#1877 Agency and Anxiety Part 2
Therapist Erika Forsyth returns to explain the difference between autonomy and agency. Learn how small, consistent actions in your diabetes management compound over time to reduce anxiety and shame.
Key Takeaways
- Agency vs. Autonomy: Autonomy is the freedom to act without constraints, while agency is the ability to skillfully operate and affect outcomes within existing constraints (like a diabetes diagnosis).
- The Anxiety Response: When agency feels low—when you feel like your body is failing you regardless of your actions—anxiety spikes, often leading to either hyper-vigilance (over-correcting) or total avoidance.
- Building Agency Through Knowledge: Time and experience are the ultimate builders of agency. As you learn patterns and see how your actions positively influence outcomes, your anxiety naturally decreases.
- The Compound Effect of Effort: Much like folding a piece of paper 42 times to reach the moon, small, consistent, good decisions in diabetes management compound over time to create massive positive results.
- Shame Reduction: As your agency grows, you stop viewing out-of-range numbers as personal failures or indicators of your self-worth, and start viewing them simply as data and information to act upon.
Resources Mentioned
- Touched by Type 1: touchedbytype1.org
- Tandem Mobi System: tandemdiabetes.com/juicebox
- Eversense 365: eversensecgm.com/juicebox
- Juice Box Podcast Pro Tip Series: juiceboxpodcast.com
- Wrong Way Recording: wrongwayrecording.com
Introduction & Show Sponsors
Scott BennerHello, friends, and welcome back to another episode of the Juice Box podcast. Diabetes can make it feel like your body is just happening to you, and that's where a lot of the anxiety lives. But as your skills grow, something changes. You start to see that what you do actually moves the needle. This episode is about that shift from feeling out of control to knowing you can respond.
Scott BennerIf your loved one is newly diagnosed with type one diabetes and you're seeking a clear practical perspective, check out the Bold Beginnings series on the Juice Box podcast. It's hosted by myself and Jenny Smith, an experienced diabetes educator with over thirty five years of personal insight into type one. Our series cuts through the medical jargon and delivers straightforward answers to your most pressing questions. You'll gain insight from real patients and caregivers and find practical advice to help you confidently navigate life with type one. You can start your journey informed and empowered with the Juice Box Podcast.
Scott BennerThe bold beginning series and all of the collections in the Juice Box podcast are available in your audio app and at juiceboxpodcast.com in the menu. Nothing you hear on the Juice Box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan.
The episode you're about to listen to was sponsored by Touched by Type One. Go check them out right now on Facebook, Instagram, and, of course, at touchedbytype1.org. Check out that programs tab when you get to the website to see all the great things that they're doing for people living with type one diabetes. Touched bytype1.org.
The podcast is also sponsored today by the Tandem Mobi system, which is powered by Tandem's newest algorithm, Control IQ Plus technology. Tandem Mobi has a predictive algorithm that helps prevent highs and lows and is now available for ages two and up. Learn more and get started today at tandemdiabetes.com/juicebox.
Scott BennerToday's episode is also sponsored by the Eversense three sixty five. The Eversense three sixty five has exceptional accuracy over one year and is the most accurate CGM in the low range that you can get. Eversensecgm.com/juicebox.
Agency vs. Autonomy
Scott BennerErica, we are back doing agency and anxiety part two. Just a two part little quick series. Right?
Erika ForsythI think so. I think it might be just a two parter. Okay. But we'll see.
Scott BennerWhere where where do you wanna start? I wanna get you right back into your conversation. So
Erika ForsythOkay.
Scott BennerWhat do what do you wanna do?
Erika ForsythSo thank you. I would like for us to first kind of just review agency and the definition. And as I was thinking about our conversation from, the first episode, I wasn't sure if we actually defined a differentiated agency versus autonomy.
Scott BennerOkay.
Erika ForsythSo I thought we could do that first and then talk about the kind of interplay between agency and anxiety and how agency may amplify or buffer anxiety when living with diabetes.
Scott BennerLet's do it.
Erika ForsythSo okay. So first, you know, I know we were as we were trying to define agency in the prior episode, it was we realized it was it's difficult. You know, you kind of have a an a felt knowledge of what it means, basically, that you can affect and influence outcomes, and you have the power and the capacity to do so. You can affect change in your life, but it's within kind of constraints and limitations. And that is different from autonomy where you have the freedom to act according to your own rules, your own desires, and you aren't feeling or experiencing those external control or outer, you know, constraints.
Erika ForsythSo I like the kind of to think about agency is about how you operate within constraints, and autonomy is about where you operate in the absence of constraints.
Scott BennerOne example, I don't know
Erika Forsythif it's just perfect, is autonomy. If you're if you're playing a game, autonomy, like a board game, let's say Mhmm. You might have the power to change the rules of the game using your autonomy. But agency is the ability to skillfully win within the existing rules. So you have these kind of constraints and boundaries, and you're making choices that will affect an outcome that you are hoping for.
Erika ForsythBut autonomy is like, well, I don't like this these rules, and I have the independence and freedom to change them so then I can affect change or feel independent in my life.
Scott BennerYeah. I'm
Erika Forsythfollowing up. It's not it's not a perfect example.
Scott BennerNo. But I I'm following what you're saying. There's some situations you're in that you can change, effectuate, get out of, and there's some that you're in that are are concrete. They're not gonna change, but you can still exist within them when you use agency for, when you use autonomy for. Yes.
Scott BennerIs that right?
Erika ForsythYes. I think that's that's good general ex you know, reflection.
The Anxious Response: Avoidance vs. Hypervigilance
Scott BennerOkay.
Erika ForsythSo when we are thinking about getting diagnosed with diabetes, one of the first things you experience is the person who is diagnosed and and the caregiver and the family system as a whole is that loss of autonomy. Right? Because you feel like the the life you once knew, the freedom to, you know, intuitively eat whenever you want you know, all of the examples we can think of, that is immediately lost, and you feel out of control. So that that is autonomy. That's a loss of autonomy in that in the original diagnosis and probably also agency.
Erika ForsythBut loss of agency is experienced at a diagnosis or stages of change or probably anytime you feel like you're you've thought you can affect an outcome, and it is not what you expected. So when you, you know, you leave your your doctor's office or the hospital, you have your insulin to carb ratios, you have your your target number. But when you in the beginning and, again, it's stages of change or or stages of burnout. When you anticipate doing a or x, you don't always get y. Mhmm.
Erika ForsythRight? So you might get a, b, or c, and that might be as the honeymoon or growth hormones, etcetera. So the system and the procedures and the and the outcomes that you are expecting feel really unpredictable, and in anxiety will increase because the consequences feel immediate.
Speaker 3Mhmm.
Erika ForsythSo we're gonna get into kind of now this interplay between when agency is low, anxiety is high and vice versa. But I'll I'll pause there.
Scott BennerOkay. When agency is low, anxiety is high. And when you think about it on the the scale of diabetes, you don't have any autonomy to change diabetes. Right? But you have some to change, what, your own actions?
Scott BennerOr maybe I should just let you move on before I ask my question.
Erika ForsythYes. So we'll get there how autonomy is kind of reintroduced.
Scott BennerThat's okay. I'm gonna wait and and and Okay. And get myself more fully formed before I talk.
Erika ForsythOkay.
Scott BennerGo ahead.
Erika ForsythSo in again, I I know I often say in the beginning, but we, you might feel this way at any point in your life's time with with diabetes or from the caregiver's perspective that your the outcomes feel externally driven, and you might experience this, you know, feeling that my body's unpredictable. Whatever I do, I I don't it doesn't happen the way I expect. And this kind of coincides or correlates to the messaging of the perceived body betrayal that we talked about in the body grief series. Right? That feeling of, like, my body failed me no matter what.
Erika ForsythIt's it's has totally abandoned me. Mhmm. And every fluctuation can be interpreted as failure or danger. Right? So that's when your your lid is flipped, like we talked about.
Erika ForsythYou are experiencing every single blood sugar decision. And as you're eating or navigating any of the variables, you might experience that that feeling of of failure or danger. And it actually might right? It might be dangerous. You might be high or low.
Erika ForsythOkay. So your nervous system is interpreting this as, you know, you're you're you're offline, and you're but you're leaning towards this vigilance and threat monitoring. So this is why when the agency is low, right, you're feeling like you cannot affect outcomes or influence outcomes. Anxiety is high. So as a result, you're this is when you might feel the anxious symptoms.
Scott BennerMhmm.
Erika ForsythAnd to try and regain a sense of control, what often occurs is kind of that hypervigilance. I'm gonna try and, you know, just stare at the numbers. I'm gonna finger prick 20 times, and I'm I'm gonna figure this out.
Scott BennerDoes that actually work, though?
Erika ForsythRight. No. No. Yeah. But but it feels like you're doing something.
Scott BennerRight.
Erika ForsythRight? So it's your body's response to saying, I am feeling so dysregulated no matter what I do isn't working. Mhmm. You you kind of often will do two things. Right?
Erika ForsythYou you might lean into the hypervigilance and kind of over control or the avoidance, like, kind of hands in the air. No matter what I do, it is not working.
Speaker 3Mhmm.
Erika ForsythAnd I kind of helpless.
Speaker 3Yeah. Right?
Scott BennerBoth of those decisions, oddly enough, kinda lead to the same place. You you know? Because you the hypervigilance usually usually I mean, some people figure it out, but some but a lot of people end up in a situation where they're staring at it so long and so hard and they're so exhausted, can't make any sense of it anyway. They're still having the outcomes they don't want. And the people who let it go maybe experience a slightly higher a one c or a little more variability, but they don't end up on you know, you can't wish yourself into success either, which is like, I'll throw it up to God and let's see what happens next because what's gonna happen next is your blood sugar is gonna get high.
Scott BennerOkay. Alright. I got that. I'm
Speaker 3I'm ready.
Sponsorship Break
Scott BennerWhen you think of a CGM and all the good that it brings in your life, is the first thing you think about, I love that I have to change it all the time. I love the warm up period every time I have to change it. I love that when I bump into a doorframe, sometimes it gets ripped off. I love that the adhesive kinda gets mushy sometimes when I sweat and falls off. No.
Scott BennerThese are not the things that you love about a CGM. Today's episode of the Juice Box podcast is sponsored by the Eversense three sixty five, the only CGM that you only have to put on once a year and the only CGM that won't give you any of those problems. The Eversense three sixty five is the only one year CGM designed to minimize device frustration. It has exceptional accuracy for one year with almost no false alarms from compression lows while you're sleeping. You can manage your diabetes instead of your CGM with the Eversense three sixty five.
Scott BennerLearn more and get started today at eversincecgm.com/juicebox. One year, one CGM.
Scott BennerLet's talk about the Tandem Mobi insulin pump from today's sponsor, Tandem Diabetes Care. Their newest algorithm, Control IQ Plus technology and the new Tandem Mobi pump offer you unique opportunities to have better control. It's the only system with auto bolus that helps with missed meals and preventing hyperglycemia, the only system with a dedicated sleep setting, and the only system with off or on body wear options.
Scott BennerTandem Mobi gives you more discretion, freedom, and options for how to manage your diabetes. This is their best algorithm ever, and they'd like you to check it out at tandemdiabetes.com/juicebox. When you get to my link, you're going to see integrations with Dexcom sensors and a ton of other information that's gonna help you learn about Tandem's tiny pump that's big on control. Tandemdiabetes.com/juicebox. The Tandem Mobi system is available for people ages two and up who want an automated delivery system to help them sleep better, wake up in range, and address high blood sugars with auto bolus.
Building Agency Over Time
Erika ForsythSo that is how sometimes it kind of the the low agency might amplify the failing experience of anxiety, and then the result is that either avoidance or hypervigilance. These are obviously stereotypes, but these are these are the trends, right, that we might experience. So how how does agency increase with diabetes? So over time, you you know, as skills and knowledge and understanding develop, we expect that that belief in oneself and that feeling that I can affect change, the agency will grow Mhmm. Within you.
Erika ForsythRight? As you start to recognize patterns, you learn maybe your insulin to carb ratios better. You're you're more aware of how the variables might impact your blood glucose levels, and that's where agency can become a protective factor. Even within uncertainty, you have an increased understanding in in kind of how you can predict outcomes. You can see how your change your actions change outcomes even though it might not be perfect all the time.
Erika ForsythMhmm. Because your anxiety or the anxious thoughts or feelings are starting to be reduced even though it's not you know, you might get you're not gonna nail it every time.
Scott BennerRight.
Erika ForsythRight? Okay. So your behavior becomes more intentional with that. So you are more mindful with the increased time and knowledge. Right?
Erika ForsythI know we always talk about, like, diabetes is a time. It's a chronic illness that you do learn and grow and benefit from time. Mhmm. And knowledge, right, and experience. So this is actually just wanted to share a quick story.
Erika ForsythI was recently at a a meetup for for grown ups living with t one d, and we were playing a game. And one of the questions was, what's a sign or symptom that you have been living with diabetes for a long time? And there were some some funny ones, you know, like, you have you know, your your storage closet is packed full of all of your stuff. There might be some hard what hard answers, like, might be living with some complications. But the one person who yelled out the word knowledge
Speaker 3Mhmm.
Erika ForsythEveryone just kind of took this we all kind of took a big breath and and then laughed. Like, it is so true that it does come. Time and experience does yield knowledge, but you don't have to wait Yeah. For years and years and years.
Scott BennerIf you just make your way through almost blindly, you will amass that knowledge over time. Like, you just end up having so many experiences. It's almost impossible to ignore, you know, what you're learning at some point. But it's nice if somebody steps in and gives you more and gets you sped up because that loss of time eventually weighs on people. And especially if there's complications, then you start thinking about like, well, now I know it, but if I would've known it before, then this might not happen and that can come with its own set of consequences for you psychologically afterwards, after that all kinda comes together.
Scott BennerBut that's interesting that in that setting that everybody kind of, like, wholly agreed. Like, I have learned a lot about this over time. Yeah.
Erika ForsythMhmm. Mhmm.
Scott BennerIt's a shame it can't be sped up without the time going past. I don't know. Maybe it can be.
Erika ForsythAnd and and what is time? Is it six months? Is it Yeah. Six years? Is it you know?
Scott BennerIt's different for everybody. That's what I've learned after talking to people. Is that some people jump in, some people are handed tools and ignore them for years or don't understand them for years. Then they hear something or have an experience that makes the whole thing crystallize when they go, oh, I got it now. And it just starts to work in a different way.
Scott BennerAnd some people I've seen I've seen some people jump in, through bold beginnings, pro tips, six months later, send me a five and a half a one c and go, I understand it. And I'm like, awesome. Like, that's great. And everywhere in between. So
Erika ForsythRight. And then and what was that that moment for that person that they then were able to digest the education? Were they not in a stage of shock, you know, and and dismissal?
Scott BennerRight.
Erika ForsythWere they ready to hear it? Like, we don't I think that that is the the human element. Right? Like, at what point does the knowledge help?
Scott BennerMhmm.
Scott BennerI ask everybody who gets to that point, can you point to what got you there? What did you hear that made sense? And no one ever knows. They they're just always like, I don't know.
Scott BennerJust one day, it all made sense to me. Everybody says the same. Every once in a while, somebody will say, well, I listened to something or I saw something or someone said something to me and it made, like, something click for me. But overall, it's more about like it the I feel like their answer is I just lived in it long enough that I understood it finally. Like, that's what I feel like their answer really means is that I don't know if you were baking a cake and some people have to mix the cake for a minute, some people have to mix the cake for an hour and I don't know.
Scott BennerThe cake was just done one day and I figured it out. It's really interesting that the human part of it is is pretty fascinating, especially when you look at all this and you see how you can be held back by something that's sort of outside it feels like it's outside of your control. You can be helped by something that might also be outside of your control. You know, you hear people are like, well, if some people handle situations better than others. And for my ten years of asking people, I can't figure out the difference between one and the other.
Scott BennerYou know? That's interesting.
Erika ForsythIt's really something. So I and I'm as you're sharing this, I'm trying to think about, you know, that Free. Moment for me. Yeah. Yeah.
Erika ForsythOf when did I want to understand? When did I feel you know, experience that agency?
Scott BennerMhmm.
Erika ForsythAnd it is almost an undef like, this nebulous experience that occurs.
Scott BennerErica, hold your thought for minute. Arden?
Speaker 3Are you recording?
Scott BennerI'm recording with Erica. What what's up?
Speaker 3No. I was just gonna call you and tell you, guess what? Me and my class just spent the last forty five minutes of our class doing.
Scott BennerWhat did you spend the last forty five minutes doing?
Speaker 3Convincing our professor that it's actually impossible to write five five okay. Five five paragraph essays in our final exam period.
Scott BennerShe wants you to write five five paragraph essays during the exam period?
Speaker 3We're like, that's impossible. We can't do that. And she was like, why not? And this kid is like, well, half of writing an essay is like finding all the materials and figuring out how you're gonna write it. He's like, you want me to three times in my exam period?
Speaker 3He's like, diet he's like, I could maybe do, like, two. And she was like, this isn't making sense to me. And then I was like, I was like, what if you made it, like, two and then do, like, multiple choice questions or something? And she was like, I'm like, oh my god. She's like, I'll reach out to you guys and tell you what we're gonna do.
Speaker 3How about you guys will start at five essays?
Scott BennerI don't know. How long is the exam how long is the exam period? How long is the exam period?
Speaker 3Like, two
Scott Bennerand a
Speaker 3half hours maybe.
Scott BennerI don't know. I mean, that seems like a lot of writing.
Speaker 3I can't write five essays in a day. I was like, is she fucking serious? Anyways Right. I don't know. I I spoke up.
Speaker 3I was like, yeah. I I can't do that. So
Scott BennerWell, I'm interested to see what what comes from the conversation. Alright. I'm Yeah. I'm gonna go. Thank you for sharing this with me.
Scott BennerI'll see you in a bit. Bye. Bye. Well, there's agency.
Erika ForsythAnd advocacy.
Scott BennerYeah. A little bit of autonomy. She's like she's like, maybe I can change my situation. I can't do that. I
Erika ForsythYes. Actually, that's all three.
Scott BennerYeah. Yeah. She was like she's like, I don't think I can do that. I'm gonna speak up and also, no. I wonder they'll probably
Erika Forsythbe sound challenging.
Scott BennerYeah. I mean, five different five paragraph essays in two and a half hours. I don't know. I'd have to think about it. I haven't written that much in a while.
Scott BennerI don't think it would be good. I might be able to hammer out the first pass of it. Yeah. Yeah. Yeah.
Scott BennerI could
Erika ForsythAnd how many words are we talking and pages per essay?
Scott BennerI have to tell you though, I know this is off the track and we'll and make sure you have your finger on where we're at. But
Speaker 3Okay.
Scott BennerIt's just like we're talking to doctors. When they ask you something and you go, no. And they go, okay. Like, if the teacher really knew something, then she would have said, nope. It's five essays, five paragraphs each in two and a half hours.
Scott BennerThis is the requirement. Do it. But she doesn't even know if that's right. Like, does somebody brought it up to her and she went, oh, maybe it's not easy to do. Like, maybe it's not doable.
Scott BennerAnd I I don't know. I just I always feel like that when doctors say something to you and then you go, well, I can't. And they go, okay. I'm like, well, wait. Was it important or was it not important?
Scott BennerNothing. You know? Anyway, I'm sorry. Anyway, that was hard in everybody. She's almost done with her psychology degree, which apparently she's using on that teacher right now.
Erika ForsythWell, yeah, I I also be curious. Yeah. What's what's the standard? Has she always done that?
Scott BennerIt's it's all over the place.
Speaker 3A lot.
Scott BennerYeah. No. It feels like a lot. Anyway, I'm sorry. Where were we?
Regulating Anxiety & Removing Shame
Erika ForsythOkay. So we are talking about as agency increases, anxiety can decrease. Right? So you're having this not only you're experiencing the physical kind of improvement in your management, you're also experiencing this psychological transition.
Scott BennerOkay.
Erika ForsythRight? So you're going from my body is happening to me. My body failed me. I can no matter what I do, I cannot land in range, you know, whatever it may be.
Scott BennerMhmm.
Erika ForsythSo you're having that that low agency, high anxiety, and also high grief, right, with that, which can transition to I'm interacting with my body through skillful action. So you're having active agency and regulated anxiety. And I think it's important that even if you are living in a space of high agency and confidence in your management, it doesn't mean that you aren't going to experience any anxiety. You're gonna have that lived experience. And I know we we know that.
Erika ForsythI just want think it's important to
Scott BennerTo say it.
Erika ForsythTo highlight that. Yes. And so it changes the quality. Right? So anxiety becomes more informational.
Erika ForsythMhmm. And maybe anxiety isn't even the right word there.
Scott BennerThe fear?
Erika ForsythYou be you the the yeah. The fear Mhmm. The lived ex the feeling of being out of control, which is also anxiety. Mhmm. So maybe it is.
Erika ForsythSo it becomes more informational rather than this overwhelming experience where you feel so dysregulated in all areas of your life.
Scott BennerOkay.
Erika ForsythSo yeah. Do you want me to keep going
Scott Benneror pause? Yeah. No. There's nothing to pause for because I'm I'm listening. I just you know, I told you before we recorded, I just recorded today with somebody who I realized I mean, you actually helped me realize when I was talking to him.
Scott BennerI was talking to him about anxiety, agency, autonomy, and I didn't realize I was. I wasn't using those words when I was speaking to him about it, about finding a way to just do better for himself because he's, you know, he's sure you guys will hear it on the podcast at some point. But as you're talking, I you're saying came out in that conversation I had with him Mhmm. Where he talked about, you know, he I guess he doesn't feel like he has agency. So when diabetes needs something from him, he he has that feeling of, like, I don't wanna comply with being told what to do by diabetes.
Scott BennerAnd then it puts him into a situation where he's now being told what to do, but it's so dire he actually has to do it now. And that when he looks back on it and realizes that his actions previously led to what's going on now, he feels bad about it. It's it's exactly what you're explaining here. So I can't wait to find out what the answer is because I told him to put his head down and keep going. So, and I'm and and that, you know, life's not fair.
Scott BennerYou know, you've gotta slowly build on experiences, make little changes that give you tiny bits of confidence. It'll grow after a while. I at one point, said to him, I was like, you know that thing they tell you if you fold a piece of paper in half and keep folding it in half, eventually, it reaches from the Earth to the moon. Do you know that mathematical thing?
Erika ForsythMaybe it's buried back there. Yeah.
Scott BennerYeah. Actually, explain folded paper to moon. I don't know it well enough to, like, explain it. I just know that there's this idea that if you take one sheet of paper, fold it in half, fold it in half again, and continue to do that, eventually, the distance that it would create is is pretty amazing. And I said, I think about that that way with, you know, effort and, you know, experiences.
Scott BennerLike, try a thing and, you know, continue to try and continue to try. You'd be surprised at how just like saving money, you know, you put a thousand dollars away and wake up in thirty years and it's six thousand dollars. Or, you know, like that's not a thing, you know, that you really expect the the folding over. Here it is. Hold on a second.
Scott BennerImagine you have a standard piece of paper that's 1.1 millimeters thick. Every time you fold the paper in half perfectly, its thickness doubles. So you fold it once, it's point two. Twice, it's point four. Three times, it's point eight.
Scott Benner10 folds makes 10 centimeters. 42 folds of that paper is 439,800 kilometers. Yeah. I just think
Erika ForsythI I can't even
Scott BennerI I right. You can't, but I think that's the point is that Mhmm. It's the same with effort, and it's the same with sticking up for yourself or trying to change your situation. Like, you're not gonna notice it when you do it. But if you just keep doing it, and eventually, there you go.
Scott Benner42 folds of a piece of paper. The moon is on average about 384,000 kilometers away from the earth, so it would take exactly 42 folds of a standard piece of paper to bridge the gap between the earth and the moon. And I think you could do that in your own life too, you know? So anyway, that's what I ended up telling him. Hopefully, it'll be helpful to him.
Scott BennerI also told him to get therapist because of, you know, because of the human parts of it here that, like, every time in the conversation, you could see how he felt got into his way or how he thought got into his way. Like, his mindset was a little skewed or he was coming at it from a wrong perspective to help himself. But, anyway, I I you know, please go on. I'm I'm I really do like this conversation.
Erika ForsythSo I think that just even that example of, you know, the, I'm not gonna I don't want diabetes to tell me what to do or diabetes, isn't gonna get in my way. I think there is that the wrestling of the autonomy. Mhmm. Right? Like, you you have now these external constraints that nobody wanted.
Erika ForsythRight? So you're wrestling with that sense of grief and loss. And then if diabetes isn't gonna get my way, we hear, like, well, that can be, you know, that can be a positive mindset around I'm gonna keep doing the things I wanna do in life. I'm gonna achieve my goals, my dreams, and I'm gonna ensure that I know how as best I can to manage as well as I can within range values, etcetera, to reach my dreams.
Scott BennerYeah.
Erika ForsythRight? Then conversely, I don't want diabetes is not gonna get in the way because no one's gonna tell me what to do in that wrestling with that autonomy piece. It is still getting in the way. Right? Because you Yeah.
Erika ForsythLike, it's still like, if you because I'm not gonna it's not gonna tell me what to do. I'm not gonna pre bolus. I'm gonna just do what I want in terms of what I eat and how I eat and when I do it. It's still diabetes is gonna get in the way.
Scott BennerAsk people all the time when they tell me, I told them diabetes isn't gonna stop us, or I don't let diabetes stop us. I said, you have to tell me what that means because it either means that you've taken control of it, and it's not stopping you because it's not having those impacts, or you've thrown it up in the air and said, I'm not letting diabetes stop me. I'm also not paying attention to it. So I'm just gonna keep going no matter what bad thing is happening to me. And I said, that's, you know, not a sustainable model because one day the health implications will come for you.
Scott BennerI I don't know. Like, when I was talking to this this guy, he's lovely. He wouldn't mind if we said his name even, but you guys will hear it in his episode. I said to him, and if you're not gonna do this, like, I because he knows what to do. Right?
Scott BennerAnd he's not doing it. And I said, and if you're not going to do it, then don't do it gleefully. But I said, don't live fifty miserable years. Live fifty awesome years and see a therapist and figure out why it is you don't wanna live eighty awesome years. I was like, but, like I mean, if you're going to I said, own your decision.
Scott BennerReally think about it. And if this is how you wanna live, then live this way. But don't beat yourself up about it while you're doing. Like, you're literally not moving. You're both not having success and you're not moving forward.
Scott BennerYou're sitting perfectly still bemoaning what's happening to you. I'm like, you're gonna do that. It's already been four years. It's gonna be soon it'll be ten. I I actually said to him, was like, if you wanna do heroin, do it.
Scott BennerLike like, just do it. Go shoot it up and nod off and enjoy yourself. I'm like, I don't think you should. But if that's what you're gonna do, why are you beating yourself up about it while you're doing it? Just go for it.
Scott BennerWhatever you're gonna do. I said, I hope you don't do it. Like I said, I hope you take good care of yourself. I was like, but right now, I'm just talking to a person who's just circling the same drain over and over and again. And they have the feeling that they're circling the drain, but they never go down the drain.
Scott BennerI'm like, you're just sitting there. It's it's sad. I mean, obviously, that's not what I want for people and I wouldn't you know, if you're asking me my advice, it's not do heroin and what the hell. Mhmm. If you're doing that already, like, I mean, it just seemed doubly sad to, like, like, to beat yourself up about it at the same time.
Scott BennerYou you know? Like, just listen.
Erika ForsythShame is a powerful
Scott BennerYeah. Yeah. And be my dad. Just smoke the cigarettes and die. He he wasn't gonna stop, so just go for it.
Scott BennerYou know? Like, life is too short to spend the whole time in a flux. Mhmm. You know?
Speaker 3I I
Scott Bennerdon't know. Like, there's something about that, you know, when you look up at some people who live a a live fast, die young lifestyle and they just have made a decision that that's what it's gonna be. Those are all the people in all the movies that were like, I wish I could do that. You don't wish you could have died younger. You wish you had that carefree attitude that they have.
Scott BennerThere's gotta be a way to have a carefree attitude and not do heroin is all I'm saying. This does not seem like a heavy lift. Okay?
Erika ForsythIs that that that's the answer.
Scott BennerThe answer is don't do heroin and have a carefree attitude. Goddamn it. Get out there and start working. Well, listen. In this last little bit of your notes, the answer to this problem must exist.
Erika ForsythOkay. Well, I don't I don't know if there's an answer. I think the the one other point I wanted to make around as we're talking about mindset
Speaker 3Mhmm.
Erika ForsythAnd and shame. Right? With with higher agency, the imperfect data brings less shame. And that that is a journey. Right?
Erika ForsythBut we hear often in the messaging that your your blood glucose value, your a one c, your time and range, those are just numbers. Don't let them define you. Don't let them reflect your worthiness or your value or your identity, and that is 100% true. But part of that, getting to that mindset that, okay, this this blood glucose value does not tell me that I'm a bad diabetic. It does not tell me that I'm a bad parent managing my child's diabetes.
Erika ForsythBut we so often equate that, right, to our how we're doing as as a person with diabetes or a caregiver.
Speaker 3Mhmm.
Erika ForsythSo but to shift to it's just a number. It's giving it's information. It doesn't need to be overwhelming. Part of that is a mindset shift and being intentional with how you assign value to the number, but it also is stemming from the higher levels of agency that you experienced over time. So right in the in the beginning, when you're learning the and you don't have high levels of agency, it makes sense that you also are experiencing high levels of shame and and and unworthiness and feeling out of control, and so you're experiencing high anxiety and high shame.
Erika ForsythSo with with the evolution and increase in levels of agency, it's like those levers. Right? Like, you're you're increasing with with the knowledge and experience and experiencing more predictable outcomes when you don't get that outcome that you have expected, this the shame around that number is is decreased because you realize, okay. I know that I oops. I forgot to do that, or I shouldn't have done this, or, you know, it was just one of those days.
Erika ForsythIt's okay. You know? So I think just highlighting too that it's not only about reducing the anxiety and increasing the agency, but also that shame narrative shifts as well.
Scott BennerI I it's another thing I said to him. I was like, look. You you know, because at the end, I was like, well, let's make some sort of a plan for you. He's like, let me get out a piece of paper. I was like, write down all the things you think you should do.
Scott BennerAnd after talking for an hour, goes, do the thing. And I was like, yeah. That's pretty much all of it, but let's break it down a little more. And and so we're breaking it down, and I said, then listen. Do two things for me.
Scott BennerDon't do that thing where it's like, if I missed a day, so I'm gonna restart on Monday. I was like, that's a human failing that we do. Like, I'm gonna start my diet on July January 2, or I'm gonna do, like, that stuff. I was like, that's bull. I was like, just if you mess it up on Tuesday, throw it into who cares?
Scott BennerAnd then just keep going, and don't wait till Wednesday. If you figure out at noon on Tuesday, didn't do something right, just go back to what you were doing. Like, it's a habit. Like, do the do the habit. Right?
Scott BennerBut don't feel bad about it. You're still doing way better than you were doing the week before, so be happy about that. Like, stop seeing things as as an error all the time. It's an experience you had. You had an experience.
Scott BennerBuild on it. Like, I have such a good idea. I'm I'm I've made a note off to myself. I don't wanna forget. But before you and I go, I wanna talk to you about it.
Scott BennerBut, like, anyway, I'm sorry. Like, let let's go let's keep going. I'm all over
Speaker 3the place.
Erika ForsythYou had a good idea.
Scott BennerI had a good idea finally.
Erika ForsythOkay. So lastly, when when agency becomes dysregulated, you there's this nonlinear dynamic that occurs. Right? So if you then are feeling and this is kind of an agency and anxiety are both at a high level because if agency becomes overinflated or rigid, like, must control the blood sugars. I must know that when I do this at a, then b will happen.
Erika ForsythAnd that hyperfixation, the hypervigilance around control Mhmm. I you know, paradoxically, anxiety will go up back again. And this we see you know, this again happens in at all stages of of of diagnosis, particularly in the beginning.
Scott BennerYeah. And it it it listen. And it shows why like, I lived with a woman who is, you know, you would have colloquially called her type a a couple of, you know, twenty years ago, but she's got anxiety. And it makes her incredibly good at what she does, but I watch her do this. Like, she thinks that the the mastery of something will make the anxiety go away.
Scott BennerI'm like, the anxiety is what's making you master it. I was like, you're you got this backwards. You you know, like, she's always telling me, like, when I get this done, it'll feel better. And I was like, you that is not gonna happen. And and in this, like, you know, in this small example, the being hypervigilant about the data, emotionally reactive, self criticism, shame, all of that stuff, that's what I see from people.
Scott BennerWhen they double down on, like, I'm gonna get this. You don't understand, Scott. I'm the one who fixes this stuff. I'm like, you're not. Just step back, chill out, have the experiences, let time pass, and one day, you'll just wake up and go, oh, I get it now.
Scott BennerAnd then that'll be it, and you will have saved all of that time in the middle flogging yourself. It's I can't fix this for everybody. Just chill out.
Erika ForsythYes. As as they yes. As we all listen and say, okay. Let's just we'll just do that.
Scott BennerJust chill out, I guess, Scott. No. But, like, but there but the answer really is in there for everybody. So you just have to you really do just have to mellow out a little bit, have experiences, and and, you know, and let time pass until you have the tools and the and the education, things start making better sense, and you can kinda give I I do it now. Like, I mean, you can go back and listen to this.
Scott BennerI would have been upset about a higher blood sugar about something. I'm not like that anymore either.
Erika ForsythAnd and maybe a diagnosis when she was two Oh my god. There was probably a higher level of anxiety. Than that.
Scott BennerYeah. But but thanks to the good friendship of of the people who've come on the podcast and shared their stories and you and Jenny and all the people who come on here and help me, I've worked my way through it now. I'm not the same person today as I was back then. Luckily, I don't have the kind of personality that beat myself up too much in the middle. I did still, but not as badly as I I see some people suffer with.
Scott BennerAnd I can tell you if I could go back in time and change something, it would be not to beat myself up as much as it's gonna get there, but not to the level of throw it up to God. It's all gonna be okay. Like, no. You have to pay attention to it. You just can't let it make you nuts while you're doing it.
Scott BennerAnd I know I know all that's easier said than done, but but, nevertheless, I'm sorry.
Erika ForsythI was trying to come up with another example of one of the few experiences, and this which makes our communities so unique, under we understand each other. When you work so hard at something and the outcome doesn't match your effort or even your knowledge
Scott BennerYeah.
Erika ForsythAll the time, that is crazy making.
Speaker 3Mhmm.
Erika ForsythRight? And so it's understandable that
Speaker 3It's the intertwining go to
Scott BennerYeah. It's the intertwining of all of it. It's the it's it's every so this is what should I say my thing now or or no? Yeah. I'll say my thing now, and then you can you can do then we'll we'll finish up here.
Erika ForsythOkay. Okay.
Looking Ahead: A Mental Health "Pro Tip" Series
Scott BennerIt has occurred to me that over the years of you and I talking, we've had these, like, thoughtful conversations about, like, you know, specific ideas, agency and anxiety and that kind of thing today, but also body grief and, you know, and all the other things that we've yeah. And resilience and all the other things that we've talked about over the years, like, it it occurs to me, like, we've got the pathway to, like, a it's almost like a mental health pro tip series for diabetes. And maybe it's a map you follow and you because everybody gets to the same thing. It happens to everybody. Like, everything that happens happens to everybody.
Scott BennerWouldn't it be nice to know that when you get to this part, it feels like this, and then this is kind of the mental health idea you have to understand to traverse this part. And then go to the next part, by the way, now this thing's gonna happen and you're gonna feel this way and this will happen. Oh, by the way, if you're having trouble with all that, have I told you about the five four three two one method? I think you and I are building like a real compendium of ideas. The problem is for usability, like, for people who listen through them, that's good.
Scott BennerBut because you're explaining it to me and I'm trying to absorb it, it gets very conversational and not as pointed as it could be. And I'm wondering if we couldn't create, like, a flowchart that goes through the standard things that happen to a person along a diabetes diagnosis and lifetime, and then show them where that branches off into ideas that might help them as they get to those different stations. That was my idea. You think that works?
Erika ForsythWell, I'll have to think about that one, Scott, because it feels very
Scott BennerIt's a big idea.
Erika ForsythI think it's a very complex
Scott BennerIt is complex. But
Erika Forsython a theme of mental health and yeah.
Scott BennerAnd you might tell me I'm wrong, but, like, what I've been hearing during this two part episode is that forgive me if I'm if I I'm just if I sound pompous for half a second, but the ideas that are in here are already covered in the pro tip series. They're just covered very colloquially. You you do know what mean? And they're all in there. I'm not saying you can do them.
Scott BennerI'm saying that that they exist inside of that. Now I didn't know about any of the things that you and I have talked about over the last handful of years. I never I don't think I was ex exposed to any of it except through life experiences. I didn't have words to put to it or, you know, a textbook to point to. As I was talking about how I took care of Arden's diabetes and how I how it ended up working out for me, I think I've had all of these experiences going through.
Scott BennerHas it led me to a perfect mental health situation? Of course, it hasn't. But we're in a good place, and it at least gives you the framework to see that, like, a sure something else might happen to you, and maybe it's not gonna happen exactly like this. But is value in knowing that part because just like in the pro tip series, the pro tip series doesn't tell you exactly how to take care of diabetes in every situation that may come up, but it gives you enough foundational ideas that as you bang your way through this and have different experiences, you can rely on those foundational ideas to get through the new struggle. Is the framework of the pro tip series, end all be all?
Scott BennerOf course, it's not. Some of it you might need differently. Some of it might not help anything, but it gets you through. And I don't know that you and I haven't done the same thing. I know you don't think about it the same way I do, which is good because that's why you have your job and I have mine.
Scott BennerBut I think that there's a foundation through all of our conversations that that would shepherd somebody pretty well through this life, and at least give you a shot at it. And, anyway, go ahead and think about that. That's it. There's there's your next big idea.
Erika ForsythThe larger themes of, you know, grief and validation and normalizing one's experience, and then what we're doing today, you know, and and have done in other episodes is giving you know, naming what's happening is so powerful. And is that gonna reduce this experience? Is it gonna reduce the pain? No. But I think having an understanding of what's actually occurring and why, even though it's gonna be people are going to hear it and receive it through their own filter and lens because of their own history.
Scott BennerYeah. But it gives you a better shot. It's it's like it's even like parenting. Like, you don't parent somebody and explain every ounce of everything that's ever gonna happen to them. Right?
Scott BennerYou give them big ideas and touchstones and things to say, like, these are rules we follow. These are rules we bend. This is important to us. This isn't as much so. So that when they run into a terrible situation or something that they don't know what to do, they at least have these little, I don't know, these foundational ideas that they have about how to live, and they apply it to that situation.
Scott BennerAnd generally speaking, it gets you through that. Like, I know you think about it as, like maybe I'm inferring something, but, I think you think of it more as, like, if we're gonna say something to somebody, it should be perfect for them. And I get that. And that would be a good reason to go to therapy and talk to somebody who is speaking to you directly. But when you're just talking out into the air for people, I mean, there are a lot of things that happen over and over again to people who either have type one or love somebody with type one, and then they hit that spot, I feel shame.
Scott BennerRight? Then they just feel shame forever because they don't have any tools or even words for the shame a lot of the times. So if you let them know when this happened, you are feeling ashamed. And over here on the side or ideas about that that you can go into further and try to understand, maybe they'll actually go over there and understand it, and then come back and go, oh, and then find a way to give away some of that shame and move forward a little bit. Because I I just feels like that's what we're talking about is that people are walking a path, they fall into a pothole, some of them they jump out of and some of them they crawl out of and some of them they get stuck in.
Scott BennerI'm saying let's throw a rope ladder down there and a flashlight and see if they can figure out how to get out, you know, and maybe some of them will hold the flashlight from the last pothole and mix the next one. In a world where our parents don't teach us this stuff, and I'm not saying be mad at your parents. Our parents didn't teach them anything either. Like, in a world where we don't pass this kind of stuff on to to each other, you're left to just figure it out as you're fighting your way through life. And I'm just telling you most people just get stuck.
Scott BennerBut, my my experience with the podcast is is that when you give people good tools, a lot of them traverse their thing better. And then they're not stuck as long and then go get stuck in the next thing, Erica. And maybe get to the end where they grow some marigolds and drop dead. That's what I'm that's my plan. Hold on.
Scott BennerI'm gonna put some marigolds in the ground. I'm gonna watch them, and then I'm gonna give up. But on the way, I don't wanna be stuck so long Mhmm. Everywhere. I think about that with the diabetes the same way.
Scott BennerLike, it's heartbreaking to see somebody stuck for five, ten, fifteen years, but because they didn't know their basal was too low and they're not putting their insulin in enough time before they eat. That's not enough to you not not knowing that shouldn't ruin fifteen years of your life. And then it exasperates all this other stuff that that we're talking about here. Everything feels worse because that that's why when I that's why when I think about diabetes, I just think if you know how to get your settings right, you know how to time the insulin. It's not a perfect system, but it alleviates so much that it might give you enough conscious time to think about other things.
Scott BennerAnd I think the mental health stuff gets ignored by people greatly in a regular lifetime. People who are going through this kind of stuff have even less time and mental energy to put on something like that. So anyway, I mean, you can just go listen to all of them. I think you'd be okay. But, like, I don't know if there's not a way to, like, reframe it.
Scott BennerSomething to do in 2027 is what I'm saying.
Erika ForsythI I think it's an interesting idea. I think the the concept of, you know, how does one person change is a larger
Scott BennerCharlie, there's no answer to that part.
Erika ForsythRight. Yeah. Right? Like, are is someone going to change based on them listening to the pro tip series or a mental health pro tip series, so to speak? Mhmm.
Erika ForsythHolding that larger question of what is one's motivation for change, and what do they need to get there? Could could a series be beneficial? Yes. Is but true how does true change actually occur?
Scott BennerWell, that's between them and Jesus. You know? This is just a podcast. They can go figure the rest of that other I just think it's nice to throw tools on the ground and see if people pick them up and use them. That's all.
Scott BennerAnd it's not like they're tools that they're gonna cut their hand off with. It's, you know, this is what shame feels like. This is what agency is. You know? There's nobody right now listening whose parents told them about agency.
Scott BennerOkay? That just didn't happen. So and if you did, then your parents were therapists, and you have a whole different group of problems then.
Erika ForsythYeah. I wonder when actually the term agency became more common.
Scott BennerYeah. I did it pop into
Erika Forsyththe into the zeitgeist? Verdacular. Yeah. Zeitgeist. Yeah.
Scott BennerNo idea. So Finish up. I'm sorry.
Erika ForsythYes. No. That I think those are all good
Scott BennerThank you.
Erika ForsythWonderings. And I think to the end, this this two part series, the goal, you know, ultimately ending with, you know, having that balance, right, to not feeling like you are trying to control a a partially controllable system, right, that leads to the heightened anxiety and working really hard to try and control something that isn't fully controlled. And, you know, we don't even I don't like using that word either.
Scott BennerYeah.
Erika ForsythYou know, doing the best you can to manage as best you can. So go goal having enough agency to act with confidence and know how and trust within yourself and your body, but also holding that place that that's what we were talking about earlier, like, enough acceptance, enough grace to tolerate the unpredictable. Or when when things don't go, you know, as as you anticipated, how do you bounce back from that, and how can you be kind to yourself in that space while still holding the agency? And so this whole process that we've been describing, this you know, the rebuilding of agency, which really coincides with with your grief, and experience that restores that felt economy. So going back to what we were saying at the beginning, you do have have a true lived experience of loss of autonomy when you have this diagnosis within your family system.
Erika ForsythBut as you increase the agency and the the compassion, you have a restored felt autonomy.
Scott BennerSo this is what it is. Right? And then I have to accept that I can't change. This is our reality. And then I go out there and I make try to make good decisions.
Scott BennerI try to get good tools. I try to learn from my experiences, try not to beat myself up too much, and maybe in after the passage of time, you might pop up and feel like, okay. Like, I I got through that part now. But it's it is very interesting to break it down into, like, into those pieces that are valuable to have when you don't understand why you feel the way you feel or why you're thinking what you're thinking, you know, because it it all feels out of control. So it's it's nice to put words to it.
Scott BennerIt really is.
Erika ForsythYes.
Scott BennerOkay. Well, all of you use your autonomy to create some agency. I know those are it's it seems so confusing to me still. But, you know, go get it. You can do it.
Scott BennerBut by the way, and if you can't ask ask, like, one of these large language models because this thing is in front of me about the folded paper, and it just said to me, would you like a visualization to make it clearer? And I said, yes. And it just built this thing with a slider on it. Now I'm watching paper fold in half and get it's amazing.
Erika ForsythI I might I might need to go do that.
Scott BennerI watched your face when I said it. You're like, I know that's not right. Yeah. Well, it's right. You just keep making one good decision and then you make another one.
Scott BennerAnd before you know it, you got you got way more than you thought you were going to. So thank you. I appreciate this very much.
Erika ForsythYou're welcome. Thank you, Scott.
Closing & Sponsors
Scott BennerThe conversation you just heard was sponsored by Touched by Type One. Check them out please at touchedbytype1.org on Instagram and Facebook. You're gonna love them. I love them. They're helping so many people at touchedbytype1.org.
Scott BennerAre you tired of getting a rash from your CGM adhesive? Give the Eversense three sixty five a try. Eversensecgm.com/juicebox. Beautiful silicone that they use. It changes every day.
Scott BennerIt keeps it fresh. Not only that, you only have to change the sensor once a year. So, I mean, that's better. The podcast you just enjoyed was sponsored by Tandem Diabetes Care. Learn more about Tandem's newest automated insulin delivery system, Tandem Mobi with Control IQ plus technology at tandemdiabetes.com/juicebox.
Scott BennerThere are links in the show notes and links at juiceboxpodcast.com. Thank you so much for listening. I'll be back very soon with another episode of the juice box podcast. If you're not already subscribed or following the podcast in your favorite audio app, like Spotify or Apple podcasts, please do that now. Seriously, just to hit follow or subscribe will really help the show.
Scott BennerIf you go a little further in Apple Podcasts and set it up so that it downloads all new episodes, I'll be your best friend. And if you leave a five star review, oh, I'll probably send you a Christmas card. Would you like a Christmas card? If you're looking for community around type one diabetes, check out the Juice Box Podcast private Facebook group. Juice Box Podcast, type one diabetes.
Scott BennerBut everybody is welcome. Type one, type two, gestational, loved ones, it doesn't matter to me. If you're impacted by diabetes and you're looking for support, comfort, or community, check out Juice Box podcast, Type one Diabetes on Facebook. My diabetes pro tip series is about cutting through the clutter of diabetes management to give you the straightforward practical insights that truly make a difference. This series is all about mastering the fundamentals, whether it's the basics of insulin, dosing adjustments, or everyday management strategies that will empower you to take control.
Scott BennerI'm joined by Jenny Smith, who is a diabetes educator with over thirty five years of personal experience, and we break down complex concepts into simple, actionable tips. The diabetes pro tip series runs between episode one thousand and one thousand twenty five in your podcast player, or you can listen to it at juiceboxpodcast.com by going up into the menu. Have a podcast? Want it to sound fantastic? Wrong way recording.com.
