as we embark on this journey together, because with knowledge, compassion, and support, no one should ever feel alone in managing type 1 diabetes.
00:00:50
Speaker
Welcome to the Type 1 Club. Hello and welcome to the Type 1 Club. i am your host, Jackie Kidman.
Meet the Host and Guest
00:00:57
Speaker
I am a Type 1 mum to a boy named Harvey who was diagnosed in June 2022 the age of seven.
00:01:05
Speaker
I welcome a guest today called Aaron Mazua. is, ah got the name right. Yes. He just gave me the thumbs up. Aaron, I, another one of those people that you discover on social media and he's an Aussie and i I love everything he shares about his type one journey. And I'd love to bring that story and his journey to you guys as well. So Aaron, welcome to the podcast. Thank you so much for your time. Thank you so much for having me Jackie.
00:01:35
Speaker
It's really nice to be here. Good. Aaron, would you like to share your diagnosis story or what you remember of your diagnosis story with everybody?
Diagnosis and Early Challenges
00:01:44
Speaker
Absolutely. it was 2009 in November and I started to experience some weird health complications.
00:01:54
Speaker
I noticed that I was really thirsty, peeing a lot, irritable, and I didn't know that the emotional... impact that I was feeling was related to diabetes, but looking back, there was so much hysterical emotion and my mental health was really bad and it had been bad before the diagnosis, but as the symptoms, the onset symptoms, I definitely started to experience severe depression and anxiety.
00:02:23
Speaker
And my father had recently been given a glucometer for his potential type two he wasn't type two in the end but i actually ended up testing myself and the reading said 16.9 so i told my dad and he took me to the doctor like immediately and they ordered blood which i had that day and my doctor called me the next day and said don't worry you're all good it's not type one diabetes it must be something else so i was
00:02:57
Speaker
i When I say I was relieved, I cannot, like that doesn't do it justice. I had been researching everything about type one on Google and I was very, I was a big researcher in general of everything. So I knew all about it and ah really didn't want to have it. So I was super relieved.
00:03:15
Speaker
old were Aaron? Sorry, how old were you? 17 at that stage. Okay. I had just turned 17 a couple months before, one month before that.
00:03:27
Speaker
And so i went about my life and I was feeling a bit better with respect to diabetes symptoms, but I still wasn't okay. And it was the summer holidays but after finishing year 10 at school.
00:03:43
Speaker
And was spending a lot of time just at friends houses, just wherever there was a house with parents overseas or away, we we would be hanging out in the summer.
Understanding the Honeymoon Period
00:03:53
Speaker
It was beautiful, but As the symptoms started getting worse, I started, my mental health was just so bad. i was really close to the edge at all times. And because type one was ruled out, I actually started attributing this rapid weight loss that I had and this intense thirst and peeing and all of these. i remember my pee.
00:04:18
Speaker
would be like sticky i'd see it like on inside the toilet bowl i don't know if you want to include that in the episode but wow no that's interesting yeah it was just like yeah i was peeing like a hundred times a day and because i didn't know anything about diabetes i was drinking sugary drinks because i was so thirsty so actually started attributing all of that to it's this like this is something that i'm doing it's because my mental health is bad I'm not exercising. I'm not doing things for me. This is my fault. I'm losing all of this way. And if people see that, they're going to know that I'm like unwell. And I was just feeling all of this shame immediately.
00:04:57
Speaker
Didn't know it at the time, but because I thought it really was my fault and that, that just got so bad. And I remember, and my memory is a bit hazy at this point, but I have a memory ah of me at four in the morning in Melbourne and outside the temperature would have been about eight degrees Celsius overnight, even though it was summer, it was a cold night and let's know i was, yeah, it was, you just don't know.
00:05:25
Speaker
i was so hot in the night and confused that I went outside and I actually jumped in the swimming pool and it was super, super cold outside. and my mother came out and she was like, what are you doing? And I just remember looking at her so confused and insulted by the question. And I was like, I'm just so hot. Like I just, I'm just so hot.
00:05:48
Speaker
And I remember going to the GP that day where he tested my bloods and they were in excess of 30 millimoles and immediately told me to go to the hospital where I was immediately diagnosed with type one diabetes and given my first ever insulin injection in the thigh.
00:06:05
Speaker
So that's those are the facts. So months earlier, why do did you have any answers of why got the all clear and then all of a sudden you didn't?
00:06:17
Speaker
Yeah, it's the phenomenon of partial remission in the early stages where it's related to that whole honeymoon period. The the cells that produced insulin weren't completely eliminated and they were still producing some insulin and obviously the and maybe antibodies or whatever indicators pop up on a pathology test to test for diabetes. They were negative because of that phenomenon. So I went into a partial remission that then Wow.
00:06:46
Speaker
ended Oh my goodness. so yeah like when they do talk about that honeymoon period, I guess if you were you were in what everyone really relates to, we don't the honeymoon period for type one is not the honeymoon period that people, anybody else would use that phrase for, because it's actually quite a tricky period to work out dosage and whether you've done too much, too little, like it's all over the place, isn't it? because Because there is still a little bit of insulin that the body is producing and then it tricks into things and then you think oh I don't need to have insulin today and it's very it's not it's really not what you would actually call a honeymoon period but I have to interrupt you there say you need to just say that here that period needs that name needs to be eliminated and it needs to be called the at best the purgatory period or like
00:07:39
Speaker
Or at minimum, the limbo period. The limbo. is this name? We've given it. Yeah. Yeah. Because the honeymoon period, isn't that what you call the nice, it's this beautiful time when it's really, it was like, I couldn't, Harvey honeymooned for, I was in purgatory for for nearly two years.
00:07:57
Speaker
And it was, yeah, it was tricky. It was like, I was like, come on, just use it all up now, pancreas, just get it done. We're done. We know where we're going. Let's just get there. So that was tricky. So then you had this little period where you were like 17 years old. You were, okay, don I've eliminated type one and then I'm a bit free now.
Coping with Denial and Self-Management
00:08:17
Speaker
And it's just, but then you obviously had these, this anxiety, this depression. So it wasn't like it was a very nice time to not have a diagnosis.
00:08:25
Speaker
it sounds like you're still out and about as a 17 year old. so as a parent, I would be like, oh, they're still doing stuff and they're visiting friends and they're having a good time. Whereas I feel like now, if you were isolating yourself, that maybe that's some of the signs that I would be looking for, but it's, that's not necessarily what it was in your case.
00:08:42
Speaker
And then, so when you say you had your first injection, how quickly did obviously the peeing and all those sort of major symptoms, but the things around your anxiety, your self-worth, that sort of stuff.
00:08:57
Speaker
Did that, I'm not saying that would be insulin. No, no. Did you feel a change in that at the time when you got your, started to be on insulin? Great question. There are two important threads out of, that came out of my diagnosis story that I think are worth talking about if you're also interested. The first is always interested, Aaron, i'm always interested in people's diagnosis stories and where it takes them and stuff. awesome my Mine was a shit show. Like I, I don't know. I'm very happy to talk about this part because I was so unwell and mentally, like physically and mentally around the time of diagnosis. And just prior to that period, I had ADHD I have a diagnosis of ADHD. So I was using,
00:09:43
Speaker
at the time methylphenidate Ritalin as, as a prescribed medication, because I thought that my lack of focus and energy came from ADHD. And so I was taking Ritalin and then I, because I had zero energy, I was so so I was in ketoacidosis for a long time.
00:10:02
Speaker
I was taking all like excess Ritalin just as a six, 17 year old kid self-medicating. And that was keeping me like,
00:10:13
Speaker
alert and awake and able to roam around and be with my friends so unwell, but I was taking heaps of Ritalin and I thought that the weight loss and all of the other issues were attributed to this drug use, which at the time i was, as a 17 year old, I was taking an excessive prescribed medication.
00:10:33
Speaker
So I knew that I was doing medically not recommended things and all that shame of doing that and thinking that the sickness came from the Ritalin. That was a disaster.
00:10:44
Speaker
But so then there's the question of how did I feel when I had insulin in my system? I remember like very vividly being in the hospital, talking to the diagnosing physician and the nurses they were talking about to my parents as well. They were talking about what this is going to involve. And I was just completely dissociated from the discussion of what type one diabetes was. I was having a very vivid conversation in my head.
00:11:09
Speaker
i remember saying, you know what? um I was already really unwell and upset. I said, if I have to, if this is what's going to have to happen to me and I have to live like this, I'm going to live life on my terms.
00:11:25
Speaker
I'm not going to do this anymore. I'm going to, I knew that the methylphenidate and cannabis were really useful at helping me numb my feelings. I said to myself, I'm just going to do drugs, self-medicate 24 seven for the rest of my life. and That's the only way I'm willing to do this.
00:11:44
Speaker
So I don't know if that was addiction rearing its ugly head and capitalizing on this opportunity to like, to be like, oh yes, now we've got an excuse to, to use self-medicate to self-medicate, or if that was me resigning because of the diabetes or both. But I remember making a decision and they injected me with insulin and the physical symptoms started to disappear pretty quickly.
00:12:10
Speaker
And they gave me like liters of water in my veins and orally. And I remember saying to them, get me out of here. And they were like, no, you need to stay for a bit. We need to educate you. And I was like, get me out of here now. Like it really kindly, I was like, I'm fine. I've got this.
00:12:27
Speaker
There are millions of people with it. I'm always good at what I do. i'm going to be great at this. So you can just get me out of this hospital. And I made my parents drop me off at my friend's house immediately. where I just sat with all of these friends feeling the way I was feeling and things only snowballed from there.
00:12:44
Speaker
Oh my gosh. Oh my gosh. Coming from a parent, just like, I can just imagine the worry of your parents. Like, how do you how do they help you? oh the next part, the next part, and this is really
Family Support and Travels
00:13:00
Speaker
interesting. i don't know.
00:13:02
Speaker
I don't know. how anybody would feel about this. We were planning to go to Thailand on a family holiday a week after my diagnosis, less a few days later, we had everything booked. It was like a month holiday.
00:13:14
Speaker
Just got diagnosed with diabetes. My parents were like, what do we do to the hospital? And they were like, look, it's pretty unlikely that you could go. But my mom was like, no, like we have to go. We cannot let this be the first consequence of diabetes here. We have to do this. So They were on board and they trained my parents in how to manage my diabetes. And I don't even know if i knew anything, but my parents just steered the ship for a few days, got my levels stable, really stable, constantly on the phone with the hospital. There was no apps, no monitoring, all finger pricks.
00:13:49
Speaker
And the hospital was like, you can go. And we went to Thailand for a month and i was away from all substances. And I was like, just with my parents and my sister. And yeah, we had this beautiful holiday, but it was full of severe anxiety calls to the endo, constant like freak outs and me just panicking if I couldn't get food in my system in at specific times and not knowing anything. it was, I'm glad we went, but I don't know how many people in that position would do that.
00:14:18
Speaker
Yeah, I don't. And to go to ah like a place like Thailand as well, I think that I wouldn't, it would be, yeah, like the worry about getting sick, about having enough insulin about there's so many things we had a like a trip to bali booked like four months i think after harvey was diagnosed and i almost cancelled that because i was just like oh just it was just yeah that's amazing that your parents were like no we can't let this define we've got this this would be a great and then maybe in hindsight because it did take you off like that like you said like the medication like the like the marijuana and the yeah
00:14:53
Speaker
the And the Ritalin? Could you take Ritalin in to Thailand? when Yes, but I wasn't taking it for a little bit. I never took Ritalin again from then. Really? I took lots of other stuff. I just was never prescribed.
00:15:06
Speaker
yeah britlelin yeah Yeah. It cured your ADHD. No. Yes. So yeah just to, and just to like all those worries that you have when you go on a holiday anyway, are you going to like the fridges and the temperature of your insulin, all those sorts of things that you just, it's, you have to think about.
00:15:24
Speaker
on top of just a normal getting your family there on a holiday. But then when I think about that, if you're there for a month and then you're there with your parents and your sister, what a way to condense the learning as a family of this is what you have to do and This is your timing and this is the way that Aaron responds maybe when he's high or when he's going low or just those things that I think when you are living together for a good fool four weeks, like maybe in hindsight, that is a great way of figuring it all out.
00:15:59
Speaker
Like and you don't have any other schedules, and you've just got, yeah you can just got this holiday, but then you also obviously type one comes along with it. in hindsight, I actually think going there for reasons that are very specific to me,
00:16:12
Speaker
actually could have saved my life because of how unwell I was and what you just mentioned, being in in the sun with my family, with no other obligations, no friends to commit to, no people to explain my illness to, and just my most loved people in the world.
00:16:27
Speaker
I think that was really important. And my parents are just so conscientious with literally everything they do in their lives. They're so diligent and with their kids, they care more than ah can imagine any human can care about anything so they did everything in their power to keep me alive and and they did ah i think i can't remember what my levels were but i remember seeing a lot of 5.5s a lot of sixes and sevens and then when i when we got back from thailand i again i can't remember specifically what led to this but i remember telling my parents and my sister
00:17:06
Speaker
No more talking about my diabetes. No more asking me about it. No more mentioning it. No, don't ask me if I've injected, if I, where I'm at. No more, I've got this all on my own.
00:17:17
Speaker
And yeah, that was how it was for 16 years. 16 years. What happens if they did just go, oh, have you, oh, what was your response if they did?
00:17:29
Speaker
You just ignored it Because of the level of shame and... It was, I didn't want anybody to mention it to me because it was a, for me at the time, it was just a constant reminder that I was failing.
00:17:41
Speaker
I remember getting 40 to 60% time in range consistently for those 16 years and mostly 45, 50 though. And my endos and nurses, because my HP1AC was HP1AC.
00:17:55
Speaker
Okay, we'll keep going. Because it was at like 7.2 ish for that whole period of time. My doctors were always telling me that was fine and just to keep going. And nobody offered me more support or education or encouragement around getting new technologies. And it just, it was just like this period of, okay, they say I'm doing well. If everybody asks me about it, I know I'm not doing well. I don't want to be able, I don't want to have to justify or explain or be reminded of my failures. And I was so resentful as well, just having, for having got this. I'm not anymore at all, but I was at the time. so
00:18:33
Speaker
through that grief and shame, my lips were sealed. Living with type 1 diabetes can feel overwhelming, but you don't have to do it alone. At the type 1 hub in Geelong, you'll find connection, support and real people who truly get it.
00:18:48
Speaker
From families newly diagnosed to seasoned T1D warriors, the hub is a place to learn, share and belong. You can also shop a wide range of diabetes products and supplies, all in one convenient place.
00:19:02
Speaker
Visit us at 251 Moorable Street, Geelong. Wow. My goodness. It's interesting because Harvey's 10, almost 11. So coming into four years of him being diagnosed and I'm very conscious about when i he wouldn't know a lot of the stuff that I do in the background, but I've got all the tech, john I mean? I've got, whereas your parents wouldn't have had that. They obviously wouldn't have to have the follow up or any of the things to, the CGM to be able to see that, yeah, you're not, but maybe they wouldn't want to watch it anyway. If you're not going to answer or not going to, don't want them to know. but I am always very conscious of not asking Harvey. His day doesn't need to be around type one.
00:19:45
Speaker
I can see what his day is like. I can see whether he forgot to dose for morning tea or I can see that. My first thing is whenever i get, he gets home, we always talk about, we have a bit of a chat for maybe about an hour and I try not to mention type one. That's amazing. Unless it's shit show and I do need to go, well, what happened? Yeah.
00:20:04
Speaker
But most of the time i won't even, ah try not to anymore because it just becomes, he's a child and he needs to, yes, it does come along with us, but first and foremost, he's a child. And that's what I that's what i always try and say to any of these teachers as well, is that his school is not about his type one. his You need to talk to him how you would talk to any other child.
00:20:26
Speaker
about their schooling or their day or anything like that. Don't focus on the tight one as a handover to necessarily me or anything like that at parent teaching interviews or something like that. But as a 17 year old and you're going, I've got this, but also did you have it?
Parenting with Type 1 Diabetes
00:20:41
Speaker
Yeah. I firstly, what you just said about how you approach Harvey's, like the discussion around his diabetes, think that's amazing. And I don't know what it's like for parents.
00:20:56
Speaker
I'm not in that position, but I have a massive respect for anybody like you that thinks about how can we try shields this, not shield, how can we change our perception of this issue so that we don't bring so much fear to it? And how do we make sure that we don't let our fear, which is ours, not Harvey's, this is our fear that something terrible will happen to him, kind of project onto him.
00:21:26
Speaker
And because that layer of projection will cause immense psychological harm to a person who's already carrying an autoimmune disease that's overwhelming them literally 24 seven in the beginning to have that added layer from parents, which is so understandable. Obviously you would be terrified if your child was in that position. i can't imagine, but it's so important to do the work on yourself rather than telling, oh, Harvey, you got to do your work on your diabetes. Parents need to do the work on themselves so that they don't impact their kid with their fear. And that's so so easy to say and so hard to do, but worth thinking about, I think, for everyone.
00:22:06
Speaker
Absolutely. Absolutely. And I'm sure that, and that has been a work in progress for me. Harvey, he's out and about on his bike or walking, like going to see his friends. He does that all the time. It's very hard to keep that kid home. I can't, I'm freaking, I am freaking out a little bit about the teenage years, but but that's not necessarily about the type one. he' like And he has to learn if he's going to go off and he's going to go and do a big bike ride with his friends, he has to learn what what will impact his body. So he has to learn that, okay, i have to make sure I've got some sugar on me. Maybe I need to switch my my pump onto activity mode. We talk about it, but I don't necessarily...
00:22:47
Speaker
So you can't do that because you don't know what you're doing. He has to learn that. If he has a hypo while he's doing it, he'll w ring me and go, it's all good, mum. I'm treating that hypo. He has to learn. Unfortunately, you know, it is a little bit of trial and error or error. Thankfully, haven't had too many errors. So, you know, that's what what my fear shouldn't be his fear because he's going to carry that for the rest of his life.
00:23:09
Speaker
And I'm just here at the moment just to take a little bit of the load while while I can. That is a very quotable question. phrase that you just said and super important. You asked me before, did I really got this?
Commitment to Better Management
00:23:21
Speaker
No, i yeah I didn't really got this, but I am pretty clever. So I figured out how to manage, how to unmanageably manage my diabetes so that it looked like I was okay, mostly after a while. And so that my doctors were giving me the tick of approval.
00:23:43
Speaker
I did everything, Jackie. The year of my diagnosis, I went on a long trip with my friends to Byron Bay. It wasn't quiet and wholesome at all. I was up to lots of mischief and had so much fun. I straight away went to university. I did really well in school. Went to university, law and business, double degree, and then went, took a gap year in between and went traveling for months. I did, I went to festivals like four times to six times a year with lots of friends. I constantly had do a lot of activity and weightlifting and it never ever stopped me from doing anything. But unfortunately in all of those instances, there were moments of there were challenges and there were obstacles and there were like one, one to two hospitalizations with DKA and in the first year or two and that's it.
00:24:39
Speaker
And it's like this manageable, chaos and did not stop me from living a really full life and beyond everything i just mentioned there's so much more wow yeah even though there's speed bumps and there's stuff you have to figure that out right it's just like anything if you wanted to quit smoking or like any of those sort of things no one can tell you that you have to do it you have to be the one that makes that choice in yourself So you had a pivotal moment that, you know, that you were just like managing the chaos, scraping through, looking, it making it look like you were, that you had it and you've totally got this.
00:25:19
Speaker
But like you said, you didn't really. you There was like you could do better. But there was a conversation that you had with your dad. i would really love you to share that conversation.
00:25:30
Speaker
Fast forward to 2025, I had by that point, i had by that point recently overcome significant other health challenges, ranging from my mental health stuff, which I'm so on top of and have done so much work on, like physical work and time and energy and effort. And I had three years of hip disease where I was disabled for, i was just, I was totally, i was certified as totally and permanently disabled for a 14 month period after having bilateral hip surgery in 2022. That went. Wow.
00:26:05
Speaker
Yeah, that's a whole other work stream of of my life. And those two surgeries I had were really, they initially failed and I was disabled for that 13, 14 month period. And then it took me an additional year on top of that to build back slowly to the point where I could sit down on a chair, walk.
00:26:25
Speaker
I couldn't walk. I couldn't sit down. I couldn't stand up for very long. and couldn't work for 14 months. So I had to take a long leave from my job as a corporate lawyer.
00:26:36
Speaker
And all of that required both hundreds of thousands of dollars and tens of hundreds of hours of time and research and energy. And I kicked that thing's butt eventually I spent everything.
00:26:51
Speaker
Yeah. I did everything I could to heal. And now I'm completely recovered. But I my dad sat me down right before I was supposed to go away to Europe for ah six month sabbatical, I recovered and told work that i needed to go away and leave and booked this trip. And my dad sat me down and he said, Hey, as just may I just ask you a question? He was so gentle and soft about it. And I was like, oh, my dad's quite a tough bloke. He's really direct. And this, I could tell he was gonna ask me something important. And he said, so
00:27:30
Speaker
With everything in your life, your hips, your mental health, the addiction, your work, your career is amazing or everything you do, you give it everything. And he started telling me how my efforts are so like, yeah, it's so intense and so and dedicated. And he's so just explain to me, what's the reason you don't focus on your diabetes the same way that you focus on everything else in your life.
00:27:58
Speaker
Mashman, remember hearing that and thinking how day, what do you mean don't focus on my dad it's every. Andrew Mashman, And then I realized that this rage within me this need to tell him off that was a sign that he had they hit the nail on the head and that. Andrew Mashman, I could I couldn't actually answer his question i was like I was like trying to make excuses and I realized he was 100% right, I had avoided and hate from my diabetes and. everything else that went wrong was impacted by it. And if I had only paid more attention to the diabetes, maybe I could have avoided magnitudes of chaos and pain. So I decided to get on top of it more so in the two weeks before leaving on this trip, but two weeks isn't enough time.
00:28:46
Speaker
so I ended up going on this trip and had my second pivotal moment at the very end of a seven day silent retreat where I kept having to like interrupt the meditation to get hyposnacks. Kept doing all these interruptions from diabetes. I kept noticing how that made me feel like so different from everyone. so so much shame. I used to need to leave the room and only come back when I was non-hypo. And I was so like afraid of people seeing me sick and unwell and all these strangers who I don't even know. And that's when I was about to leave the retreat. because I couldn't handle it anymore. And then I was like, oh my God, you're going to leave the retreat. This is a sign you need to stay. You need to get back in the room. So I got back in the room and I stayed and I had this epiphany where I realized that my diabetes is the biggest thing in my life. It's been right under my nose and I've never ever looked at it.
00:29:39
Speaker
Never seen it. And there was so much I needed to do on that as my number one priority. So I came home. um it I just decided to end this big trip and came right home. Got a coach, Insul Owen, Owen Costello, who runs the Type 1% program. on I found him on Instagram and and I joined and I've spent the last two, three months becoming an expert in getting over 80% time in range and managing my diabetes and talking about it and everything.
Working with a Diabetes Coach
00:30:13
Speaker
That's so interesting because when you say like we, like with these coaches that you think, why would you need a coach or your type one when you have an endocrinologist or a diabetes educator or oh yeah like those sort of things. But we have coaches for everything like business, like sport, those sort of things that, you know, if you want to get better at something, we, we're fine to go, yeah, maybe there is someone out there as a coach, but like for someone to, for you to go to that moment, I actually need,
00:30:47
Speaker
something more than what I've had in the past, like a better, and then you've done that research and you've found that person to be able to help you. Just seeing Owen on socials.
00:31:00
Speaker
I've never seen him. I'll have to have a look. Oh, we'll tag him. E-O-I-N, Owen, the Irish spelling. Oh, I have. Yes, I do. i do know him.
00:31:11
Speaker
he He's very, In my opinion, he appeared very humble and grounded and he was a male per he's a male role model that I saw. He looked like me. i had shorter hair at the time. He had similar haircut. He's very well built. He's an iron he's competing training for an iron and man and looks amazing. And I was like, and he sounds amazing and confident. And he was posting results of transformations from 40% time in range. People who weigh like 20 to 40 kilos. excess in excess of what they would like to weigh.
00:31:47
Speaker
And I saw the weight loss and the blood sugar level transformations. And I was just blown away. Like I didn't, I didn't, my endos and my nurses had told me aim for 60%.
00:31:58
Speaker
If you get 70%, you're killing it. You're like the best you can be. So I just never thought that was possible. And it took two weeks of working really hard in the program and studying everything and running trials and trial and error experiments for me to increase my timing range from two 60 70% and then took another two weeks to be consistently above 80%. And now I'm getting like nineties to 90 to a hundred percent most days. So, So is that, did you embrace some tech additional technology then? So when you were traveling, were you on injections for majority of that 16 years?
00:32:35
Speaker
Always on injections until very recently I got my mini med 780G four weeks ago. So I got to in excess of 80% time in range on manual injections. And i was blown away at the stuff that type 1% taught just from their experience. They're not healthcare practitioners. They don't claim to be, and they do not provide equal advice. This is just the experience of hundreds of years of type one diabetes. People who have defied the expectations that are initially put on us and shown that you can literally do anything.
00:33:13
Speaker
And what I learned was so basic. that i just couldn't believe I'd never been taught this. Or even if somebody tried to teach me, it was, I don't think they have, but I'm trying to be objective because I know there's a lot, there's a difficulty actually educating people who don't want to listen because they're. Absolutely.
00:33:30
Speaker
Yeah. So but yeah, I just couldn't believe what I learned about fats and protein and delayed blood glucose impacts and about how to actually dial in your basal rates that you know, if it's the perfect dose and you don't have to wonder is it basal, is it bolus, is it exercises?
00:33:48
Speaker
They just taught everything. And i was like, oh my God, this is not nearly as hard as the hysteria and the anxiety makes it seem. So interesting because yeah, I think I started following you when you were traveling overseas, when you had that sabbatical.
00:34:05
Speaker
And I think there was moments there where you had must've, your algorithm just shoots people through. And then, and maybe but it was when you drew, drew. Did you get a spike of people following you? when No, I didn't. I didn't. I only, it was a few thousand views that post and I wasn't posting publicly much, but yeah, ah Drew just taps on my CGM in a cafe in San Sebastian. I don't know him. And he's, Hey mate.
00:34:34
Speaker
And we had this amazing moment where i that begun, that kicked off this journey. That was like my dad's conversation. meeting drew and seeing that there's this social media world and diabetes can actually be really cool. If you look like, look at drew, I want to be like drew. So if want to be like drew yeah exactly I was like, okay, diabetes can be cool.
00:34:54
Speaker
Then I ended up at the retreat and then I posted on social media and Yeah. now Drew and I are mates and it's. Yeah. I've had Drew on the podcast last year and i think that, yeah, I'd seen that post and then I was like, oh, this is cool because i all I want for, like, we love travel in our family and all I want for Harvey when he's older is to just have that freedom of travel. And I remember thinking, oh, this is so cool. Aaron's just traveling. He's doing, like you were in pretty remote kind of areas as well from what I remember. yeah
00:35:26
Speaker
and it was. and i I was just like, look at him. He's like, he's doing so, so well. But yeah, when you start to see, I think when you have those moments where you see other people, what I call it? Like type ones in the wild that, that yeah, you think, oh, you're not alone. You're not the only one that's in this, in this country with type one, there's people all around you that you wouldn't even know.
00:35:52
Speaker
And they're all managing it in their own sort of different ways. And sometimes we need those little quiet little whispers at each little moment to then get to that point where you're like, okay, something needs to change.
00:36:07
Speaker
And then that's where you've. you've made this change and I have noticed a change in the way that you speak about type one and we'll put Aaron's Instagram if you want that.
Community and Social Media Support
00:36:17
Speaker
He shares a lot now about one and he's and his videos are really good of just things that you're like, Oh yeah, what like interesting conversations around that. And obviously having this coach is just also giving you this confidence of like you weren't necessarily failing, but you just needed some extra tools.
00:36:37
Speaker
And Google couldn't give that to you, that we talk about in this world of AI and all that sort of stuff. And yes, you can get a lot of information and AI can do a lot, but having that personal experience and that where people can share that directly with you, i think that's something that AI can never take from us as humans.
00:37:00
Speaker
Anyway, that's a tangent that I, again. No, no, I completely agree. I don't think the perfect solution to this problem is a diabetes coach. That's just the solution that we have now. I think there needs to be accessible vision of this information and the accountability from a young age at no cost, ideally.
00:37:22
Speaker
So it's not and a yeah perfect solution because it's not accessible to everyone. It costs a lot of money for me to sign up to this four-month minimum program. And boy, was it the best investment I've ever made. But not not many people can make that investment, especially if you're already going through something like diabetes and you're in a lower income threshold. Good luck.
00:37:43
Speaker
Yeah, absolutely. And I've talked that with some other guests around the cost of of type 1, not just like the physical cost, but the actual like the mean, physical body kind of yeah mental health kind of cost as well. But the actual cost in financial is that it's almost we should have, it's and we are probably better in Australia than we are in some countries around the access of of type 1 caretors. equipment and insulin and that sort of stuff but it could be better because for um you know car harvey's for you to go get on the pump for example you would have had to either up your and insurance for 12 months and or pay an out-of-pocket cost or that sort of stuff which is a lot of impact on people to be able to do that harvey's on the omnipod so we've had to change our health insurance but we pay a subscription base which is
00:38:40
Speaker
about $210 a month, which a lot of, that's a weekly grocery shop for a lot of families. And it's almost like it shouldn't be, ah it shouldn't, you shouldn't be in a privileged position to be able to have access to these, you know, these, just the basics, but let alone then you're right as well. These sort of coaches and stuff, that is another level. But I do find that the type one community is really open into sharing their knowledge too.
00:39:09
Speaker
that you can get stuff for free in like Facebook groups and that sort of stuff when you just simply say, what are people's thoughts on this or how do you do that? I've never known and such a non-judgmental kind of group.
00:39:21
Speaker
Like sometimes when post and everyone's you're doing this wrong, you're doing that. you're like, I don't find that with type one. I find that people are like, we've tried this and this worked for us. And because it's not ah it's not necessarily a perfect formula either. Everybody's different.
00:39:34
Speaker
And I remember someone said that to me when Harvey was diagnosed was that this disease is very different for the, it's individualized. So just because one person is doing that, doing it that way, doesn't necessarily mean that's the perfect way for your child or that sort of stuff. You have to learn it. Like you said, yourself, put it into trial and error and then figure all that out.
Emotional Challenges in Diabetes
00:39:53
Speaker
My hot take is that the hardest part of diabetes is not what people think it's the emotional impact of having the disease, which causes this inability to connect with and understand the practical stuff, because we can learn all day long that if we pre-bolus 10, 15 minutes, that's going to be amazing for us and and our levels will be so much more stable.
00:40:24
Speaker
But if we're so anxious that we're going to hypo in those 10 to 15 that we're not even willing or that we're just sitting there stewing in fear, maybe producing tons more cortisol. And then we cannot actually act on, on that practical stuff. We need to, I think first get across the emotional impacts of it and learning how to detach from the 288 glucose readings we get every day on our sensor and create distance between taking an action and seeing the result and taking an action.
00:40:58
Speaker
That is what will significantly level out blood sugar trends. It's not that difficult to understand. It's difficult. It's not easy, especially if you haven't been educated on nutrition and all of the holistic picture. I'm in a privileged position. But yes, it's not as difficult as it as the emotional stuff makes it seem. I am talking more about the emotional stuff in my posts and it's gone gangbusters. I can't even believe how many people have in this amazing community have responded and commented and messaged and and viewed the videos.
00:41:33
Speaker
Aaron, we could continue to talk forever. know. Which were worried about that when we started this. We were like, oh gosh, can we try and keep this within a good sort of timeframe? I do like to ask everybody a last question and I'd just like for you to share. sorry I'm just...
00:41:51
Speaker
Harvey's having a low and I think that the sugar pixels. Oh my God. i just But that's fine. It's more that the noise in the background of like, yeah but yeah I've now set that the sugar pixel to go off and it's so loud and obnoxious that I i disconnected it last night. Cause I was like, I can't deal with you and all the other alarms. I digress, Poor Harvey. Good luck, Harvey.
00:42:11
Speaker
He's probably already traded it to be honest, but what is, it's ke this is how quickly you can divert your conversation with type one. Yeah. What is your go-to hypo treatment?
00:42:24
Speaker
Oh, this is a huge one. I've been thinking about this so much because I don't think what the hypo treatment options we currently have are adequate for my taste profile.
00:42:34
Speaker
But if it's about taste, like combining overall taste and how fast acting it is, I'm going to say weirdly nerds. Nerds. Yeah, this must be a Canadian or an American thing because I see it all over Instagram. I started buying Nerds and they're very effective, but I don't recommend them. I don't recommend them.
00:42:59
Speaker
They're little like little balls, little rocks. Yeah, yeah. How do you measure that out? Yeah, so I don't recommend them. What I do for me, I'm boring with my hypotreatments. When I'm in Australia, my favourite are gluco gel the the gummy bears. I hate jelly beans.
00:43:18
Speaker
ah Don't even talk to me about jelly. I'm going to go there. We don't have time for jelly beans today. But Glucogel, gummy bears. I'm going to start a campaign. And sorry, Glucogel, I've complimented your gummy bears. I'm going to start a campaign to end the jelly bean phenomenon in Australia. And when I'm in the UK and Europe, I love dextrose energy. It's just pure, 100% dextrose pressed into a like tablet, tablet.
00:43:43
Speaker
like it's small And it comes in what is essentially like aluminum foil in the case. Like it's it's got no weight and it's just like really easy to to rip out like two to three tablets, four tabs of dextrose energy. And that'll cure most hypos and it's super fast. It's super like, just it's not nice and tasty. So you do not want to eat more.
00:44:05
Speaker
so that's my favorite. We don't have that here. No. You opened up a can of worms. have. I really have. And now you're really missing you missing that hypo treatment. Yeah. We can wind up now.
00:44:19
Speaker
It's funny. I ask that question to every guest and it's like there's such a simple question, but there's never a simple answer. It's just, it's like I thought i was thinking like, should I change that last question? But it's, I actually find the answers everyone has is, it's so interesting.
00:44:35
Speaker
And there goes the sugar pizza alarm. Amazing. Thanks, Harvey. we're going wrap it up here. but Aaron, thank you so much for your
Conclusion and Call to Action
00:44:43
Speaker
time. As I've said, i love that we're able to connect on Instagram and now we're able to connect on the podcast and share everything with, share your story and everything you bring to the Type 1 community. with everyone on the podcast here. And I'll leave all Aaron's details in the show notes and you can connect further with him. And I'm really sorry about that sugar pixel noise. But i would just like to thank everybody for joining us on this fortnight's episode of the Type 1 Club. i hope you got a lot of value out of this and I look forward to bringing you another episode very soon. Take care.
00:45:17
Speaker
Thank you for tuning in to the Type 1 Club podcast. We hope you enjoyed today's episode and gained some valuable insights. If you like what you heard, be sure to subscribe to our podcast on all the platforms so you never miss an episode.
00:45:31
Speaker
We'd also appreciate it if you could leave us a rating and review. This really helps us reach more listeners just like yourselves. For more updates, behind-the-scenes content, and to join the conversation further, follow us on Instagram and Facebook, The Type 1 Foundation, or visit our website, type1foundation.com.au.