#1402 Caregiver Burnout Series: Part 6
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Isolation and stigma: Discovering new forms of support through online platforms
Raising a type 1 child while questioning her husband's diagnosis.
How quick action saved her son from severe diabetic complications.
The fight for clear answers when doctors won’t listen.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello friends and welcome back to another episode of The Juicebox Podcast.
Erica forsle is back with me again today for the sixth part of her caregiver burnout series. This is the last part for now, but we're gonna probably be adding to it again in the future. If you'd like to hire Erica, she's available at Erica. Forsyth.com, please don't forget that nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan or becoming bold with insulin. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code Juicebox at checkout. That's Juicebox at checkout to save 40% at cozy earth.com when you place your first order for ag one with my link, you'll get five free travel packs and a free year supply of vitamin D drink, ag one.com/juice box. If you're looking for community around type one diabetes, check out the Juicebox Podcast, private, Facebook group. Juice box podcast, type one diabetes. But 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 Juicebox Podcast. Type one diabetes on Facebook. This episode of The Juicebox Podcast is sponsored by Omnipod five, and you can learn more right now at my special link, omnipod.com/juicebox dot com, slash, Juicebox, Erica, we are going to finish up the caregiver burnout series today. I appreciate you doing this with me. That's right. Thank you. Of course, Episode Six, look at us making time we're doing well.
Erika Forsyth, MFT, LMFT 1:56
What's this one about? So this six burden focuses on the isolation and stigma that caregivers or even people with diabetes might experience. Navigating this might feel similar to how we discussed the previous episode as you navigate social experiences post diagnosis, but this one really the lens through which we're talking about this isolation and stigma can occur even in, you know, a phone call with the family member and very small, nuanced interactions with other people. Through the research that we've we've also seen in our own lives that because of the intensity of the stigma and the isolation that people experience, one of the benefits has been the online, the social, you know, online platforms that have certainly been growing in the last 510, years, significantly. So do you want to lead? We get, do you want to lead with the quote, the parent quote,
Scott Benner 2:54
I get to read the parent quote. This one's very talky, meaning, this is a direct quote, but it's obviously like conversational. So stick with me. I'm gonna do my best to put my to put their emotion into it a little bit. I don't think people truly understand how hard it is on us, on a physical, daily, everyday thing, people don't get it. And I think because we are coping and we're fine, people just think, Oh, it must be fine, but it's really hard, and they don't get that, whereas, if your child had cancer, people, they drop off meals, and people would be running around after you, thinking, Oh you poor thing. It's terrible. But they're like, Oh no, it's fine. I hear that from a lot of yes, you hear that, yeah, from a lot of it's the comparison that gets made a lot, which is, I think what they're really saying is people know cancer is bad, right? So they have that overly empathetic What can I do a response? But when people hear diabetes, they think, like, oh, you take a pill, or you just don't eat a cookie or something, and then it just, you know, like, Oh, it doesn't sound so bad. And then you don't get the same response, and then you get that's, that's isolation, right? Yes, yeah, okay,
Erika Forsyth, MFT, LMFT 4:07
isolation and not being understood, right? They say, you know, they don't understand that the physical, daily, everyday thing of managing your child's diabetes. Oftentimes, I even saw this, you know, a lot of comments yesterday online during our, you know, World Diabetes Day of, oh, at least you know you have a diagnosis like, now you know what's going on, which, yes, there is that kind of relief. Okay, my child's been sick for so long. Now we know there is that kind of immediate relief, but then, as we know, also immediately comes the shock of what it actually means. And that's where people who don't know diabetes misunderstand what it is that you are doing for your child on a moment to moment basis. Yeah, like,
Scott Benner 4:58
it's not like, great. You're right, at least. I know now, because you hear people come on the show all the time and talk about that, like, oh, it was horrible not knowing. And you're like, well, at least now I know, yeah, that gets rid of the part where it's horrible not knowing. It doesn't fix anything else. It just, you know, that part's over. You know,
Erika Forsyth, MFT, LMFT 5:14
yes. So this kind of, this constant, either the stigma around what the other person perceives diabetes to be. You might experience that right, like, you know, all the myths that you and Jenny have talked about, you know, the myths of diabetes. Did you give your kid too much sugar, etc, etc, you can feel stigmatized based on the other person's perception of what diabetes is and why your child has it, and then consequently misunderstood around what it means to keep your child alive or keep yourself alive. And I also hear, not only from, you know, family members who are maybe trying to do their best to support but don't quite understand it, are also, you know, when you're at pickup and you're trying to connect with another parent. They I know
Scott Benner 6:04
what you're gonna say is making me laugh. Okay, go Google. Say it. Say like, when they it's like when they complain about some banal thing in their life, like, it's the worst thing that ever happened. And you're like, I haven't slept in six months. Like, yes, I look at my kid and I constantly think, is it about the die? Is that the same as having to rush to soccer practice and make dinner doesn't feel like it, because we also play soccer and eat dinner like, Yeah, I know, trust me, I know, yeah, yes.
Erika Forsyth, MFT, LMFT 6:31
And so again, those you know, those other parents are maybe they're trying to relate, you know, and trying to empathize and try to share, like, you know, we've got hard things going on? Maybe they're just having a conversation, but obviously where you are in your journey and how you're hearing other people's issues, it's okay if it's hard, right, that if you're if you're running that line in your mind, like, I'm just trying to keep my kid alive here, so that's okay. But that also can contribute to that feeling of like, oh my gosh, no one really gets how hard this is, and that sense of isolation.
Scott Benner 7:05
It's the medical thing to the seriousness of it that stops you from being able to step back and go, Oh, they are trying to connect with me. They're just, they don't have all the details. Like in any other walk of your life, you'd be like, Oh, thank you. Like, you know, you'd feel it, and you'd be like, Oh, they're they're trying to empathize with me. But instead, it just feels like, What are you talking about? I think that when you have diabetes or your child, does your perspective on the world levels up, like whatever, that low level stuff that people worry about, you don't have time for that anymore. Like that just it's gone. Now I'm worrying about bigger, more immediate problems. I can't sit around and pontificate about whether or not, you know, Scary Spice is really in love with whatever. Like, you know what I mean, like, whatever, right? What is that? What is the modern version of that? I don't care if Kim and is arguing with her sisters, yes, yeah, my kid cries when I put a pump on them. So I I'm done with that part now your perspective, you just level up your perspective and that person, and I say too, thankfully that person doesn't have that. I'm glad that they don't feel the weight of what I feel. But it is hard not to be jealous about it. Sometimes I think that's probably the wrong Yes, today's episode of The Juicebox Podcast is sponsored by Omnipod, and before I tell you about Omnipod, the device. I'd like to tell you about Omnipod, the company. I approached Omnipod in 2015 and asked them to buy an ad on a podcast that I hadn't even begun to make yet because the podcast didn't have any listeners. All I could promise them was that I was going to try to help people living with type one diabetes, and that was enough for Omnipod. They bought their first ad, and I used that money to support myself while I was growing the Juicebox Podcast. You might even say that Omnipod is the firm foundation of the Juicebox Podcast, and it's actually the firm foundation of how my daughter manages her type one diabetes every day, omnipod.com/juicebox whether you want the Omnipod five or the Omnipod dash, using my link, let's Omnipod know what a good decision they made in 2015 and continue to make to this day. Omnipod is easy to use, easy to fill, easy to wear, and I know that because my daughter has been wearing one every day since she was four years old, and she will be 20 this year, there is not enough time in an ad for me to tell you everything that I know about Omnipod. But please take a look omnipod.com/juicebox I think Omnipod could be a good friend to you, just like it has been to my daughter and my family
Erika Forsyth, MFT, LMFT 9:46
to not be jealous, and then to as we talked about last episode, do you then make that decision to try and communicate how hard it is right to say, hey, it actually is really, really challenging. To do what I'm doing to keep my child alive, or keep their their sugars in range, and let them do all the things I want them to do, because then, if you don't, you feel like you're not recognized for the amount of work that you're doing. You're not doing it for like, oh, pat on the back you're doing you you want that. You just want people to know how hard it is, because it's really hard. And that's, as we've kind of talked about this issue many times before, that's kind of human nature you want to be seen and validated for the struggle, the pain that you're carrying, so that you feel supported and you don't feel as lonely in what you're carrying. Yeah. I
Scott Benner 10:34
mean, we're obviously social creatures, right? And when you don't have that feeling, you feel alienated, then, you know right away, like you're on the outside of the of the pack. I guess is the way to think about it. I need you to understand why I look tired. It's not because I'm weak. It's not because I can't do this the way you do it, like I'm a good parent too, you know, I've got more of a burden than you might also. The other thing is, you don't know what the other person's burden is either right, like, you know, they've got stuff going on as well. I don't know, the belonging, connecting, empathy, mirroring back and forth, it's all really important. But a lot of times you just lose your fuse for that conversation. And I think the explaining, some people could feel like, if I start explaining this, I'm just going to sound like I'm complaining. I also don't want to seem weak or like I'm complaining, either you think,
Erika Forsyth, MFT, LMFT 11:27
right, or a burden to other people, right? Like to and are they really going to get it? And why do I need to tell them this? You know, all those things can be running through your mind, and are they really going to get it anyway? So I might as well just not share it, right? And then you still land in a place of isolation. It
Scott Benner 11:45
kind of boils down to when someone says, How's your day, they probably don't care. So, you know, like somebody says to you, how's your day, and you start telling them they're going to be like, oh geez. Like, that's enough. I was being polite, you know. And and they really aren't wait. Diabetes is that thing you do need to live with it to understand it. I mean, in the same house, like, I think if you drug anybody into your house for a week and then let them back out, they'd go out and start complaining for you. They'd tell everybody you're not giving Erica hardly enough credit. Like she's married, she's got two kids, she's got a job, she does all this stuff. She still has diabetes. I saw her. I was in her house for a week. I saw her change her pump twice. I saw her change her CGM. I saw her get low. I saw her get dizzy. I saw her feel foggy, like she started yelling about nothing, like, you know, that's none of that was even her fault. It's crazy. I don't know how to count carbs. I couldn't figure it out I was there for a week. If you had an advocate on your side, like that, I
Erika Forsyth, MFT, LMFT 12:37
was just wow. I feel really validated. Thank you with that. Were you there last week? Eric
Scott Benner 12:41
and I have only ever been together, like, steadily, for like, an hour and a half, but I still, I know your pain well.
Erika Forsyth, MFT, LMFT 12:46
Actually, I Well, I'm debating whether I was going to share this story, but I feel like I'm just going to because, okay, when I had my high episode recently, for the first time in my I think that I can even remember, after 34 years, started vomiting due to a high due to kind of random, out of the blue, high blood sugars, everything was fine until I wasn't and I felt ill for many hours, baited. Do I go to the ER? Do I not? I ended up being able to ride it out at home. But it was probably, you know, five, six hours of really not feeling well the next day, the three people I reach out to are I email my doctor, I call Scott. Thank you very much for being there, of course, and my brother, who also has type one. And obviously my husband was there to support me. He doesn't have type one, but he watched it. I didn't need to tell him about it, and I didn't tell anybody else. I didn't tell any good friends, until days later, I told one good friend, and I went through this process of, do I need to tell people I was really ill, even not feeling well? The next day, I had to cancel some things. But it's that process if you want to reach out and feel connected with someone who understands. And I am grateful to you, Scott, for being there and helping me, you know, walk through possibly what happened. And then my brother, who understood and shared, and then he shared a story recently of having a random low that was pretty scary for him, and that was it. And then later I told a good friend of mine we were going to walk. And I found myself in this space of like, do I want to keep going and telling her why and how and how bad it was to kind of fully help her understand and for this close person, it was worth it to me to to go into depth. But I think, as we've talked about before, too, finding kind of those, those circles of people, when is it worthwhile to share the depth of how hard it is to care, give or live with it? I think
Scott Benner 14:38
I've seen in the past too, where people make that decision, like, here's a person I'm going to share this with, and then when that person's not understanding or receptive, it's heartbreaking. I've seen that happen to people a lot like, I am going to share this with a very good friend who ends up just treating it flippantly or it makes them uncomfortable to hear about your struggle, which is. Probably more we all can't go to therapy. Trust me, everyone would have to be a therapist for us all to be okay. We'd all need one. But if you open up to a close friend who you think is gonna have your back and understand this, and they, for some reason, don't, it's tough. I've seen friendships end over stuff like that, you know,
Erika Forsyth, MFT, LMFT 15:18
absolutely or even family members, right kind of pulling back and withdrawing as a result of your attempt to try and under explain what's what it's like, yeah, so we're kind of already transitioning into, you know, what can you do with this feeling of isolation, of stigma, of kind of not being totally you know, your your work is unrecognized and underestimated, and it can be it can be challenging, right? Like, based on what we've already talked about, you you don't want to be a burden to other people. Can you trust the other person? Are you naturally an extrovert? And you can confidently, and that's just kind of how you are. You're able to talk and process, and you can understand where your needs end and the other person needs begin and end. Are you introverted and feeling like, if you are sharing with other people? Does that take a lot of extra effort, energy, risk? Does it feel scary? So just wanting to to note that like, based on your past experience with being vulnerable and also your personality can contribute and exacerbate or help those feelings of isolation.
Scott Benner 16:25
What do you do if you have a personality that's not going to let you make that connection, but you still need that, right? You still need to do that for yourself. How do you find a person to do that with?
Erika Forsyth, MFT, LMFT 16:35
If going publicly or in person feels too scary, you know, I see more and more people posting anonymously right in the in the face, in the Juicebox Facebook group, which I think is fine if you feel, if it feels like, Oh, this feels too scary to share who I am or my identity, seek help. Keep it anonymous. Seek help in you know, whether, if you can't, go to therapy and other support groups, keep your screen off, right? Those are kind of more the virtual tools that I'm thinking about. If you lean more introverted, hopefully you have found, over time, those one or two safe people that you can trust when
Scott Benner 17:14
Facebook offered the anonymous posting in the private group, at first, you know, we were like, we can't let this happen, because it's going to open people up to getting scammed, right? Like, you know, if you can be anonymous, yeah, and scam somebody. And I was like, thought about it for a while, and then I came to the conclusion you did, which is, it's going to be extra work, and it's, it's, it's going to suck, like, it's, it's extra moderating work, but I think it's really important, because I kept imagining like there are some things I read and I think, why does this need to be anonymous? I can't, from my perspective, understand why this needs to be anonymous, but from their perspective, it does. So who cares that now this allows them to say it out loud. I think it's a great tool, because of that. Yes, it really if you can't walk into an in person meeting, or you can't or won't go to therapy, and you still need to say it. And the posts are, I mean, you see them too, right? Like, I just want to share this success that I had with somebody. Like, you're the only people who are going to appreciate how hard it was for us to get the standard deviation from 160 to 120 Yes, excuse me, I from, I don't know why I use that number. The the average blood sugar from 160 to 120 not standard deviation. And you can see, like they're just thrilled to tell somebody. I don't even think they care if anybody replies. They just want to be like, hey, world, look, figure this thing out, you know, or I'm struggling with this thing. Yeah, right. Just saying it helps,
Erika Forsyth, MFT, LMFT 18:37
saying it out loud, and not necessarily needing the response. And that takes courage, right to be vulnerable and knowing in the Facebook group it's already it's a safe place, because, you know, you can go do that, and that's what to be expected. It can feel really scary doing that, you know, quote, in real life. And so I wanted, I think it can feel just going back to like, you know, I feel like it's, it's a privilege, a that I could reach out to you when I was going through this DKA like experience. And my brother, who has type one, I have that, like, that's my little, you know, community. And not everybody has that.
Scott Benner 19:15
How was it helpful to you when we spoke? Because I felt like I was just listening and mirroring and, like, I brought up a couple of things, maybe. But like, it's not like you were like, Oh dear, oh my, I don't know what happened you had diabetes for like, what do you get diabetes? Like, 35 years
Erika Forsyth, MFT, LMFT 19:30
or 34 years? Yes, yeah. But this was a first time experience.
Scott Benner 19:35
You were I was listening to you process what had happened to you, and then what were you doing? You were looking for a sounding board that you could trust to see if you were thinking about things correctly. It was that what it needed to
Erika Forsyth, MFT, LMFT 19:47
be. Yes, I wanted to be, not only validated, validating that it was, it was a scary experience because I hadn't gone through it before, and I thankfully got that from you and my doctor and my brother. And then also wanted. To learn, how could I have done things differently, like have ketone strips on hand?
Scott Benner 20:06
Yeah? Erica owns a ketone meter now. Yeah,
Erika Forsyth, MFT, LMFT 20:10
yeah, to kind of learn and say, when this happened, maybe should I have gone this way or that way? So to be without having to explain to you or to my brother or my doctor what DK is like, or what you're experiencing, right? There's already that known entity. So to have that conversation with you, you have a lot of experience hearing people's stories and obviously, Arden's life journey. So to have that from an experienced there's no shame from any of the people that I connected with, also, like you should have done this. Why didn't you do this? Right? Yeah. And I think sometimes when you're scared, not really knowing what to do, and this happens a lot at the beginning of your journey with diabetes, but also 34 years in, something totally random happens, and it can feel scary,
Scott Benner 20:56
sure. And talking to me is nice, because I'm like a therapist that curses, yes, all the listening, none of the nice stuff that sometimes makes people uncomfortable.
Erika Forsyth, MFT, LMFT 21:08
Oh well, I think I mean just the validation and the support and the education. And I was really grateful for Scott for your time in that. And I think if you're listening to this and thinking, Well, I don't have a brother or a family member with type one, or I don't have Scott's direct number, or my endo isn't that supportive. I just want to validate that if you're here thinking or feeling that, and there might be somebody else out there, whether it's in the Facebook group or somebody a smaller group, but we're going to get to some of these different entities where you can maybe connect and find those two or three people to be in a text group with. Yeah,
Scott Benner 21:44
no, you just need somebody honestly there. I've seen people do it all different kinds of ways. Go over some of the things that you think are great, and I'll fill in things I've seen that maybe aren't on this list. Okay,
Erika Forsyth, MFT, LMFT 21:53
so, you know, as as we were saying, you know, to take that courageous step, to be vulnerable, like I didn't know, just go sorry. To go back to my brother. Example, I shared this moment with him, and then he was able to say, oh my gosh, me too. I just had this scary thing happen with the low and my wife, you know, when he shared his story and we talk diabetes, sometimes, not all the time. And so then I was able to listen to Him and hear him. And so there's just this beautiful moment when you are taking that courage and to be vulnerable in a space that feels safe, that often gives the other person the opportunity to be vulnerable as
Scott Benner 22:29
well, so be ready to offer what you're asking for in return. Possibly, yes, it's
Erika Forsyth, MFT, LMFT 22:35
beautiful. It's a beautiful exchange. Obviously, we know the Juicebox Facebook group. You guys know that it isn't a great resource and safe space, and as we talked about before, I think in the previous episode, I've seen people say, Hey, I live in such and such ZIP Code who wants to get together this Sunday at the park. So to kind of bring that larger group into a smaller personal perspective or group environment is really helpful, touched by type. One has monthly events. And they actually have, I don't know this is probably going to air after, but they have their dancing for diabetes show that, which is an amazing connection. And they also have monthly local events. You're just my type. They are mostly la based, but their whole mission, and I'm going to read this from her website, is to create a world where all individuals with type one diabetes feel empowered, supported and connected. She Laura is the director, creator of this group, and they have a lot of La meetups, but people from different caregivers and children and adults, most of their in person meetups are in the west coast. In LA, I think she had Seattle, she had New York, and then there's one coming up in London. I believe in January.
Scott Benner 23:56
Yep, I see it January 11. This should be out before then. Okay, yeah, I don't know the organization, but just, you're just my type.com,
Erika Forsyth, MFT, LMFT 24:06
yes, yes. Also on Instagram and probably Facebook, you're just my type, yeah.com, the next one is, let's see type one together. They have a diet buddy list, kind of similarly to what I see doing happening on the Facebook group. They're like a, they're trying to create, like a national registry list, I guess, if you will. And so you can go on, I think it's free, add your address and also learn to see who people you know, which families are near you. Those are some of the main ones that I know of. Before we go into this next point about the positive messaging. Were there other groups or things that you thought would be helpful
Scott Benner 24:49
if you or a loved one was just diagnosed with type one diabetes? And you're looking for some fresh perspective. The bold beginning series from the Juicebox Podcast is a terrific place. Art that series is with myself and Jenny Smith. Jenny is a CD CES, a registered dietitian and a type one for over 35 years, and in the bowl. Beginning series, Jenny and I are going to answer the questions that most people have after a type one diabetes diagnosis. The series begins at episode 698, in your podcast player. Or you can go to Juicebox podcast.com and click on bold beginnings in the menu. Well, I know people listening who have extensive WhatsApp texts set up with people with diabetes, which is awesome, right? Like hundreds and hundreds of people in a whatsapp chain, and they just talk about diabetes stuff. I think if that's the thing, you could get started with a handful of people, I think that would be a big idea. Big thing to do, too. I mean, you could do it with text messaging, obviously, if you wanted to, but just a place where you can drop in and say something that somebody might quickly get back to you about it. My private Facebook group is, it's so big as far as membership and posts go that you would think like, Oh, my post is gonna get lost. But it just usually doesn't happen. There's always somebody online, always somebody looking. And I think a text chain, if you can find the people, is another way to accomplish that. So WhatsApp text chains, beyond that, I have to tell you, I'm just so head down, doing the thing I'm doing. I don't know as much about other things that are going on as I probably should. I would
Erika Forsyth, MFT, LMFT 26:27
say, you know, even attending the local, you know, breakthrough, T, 1d summits, if you can connect with people there, or any of the conferences that you attend, finding and connecting with like a small group, right? So, and I know caregivers who have you know their diabetes caregiver text chain, just like your child might have their diabetes text chain, to have kind of that maybe more immediate result that you're you might be looking for a response, yeah? Also camps. Well,
Scott Benner 26:57
camps a great idea, if you can find a great diabetes camp that's a the people who have a good experience at diabetes camp have an awesome experience at diabetes camp. And I think there are some people who just aren't camp people. Or sometimes find a camp that's, you know, doesn't end up being great. But overwhelmingly, from what I hear from people, they they love their camp experience. I was going to say, though, if you go to a local event. Breakthrough two on the event, I would just not caution you, but remind you that you're probably going to meet a lot of newer diagnosed people. So, yeah, you're looking for a sage advice. Kind of person you're gonna you might be a lot of people standing around, going, I need help. You know, me too. What a nice way to meet people who are newly on the path you're on, because at least you're all kind of step by step, you know in sync with what's happening right now, and then you guys could grow and learn together too, which would be awesome, yes,
Erika Forsyth, MFT, LMFT 27:47
and that can often be part of your own healing journey, as you support maybe a more you know, newly diagnosed family, even if you're six months a year ahead of them. I often hear of parents saying, Wow, I didn't realize how much I already learned and knew, and we were just there. It feels like yesterday, but it was a year ago. And then you kind of have that ability to gain that perspective also, yeah.
Scott Benner 28:10
Now I say all the time, when I meet people who are really struggling in the beginning, I say, look, here's some fundamental tools that will help you. Here's some places to learn about more. And a year from now, you're going to look back and not recognize yourself from today probably sounds like bullshit when I'm saying it to them, but a year from now, you look back and you go, wow, I have learned so much. I didn't realize you don't even know what there is to learn. So you can't even imagine making such a leap, you know? But then when you do, if you are, yeah, it's funny. You put it the way you did, because I used to describe what I do. I'd say to people like, look you're looking for someone ahead of you who's already been down this dark path. Knows where all the holes are, all the sticks to trip over and can, like, just look back at you, shine a light and go, Oh, look out. Look out for that. Like, step over that. Go around this. You might want to do it this way, and you know, you'll get you get to that point two, so you could be that person, or somebody in a Facebook group, in an in person group, you could show up at an event and stand up and share your experience. I think there's an unending number of ways, once you're in the ecosystem with other people, everyone's story is really valuable at that point.
Erika Forsyth, MFT, LMFT 29:19
You know, yes, absolutely. And if you are able again, it might take some courage, some effort, some time. And I know when you're exhausted and feeling like, how could you do one more thing to then find and reach out to other people and create this group? There's so many benefits. And I just thought it would be interesting to share this recent study. They took groups of parents, and they were going to give one group of parents just positive messaging about parenting in general, and then the other group was going to get specific diabetes messaging about management. And encouragement. And so they looked at the and then when they got messages via text and Facebook Messenger, yeah, basically the parenting group that received the diabetes specific positive messaging reported higher levels of disease management, more satisfaction, and their perception of burden was also decreased that they reported. And so I just thought this was such, you know, I think it's so great to have all these the Facebook group, your Whatsapp group, your text group, your in person support group, to validate how hard it is, because that helps us decrease that isolation and stigma, right? Like, that's really important, but also to have these positive messages to send to one another randomly. Like, for example, one of them was, you know, being a parent of a child with type one diabetes. This is 24/7 365, job. Be kind to yourself. You're doing great, just randomly. You know, sharing that with your with your group, with your family, whatever is your support group, can be really effective. And you can also do this for your child. I
Scott Benner 31:10
have an example this from today, so I'm in an unfair advantage. A lot of people send me notes, so I usually have, no matter what we're talking about. I normally have an example from the last couple of days. So I will leave this person's name out of it, but let me read this and says, I've been a member of this group, and they're referring to the private Facebook group for the podcast for a little while, but I have never listened to the Juicebox Podcast. I've never been a podcast person, and usually my ADHD doesn't let me sit and listen to something for a long enough time, but I've seen so many people share about how the podcasts help them to take control of their diabetes, so I decided this week to give it a chance. This week, okay, my daughter is five, was diagnosed recently. Since then, it's been a constant roller coaster of highs and lows, and I felt like we couldn't get a grip on her blood sugar at all. And then this person includes two photos their Dexcom clarity reports. It says this first picture is an average data from the past two weeks time and range, 59% average glucose, 170, the second one is just over the last two days since I've been listening to the podcast and making changes that are suggested in the show. Time and range is now 93% and the average glucose is 116 so this person says, I don't want to do this. It's not for me. I have ADHD. I'm not good at podcasts. I don't list the pie as all the reasons in the world not to listen, right? But being in the group, and then this is my point, watching other people share what's been working for them. They finally go, all right, you know what? Let me try to overcome myself here and try this anyway, and look what happened for them. And that's why I'm always a proponent of people sharing what they're doing that's working. Because there are so many people who can't, for any number of reasons jump in. And I've heard the argument, you make people feel bad when you share how well you're doing. I make the argument you are a hope for that person when you're sharing. I think eventually somebody says, My God, they're doing that. I could do that too. I watch it pay off all the time. You don't want somebody to feel bad like you don't want somebody to look at a 116 average glucose and think, Oh, I can't get this accomplished, but at some point you got to do something. And so I say, go out there and share. Be kind about it. Be understanding about it. Don't be very Don't be like, Oh, look what I did. Like, it's not boasting. It's like, there's a way to do this. Like I did it. Like you could do it too. Anyway, I'm a big fan of that idea, and
Erika Forsyth, MFT, LMFT 33:41
she was sending, you know, a positive message to you, but also just and she chose to, I don't know if it was of those public or private, but like, what a great moment. It was private. No,
Scott Benner 33:54
no, no, this was a public post. Oh, okay, okay. I mean, in the private group of public posts, but I'm not giving anybody's details, right? But that person, like, I didn't read the end of it. The end of it is, if you have doubts about the podcast, erase them. It really does help. Like, so now this person realizes, Oh, I've been helped. I'm gonna go help somebody else. And, like, it's nice to tag me and say, Thank you, but that's not that post is, if you're like me and you think this is impossible. It's not. I just did it and I didn't know what I was doing two weeks ago. That's pretty awesome. You know what I mean? Like? So you can be that person listening right now. You can be that person for somebody else. And, you know, yes, that's all I that's how I think of it, instilling
Erika Forsyth, MFT, LMFT 34:36
hope, very important. And she, and she was being vulnerable, right? So she led with vulnerability, and that took courage, and she did something new, and then is instilling hope. And I think that the positive messaging, whether it's you know, publicly in that, in the Facebook group, or privately to your you know, your small debt. Diabetes text chain or to your child is so powerful. And again, I It's okay to validate how hard it is, that's half the work, right? But then to also acknowledge, wow, this is you guys. You're doing a great job, and we need that, you know? We need that encouragement and hope.
Scott Benner 35:17
I also think we do a very good job in the group of exactly know how to do it, because it's not like we're enforcing rules. It's just, I think I have set the tone for what the group is. And so when it was smaller, it took on that vibe of, you know how I am, which is to say, like, I want to be supportive. We're not here to like on people or tell them to do anything wrong. We're not going to tell them how to eat. We're not going to tell them how to manage their diabetes. We're just it's the supportive atmosphere the group built up around the idea of being a supportive atmosphere, and then as it got bigger, somehow it held on to that. I still don't know exactly how, but that doesn't mean that sometimes people don't come in in a bad mood, they don't come in at drunk o'clock, they don't come in when their blood sugar is real high or real low, or they don't see something that tears at their belief system so heartily that they have to they fire back a little bit, right? And people's communication skills can, you know, can vary, and so sometimes somebody's not trying to be harsh, but it feels harsh. Or someone, you know, there's a lot of different things that happen, but we try very hard to deal with those things in the light of day. We don't just, like, remove your like, it's not like, Oh, that was shitty, and just remove, like, you jump in and say, Hey, were you trying to say this? Because it feels like you're doing that. You know what I mean, like, and if you did, I think if you just take out the WoW at the beginning, like, you know, maybe you know, don't let people feel like you're judging them. This would be really valuable. And I'm going to tell you why this is important, and I say it out loud all the time, because there are more people here lurking around than are typing in this group. And those people are waiting for their moment to be that person from that note. They are waiting to jump and go like, I can do this. I'm going to do it. I'm going to do it. And I don't want them to spend six months getting to that point where they're like, Yes, I'm going to do it. And then on that day, they get on Facebook and see you waving your shit stick all over the place and decide to go back in their hidey hole for another six months because the world's a scary place, and I don't want to get involved today. That group is about helping people. That's the only goal it has. It's the only goal I have for it. It's the only goal I have. And if you're going to do something that's going to stop people from being helped, then you don't get to stay right, like so it, but you got to just be nice. I'm so scared they'll leave, and then they don't get to have the the, you know, the experience that this person just shared with you from a one? I mean, imagine a five year old kid. Can I be honest with you? This person posts this thing about that kid, and I read it and I go, Oh, that's cool. Podcast doing what I expected to do. Facebook group worked the right way. They were here long enough they saw it, they jumped in. They learned they're doing better. This is awesome. I'm not cold to it, I just see it a lot. So I was like, All right, great. It worked for them. And then I don't know what happened, I think it was sitting here editing, and it was still up in front of me, and I clicked on the person's picture, and it was a husband and a wife with like, two or three young kids, and I got so filled up, I thought, oh, that kid's gonna have a better life, you know, and they're going to have a better life, and they're going to sleep better, and they're going to be happier, and, you know? And then I just got, like my I got very So Erica. The reason I say this is my eyes filled up, and I want to ask you a question, because you're a professional. Are we at the end? Because I can ask
Erika Forsyth, MFT, LMFT 38:36
my question at the end, you have more. I always had one last point resource. Then I'm going to ask my question. Go ahead, I but we're interrupting your your beautiful, heartfelt story. I just wanted to point to which I think we've done before. Also, if it's feeling impossible to find your group or your people, you're reaching out. Obviously, therapy is a great way to do that, and the ADA mental health directory has a list of people who either have diabetes themselves, they have experience working with people with diabetes, and they also have had to take a behavioral, behavioral diabetes health class or a course to be approved to be in this directory. In the past, it has been you could only search by zip code, which has prevented you from finding people increasing the search?
Scott Benner 39:22
Yeah, close to you, but not in your zip code. Yeah, yes. Hopefully by
Erika Forsyth, MFT, LMFT 39:26
January, they will have a renewed filter just to search by state, so you hopefully will have more people to access to go through that list. Just wanted to share that my.diabetes.org/health-directory
Scott Benner 39:39
Yes, but ADA mental health directory if you're Googling Yes. Okay, so here's my question. My girls took me to that movie with the boy that used to be Spider Man and the girl from Black Widow. Again,
Erika Forsyth, MFT, LMFT 39:53
I will not be able to
Scott Benner 39:54
hold on a second. I'll figure it out for you. Hold on a second. Do you think if I typed in boy? I. Who used to be Spider Man and the Black Widow girl. Let's see if I come up with it. No, but in 2023 an eight year old boy in Bolivia was bitten by a black widow spider because he wanted to become spider man. Get out of here. Is that real? Oh, my God, Dear God, that's not okay. Look at this kid. Oh, that's so, yeah, yeah, little neck. That wasn't gonna work. Okay, hold on a second. Instead, I'm just gonna, I'm just gonna go to Rotten Tomatoes. Where is this move? I mean, they took me to this movie. It was just recently, yeah, yeah. It was like, Jesus. I don't know I I'm embarrassed. I saw this movie, like, a week and a half ago, and I don't remember the title of it, but I did. Why can't I remember the title of it? This is terrible. Also, why is it not where I want it to be? How come nothing works when I need it to work? Damn it.
Erika Forsyth, MFT, LMFT 40:49
It wasn't mo I can start listing Moana too.
Scott Benner 40:55
These are epic. This is a cancer movie, honey. You're gonna get to it just like that. Everybody had can't, like the people like cancer in the movie. What is this? What is it? What was it called? It had the word time in it. All right, I'm getting closer. My brain is coming back. I sound like I'm 1000 years old. Hold on a second. And it was Andrew Garfield.
Erika Forsyth, MFT, LMFT 41:13
I'm getting to it. Oh, we live in time. Is that what it's called? Well, I don't know. That's just a movie that has time in it.
Scott Benner 41:22
We live in time. Yes. Andrew Garfield and Florence Pugh, okay, I'm not gonna ruin the movie for you. Florence got cancer. Okay, you know you're like halfway through the movie, and it turns out Florence has the same kind of cancer that killed my mom. So it hit me pretty hard, right? But I bucked up. I held myself together. And I just want to say that I was in a theater. It was me and 350 ladies and like, five guys who were just too good of guys not to come. You know what I mean? Like so. But I just want I just
Erika Forsyth, MFT, LMFT 41:52
would have been okay. Had you cried, you would have been okay. No, no,
Scott Benner 41:55
wait. So a couple of times to the movie I get, like, filled up, where I will describe to you that my eyes were glassy, but water did not go down my face. So when the movie ended, by the way, this is what happened when I saw the person's picture their family. This is why this came up. So when the movie ended, my lovely daughter, my wife, who just are dying to make fun of me for crying, because they know I cry in movies, they turn to Me. Movie ends. You would think people would say, Hey, are you hungry? Do you want to get this to say, we have to go to the bathroom? No, right on me. Did you cry? Right like that? Okay, so I say, No, I didn't, but I got filled up a number of times, and my wife goes, Yeah, that's called crying. And I said, No, I don't think so. I think crying is when water drips down your face and you go like that a little bit. I didn't make that I didn't make that noise, and no water went down my face. So you're a professional. Was I crying? Yes, I was
Erika Forsyth, MFT, LMFT 42:49
right. Your tear ducts, your tear ducts, were releasing tears into your eyes. You just worked hard on not blinking.
Scott Benner 42:56
Erica, it's okay. Let's say it wasn't natural and normal. They said the same, oh, good, good. But I don't think I attribute crying to the noise you make when you can't breathe because you're crying. Does not everyone cry like that, like when they're real? I don't cry like that. Often. I
Erika Forsyth, MFT, LMFT 43:14
see a lot of people who silently cry, really, just, yeah, just your tear, your eyes get watery, and then they just, they slowly
Scott Benner 43:22
pour out. Okay, well, I'll apologize to them, because then I was crying. I mean, if you say and you are professional, you went to college and everything, also, we never talk about it, but you went to a really good college, so I believe in you. Oh, thanks. So anyway, when I clicked on this person's picture after they sent me this note, I got real. I got filled up. I was like, and not for the reasons why cynical people would think it's not because, like, oh, I helped them. I didn't have any of that thought. I just felt really happy for them. Because I know where this can go, and I know how much easier it is if you find other people to share the burden with, and you ask for help from people who are ahead of you on the path. And so I just was like, Oh God, good. It worked for them, because I see too many people who resist that, right? They resist this thing we've been talking about for the last 45 minutes, and then they either never find their way to it, or eventually, begrudgingly get drug to it and end up saying to themselves, I wish I would have done this sooner, you know. So I wish you would all just go out there and any of the things that Erica brought up that might help you find connection or ideas it is really, really worth your time, and I think would alleviate the burden that you feel as a caregiver. Yes, yeah, okay, well, go do nobody listens to me. So, I mean, you know, just go help yourself, damn it well.
Erika Forsyth, MFT, LMFT 44:45
And I think what that what you were just reflecting upon the story as you're seeing the picture of the of the family, the little girl you were, you felt filled up because you also had the joy of giving like you through your work. Through your podcast. I know you're not saying this to get these pads on the backs, but like that's the gift of giving that feels so joyful. And I think even in this space of when you're struggling and feeling so unrecognized, you're so exhausted, the stigma you're experiencing is so hard. It feels Hey, it's physically and emotionally difficult to reach out and say, I need help. Can you please help me? I want to, I need to be vulnerable, but that feels scary. But then, in return, you might also be able to reciprocate and give that to somebody else. And that is so powerful. So it's if that helps you move through that space of like, I don't want to, I don't want to be a burden to somebody I don't want to, you know, share all the stuff that feels so hard they're never going to get it and they might not, but also, you're giving them that gift of your vulnerability so that they might be able to respond to,
Scott Benner 45:51
yeah, you don't realize I'm in a unique position to share with you that that recharges me, right? So then when I get back up next week to do this again, like, this podcast been gone for 10 years, like, at some point you think I might just get up and go, Hey, you know what? I'm gonna go get a different job. I don't feel that way. I know this works. I have it set up in a way that it works. And there are going to be new people tomorrow who need it again. And there are going to be people who found it two years ago, who I hear from that they they lose their way again in the future, and then they find their way back through this. This place is a, you know, it's a it's a touch point. For some people, after they've been here, they can come back to it. And so you guys give me the energy and sometimes excitement that I need to make the podcast, and not that I don't like talking to people like that. The truth of it is, if you told me I had to have a conversation with a stranger every day for the rest of my life, I would just easily do that. I would love that, even if they didn't record it. Actually, if they didn't record it, be much better, because I could, you know, enough to be as appropriate and so, um, you wouldn't have to filter. I would. I could just curse way more is what I'm saying. So like, because the cursing is, then the guy's gonna edit it out, it takes time, you know, like, I pay by that minute, like, you know, I don't want to make it sound like I don't want to do it. I absolutely want to do it, but I'm still a person, and I still don't feel well some days and some days I have other stuff going on. And, by the way, I have a kid with diabetes too, and, you know, like, that doesn't become, you know, that doesn't just go away. So I get this feedback from people, and I'm like, Yeah, this is valuable and worthwhile, and it makes me feel better as a human being, like, I don't know another way to say I used to tell people that I was not a Chicken Soup for the Soul person when I was growing up. And as a matter of fact, if you've listened to this podcast and thought this is a good guy, if you would have met me when you were like, I was like, 23 you would have been like, this asshole is not going to grow up to help people with like, diabetes. Like, that's not going to happen. He seems like a prick. I did not have my head in the space at all. And yes, I got into it to help Arden, but I stayed into it because of everybody else, right? Like, she's been helped. Arden is good, and I still learn about diabetes through other people. And even that's not the whole thing, like, the whole thing is just, I somehow, I don't know how created. I don't know, like, a like, a planet of like, where the gravity pulls people in, and people who need it find it, and then they're allowed to fly away when they don't need it anymore, and that's hard to do, so even though you brought up other places that are great, that help people, but those places could work for a decade and never achieve the mass appeal that the podcast has made. So while I have this year, I want to do as much good with it as I can. But the reason I said that is because all of you can go do that thing, you know? I mean, if this podcast is the sun, then you guys could the earth. I don't know a lot about astrology, not astrology. What is it? When we talk about planets, obvious. I don't know a lot about it. But if this, oh my gosh, if this podcast is, is Earth, you guys could be moons all around it, like doing, that thing on a smaller scale for five people, 10 people, 20 people at a time, and that would be, trust me, you would feel the exact same way I feel when someone came back to you and said, This thing you shared with me really helped me. So go, go out in the world and do nice things, please. And it'll get rid of your burden too, which is what we're talking about today.
Erika Forsyth, MFT, LMFT 49:19
We're talking about planetary science. That's Is that what it is the study of planets, planetary science. Scottie
Scott Benner 49:26
slept through that one too. I just want to let you all know that you've been listening to a podcast for 10 years from a guy who barely made it through high school, I mean, and it was because I was asleep, like on my desk, face down, in case you're wondering, just slobbering on on one of those blue notebooks. They don't make any more that, like jeans, you know, what a year old? You know, yes, yes. Not as old as of course. But anyway, nearly are we going to keep doing this? Do you think there? Do you think there's more content for burnout? Or do you think this is going to be a nice, little, contained series?
Erika Forsyth, MFT, LMFT 49:57
I think this could wrap up. You know, this, the. Like the caregiver, the burden, the burnout. I'm sure there are more hot topics that we did not address, but my hope is that these themes kind of encapsulate all of what you do experience on a minute to minute basis. But certainly you can let us know, well, I'm
Scott Benner 50:17
sending you back into the world Erica then to have another great idea for the podcast. Thanks so much for doing this. I appreciate it.
Erika Forsyth, MFT, LMFT 50:23
You're welcome.
Scott Benner 50:33
Omnipod five sponsored this episode of The Juicebox Podcast. Learn more and get started today at omnipod.com/juice box. Links in the show notes, links at Juicebox podcast.com, are you starting to see patterns? But you can't quite make sense of them. You're like, Oh, if I Bolus here, this happens, but I don't know what to do. Should I put in a little less, a little more? If you're starting to have those thoughts, if you're starting to think this isn't going the way the doctor said it would, I think I see something here, but I can't be sure, once you're having those thoughts, you're ready for the diabetes Pro Tip series from the Juicebox Podcast. It begins at Episode 1000 you can also find it at Juicebox podcast.com up in the menu, and you can find a list in the private Facebook group. Just check right under the featured tab at the top, it'll show you lists of a ton of stuff, including the Pro Tip series, which runs from episode 1000 to 1025 Hey, what's up? Everybody? If you've noticed that the podcast sounds better and you're thinking like, how does that happen? What you're hearing is Rob at wrong way recording doing his magic to these files. So if you want him to do his magic to you. Wrong way recording.com. You got a podcast. You want somebody to edit it. You want Rob. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.
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