Kat Lucas, Hannah Reidel, and Thomas Hallett from the Diabetes Link share the young adult perspective on living with diabetes; including building trust with the DCES, navigating financial issues, alcohol use, and more, and the excitement of traveling and moving to new cities – all while living with type 1. Our guests share their experiences coming of age while living with diabetes, and discuss the importance of building trust with the care team and some of the valuable benefits of working with a DCES. Kat, Hannah, and Thomas share insights on what they wish their care teams knew about living with type 1, and thoughts on how the DCES can show up and provide support as those with similar experiences come of age.
Kat Lucas, Hannah Reidel, and Thomas Hallett from the Diabetes Link share the young adult perspective on living with diabetes; including building trust with the DCES, navigating financial issues, alcohol use, and more, and the excitement of traveling and moving to new cities – all while living with type 1. Our guests share their experiences coming of age while living with diabetes, and discuss the importance of building trust with the care team and some of the valuable benefits of working with a DCES. Kat, Hannah, and Thomas share insights on what they wish their care teams knew about living with type 1, and thoughts on how the DCES can show up and provide support as those with similar experiences come of age.
The Diabetes Link Resource Hub is available here: Resource Hub
The DSMES Program Finder is available here: Find an Accredited Diabetes Education Program
Julia Socke
Hello and welcome to ADCS's podcast, The Huddle: Conversations with the Diabetes Care Team. In each episode, we speak with guests from across the diabetes care space to bring you perspectives, issues and updates that elevate your role, inform your practice and ignite your passion. I'm Julia Socke, Director of Diabetes Education and Accreditation Program at the Association of Diabetes Care and Education Specialists. I'm a registered dietician nutritionist and also a certified diabetes care and education specialist.
And before joining the ADCS team, I worked closely with young people living with type 1 diabetes. Today's episode was developed in partnership with the Diabetes Link, and we actually have three members of the Link team here as our guests. Kat, Hannah, and Thomas, welcome to the Huddle.
Kat Lucas
Thank you for having us.
Thomas Hallett
Great to be here.
Julia
Great to have you. Many of us know that young adulthood is a time of transition and sometimes uncertainty, which makes it a unique time to navigate diabetes.
In this episode, we are going to explore how members of the diabetes care team can best help young adults navigate these challenges and have open discussions about topics that may be uncomfortable to bring up. Today, we are building a bridge between diabetes care and education specialists and our young adults with diabetes, building trust and sharing experiences. When I think about my experiences as a clinician working with young people, there are a couple things that I learned along the way.
The first was that building trust and camaraderie takes time and can't be accomplished in one visit. The second was that it was critical to understand what is most important in their lives and what they feel the biggest challenges are. Understanding the challenges of our younger clients allows us to build better partnerships between Diabetes Care and Education Specialists and those who seek us out.
I am glad you are all here with me to help shed light on and share your lived experiences. I'm sure there are some clinicians who may not feel comfortable relating to young adults and knowing what they want to address. This is a great opportunity to discuss that two-way communication, especially because all three of you have had different experiences. Since your stories are so valuable to our audience of diabetes care and education specialists, I'd like to start by asking if you can share a bit about your journey.
Kat
My name is Kat. I'm the Director of Marketing and Communications at the Diabetes Link. I have lived with diabetes since I was 18 years old, nearly 19. My diagnosis story took place during my freshman year of college. Luckily, I guess, during fall break, so I had some time to sort of literally triage and get my footing under me as best as possible. And then I went right back to school. That was far from home.
And again, I was already an adult, so I was fully legally in charge of my own care. So yeah, really kind of a precarious time. And it's why my role at The Link feels so personal to my experience because we're working on materials that I sorely wish that I had in that time.
Hannah Reidel
Hi, I'm Hannah. I'm the marketing coordinator here at The Link. And I have had type 1 diabetes for almost 16 years now. I was diagnosed when I was nine. And my little sister was also diagnosed when she was eight. So we've both grown up together in the diabetes journey. No one else in our family has type 1. So it kind of forced us to figure it out as we went. A lot of what I do in the diabetes community and the reason why I wanted to be involved with the Link was so I can make it little easier for her and for everyone else who comes after us.
Thomas
Thanks, Hannah. I'm Thomas. I have been living with type 1 diabetes since I was 17 months old. I'm now 24, so it's been some time. I am currently working as a research technician in the diabetes technology space at the University of Virginia. I've got career aspirations of hopefully practicing and researching in endocrinology in the future.
Julia
Great. Thank you all for sharing your journeys. I'd love to give you all the floor to talk about some of your experiences. So what questions or topics do you feel aren't always properly addressed? And what are some things you wish your diabetes care and education specialists knew about you or broached with you?
Thomas
I'm happy to start. I think the first thing that comes to mind for me is the topic of alcohol. I think especially that's something that as a person coming of age, I was figuring out for myself at the same time that I was transitioning out of pediatric endocrine care. So it was sort of a question of who am I going to talk about this with? Is that going to be harder with someone I've known for my whole life or someone I've just met? But I think certainly as with lots of things about growing up and becoming more comfortable with myself, those conversations did get easier. But right around that college transition time through most of college, it was always like, is this a topic that we can really get into? Can I ask you these questions that might make you feel a little awkward or me feel even more so?
Kat
Yeah, I think just speaking for myself and my own observations, zooming out, it's a theme of vulnerability, right? It's relationship building that has to happen before you can even broach some of these subjects. This is especially the case in transitional care when you're a young adult in school and maybe moving to a different city post-grad. I mean I've lived in four or five different cities since diagnosis. The topics really run the gamut with your care team, whether it's your endocrinologist or a CDCES, but really for me, the early win has to be establishing trust. There's a dynamic, especially, we know that the median age of diagnosis is 24. People are getting diagnosed with type 1 later in life. There's such a transition that happens. It's really sort of jarring whiplash thing that happens when you get diabetes, really at any age, but especially in my experience as an adult. I've already stepped into a lot of my agency. I'm in college. I'm individuating. I'm finding out who I am.
And then I'm kind of having to step into agency and autonomy in a different way. It's very vulnerable to see an endocrinologist and step into an appointment where you're getting feedback on your performance, it’s a lot as a young person. Now I'm in a place where I have a CDCS. I did not have one early on in my diagnosis journey and didn't know that was a resource for me. But as I've navigated different topics with my care team, it's been that early win of getting that trust and establishing that personal human connection that's actually allowed me to even broach subjects that may be harder to talk about with an endocrinologist. And that's not to be critical of my endocrinologist. It's just a comment on oftentimes there's time as a factor, you know, limitation of time. For me, most recently, the topic around financial readiness or financial, I guess, access when it comes to care, that's been a really critical topic with my care team. My CDCES has been really fantastic at sharing ways to talk to insurance or different options that I never knew were on the table. And that's been such a source of relief knowing she has that acumen beyond just the medical perspective. She's really treating me as like a human in the round, knowing that there are other challenges that come alongside living with diabetes, including financial ones even mental, relational, like it's such a well-rounded lived experience. So that's a long-winded way of saying that there are so many conversations that can be hard to approach. I have just found that establishing a good relational foundation with your care team really opens up possibilities to have those conversations.
Julia
Thanks Kat, Hannah, any thoughts from you?
Hannah
Yeah, I think Kat began to touch on this. My experience in my early twenties has really been one of instability. You know, when you turn 18, you go off, you get a job or go to college, wherever you decide to do, a lot of the times you are moving. You have new jobs, new homes, new cities. For me, like I am 25 and in the last five years I've lived in four cities. That's already a layer of stress, but then you add on diabetes and it's trying to figure out how you find a care team where you are. I think that's a big thing that makes it so stressful for young people to want to like jump off and like have new adventures and try new things. In the back of their mind, they're thinking about how not only can I get my supplies, but I needed a care team to write my prescription. So I have to establish care right away when I move somewhere. And so I just think it adds another layer of stress. I hadn't even really considered it until we were talking about this podcast. My mid-20s really have been - I love them and it's great, but like unstable, just where it's like, have a new doctor all the time, new care team. And just making sure that providers and your CDCES or care team, whoever you're working with, like understands that added layer of stress that a lot of young people are dealing with, especially as they navigate their next steps, just depending on what next adventure holds, you know?
Thomas
Hannah, I totally feel what you're saying. I like how you mentioned that it's something you don't often think about until you are trying something new like we're doing with this podcast, right? Having to think about some themes in our own lives. Actually stopping makes you realize like, I actually am feeling a lot of like transitional stress. I am going through a lot of things impacting my capacity interest and how I care for myself. Even if I don't see it at the forefront of my perspective all the time.
I think it's so important that someone who I'm trusting with my care recognizes that that's going on and is conscious of that and tries to meet me where I'm at with all of these changes and stressors.
Kat
Yeah, Hannah, I think what you said was very well said. And what you're really describing is empathy. I think we all know even from a clinical perspective that there are so many factors that can affect your blood sugar beyond just carbs or literal sugar. And there's a lot of awareness and education to be had there. However, I think empathy is a huge trust builder in these relationships because the reality is that there are so many other factors in our lives that can impact our health outcomes beyond just our own behaviors or biological factors. Like there's so many external factors to contribute to that. So yeah, I really liked how you broached that Hannah, just in terms of establishing empathy and having a generalized awareness of all the challenges that come with being a young adult or honestly just a human in general, right? Like there's so many things outside of our control that ultimately do affect how we sleep, rest, engage with our health. And all of those are at play when we sit down for a 15-20 minute appointment with our care team.
Julia
Well, great thoughts. That actually leads perfectly into the next question I have for all of you, which is, what advice or thoughts would you give healthcare professionals as they're having some of these conversations with their younger clients? What would you expect or hope to experience when seeing a diabetes care and education specialist or other healthcare professional, whether it's for the first time or maybe you're transitioning care or even with the team that you're already established with?
Kat
Yeah, so we were actually just at the ADCES conference and I was having a similar conversation with a few of our Next Gen Fellows, which I would love to talk about at some point later on in our conversation. And many of these young adults, Thomas is even one of these, are aspiring to perhaps become endocrinologists themselves. And what I was sharing with them is that I actually have so much hope for the future of endocrinology and care because of how chronically online, this generation is. And to go back to that point of empathy, I think that the more we're tapped into one another's experiences of living with diabetes outside of the just clinical perspective, the more we can relate to one another and come with like a level playing field of understanding.
So my piece of advice would be get online and follow social media accounts, follow people who live with diabetes. See what makes them laugh, see what TikToks and reels they're talking about or their challenges, the dark humor that comes out online when you're sharing your personal experience. I think it's all really relevant because if you don't have that understanding and perspective of the lived experience in the round, I think it can be challenging again to get that early win of trust. I mean, social media can be soul-sucking a little bit, but the positive part of it is that it does give us a window into everyone else's experiences in a way that I think can be really bolstering in your clinical practice.
Thomas
And Kat, I like that you bring that up too, because I feel like so much of the way that I engage with diabetes online, so much of it is humor and sharing common struggles. But I think another huge part of where I see diabetes online is through advice like, hey, this worked for me, or hey, I tried this thing, or, you know, hey, I'm struggling with the adhesive that I'm sweating off of myself working all summer, you know, like all of these things that are just like day-to-day challenges and as much as I have enjoyed hearing people's advice and tricks that they found for themselves, I think it leads me to sort of what I hope that someone that I'm working with for my care would understand too, which is that I'm getting a lot of outside advice and it's a very fine line between what's someone saying something that worked well for them and is good advice and bad advice, as in it is not actually their experience or there's some marketing going on or there's all these other things that we don't have answers to online. We just see a perspective. So I think not a blanket dismissal of that sort of, you got this advice online, just toss it in the garbage. Like helping give us the tools to like weave through what falls in that category of unique, specific and helpful and what falls in that category of like leading potentially misinformation, potentially harmful, or might have negative consequences.
Kat
Yeah, I learned how to bolus for pizza through Instagram. I've learned so many helpful tips and tricks about management online. And you're right, Thomas, I think you do have to have a discerning lens because being online comes with a bunch of unsolicited advice and things that aren't vetted or clinical. But yeah, you can't discount what you learn from your peers. And right now, peer community, a lot of it is online. At least for me, speaking for myself, I didn't know another person with diabetes until 13, 14 years into my diagnosis apart from a family member. So much of my ability to even show up feeling confident and feeling like I knew how to communicate on my own behalf at my endocrinology appointment was really just by being more in community and having more of a surrounding of people who understand and can raise their hand and say, me too. Knowing that my experiences weren't in a silo.
I wasn't some random anomaly, right? It really has been by getting more plugged in online that I have felt that I can't even show up for myself better to advocate and communicate my experience to my team better, which has really helped with that reciprocal relationship and building that really critical relationship. So yeah, peer community, can't underscore how important that is as a person with diabetes.
Julia
Any other thoughts or expectations or hopes when you're seeing your diabetes care team?
Kat
Hannah, I'm curious what you think about what your experiences have been.
Hannah
I know, I could see you waiting for me to pipe up. Yeah, I think we talk about this a lot in the community that's like beyond the numbers in that sort of sense, like beyond A1C, beyond time in range. Like also what's your quality of life outside of your diabetes? And I think my current healthcare provider I see, who I also just realized is a CDCES, I had no idea. This explains a lot like her advice and like the way that she talks to me. It kind of makes sense now why she's so good. I came into her and was just talking about how I wanted a lower A1C. And I think that's like what a lot of people always talk about. I think one side of social media, you know, since we're talking about social media, as we see people who are diabetes influencers and they're like, this is my A1C, this is my time in range. And they share that for awareness, which is great. But then sometimes I look at that and like, I could do better. I can have a better A1C.
But I'm not taking, you know, this is my life is very different from their life. We're all very individual. And so my healthcare provider was like, why are you so stressed about your A1C? Like it's just an number. And the fact that a healthcare provider said that when I think it's usually the other way around, meant the world to me because I had been beating myself up. And I think especially as someone who's grown up with type one since I was nine, I think that's a common metric. And A1C, I know it's not like we talk about time in range or other, you know, metrics, but no matter what.
All she was saying was she was like, I'm happy with where you are and I'm excited that you're living your life. And our conversation shifted a lot from, you know, what's your A1C, what's your time in range to what are you planning to do this year? That's fun that you need my support on. And it ended up being like, I want to run a half marathon. Like I want to go to like Italy for a bit. Those conversations sometimes still relate to my diabetes, but more relate to what I want to do outside of my diabetes. And I think that's the whole goal. I'm aiming to manage my diabetes in a way so I get to think about it less, so I have more time to live my life. And obviously, diabetes is a big part of my life. I work at The Link, but there's also a big part of me that isn't related to diabetes. And I think the fact that she could recognize that so succinctly makes a really good healthcare professional.
Kat
Hannah, I think you bring up an interesting point, which is that your provider did a really good job of diffusing their inherent power differential because there is one and you have to acknowledge that as a healthcare provider, your patients are coming to you. You are the person of quote unquote authority in the room. And what yours was able to do was refocus care on you and your lived experience, not of her perception of you. And I think that's a really critical thing to establish early on and to even consider what are your own biases as a healthcare provider? What are you bringing to this appointment? What are your assumptions about your patient based on their clinical background, based on really anything that they present with, there's going to be inherent bias there. And so I think that's a really important piece to, again, establishing trust and making sure that the care is as good as it possibly could be and that the relationship is good, is just being able to level with yourself as a provider of like, are my assumptions of this person based on how they're presenting and how can I believe them first of all, when they talk about what their experiences are or their fears are or their symptoms are. How do I listen? How do I believe them? And then how do I empower them?
Just like Hannah referenced, perhaps her worry over A1C was contributing to her difficulty of having a good time in range or whatever it would be. And that might not be Hannah's experience, but from my experience, the stress of wanting to perform often is the barrier to a positive outcome. I think most people with diabetes can relate knowing you have an endo appointment in two weeks and being like, okay, I've got two weeks to get my Dexcom clarity report in tip-top shape, right? Because you know that they're gonna look at the past two weeks in a little graph and we're all smiling and nodding because we know what that feels like to want to go in there, it's just human nature. We want to go in there and feel like we've done a good job, right? Whatever a healthcare provider can do to help diffuse that and really center the patient's experience and see them as a patient, like in the round fully, not just for how they are presenting with their numbers or their outcomes.
Julia
So can you tell us about what the Diabetes Link offers to young people with diabetes?
Kat
Sure, so we are, like I said, the Diabetes Link. People may have formerly known us as the College Diabetes Network. So we have rebranded to be the Diabetes Link. So essentially we are a go-to, we're an org for peer support, resources, and leadership opportunities designed specifically for young adults. We essentially are the org that gets to kind of pull up a chair alongside young adults in their transition into adulthood, into more autonomy, individuation and we have clinically vetted resources for them, along with a robust peer community, both in person and online. Conventionally, we have focused mostly on the college experience. We have a network of college chapters across the US and I think at least one in Canada. We also recognize, and again, this is part of our rebrand, but we recognize that not every single young adult has the traditional four-year college experience, right? And they still need support, community opportunities for leadership.
So we are expanding our reach beyond just, again, that kind of traditional four-year college experience. And we have a robust Resource Hub that has clinically vetted information and resources, not just for the young adult, but importantly for the people who are alongside them in this journey, right? So that is their care team, their parents, their roommates, their partners, whomever is going to be a part of this picture of their care. We have something for them on our Resource Hub to make sure their communication styles are addressed, their questions around tech, partying, sex, relationships, mental health, all the things that may be hard to address in your care team appointment with a limitation of time or perhaps even absent of that trusting environment. We have that.
We also exist online. We have a Discord for young adults where we kind of share some more of these resources and that's how we can kind of show up for these people. Again, I mentioned our chapter network, but I would also love to talk briefly about our NextGen fellowship as well because we have two NextGen alums on the call with us. Hannah, Thomas, can you guys speak to your NextGen experience with the Link?
Hannah
Yeah, I was a NextGen Fellow in 2022, so it's been a while. I'm sure Thomas has more recent information on how we're doing the program. I was a chapter leader before that with the Link, and so I've been involved with the Link since 2018. But the NextGen Fellowship was a nice way for me to realize that I don't have to be in tech, like diabetes tech. I don't have to be wanting to be an endocrinologist. I don't have to be wanting to do one of these specific diabetes focused things that I think a lot of people think you have to do to, you know, be involved in the diabetes community. And they're all great things. They're just not my cup of tea. I knew I never wanted to do that, but I also knew I really wanted to be involved with the diabetes community. Now I'm on the marketing communications team here. You know, it's great. I still get to serve our community. I work in the diabetes space, but I don't have to see blood on a day-to-day basis. It's great. There's lots of opportunities. And I think that’s kind of what the Next Gym program showed me.
Thomas
Yeah, I feel like the NextGen fellowship was so valuable for me too. I did the fellowship in the summer of 2024. So by this point, I was very clearly on this path to becoming a physician and where I still am. And I think it was great to see diabetes, which was such a big player for me. And I just have always sort of assumed that was the type of doctor I would want to be. I myself attended the ADA conference in 2024. Seeing all the ways that people passionate about the care and management of diabetes bring something different to the table and the result is going to be improved outcomes across the board. I think through the NextGen fellowship, through attending the ADA conference, I think it just helped me feel much more informed about what's going on, what are the developments in insulin therapy across all different modalities.
How are insulin pumps getting better? How are pens getting better? How is everything trying to make progress so that care is improved no matter what people use to care for their diabetes? And I think also at that same time, being introduced to the resource hub feels very timely and tied into what we're talking about today because as a supplement for questions I didn't know I wanted the answer to, questions I didn't know I had, and then... I can see how that would transition so naturally into, well, now I feel a little bit more informed, even with questions that I want to bring to my diabetes care team. To have the Diabetes Link as both a resource and a launching point for those conversations has been really helpful.
Julia
Kat, Hannah, Thomas, any final thoughts?
Kat
Yeah, I think I would just like to share, you know, again, having just attended the ADCES conference, I had the opportunity to interface with so many healthcare providers and CDCES. They came up to our booth and talked to us. We gave out badge buddies to wear on your lanyard with your patients so that they could scan and get connected. And just wanted to share, you know, it was such an encouraging opportunity to be able to interface and just be in conversation with the people who are at the helm of caring for people with diabetes. Seeing their passion, seeing what they connected with. Some of them do live with diabetes and others don't. And we also had these flare pins we were giving out that said like, feeling ragey or probably high, you know, just funny little pithy phrases that were fun.
It was so cool to see people, these healthcare providers, connect with that messaging and grab a handful for themselves, for their patients. And again, really just highlighting and bringing full circle how we started this conversation that the human aspect and that connection point of the lived experience is just so critical. It's so critical. You can have all of the answers. You can be so smart. You can know exactly what you're doing medically, scientifically, but having that relational touch point with your patients and having any sort of line of entry to say, hey, I see you and I want to understand your experience, I want to relate to you. I think that just goes such a long way in earning trust and in opening up the line for communication so that you can be effective both ways, right? Because it does take a two-way reciprocal relationship to have effective care. So anyway, I left the conference just feeling super encouraged, seeing the passion in the way that everyone was showing up to better their care and their practices for their patients.
Julia
Hannah, Thomas, final thoughts?
Thomas
I think we’ve hit on a lot of different things. I would have loved learning just how likely accessible a CDCES would be to, you know, helping me take better care of myself and helping me do positive things over a long period of time, which I think the emphasis on sustained, if small, change is something that I think is so valuable to receive as a young person from a diabetes care and education specialist, right? Our perspectives are limited to our experiences, depending on who all we've gotten to hear from and learn from. For someone to be there and say, I've heard from a lot of people and I've provided some advice in this situation and here's what they've said to me and how I've changed what I'm doing and here's how that brought me to what I want to tell you now. Just to sort of zoom it out a little bit.
Once we have that rapport and that trust, it's something that I think is just so awesome that we are at a place now. I hope that we can encourage people to check out the resources for themselves.
Hannah
Yeah, and I'll end us on a note that I was thinking about as we were talking about the Resource Hub, but also just something that came to me this week. One really important thing for health care providers to do is if you don't know the answer to something that your patient is asking or you don't know how to support them, is to just ask questions to someone who might not. This week I received an email from a health care provider about how to support their patients with studying abroad and travel.
And they had gone to our Resource Hub and they looked at all the resources that they had, like specific questions that were outlined. They reached out to us at the Link and were like, do you have any of these answers? And it was probably like 15 questions. very in-depth. As someone who's lived abroad and has type 1, I got to write and respond to like, this is what I did. This is how I would support patients, not clinical advice, but this is what I would do with my experience. And so I think like there's always someone out there who will have some sort of answer for you.
And I think it's always best to just, you know, ask people who have that lived experience. Like for myself, I traveled abroad, so I have those personal firsthand experiences that I can provide to, you know, a healthcare provider if they have questions. Even if it's not clinical, it's a lot of stuff that's like, how do you get insulin abroad? So anytime, like I think if a healthcare provider, a CDCES, whoever it is, has questions that they don't know the answer to for their patients just ask around and get them because it means the world to patients who haven't had that support or had to navigate it for themselves. I did that all myself, right? And now I was so excited to see that there was like a healthcare provider out there fighting the answers for their patients. But yeah, I think moral of the story is just if you don't know the answer, ask questions to someone who might and then pass that along because I think we'll all be better for it.
Julia
Great thoughts. And I'd like to add just one final thought here. You know, diabetes care and education specialists are an important tool in your broader toolbox. They do a lot of valuable work in this area, can really help tremendously in your journey. So if somebody is interested in learning more about seeing a diabetes care and education specialist, the first step and a good step would be to ask your primary care provider if they can make a referral.
But tools like the ADCS program finder on adcs.org can also help you find a diabetes education program near you.
Thank you all for being on the huddle with me today. By sharing your lived experiences with diabetes, listeners have learned valuable insights into how to best work with young adults and address what's most important to them. This will add to our knowledge of person-centered care, which is at the heart of diabetes care and a lot of what we talked about today.
Thomas
Thank you for having us.
Kat
Yeah, thanks for the opportunity. We appreciate it.
Hannah
Great being here.
Julia
Thank you for listening to this episode of The Huddle and thank you to the Diabetes Link for partnering with us on this episode. Make sure to download the resources discussed on today's episode, are linked in the show notes. And remember, being an ADCS member gets you access to many resources, education, and networking opportunities. Learn about the many benefits of ADCS membership at adces.org/join.
The information in this podcast is for informational purposes only. It may not be appropriate or applicable for your individual circumstances. This podcast does not provide medical or professional advice and is not a substitute for consultation with a healthcare professional. Please consult your healthcare professional for any medical questions.