Are We Finally Taking Mental Health Seriously in Diabetes Care?

Summary

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Podcast Summary: Are We Finally Taking Mental Health Seriously in Diabetes Care?

Diabetes Connections | Type 1 Diabetes
Host: Stacey Simms
Guest: Dr. Taylor Stephens, Pediatric Psychologist, Cleveland Clinic
Air Date: March 17, 2026

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Episode Overview

In this episode, Stacey Simms explores the evolving landscape of mental health in diabetes care with Dr. Taylor Stephens, a pediatric psychologist from Cleveland Clinic who specializes in pediatric endocrinology and chronic illness. Together, they examine why mental health services remain rare in diabetes care, highlight what comprehensive support can look like, discuss strategies for supporting children and families across developmental stages, and emphasize the crucial role of community and identity for people living with type 1 diabetes (T1D). The episode also previews the upcoming Diabetes Plus Mental Health Conference.

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Key Discussion Points & Insights

The Gap in Mental Health Services for Diabetes

• Stacey’s Reflections: Despite 19 years since her son Benny’s diagnosis, Stacey notes, “we have never been offered any psychological care, a mental health consult, nothing… I feel like not a lot has changed” [05:53]. This mirrors the experience of many families.
• Cleveland Clinic’s Approach: Dr. Stephens outlines the clinic’s “wraparound services,” bringing together a medical provider, psychologist, dietitian, and social worker for higher-intensity care, particularly for patients with repeated DKA admissions or persistently high A1Cs.
  • “We really try to create a one stop shop where you get all the players and we, we create a team approach... Sometimes we'll co-treat... to talk about food in a way that feels destigmatized or not as aggressive.” [07:50]

Early Exposure and Motivation

• Dr. Stephens shares a formative third-grade experience, supporting a close friend during diagnosis:
  • “He actually requested that I sit bedside with him and help him administer that [first insulin injection].” [09:01]

Where Does Psychological Support Begin?

• At Cleveland Clinic, a psychologist sees every newly diagnosed pediatric diabetes patient and offers ongoing follow-up.
  • “Any family that is newly diagnosed is met with a psychologist. Additionally, I will often follow these families after they are discharged.” [10:20]
• Support is available regardless of the child’s age; even very young children and their parents can receive care.
  • “If I... have a 4 year old right now... we alternate visits where she is present and when I just work with the parents…” [10:20]

Common Stressors and Topics Addressed

• Adjustment difficulties post-diagnosis (for patient, parents, siblings)
• Diabetes burnout and distress:
  • “I don't use the word normal because I don't think normal exists, but it is typical to see adjustment difficulties after a diagnosis…” [11:45]
• Anxiety, depression, eating concerns/disorder, navigating school (504 plans), sports, and social situations
• Identity development:
  • “How do we incorporate T1D into our sense of self? How does that impact who we view we are, and how that shapes what we want to do in the future…” [12:45]

Developmental Roadmap (Hypothesis & Real-World Variation)

• Stacey suggests a pattern:
  • Elementary: “overachievers… super proud of type one”
  • Middle School: “the brain disappears… the brain fog”
  • High School: “burnt out or don't want to deal with it anymore”
  • College: “freedom... take some dumb chances”
  • 20s: “something happened. And I just decided to, you know, pay more attention to my diabetes.” [13:15]
• Dr. Stephens’ Perspective: Confirms variability, affected by age at diagnosis, family/cultural factors, but agrees: “middle school is... quite the hot mess. Very clinical term there.” [14:22]
  • “There is no one example of type 1. It looks different for every person and every family.” [14:22]
  • “Perfect cannot exist in the world of diabetes.” [30:22]

Tools & Techniques by Age Group

Young Children (<10)

• Use of play therapy, medical play, and stories (bibliotherapy):
  • “We know that play and stories are their language... I have several plushies of pancreas… We process, like what does this look like? Whether it's a procedural aspect... or desensitizing the heightened stress.” [16:55]
• Comic book creation to develop narrative around diabetes identity:
  • “I have written comic books with kids where they are the superhero and part of their character has Type one…” [17:55]
• Parents can use these tools at home: “... incorporate those things. So I will often involve parents in that process as well.” [20:05]

Early Puberty (10–14)

• Uniqueness in technology exposure
  • “They have been afforded technology maybe earlier than their peers because of diabetes... But then how do families still maintain their own personal family values and parental limitations on things like social media?” [20:59]

Older Teens & Young Adults

• Identity exploration, social and romantic relationships, parties, driving, transitions to college:
  • “How do we disclose to a potential romantic partner about type one? How do we discuss these things in new settings?” [21:56]
• Educational strategies:
  • “Introducing these topics in a nonjudgmental open discussion is key to creating a safe place where they can ask questions.” [23:15]
  • “...what’s a hard and fast rule versus... things we can be prepared around.” [23:15]

The Evolving Role of Technology

• Mixed Impact:
  • Body image challenges, “visual representation of type 1,” and sometimes avoidance due to stigma [29:00]
  • Hyperfocus on data, leading to stress or “hyperglansemia” (obsession with keeping numbers in range):
    • “Hyperglansemia… I'm seeing more data driven distress.” [29:53]
    • “Perfect cannot exist in diabetes... We can't get an A in diabetes.” [30:02]
• Parental Experience: Many parents, especially dads, experience anxiety and perfectionism due to constant data access.
• Advice: “A1C is not a grade in diabetes, even though it feels that way… There are so many factors outside of an individual’s control.” [30:45]
  • Focus on behavioral modifications and changing family language around diabetes metrics

The Importance—and Flexibility—of Community

• The “diabuddy” concept:
  • Not just another person with diabetes: “Diabuddy doesn’t actually need to be someone with diabetes, but someone who cares enough to learn.” [26:05]
  • Example: A college student prepping their new roommate as a diabuddy by teaching them about their devices before move-in: “...their new roommate was so curious... learned all the different terms, understood what dexcom was..." [27:40]
• Community looks different for each person; some teens resist diabetes-specific friends, but support can come from anyone who’s invested and educated.

Nothing Is "Normal"—But You Aren’t Alone

• Dr. Stephens stresses that, although every story looks different, “there is someone else experiencing something that you are… the flavor it might come in or how it might show up might look different for people.” [33:12]
• Community support addresses feelings of isolation and validates fears and struggles often thought to be unique.

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Notable Quotes & Memorable Moments

• On Team-Based Care:

  “We really try to create a safe one stop shop to process those pieces.”
  — Dr. Taylor Stephens [08:55]

• On Developmental Trajectories:

  “Middle school is... quite the hot mess. Very clinical term there.”
  — Dr. Taylor Stephens [14:22]

• On Perfectionism & Data:

  “I see a lot of that with my parents… there is just data at our fingertips… But perfect cannot exist in the world of diabetes. I just kind of a hard stop on that.”
  — Dr. Taylor Stephens [30:02]

• The Diabuddy Concept:

  “Diabuddy doesn’t actually need to be someone with diabetes, but someone who cares enough to learn. And I think that is key.”
  — Dr. Taylor Stephens [26:05]

• On Mental Health’s Central Role:

  “Mental health is part of diabetes health. That is part of the picture.”
  — Dr. Taylor Stephens [33:12]

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Important Timestamps

• 06:56 – Introduction of Dr. Taylor Stephens & her role at the Cleveland Clinic
• 07:50 – Description of Cleveland Clinic’s multidisciplinary diabetes-mental health services
• 09:01 – Stephens’ childhood experience supporting a newly diagnosed friend
• 10:20 – How and when psychology is integrated into diabetes care at Cleveland Clinic
• 11:45 – Major stressors and challenges seen across the lifespan
• 13:15 – Stacey’s “developmental roadmap” hypothesis; Dr. Stephens’ perspective
• 16:55 – Play and narrative therapy tools for young children
• 20:59 – Unique challenges with technology and social media among preteens
• 21:56 – Identity, relationships, and transition challenges in teens and college students
• 23:15 – Guidance for parents on education and safety conversations
• 25:36 – The meaning of “community” and redefining the diabuddy
• 29:00 – The upsides and downsides of diabetes technology on mental health
• 30:45 – Reframing metrics: “A1C is not a grade in diabetes”
• 33:12 – Ending the sense of isolation: “You are not alone”
• 35:35 – Diabetes Plus Mental Health Conference: purpose, format, and access

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Diabetes Plus Mental Health Conference

• Dates: May 1–2, all virtual
• Tracks: Continuing education (for professionals) + a general track (for patients, families, caregivers).
• Focus: All types of diabetes and mental health topics for various ages and stages.
• “This is a two-day opportunity to just soak in that content… [where] mental health is the focus.” [35:35]
• Discount code mentioned: DMH connections (15% off) [show notes]

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Organizations Highlighted

• Diabetes Plus Mental Health Conference
• Blue Circle Health: “...doing some wonderful work on increasing access to support... especially for young adults during transition.” [39:12]
• Breakthrough T1D: Continues advocacy and community building, especially through local chapters.

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Dr. Stephens’ “Why”

• “It is something that I look forward to every day. And yes, my colleagues would say that I am quite the energizer bunny when it comes to this work.” [37:32]

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Tone & Language

• Compassionate, conversational, practical, and encouraging
• Humor and candor in discussing real-world diabetes challenges (“middle school is quite the hot mess”)
• Emphasis on destigmatization, acceptance, and flexibility rather than “perfection”

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Key Takeaways

• Comprehensive care with true integration of psychology and medical management, as at Cleveland Clinic, remains rare but is possible and highly beneficial.
• Mental health should be normalized and prioritized at all ages—not only at diagnosis but throughout adolescence and into adulthood.
• Parental and community support is crucial, but should be defined by the individual’s needs—community is more flexible and personal than sometimes assumed.
• Perfection in diabetes is impossible; both patients and parents benefit from reframing data and adopting self-compassion.
• You are never alone: whatever the struggle, someone else is experiencing it too.

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This episode is an essential listen for parents, caregivers, and anyone living with type 1 diabetes, providing validation, resources, and hope that the conversation around mental health in diabetes care is finally moving forward.

Transcript

[A]

Support for this episode comes from Dexcom. Let's talk about comfort and ease, because those really matter. Dexcom G7 is easy and painless to apply, easy to set up, and even easier to use. My son says half the time he forgets he's even wearing it. It's also the most accurate CGM system available, and it fits seamlessly into your life. Connecting with smartphones, watches and health apps. G7 warms up fast, has a new 15 day version for adults, and with a 12 hour grace period at the end, you can swap it when it's convenient. It's simple, powerful and built to help you stay on track. Head to Dexcom.com to learn more. This week on Diabetes Connections. At this point, we all know how important mental health is for diabetes, but unless you're very lucky, you're pretty much on your own. I mean, my son was diagnosed more than 19 years ago and we have never been offered any psychological care, a mental health consult, nothing. There are the rare programs out there, though, for pediatric endocrinology and we've got one of the best. Dr. Taylor Stephens is a pediatric psychologist with the Cleveland Clinic who specializes in pediatric endocrinology conditions. She's here to share what we can all do right after diagnosis and as the years go on, to support our kids and ourselves. And I think this advice is fantastic. Even if you were diagnosed as an adult and certainly if you're living with diabetes as an adult, this podcast is not intended as medical advice. If you have those kinds of questions, please contact your healthcare provider. Welcome to another week of the show. I am always so glad to have you here. I'm your host, Stacey Sims. You know, we aim to educate and inspire about diabetes with a focus on people who use insulin. Quick personal note, as this podcast is going live, it is St. Patrick's Day. I'm not Irish, but St. Patrick's Day is very special to me because it is the anniversary of when my now husband of many years first asked me to go out on a date with him. We were both working in Utica, New York at wktv. And a lot of times local TV stations and media outlets participate in these big local events. I mean, I have been in Thanksgiving day parades. I have been the, quote, celebrity emcee at a lot of golf tournaments and events. And we were in the St. Patrick's Day parade in Utica, New York in 1995. Slade was driving the car. I was the passenger in the car waving, you know, hi to viewers. Some people who knew who I am, some People who had no idea who I was, I'm sure I was the evening anchor at wktv, which was the NBC affiliate at that time. And Slade and I knew each other. We were friends. I had started working at that TV station the previous summer. So we had known each other about six months and we'd hung out together, but we hadn't really kind of been alone together like that. And we had a great time. That was in the morning. It was very early in the morning. And then it was a day of parties. Utica's one of these towns that loves St. Patrick's Day. And there is something every minute of the day, a party, a bar, a restaurant, a parade, lots going on stage. So we stayed together and just kept meeting up at more and more events as part of a pretty big group, frankly. But as the day went on and the night went on, the group got smaller and smaller until it was finally just him and me. We wound up having breakfast together at 2 o' clock in the morning. And then he said, hey, want to go on a real date? And we did. So that was. I'm mortified to say I had to take the calculator out 31 years ago. So Happy asked me out on a date. Aversary to slade and happy St Patrick's Day to you. Enjoy it safely and, you know, be careful who you hang out with. You never know. You look at us 31 years later. All right, onto the show. Some business here. I need your community commercials. You're going to hear one in this episode. But that is my last one. That's the last one in the queue. We had a great start at the beginning of the year on this. Lots of people sending me their community commercials, instructions and information how to do this. I'll put a link in the show notes, but basically, gimme a commercial for your diabetes project book product community event. I'm excited to spread the word. I'm hearing from people that they think it's kind of difficult. I know not everybody has a microphone and a studio set up. Seriously, you can do this on your phone. Don't make it difficult. Read the instructions. Get me your community commercials. Okay. We are talking about diabetes and mental health on the podcast today. And I've been doing this show since 2015 and I feel like not a lot has changed. Right. As I mentioned in that opening tease, we have never been offered any kind of psychological help for Benny's diagnosis or living with Type one. I've certainly taken advantage of things I've encountered at conferences. And you know, I've talked to our endocrinologist, especially when Benny was younger, and, you know, look, I've tried to do my best, but, you know, it's up to him now, and I can't really find anything out there for him that would support his mental health as much as his endocrinologist supports his physical health. So I was really excited to be connected to my guest, Dr. Taylor Stevens. She's a pediatric psychologist specializing in treating chronic medical conditions, including pediatric endocrinology. She's with the Cleveland Clinic, which apparently has an incredible team approach to Type one. They include, as you'll hear, mental health service. She talks about that. And Dr. Stevens is also on the planning committee for the Diabetes Plus Mental Health Conference. This is a conference that started a couple of years ago. It is fantastic. It is happening May 1st and 2nd, and it is all virtual. So you can sign up, you can watch it live, you can get the recordings, but it is all online. We have a promo code. I'm going to link this up in the show notes. You can use the promo code. DMH, diabetes, mental health, DMH connections. And that's going to save you 15% off the ticket price. Taylor Stevens was just fantastic to talk to. I'm so excited about this interview. I cannot wait for you to hear it. And it's coming up right after this. From the very beginning, they mean everything to you. And that means you do anything for them, especially if they're at risk. So when it comes to type 1 diabetes, screen it like you mean it. Even if just one person in your family has type one, you are up to 15 times more likely to get it, too. Screen it like you mean it, because one blood test could help you spot type 1 long before you need insulin. Talk to your doctor about how to screen for type 1 diabetes because the more you know, the more you can do.

[B]

So don't wait.

[A]

Visit screenfortype1.com to learn more. Again, that's screenfortype1.com Dr. Taylor Stephens, welcome to Diabetes Connections. I'm so excited to talk to you. We can never talk about mental health enough. Thanks for being here.

[B]

Thank you so much for having me. It's truly an honor.

[A]

That is so nice to hear. Before we jump in, would you mind telling me a little bit about yourself? Tell me in what capacity you see folks in the diabetes community. Let's start from there.

[B]

Sure. So I am a pediatric endocrinology psychologist, so I specialize in working with kids, teens and young adults with type 1 as well as their families. So I provide outpatient individual psychotherapy for these patients. I also staff a clinic that is a multidisciplinary clinic. So that is myself, a medical provider, a dietitian, and a social worker for more of that wraparound services to care for maybe patients who are struggling a little bit more. We try to provide higher intensity of care.

[A]

It's amazing to hear that kind of service available. And I mean, I know, you know, it's not. Most of the country does not have this. So I guess what I really want to ask is why. Why do you guys have that? Like, tell me how it came to be, if you know.

[B]

Yeah, well, you know, I think one of the things we know is both a predictor for diabetes outcomes as well as mental health outcomes are repeated DKA admissions and prolonged periods of elevated A1C. So this wraparound clinic was really born out of our efforts to try and support our patients and families who may be struggling the most with certain factors of diabetes, which, as the audience knows, a majority of factors involving diabetes management are largely out of your control. And when we consider those 42 factors that impact glucose levels and pieces that can contribute to those repeated DKA admissions or elevated A1C levels, sometimes individuals just need a little bit more support in those areas. So we really try to create a one stop shop where you get all the players and we, we create a team approach too. So it's lovely. Sometimes we'll co. Treat like, I will go in with the dietitian and we will work on how to talk about food in a way that feels destigmatized or not as aggressive. So we really try to create a safe one stop shop to process those pieces.

[A]

So you don't live with type one, but your exposure to Type one came very early.

[B]

Yes.

[A]

Tell me about that.

[B]

Yeah, when I was in third grade, one of my best friends, actually, I distinctly recall he kept getting in trouble because he kept asking to go to the bathroom. And my teacher thought he was trying to avoid school, which as a third grader could very well be part of the picture. But we. We later learned that he was diagnosed with type one. And upon his admission, they were struggling to get him to administer his own insulin. And prior to discharge, they wanted to safely see him give one injection. And he actually requested that I sit bedside with him and help him administer that.

[A]

Wow, that's. And you guys were so little.

[B]

Yes. Yeah, it was a lot. But it was also a really rewarding experience to feel like a trusted friend in that moment, because I know how Vulnerable he was feeling. He was a very athletic guy and he definitely put on the tough face. So I think it was a moment where I felt Val valued as a friend.

[A]

That's really cool. You know, it's funny, I have a bunch of questions for you, but I'm a little bit puzzled of what to ask because I don't have any personal experience with this. You know, when my son was diagnosed at age 2, we had fabulous care, but we did not have any mental health care, which is, as we've said, is very typical. So I guess my first question is, where do you start with these families? And I know it would definitely depend on age, but in general, we definitely

[B]

start at initial diagnosis. So I function primarily on the outpatient side of things, but I do have an inpatient consultation liaison psychologist who works closely with me. And we are a routine consult order for any new diagnosis. So any family that is newly diagnosed is met with a psychologist. Additionally, I will often follow these families after they are discharged. So I'm actually working to create a little bit more structure around that where there hopefully will be required appointments with me just as a check in to help normalize the involvement of psychology early on. And actually I don't really have an age limit. If I, I think the youngest I've seen recently was diagnosed at 15 months and I will, I will work with the parents. That is a big, big adjustment. You're already adjusting to parenting, which is a whole other ballpark. Add diabetes on top of that and there are so many more layers to how to navigate those pieces. So even with I have a 4 year old right now and we actually alternate visits where she is present and when I just work with the parents to really support their team approach as a family for caring for diabetes. Because even though maybe there is an individual with diabetes, it is a family event.

[A]

Yeah, for sure. What are some of the most common. I hate to use the word stressors, but I mean the whole thing, all of type 1 diabetes is a big deal of stress. But what are some of the most common things that you do run into when you're working with these families?

[B]

So as I mentioned, I work throughout the youth lifespan, which includes all the way up to about probably 25, I think is my oldest I have worked with. So I get everything in between. So starting from initial diagnosis and adjustment to that which is typical. I don't use the word normal because I don't think normal exists, but it is typical to see adjustment difficulties after a diagnosis, whether that's for the kiddo the parents or even siblings. I might work with families to discuss engaging in diabetes care. So if we're noticing any diabetes burnout or diabetes distress, any of the more common mental health conditions that teens do experience compounded by diabetes. So anxiety, depression, even concerns with eating, whether that's disordered eating or just difficulties engaging in the diabetes management associated with eating things as simple as navigating school. How do we develop a 504 plan and ensure we're being supported appropriately? Navigating sports and activities and extracurriculars. How do we deal with this socially? How do we tell our friends about diabetes? One thing I am passionate about is identity development. How do we incorporate T1D into our sense of self? How does that impact who we view we are, and how that shapes what we want to do in the future as well as transition to young adulthood. I have many kiddos that are heading off to college, which is always exciting, but a whole other ballpark. So truly, we talk about it all.

[A]

All right, I have a hypothesis for you. I have said over the course of speaking and, you know, writing my words, worst diabetes mom books and everything, here's what I think is typical, as you said, not normal. And you tell me if this kind of fits. And most of this comes from, obviously, my experience with my son, who is 21, was diagnosed at 2. So we went through all of childhood. So I think that most kids are like these overachievers in elementary school, right? They're super proud of type one. They want to cut the ribbon at the walks. They're into it. Middle school, they lose their minds. The brain disappears. They mean well. They have no capacity. The brain fog is there. High school, sometimes they're, like, burnt out or they just don't want to deal with it anymore. Sometimes their activities really engage them, right? I want to feel good enough to play this sport. I want to do what I need to do to be in the play. So they get there. College, the freedom, they go bananas. They're usually pretty safe, but they take some dumb chances and then, like, almost like magic. Everybody I talk to in their mid-20s is like, I don't know, something happened. And I just decided to, you know, pay more attention to my diabetes. It seems that's the roadmap that a lot of parents get put in front of or.

[B]

No, it's definitely one of the roadmaps. I think there are. There are so many pieces that go into it. You know, I think age at diagnosis can impact where we fall on that roadmap. You know, I think Yes, I generally see maybe a little bit more of that wearing the T1D badge proudly early on. But I also have plenty of kids who are avoidant of that and shy and want to keep it to themselves. And yes, middle school is. Is quite the hot mess. Very clinical term there. You know, with puberty starting and all of the pieces and how the hormones that are related to puberty interact with insulin, needs can be so different for each person. So it is just a very tumultuous time. I think additionally, you know, there are factors that within family systems or cultures can impact that roadmap. That is definitely one of the more common ones. But honestly, I think I have seen so many deviations of that. And I think, you know, to your point, it. It really highlights that There is no one example of type 1. It looks different for every person and every family. I would love to believe that everyone in their mid-20s just magically.

[A]

Yeah, I mean, I didn't mean it like that.

[B]

Trust me, that would be awesome.

[A]

Like, I would love that. But there. There is something to the frontal lobe thing that people talk about.

[B]

Right. Development helps. You know, I think that that is a good thing. You know, I think in general to the sense of identity, not only the actual cognitive brain development, but the sense of identity is also becoming more solidified in those early teen and young adult years. So I think part of that piece may also be accepting that Type one is part of the picture and acceptance can afford us a lot. It can afford a sense of understanding that these hard things that you do every day are part of the picture and no longer a sense of, like, punishment or shame or embarrassment. So I do think along with the age and maturity and development and maybe a decline in those hormonal shifts in teenage years, young adulthood may afford a little bit more of that acceptance.

[A]

Yeah. And I should have led that roadmap again. That was hours. Right. But that's why you're the. You're the one seeing patients and I'm the one yakking into the microphone. I want to stay for just a minute on the. On the younger kids.

[B]

Yeah.

[A]

Can you talk a little bit about. And I don't know if it's still called play therapy, but it's so helpful if you can say, like, well, this stuffed animal suddenly has type one or different things. Are there tools that you use in those younger kids? Can you talk about that?

[B]

Yes, definitely. You know, I think when we think of kiddos, I would definitely say below 10. I would categorize these tools as being most Effective. We know that play and stories are their language. That is their mode of understanding, their mode of sharing. Play and stories are really there. Their language and the way that they understand the world, the way that they understand themselves. So I regularly use what we would call bibliotherapy, so using books. So I have probably a very thick stack. I think all of these books right here are all of my type one books. So we will use those in sessions. Those are also tools and effective ways for students to communicate to their classes about Type one and educate others. I also regularly use other forms of medical play therapy. So I have. I don't know if you can actually see it. I have a medical toolkit up there. I have the Diabetes Barbie. I have several plushies of pancreas. And we do process, like what does this look like? Whether it is a specific procedural aspect of diabetes, like injections, like a CGM placement, or if it's more broad of just really trying to desensitize the heightened stress that they might feel in the medical setting. And actually, one of my favorite things is using a narrative or art approach with kids and exploring their understanding of diabetes. So I have written comic books with kids where they are the superhero and part of their character has Type one, whether that is viewed as their superpower or an obstacle, it looks different for different kids. But we explore creating their own story of what it means to have diabetes. And that has been so powerful for kids to express that and then be able to share that with their caregivers, their siblings or their classmates.

[A]

That's amazing. I love that. Is that something that you know, if a parent is listening? I would imagine that. I mean, I can't draw anything, but that's something that I would try with my child. Right. I mean, something you could kind of do on your own. Right back with more of that conversation. But first, I want to bring you a word from our community.

[C]

It was the summer of 2012 and type 1 diabetes knew no cure. But it had not yet faced off with Jonathan Braxton. Imagine how the lives of everyone touched by type 1 would be different if we had a cure today. My name is Stephen Marks and I was introduced to type 1 diabetes in 2005, courtesy of my then 2 year old niece being diagnosed. Her diagnosis led me on a journey of advocacy, fundraising and discovery. One thing I discovered which bothered me so was the large degrees of effort and money poured into the diabetes treatment industry and not so much into the diabetes cure industry. My journey eventually led me to write a story of the cure A story of hope and belief and inspiration. The story of one family's quest to fight through the obstacles of science, politics, war, money and greed to deliver us the cure. Improbable, maybe impossible, maybe not. Braxton's Turn, Braxton's plan and Braxton's Miracle. Available on Amazon.

[B]

Yes, totally. And you know, often that may be something where we completely reserve it into my office to create like the dedicated creative space on that. Sometimes they want to continue it when they go home and work on that with their sibling in tandem and have their sibling as a character in the comic book. Um, I think it's really customized to each kid. I will also involve parents in this process. When I mentioned the identity formation, I will actually challenge my parents to do the same type of prompt I might be giving a kid because they're also taking on a new identity. Being the parent of a type 1, whole new piece of the pie chart of who you are. How do we incorporate those things? So I will often involve parents in that process as well.

[A]

That's great. Um, I'm going to ask you the same question. You talked about kids under 10, maybe. And I hate. I know again, it looks different for every person, but maybe some typical stuff for those early puberty years. 10 to 14 ish.

[B]

Yeah, fun years for sure. I would say you get such a wide range of how kids present in that age. Some are 13 going on 30. Some really, truly are just living that true 12 year old life. Yeah. And I think one of the bigger challenges actually that I've noticed talking about with this age group is technology. They have been afforded technology maybe earlier than their peers because of diabetes with their CTM or their pump. But then how do families still maintain their own personal family values and parental limitations on things like social media? How do they grapple with this innate need for access to technology while also having their own personal family values around limitations in that that has been quite the struggle. And honestly it is an ever evolving topic because the way that kids interact socially is through technology these days as well.

[A]

Oh yeah, that's really interesting. And then the older teenagers, I'll ask you about.

[B]

Ah, yes, I do think the identity exploration during the teen years can be really fruitful. You know, this is something where I think they're grappling with who they are, who they want to be trying on different hats, if you will. So we will do a lot of that processing. There are other new topics that come up. How do we disclose to a potential romantic partner about type one? How do we discuss these Things in new settings with people who haven't known us since we were diagnosed. Considering the transition to young adulthood, how do we safely navigate going to a party? You know, I think in general we want to talk about engaging in life in the safest way possible. So we're not going to ignore that those things happen. So we will have honest conversations about that. How do we prepare for driving in Type one? That's a whole other topic. So there are new experiences that they are excited and grappling with and maybe uncertain about. That is a really unique place for us to figure out how to navigate that together.

[A]

Wow. Okay. I again, I hesitate to ask you this because I know it's hard to generalize for such a specific topic. What does work when you're talking about driving with kids, when you're talking about partying, Things like that, being safe? These are different things. But are there any techniques or things that you can share with parents that have worked?

[B]

I think first and foremost, repeated education is helpful. We know that these topics, as much as we would like to la, la la la la, avoid them, they're being discussed earlier and earlier for our teams. So introducing these topics in a nonjudgmental open discussion is key to creating a safe place where they can ask questions. It is so important to allow them to understand that we can talk about these things so they don't feel like they need to hide them. The other pieces I think that have worked for me when talking about these with my teens and young adults is being very clear on what's a hard and fast rule versus these are things that we can be prepared around or be mindful of. But there are certain things that are hard and fast we do not get behind the wheel if we are experiencing hypoglycemia. There are pieces that I think can help a teen or a young adult really understand how to make these decisions. And obviously the key is also talking about how do we do this? Like, what are the logistics? Giving them tips and tricks, which I am very lucky. I staff a transition clinic, which I neglected to mention in the beginning, for young adults as well. And luckily the medical provider who does that with me, she herself has Type one. And so I think we present a uniquely balanced. I have a lot of the education behind me and she has a lot of the lived experience. So we present both perspectives. I talk a lot about having a diabuddy and what that looks like and who can do that and what they need to do, what are their responsibilities. But I think repeated education in a nonjudgmental way, whether that's coming from a parent or caregiver or someone else, sometimes, for whatever reason, the words that fall out of my mouth may be the exact same things that mom said two weeks ago, but I'm not Mom, so they land different. And allowing space for your teen or young adult to hear them in whatever way is going to sink in.

[A]

Yeah. You know, it's interesting you mentioned having a diabuddy, and I think that there, you know, there's no substitute for community. I don't know where I would be without the women and the men, too. But, you know, a lot of diabetes mom friends I made along the way really held my hand and said, it's going to be all right. And a lot of the adults was type one who said, you know, that's

[B]

not really going to be all right,

[A]

but it's going to be okay. You know, like, don't worry about that bit. Worry about this bit. But a lot of kids, especially those teenagers again, and this is how Benny was, we're like, I don't need any diabetes friends. I'm not going back to camp. I don't need community. And he has. He's always had community, so he's not the best example. But he did go through many years where he was like, stop with the diabetes community and the diabetes camp. What is your advice about that? Because we're told over and over again it's so important, it can't make such a big difference.

[B]

Yeah, well, you know, I think broadening our understanding of what a diabuddy is. Diabete doesn't actually need to be someone with diabetes, but someone who cares enough to learn. And I think that is key. Creating space for your child or teen to drive who they want to be in their circle, whether they have diabetes or not can be really powerful of also telling them that you trust them. That does mean we have to educate our friends. Right. If they don't know the world of diabetes, that gives your teen or you an opportunity to educate them. But diabetes can be a lot of different people. And I think that understanding who that person is is dependent on the person with diabetes and knowing what they need in that moment. And yes, sometimes, especially like with the camp world, it can feel like you are just being told that that's your only community. But there is so much community outside of that, and knowing that you have both and all the options is important. But your diabete might just be your roommate or might be the person who takes calculus with you. I wouldn't Take calculus. But you know someone in your class who's willing to follow your DEX data while you guys go out together for a night of parties, or someone who is willing to keep a little image on their phones of the signs and symptoms of lows versus highs so that they can help support you. This can really expand who a diabuddy is. And I think that's most important, that it's a trusted person, whether they have diabetes or not.

[A]

That's fantastic. That's just so good to hear because I think we kind of know that, but to hear it that way is so clarifying.

[B]

Yes. Yeah, that's great. I had one college student who actually, over the summer, before getting there in the fall, they had several FaceTime visits with their new roommate. And their new roommate was so curious, which we love. We soak that up and wanted to watch them give them insulin, wanted to watch them fill their pump, learned all the different terms, understood what dexcom was versus T slim. So over the course of, I think it was four or five FaceTime sessions, learned all of this education prior to even getting there in the fall. So we processed how confident this made not only the individual with diabetes, but the parents too, knowing that this person was so invested in learning. So they would know they had specific labeling on the fridge that included where the insulin was. So that was a very strong diabete who had no previous exposure to the diabetes world.

[A]

That's very cool. Very cool. We've talked a little bit about the technology, and it certainly has changed in the last, you know, generation of people with type 1. What has surprised you about that? Because, you know, from where I sit, a lot of things. I mean, easier is not the best word to use with Type one. They seem easier, but there's still. You still have to put infusion sets on. You still have to put insulin in your pump. There's still a lot to be done. And I think people are wearing more technology than they were. How does that look like? What does that look like from your perspective?

[B]

Yeah, I think there's honestly a variety of different topics that come up related to that in my office. Whether that is body image concerns and how the bulk of devices can feel overpowering, even though it affords so much in terms of data management, avoidance, because it is a visual representation of type 1 and feeling outed by their devices. Even though, to your point, it is becoming so much more commonplace. We are even seeing in the more general sphere, you know, use of CGMs for non type 1 individuals. So there's more and more prevalence of it. But there are still individuals who feel like it outs them. Swinging on the opposite side of the spectrum, though, I'm seeing more data driven distress and what I like to call hyperglansemia, where we are so focused on that data.

[A]

I am so mad that I didn't come up with that. That is genius. I'm sending you to my trademark attorney, hyperglansemia.

[B]

Oh, and you know, I think that's true not only for our teens and young adults, but really, I see a lot of that with my parents, that it's all parents that data driven stress. You see the data and you want to make changes, especially for my dads that might feel like they are the CTI of their house chief Technology officer and they just really struggle because there is just data at our fingertips, which is wonderful and dramatically changes what diabetes management looks like. But I do think there is this edge of perfectionism that is coming out and perfect cannot exist in the world of diabetes. I just kind of a hard stop on that.

[A]

So how do you talk to parents? How do you talk parents down?

[B]

Yeah, it looks like the conversations are shaped based on their values and we try to tap into ways that we can meaningfully move away from that. How do we use data as data, but also not use data as a grade or a reflection of our value or worth? Yeah. There are going to be some days where you're hitting that time and range at 70% or higher and you're feeling awesome. There are going to be days, unbeknownst to you or 42 factors otherwise, where the time and range just looks really out of reach. And that is not always a reflection on your effort, even though it always feels like that. One of the strongest things I say, and I readily say this to my ENDO providers that I work with, A1C is not a grade in diabetes, even though it feels that way. Every time you go to that endo visit, you're waiting in the room, waiting to hear back, almost as if after a test, waiting to get your score back. There is that anticipatory? What am I going to get? We can't get an A in diabetes. There are so many factors outside of an individual's control when it comes to diabetes management. I don't even use the word diabetes control. I think we prepare and we plan for diabetes and we respond to diabetes. We can't really control diabetes. And I think once we remove that idea that we're supposed to control it, it allows for a little more flexibility in how we approach management. So sometimes that looks like setting specific goals and barriers around. Okay, we're going to limit ourselves from checking the dexcom from six times a minute to. Okay, we're going to actually check it every five minutes. Sometimes it's shifting from we're not going to look at the follow up. We're actually just going to glance at our sugar pixel every however many minutes. So there are lots of behavioral modifications we might use with parents, but ultimately I think it's also modeling that language that I use in the room and then asking my endo providers to do that as well. With certain families, we might actually talk about their data different in their endo visits if we know there are stressor points in how their data shows up.

[A]

Wow. Boy, we could do a whole show on just, you know, changing your behaviors around the Follow app. Maybe we'll do that in the future because I've certainly changed mine over the years. But we're also a family that didn't have it from day one, which I do think really changes.

[B]

It's a different experience.

[A]

Yeah, very different. Very different. What are some things that still surprise you? Hmm. About this.

[B]

You know, I was thinking about this and I honestly don't know that there are any surprises anymore. And I think the reason why I think that's important is in psychology, we use this term normalizing things. Again, I don't believe that normal is a thing, but we try to demystify experiences, showcase that you are not alone. And I honestly cannot think back to anything that has really surprised me because I think I have heard some shape or form of a stressor that someone is going through for someone else. And I think that it really highlights that. One, mental health is part of diabetes health. That is part of the picture. And two, you are not alone. There is someone else experiencing something that you are. And, you know, the flavor it might come in or how it might show up might look different for people. But, you know, I think there's always going to be evolutions of how things show up. Like maybe the newer piece of dealing with technology, access and social media, or how do we balance teens getting these ideas for wearing their Dex sensor on their forearm, even though it's not technically an approved site because it's shown on TikTok. Well, how do we successfully navigate getting information and how do we discern what is valuable versus not? We have those conversations, but we've also had those conversations in other ways before, just evolving. So I'm not sure that there's anything that truly surprises me. It's Just a different iteration or evolution of it.

[A]

I'm glad to hear that because we find that at like our mom's night out events, so many women will say afterward, I thought I was the only one. I thought I was the only one who had difficult in laws. I thought I was the only one, you know, who. And I shouldn't say it like that, but I thought I was the only one who had difficult in laws who didn't understand the differences between type one and type two. I thought I was the only one who was afraid of sleepovers. I thought everybody else was having perfectly straight lines. You know, I thought I was the only one. So I'm so glad to hear that because, you know, it is like a weight lifts off your shoulders when you realize that this problem may be unique to my family in the way that we're going through it, but it's not unique to the whole of the situation. Yeah. Oh, my goodness. Let's talk before I let you go about the Diabetes and Mental Health Conference. Because this, I mean, you are, you guys are. But there at Cleveland, you got a unique and wonderful program, but everybody needs access to this. So talk to me about your involvement there.

[B]

Yes. So the Diabetes Mental Health Conference is a two day virtual conference where there's both a continuing education track, so for healthcare professionals or diabetes educators, and then there's also a general track for individuals with diabetes, caregivers or loved ones. This really spans the spectrum of diabetes as well. I want to highlight that this is not just focused on type one. This is focused on the expanse of what diabetes looks like, whether that's type 2, Lada otherwise. And this is a space where the focus of the conference is mental health and diabetes. Now, usually at other conferences that are focused on diabetes, mental health is included, but it's just a portion of it. The entire two days of content that we're providing is all focused on the intersection of how diabetes and mental health show up. I think what's so unique is that we do have a variety of topics. You can select what you attend. So there's a variety of topics spanning again, type 1 for caregivers, type 2 for loved ones, how to navigate a certain piece of adulthood with insurance. Like there are topics on everything and you get to customize essentially your plan of what you're going to learn. But the focus is mental health. So. So I really think it creates wonderful discussions. There's unique opportunities for fireside chat. So there's really community building as well, is virtual, which I also think to your point, of access is key. Completely virtual. You can attend in your pajamas, on your couch, but it can be something that in locations where there might not be as readily access to mental health support specific for diabetes, this is a two day opportunity to just soak in that content.

[A]

Before I let you go, I'd love to know, how are you feeling about your work? Are you still excited to be with these families? Is it difficult? I mean, are you very passionate about it still?

[B]

I mean, I'm sure that you can't tell it all, but I am very passionate about what I do. This work is particularly meaningful and rewarding and challenging. Yes. But it is something where I take a very what I call a strength based approach. So this is something from psychology. And I think my focus is really trying to tap into existing strengths that all my kids, teens and families have and leverage those to help with the challenges. And I find that not only are we able to make meaningful changes, but the shift that I see in their sense of self is so incredible. So this is something that not only am I passionate about the clinical work, but also research and advocacy. And making sure that we are creating the space for these ongoing discussions is key. It is something that I look forward to every day. And yes, my colleagues would say that I am quite the energizer bunny when it comes to this work.

[A]

I also meant to ask, did you keep in touch with your friend from third grade?

[B]

You know, I actually, my family moved after fifth grade, so we did lose contact. But it's funny, we recently reconnected on Facebook and I'm hoping to have a conversation with her. So there's TBD on that. That is coming later. But yes, because of a move and natural kind of progressions during childhood, we did boot.

[A]

That's cool that you reconnected. I love it. One of the things I'm doing this year is I'm asking all my guests about a diabetes organization that has made a difference for you. I know you don't live with Type one and maybe it's where you work or. But anybody you want to give a shout out to could be the conference too.

[B]

Yeah. Well, I definitely think the Diabetes Mental Health Conference is one spot that is really trying to tackle access to information and education. And in that similar vein, I would say Blue Circle Health, I think they're doing some wonderful work on increasing access to support. And I think particularly for the young adults that I see, it is creating unique opportunities for that personalized care that is so often challenging to achieve during the transition time period, which is fraught with many other, you know, life natural changes. So I would highlight that as well as breakthrough T1D. I think they're always doing wonderful work and I think in our local community and local chapters, I love getting to be a part of those. And it creates a unique opportunity for the people you see in the offices and the healthcare system to be out in the wild with you. But really that sense of community outside of the medical space, I Love it.

[A]

Well, Dr. Taylor Stevens, thank you so much for joining me. It's been a pleasure to talk to you. Thank you so much.

[B]

Thank you so much for having me. It was an honor.

[A]

More information about the Diabetes Plus Mental Health Conference again that's coming up May 1st and 2nd. You can find out more in the show notes. We have that promo code, DMH connections to save 15% off the ticket price. I think attending a conference like that is so helpful because you realize that you are not alone. And the fears and the concerns that you have as a parent or as a person with Type one, you know, are so normal. And once you hear somebody else talking about the same thing, I think it makes it almost easier to try to, to figure out what works. Because I spent so much time in Benny's early days before I had a community wondering, like, why this wasn't working or what were you doing wrong. And it turns out that that was just type 1 diabetes. So a virtual conference like this is fantastic. You can make online connections and then sometimes if you're lucky, you can turn those online connections into real in person stuff. That takes a lot of work, but it's really worth it. All right, thank you to my editor, John Buchenis from Audio Editing Solutions. And thank you so much for listening. I'm Stacey Sims. I'll see you back here soon. Until then, be kind to yourself.

[B]

Diabetes Connections is a production of Stacey Sims Media. All rights reserved. All wrongs avenged. Did you hear the pod drop?

[A]

Did you know all the sounds used to make that song come from a site change with the Omnipod 5 automated insulin delivery system system. Pretty cool, huh? With Omnipod 5 pump site changes are simple. The pod lasts up to three days, 72 hours. And to change it, you just fill up the pod with insulin, place it on your body, tap a few buttons in the Omnipod 5 app, and you're ready to go. There's no tubing to prime like with traditional insulin pumps, and it's virtually pain free, so you never have to see or handle the insertion needle. Want to try Omnipod 5 for your yourself Request a free Omnipod 5 starter kit today by visiting omnipod.com diabetesconnections Terms and conditions apply. Eligibility may vary.