Scott Benner 11/12/21 Scott Benner 11/12/21

#576 Hard T1 Questions from Kids

Erika Forsyth, LMFT is back to answer some difficult questions sent in by children of the listeners.

Erica is a licensed marriage and family therapist who herself has had Type 1 diabetes for over 30 years and who specializes in working with people with diabetes and their families and caregivers—from those newly diagnosed to those experiencing it for decades. She and Scott discuss burnout, emotions surrounding diagnosis, and dealing with diabetes distress and constructive ways to prevent it from impairing one’s function. http://erikaforsyth.com

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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
You are listening to Episode 576 of the Juicebox Podcast

I'm very excited to tell you that Erica Forsyth is back. You may remember Erica from Episode 407 479, or 514. She's been here quite a bit talking about the emotional side of type one diabetes. Erica is a marriage and family therapist. She also has type one, and she's been incredible on this show. Today, Erica will help me tackle a number of incredibly difficult questions that were sent in by children. Please remember, while you're listening 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 health care plan, or becoming bold with insulin. If you're a California resident, and you think Erica can help you check her out at Erica forsythe.com. As you may know, I'm on a mission to add as many people to the T one D exchange survey as they possibly can here in November. It's my own little diabetes Awareness month thing I'm doing T one D exchange.org. Forward slash juicebox. US resident who has type one, or is the caregiver of a type one, head over take you less than 10 minutes to fill out the survey. It's amazing, you'll help people you'll have to show. This episode of The Juicebox Podcast is sponsored by trial net, you know trial net, they provide type one diabetes risk screening at no cost to the relatives of people living with type one. I'll tell you all about them a little later in the show, trial net.org. Forward slash juice box. About five months ago, I had what I thought was a good idea. I thought I would do like a defining diabetes series for children based on their questions about diabetes, I thought it was going to be great. So I go on Facebook. And I asked Hey, can you tell me some of the questions that your kids have asked about diabetes. And then what happened next was not what I expected. I am looking at a Facebook thread here that is now 22 weeks old, that has 256 responses in them. One more heartbreaking than the next. And so I didn't know what to do. And I thought I'm gonna do it with Erica. And so I don't know what this is supposed to be. I'm just gonna jump right into it. Okay, and I'm gonna get your top line responses. And I think the conversation will find its way that's my okay. So good. Yes. So I just threw up there. And I said, Hey, do your children ask diabetes related questions that are difficult to answer. And, you know, like, I just thought it would be like, even put up some examples like, well, I have diabetes, the rest of my life. You know, while I still have diabetes, I'm six like that kind of stuff. These are the things that Arden asked me when she was younger. Right? The very first one out of the box. Somebody says, My child has asked me what happens if my blood sugar goes to zero? Mm hmm. And I'm like, so what? So let's just start there and see how far we can get through this. Okay, how valuable is it for children? And at what age to understand the real consequences of them getting too much insulin? And do you run the risk of scaring them about their insulin too?

Erika Forsyth, MFT, LMFT 3:37
I think my first thought is, I wish I knew what age each child when a parent was writing in because I think it's has to be so relevant and appropriate and make it age age appropriate. Right?

Scott Benner 3:51
for you here. Don't worry.

Erika Forsyth, MFT, LMFT 3:52
Okay. Okay. So do you want to tell me do you want me just to guess?

Scott Benner 3:59
They said, they said the child is six years old. Erica, you're breaking up? You're gone? Actually.

Erika Forsyth, MFT, LMFT 4:10
No, I'm here. I'm sure. I didn't press anything.

Scott Benner 4:13
I know you didn't. The system. It booted you like you had a weak signal or something like that. Okay, so sorry about that. So yeah, six years old. What happens if my sugar goes to zero?

Erika Forsyth, MFT, LMFT 4:22
Okay. So I think and keeping it appropriate, and not fair, you know, causing any inappropriate fear, but also you want to create a respect around the insulin. I think if if I were the parent in this, in this response, I would say well, we have all of these precautions and tools to prevent us from going to zero. And that would be the case particularly with you know, the CGM. And I think that the child seems to be so that kind of worst case scenario thinking. So I would just I would start and maybe end there to say we have all these tools to make sure that you don't go to zero. And, and we know what to do when you start to go low when you start to feel, you know, all the symptoms of when you feel low. To prevent that from happening

Scott Benner 5:22
at a certain age, though, don't people deserve to know, what happens if their blood sugar goes to zero? And what how do you figure that out? It's got to be case by case, right?

Erika Forsyth, MFT, LMFT 5:33
Yes, and I don't know. You know, the stats, to be honest around how many people are have hypoglycemic unawareness and end up having seizures end up having to be hospitalized, or even death. And we all know in our community, those are real possibilities. And I would imagine, it's probably a small amount of people who have hypoglycemic and awareness. So I think at some point, I would say, I think maybe maybe closer to 10, when maybe even eight to 10, when children have more understanding of death, they might not understand it completely. But they might start asking questions, if grandparents are dying. I think you can connect it to that developmental understanding of that things that can happen. But that, but not to link it to a to their personal fear that because I think you could you could create a real fear of going low. Yeah. And we want to try and avoid that. Right, right.

Scott Benner 6:45
Oh, also, I would say that you don't want to attach it to their personal success or failure. Like you, you definitely don't want to say to somebody, Hey, listen, here's why you should do a better job because you don't want to die. Like that's, I don't think that's a valuable way to talk to people, generally speaking, correct?

Erika Forsyth, MFT, LMFT 7:01
No fear, fear based motivation, particularly with type one does not work. In terms of, you know, even going the opposite way of you don't want to go high of us, you're gonna go blind. And you don't want to go low. Ross, you're gonna die. I think they know those. Those are, number one, really, it's really rare. And number two, that doesn't, that isn't going to lead to, you know, solid management, blood sugar control, right?

Scott Benner 7:30
Yeah. People don't don't generally do their best thinking when they're in fight or flight mode, correct? Yeah. So here's another one ready? My children who don't have diabetes, always ask me if they're going to get done. Hmm.

Erika Forsyth, MFT, LMFT 7:45
Yes. And I can even share from growing up. I was I was diagnosed first at age 12. Two years, and in between that time, I have a younger brother. And he was approximately four years younger. And I know he was concerned. Two years later, when he was 10, he was diagnosed with type one. And so then, my parents had my sister do the trial net at the time, I think it was still called trial net. This was many years ago, 30 plus years ago. And she did not have any of the antibodies. But I know that that was a certain, you know, it is a very real fear for siblings who do not have type one, particularly when they see how it can change your life at particularly in the beginning of diagnosis. And so the what was the specific question, what do I tell my children?

Scott Benner 8:41
Well, let's just I mean, you don't have to tell her what to tell them. What would you do? Because I'll tell you right now that my answered that question when it was asked of me with I hope not, but they're statistically you have a elevated chance because Arden has diabetes, but I hope it doesn't happen to you. And then I took my son to trial on that.

Erika Forsyth, MFT, LMFT 9:00
Yeah, yeah. Yeah. So I mean, I think we we can't make any guarantees to our children, right, that they're never going to catch a cold or they're never going to break an arm. So I think when you know, am I is this something bad gonna happen to me in life in general? I think we want to tell our children well, we hope not, but we're gonna do our best to you know, let you live a life of freedom and enjoyment and play in soccer and sports but we're and we hope that you don't have to break an arm. I'm kind of globalizing this response. Yeah. But if something does happen, then you know, we're going to be here to support you and we're going to get through it as a family. It's how I would respond.

Scott Benner 9:43
It's 99%. The same vibe is what do I What happens if my blood sugar gets zero? What happens is we're gonna try really hard for that not to happen if it tries to happen. We're gonna do our best to fix it with everything we know. And here are some of the things we know.

Erika Forsyth, MFT, LMFT 9:57
And yeah, I think it's you know, this the children They're asking questions because they're scared. And I think as parents, we want to reinforce that, you know, that things do happen. We can't protect them from everything. But if something does bad happen, or something that we're not planning for that we are going to do our best to support you as our child to get through it, and we're gonna get through it together.

Scott Benner 10:20
Okay, ready? Yes. Eight years old. When will my pancreas work again?

Erika Forsyth, MFT, LMFT 10:26
Ah. Yes, I often still ask that question.

Scott Benner 10:33
Still wondering that myself? What is happening? Oh, I apologize. Hold on one second.

Erika Forsyth, MFT, LMFT 10:38
Yes, yeah.

Scott Benner 10:44
Hey, it's a little early for the ad. But it's a natural break in the conversation, and then everything will just flow after this. So I'm putting it here. I'm here to tell you about trial net trial. That, of course, is a type one diabetes risk screening organization that offers that screening to you at no cost. This is for people who are relatives of someone with type one who's eligible, you qualify for free risk screening, if you are between the ages of two and a half, and 45. And have a parent, brother, sister or child with type one diabetes, you also qualify if you're between the ages of two and a half and 20. If you have an aunt, uncle, cousin, grandparent, niece, nephew, half brother, half sister, who has type one. last way you can qualify. If you have tested positive for auto antibodies, outside of trial net, like through another service. Don't forget this is free to you. All you have to do to sign up is go to trial net.org forward slash juicebox. answer a few quick questions to see if you're eligible. And then you join 1000s of type one families who are on the pathway to prevention. Here's how you get screened with an in home test kit with a lab test kit, where by going to a trial that location, alright, so you can either do it at home, they'll send it to you, you do it with a finger stick, and you send it back with FedEx, like they come to your house just pick it up. Or you go to a lab like quest where LabCorp where they'll do the blood stuff in the sending. Last way, you can ask if there's a trial net location near you, where you would go to get the blood draw done, then your results right this is what you want to know about. Your results will be received in four to six weeks. If your results show that you are in the early stages of type one. Trial net we'll schedule a follow up visit to see if you are eligible for prevention study. Here's a couple of reasons why you may want to know if you have the auto antibodies. Type one family members are at a 15 times greater risk to develop T one D than the general population. Type one screening will detect if you are in the early stages of type one. And if you are identified as at risk trial net is here to help you. They have prevention trials. If your screening results show that you are in the early stages of type one, you may be eligible to join a prevention study testing ways to slow or stop the disease progression. They also offer ongoing monitoring by top type one researchers in the world. And if you do develop type one being monitored in a clinical research study like trial net decreases your chances of DKA from 30% down to three. And you know what else? It helps the greater good a future without type one diabetes starts with you. Research can advance with participants. Research can only advance with participants. The more participants who are involved in clinical research, the faster we'll find answers, so you're in a unique position to identify treatments that will slow or stop type one from happening. In the last 20 years trial net has been the leading network and type one diabetes prevention research. In addition to being able to accurately predict who is going to develop type one trial, it has now found a way to delay it by leading it to plus a mob prevention trial to please the mob is the first drug to delay type one for a meeting of two years. This is an incredible advancement that gets us one step closer to our ultimate goal. Trial net.org forward slash juicebox when they ask how you heard about them, tell them to Juicebox Podcast, but you have to complete the process for it to account for me. So don't just order the kid at home and sit on it. You have to do the work and send it in

Okay, so I'll start over again because we got interrupted I apologize. A young child when will my pancreas work again?

Erika Forsyth, MFT, LMFT 14:51
Yes, so that is a tough one. I think it is. You know when I was diagnosed there was still a lot have tacos, let's Brina work, we're fighting for a cure, we're walking for a cure. And I think those are all lovely things, I think it's also really helpful to not plant those seeds of not necessarily false hope. But I think you want to be realistic. And so what I was what I was told, and when I talked to, you know, younger children in my office about, you know, was Will this ever will ever get over this? Will I ever get better? I'm just, you know, in terms of like, the sick narrative, right? And I think to do you have to be honest, reticulating, eight, you know, I think the child can, can understand that, you know, the pinkness might not work will probably probably not work the way it used to. Without help. Now, I think there, obviously, there's a lot of hope for the future about all the various ways that maybe they transplant aside, I don't think that's like a really realistic thing to go into with children. That has a, you know, enough complications of its own, but I would, I would say, you know, I don't want it probably won't work the way it used to. And we have all these other ways to to help it to help your body function, even though it's not going to work the way it used to. But I think in that allowing space for all of the other emotions of you know, that tease the child's trying to find some hope in the diagnosis. Like, what are things ever going to change? And so allowing space for the anger and the sadness around? It's a loss? I know, we've talked a lot about that already. But I think allowing for instead of quickly going to well, but it's going to be okay, because we have our pomp or CGM are we have, you know, there are all these other cool possibilities out there that might happen in the future.

Scott Benner 16:55
Let them write, let them have their feelings experienced their complete feelings about it. Yeah, I listen, the way I talk about out loud is I hope for a cure, and I live like there isn't going to be one. Yes, yeah, I've

Erika Forsyth, MFT, LMFT 17:06
heard you say I like that. Yeah,

Scott Benner 17:07
I just think that that's, that just seems reasonable to me. I also, you know, to get a little more thoughtful about it, we haven't exactly cured a whole bunch of things in the course of human history. So, you know, there's a lot of things that need to be cured is, and I think it and I not just think, but I've seen the idea of there's going to be a cure stop people from taking good care of themselves in the moment thinking, Oh, this won't matter, because in a few years, this won't exist anyway. Mm hmm. And use that as a crutch to not take care of themselves, which.

Erika Forsyth, MFT, LMFT 17:47
Yes, yes, absolutely. No, I love that phrase of Yeah, I mean, I think it's okay to hope. But to be realistic with that hope. Yeah. And live like there isn't going to be one.

Scott Benner 17:58
Okay. Oh, here's one. That's a specific question. But I am going to make it a little more generic. This person just says, Does this mean I can't live in my car now and says that their child had an ambition before they were diagnosed, to live in a car and travel around. But I think what they're asking is, are my dreams not possible now?

Erika Forsyth, MFT, LMFT 18:16
Wow. Wow. Right. Yeah. Can I I was hoping to do whatever it is. And now with this diagnosis is that impossible.

Scott Benner 18:30
You know, the people usually use use the Hey, used to be Oh, you can do everything except be in the military or flight airplane, like a like a passenger. Like it used to be like that thing, of course, until you meet a kid that wants to be an airline pilot. And it's not as comforting. But that idea of like, you can do anything except for these two odd things over here, which you don't want to do anyway. Don't worry about it until we want to be in the military or something like that. So. So what is the real question? The real question is, AI? Are my dreams, not possible? And I would think if you're young enough, the answer might be, I might say, Look, I know right? Now you want to do this thing, but you might learn or grow or think of something different, and you'll be able to do that fine. And if you can't do this thing, I bet you we could find a way for you to do it. Because I don't imagine much you can't do with diabetes, honestly.

Erika Forsyth, MFT, LMFT 19:22
Right. Yeah. And I know you think you can be in law enforcement with it.

Scott Benner 19:28
I've interviewed a police officer. Yeah,

Erika Forsyth, MFT, LMFT 19:30
that's what I thought. That's what I thought. Okay. So yeah, in terms of traveling around in a car, or living in a van or traveling around, you know, the US or wherever, I think that's definitely doable. I would probably want to make sure there was a a CGM or something of that nature just for safety. But it feels like I think upon diagnosis, it feels like there's a loss of freedom. And so So whether it's this particular child or any other children, you feel like oh, no, are all my other all my other dreams or all the other things that I feel like I can do freely? Or without planning? Is that is that going to be taken away from me whether it's a certain job or a certain activity or birthday party, you know, all of those things? And it is it is a mental shift. So I would say, you know, yes, I think most dreams most jobs, you know, having children, which I was told would might not happen, you know, 35 years ago that we are we are evolving within obviously, our diabetes treatment, man and management, and that most things are possible. Yeah, it just takes planning. I mean, that's really it just takes more planning.

Scott Benner 20:48
Yeah. And if you are in one of the things that's blocked, like military, like, there's a question here from somebody that says that their father was a Submariner, and that the kid wanted to do that, and they can't do that now. And so, but I do think that's a valuable, like, you know, I mean, honestly, look, there's a lot of nine year olds that think they want to be something that don't want to be at when they're 18. That's right. So maybe just like, it's maybe you you go hopeful, we'll we can take care of it. And then maybe privately, you hope it, you know, they changed their mind, or you can actually figure out a way to get to it. I'll tell you. That's an overwhelming question here. Here's another overwhelming question in here, some version of why me? Uh huh. Uh huh. So, yes, know what to say about that.

Erika Forsyth, MFT, LMFT 21:32
And I, I remember, I think every child for the most part goes through this stage. And even as the parent is, the caregiver might explore that in their own processing. I remember even reading a book. And I think it was right after I was diagnosed, called Why me about a child who was diagnosed, it was a fictional book. And I think, if we were to zoom out, most kids with any kind of sudden change or diagnosis of you know, that shifts their their lifestyle is going to go through that. And I think, you know, we, I spend a lot of time with my children clients processing this, and there's really, you can't rush it. I think it even will come and go throughout maybe your lifetime. Even if you come to a place of acceptance, some, some children are incredible, and say, Well, this is just going to be my thing. And I'm going to make it work. And they can get there very quickly. Some, some children really struggled with the anger, because it's, it's hard. It's hard as a child, you know, to manage this, and even as a grown adult. And so I think, like any kind of grief process, you might come to a place of acceptance, but it it's okay for it to come back. And there isn't we can't we can't answer that question. Right. We can't say, Well, this was, you know, this was your plan for your life. I think that we that's the hard part, right when our children ask us questions that we really can't have clear answers for. And we can say we, you know, we don't know, but we know it feels, I imagine it feels this, this and this, and let's continue to talk about how it feels.

Scott Benner 23:29
Yeah, yesterday, I was with Arden while she was getting her senior portraits taken by a photographer. And some point, she moved a certain way. And the woman was like, is that in a pod? And Arden goes, Yeah, right. And the lady goes, Oh, my daughter's best friend has diabetes, and she wears an omni pod. And you know, I mean, like, it's no great thing. We were only like one town away from where we live. Like, it's not like I was in Massachusetts, and I grew up in New Jersey, and the woman said the kid's name. And I said, Oh my gosh, I put that kid's first insulin pump on her. Oh my gosh, she goes what so the kids like five, six years younger than my daughter, but had played softball, actually, they listened to this. So this is where they're going to hear this. And I remember them just being if I remember, like, apprehensive about putting on an insulin pump the first time and I was just coming to my house and I'll I'll do it for you. And all these years later, there we were with a woman taking my daughter's picture. And she's like, Oh, my daughter's friends with that girl. So the woman knew about all this and it started a small conversation. And I don't remember the exact question she asked him, but it was about like, is this you know, like, how is it living with diabetes kind of thing? And Arden's because she just says, I'm good with it. It's fine. And she really meant it. She meant and I did think in that moment, I wonder if it'll always be that way or she'll wake up one day when she's 36 and just be like, Oh my god, I still have diabetes. This just still happening. Hmm. But I appreciate your answer. So, okay, you're gonna keep going. We are going to be crying by the time this is over. Just see oh, my gosh. Well, we already covered when will I go? When will it go away? So it's not fair. Why me? How long can I go without insulin? That one is I think right along it's I think that falls right into the what happens if m zero like right figure, it's the same kind of scenario like it's a real health issue it could end with it could end poorly with, you know, decay or death. Right? The answer has to be, you need insulin all the time, you need Basal insulin, and you need to Bolus for your meals. I think it just has to be like, like very cut and dry when you talk about stuff like that.

Erika Forsyth, MFT, LMFT 25:44
Yeah, and I think I might be reading in too much to the question, but also kind of like, am I gonna have a break from this? Is there ever going to be a period of time where I can just not take my injections or have my pump on my body? And I think that's the that's the child trying to process like, Is this ever going to end? Yeah. Yeah.

Scott Benner 26:05
Well, here's the next here's three questions later. If I don't do insulin, will I die? Mm hmm. And I don't know. Like, again, down to age again. Right,

Erika Forsyth, MFT, LMFT 26:15
right. Yeah. How did you know how old that child is? Okay, well, I guess it probably doesn't necessarily matter. I could probably answer this, depending on the age bracket is kids

Scott Benner 26:28
younger, because they had three questions I love. Here we go. The kids said, If I don't do insulin, will I die? Then she said I love my diabetes today, but I didn't love it yesterday. When will my diabetes go away? When I was in your tummy? Mommy, did I have diabetes, too? Oh, so. So she's little.

Erika Forsyth, MFT, LMFT 26:47
Yes. She's She's processing what does this mean? And like, also, because you know, a younger child has a hard time but time

Scott Benner 26:57
Tommy thing got me. God damn it. Yeah, yeah. Go ahead.

Erika Forsyth, MFT, LMFT 27:02
Yes, I think processing like the timing of you younger children don't know that yesterday, today, tomorrow, you know, in two hours in two weeks, right? So they're trying to understand the permanency and that's a really hard concept. And like, was I always this way, did they always have it? Ah, it's it is painful. And I think for you, the younger children, I would stay you know, day to day. Not? I would maybe because I don't think they really understand like, well, this, you're going to have this forever. Just say, Well, today, we're gonna we're gonna do our best today and then we're gonna go to bed and then tomorrow, we're gonna do our best again. I think the was does she start off with if I don't have insulin? Will I die? First one? Yeah. Yeah, I would say for the younger children. I would. I don't think you need to go to the death. Like, I think we say well, if you don't have insulin, you I would start in the affirmative. Like you need insulin to feel good. And excuse me and to, to live the life that you want to live and play and have, you know, go to school and have playdates and play on sports or dance. And so you need insulin every day to do all those things.

Scott Benner 28:22
Is reframing important than because, yes, they're asking the questions sort of in a defeatist way. You need to like flip it around and reframe it so that it's not, so that you hear if I don't do insulin, why die? You don't even address that. You say, Oh, no, let me let me explain to you right now you need insulin to feel good. Insulin keeps you healthy. You know, so you, you accentuate the positives. And don't don't skirt the question, but don't lean into the sadness of it.

Erika Forsyth, MFT, LMFT 28:52
Well, or the. I mean, obviously, we all know that that's the reality, right? If we don't type ones don't have insulin, they will die over. You know, I don't know what the actual length of time is. I usually generically say a week to people to try and like when I'm explaining what my type one is to other people.

Scott Benner 29:12
You're like, if I eat this cookie right now, I'll be dead in seven days.

Erika Forsyth, MFT, LMFT 29:18
Oh, my gosh. Yeah. Those questions like, can you eat that? Yeah. So I think for the Yeah, for younger children, I would say probably up to like the eight to 10. I mean, I think as younger children, even the 567 year olds, they will understand death acts outside of their own body, right. They in terms of pets, dying, grandparents dying. I think relating it to their own concept that they will they might ask those questions even when they are exposed to death. Will I die someday? And I think you can say, Well, we, you could also globalize and say we know what we're all gonna die someday. Depending on how your child is, in our experience around death, if there's no experience around death, I would keep it in the affirmative of saying, we need insulin to keep you alive. Or to keep you healthy. We need insulin to keep you happy, and doing things you want to do. I would say later, eight to 10, you could have more kind of realistic conversations around, you do need it to keep you alive.

Scott Benner 30:30
I listen, I go back all the time to a story that a woman told on here once very quickly, her child with diabetes was younger with eating, they had an older child that didn't have type one, the mom had to leave the house. And the kid, the older kid was put in charge of making sure that the child ate because they had already given them insulin. Mom leaves the kid doesn't want to eat her food, his or her food, excuse me. And then the older kid in a desperate attempt to get them to eat says, you know, if you don't eat that you're going to die. And no one had ever said that to the kid before. Hmm. So the child was just wrecked when the mom got home, like sitting on the floor crying, because no one had ever told them that diabetes could kill them. Yes. So that's how you don't want to find out is my point.

Erika Forsyth, MFT, LMFT 31:15
No, that Yeah. Yeah, I think you would you want to have the these types of conversations with your child. So that yeah, they aren't shocked?

Scott Benner 31:26
Yeah, you're gonna have to take some responsibility to really feel your kid out and make sure you're having these conversations at the right times. Like nobody can tell you what the right exact age is to do something like this. Alright, yeah,

Erika Forsyth, MFT, LMFT 31:37
it really depends on your family. The way you talk about things your family's life experience, exposure to death. And your personal, your, your comfort level, I think you need to be I think it as a caregiver, it might be hard to come to terms with that concept, right? That your child might die if you don't, your child could die if you don't do all the things. But I think I think going back to like the stats, I really I don't know, maybe you just got but like how often people die from a low blood sugar. I mean, obviously there's chronic, if you're not in good in you know, and you're not in your in your managing well. Yes, yeah,

Scott Benner 32:21
I don't know the numbers. But I have to tell you that it's an idea that I lean on pretty heavily for my own daughter, right, which is that a lot of people have diabetes, I don't wake up every day to the news that 20,000 More people have died from local, overnight, we have the best gear we can have. It benefits her health to do things the way we're doing. And I really hate to say this, but if that's how she goes out trying to live well. There are worse ways to die. And so I just think that, um, I think that the answer is we're going to do the best thing for you. We can yes, there's risks and everything. There's risks in this too. Yes, yes. All right. So Erica, the next two questions are both equally horrible in different ways. So here's one for you that asked a lot. And I genuinely don't know how to answer this one. Because I don't have a lot of experience in this space. But why did God give me diabetes? Mm hmm. So if you're a very religious family, you may be living your whole life on the bend of like, hey, what we have that's good in the world comes from Jesus, but we have it's bad in the world comes from Jesus, then all of a sudden, this happens. And you know, Jesus loves me, why am I why I've diabetes?

Erika Forsyth, MFT, LMFT 33:30
Mm hmm. Yeah, that's, I hear that question as well. And I think it comes down to yes, your relationship with God. And if you are, if you have a faith and you believe in God, it's it's very natural for a child to then say, Well, if God is in control of everything, why did he let this happen? To me? That's kind of the question I hear, why didn't he protect me from this? And I would explore with the child, you know, what, what is their understanding of how things work in the world. Like, God doesn't plan for people to have car accidents, like bad things happen, that are out of our control. But it doesn't mean that God is not with you, or that God doesn't care or that God doesn't love you. And ultimately, where children will, will land as well. You know, God didn't necessarily give this to me, but he can help me get through this. In terms of if they have a faith or trust in him. Yeah,

Scott Benner 34:43
right. If you have a religiously faith based life, you don't want to destroy it in one fell swoop by saying, I don't know. I guess he sucks. You're like, right, yeah. You just gotta like you that alright, that makes sense. But

Erika Forsyth, MFT, LMFT 34:54
I think I think that that is also you're wrestling with and trying to find a reason and why you were diagnosed, and you're going to be angry at anything and everything initially, right? And so you're there trying to find like, Well, God, I'm angry at God, I'm angry at mom and dad, I'm angry at whatever it is we're trying to place. Find a reason or place blame when some when things just happen that are out of our control,

Scott Benner 35:19
I find that randomness like comforting like that something bad happened, and it's not for like it just happened, like some people's genes just kept, you know, people like the way I think of it. My daughter has diabetes, because a really long time ago, two people met each other had babies, and along the course of that happening over and over again, lead to this auto immune issue. And that's why she has it, it almost feels like it's nobody's fault. And right. Yeah, and that's, like comforting to me. I guess my brain just works backwards.

Erika Forsyth, MFT, LMFT 35:48
No, I think that's helpful rationale as well, you know, that? I mean, it obviously isn't anybody's fault. It's our how our genes have, as you said, mutated, right?

Scott Benner 35:59
It's horrible. To look at your wife and think, had I just picked the other girl This might not, you know, you know, or she would have just said no to me, then, you know, this wouldn't happen, but then the kids wouldn't exist. And I'm not willing to give them up for that. So right. You have to be okay with this. Right? You know,

Erika Forsyth, MFT, LMFT 36:17
yes. All right.

Scott Benner 36:18
Here's a little twist. I'm going to tell you what the kids said. But then I'm going to ask you a question for parents. Okay. Three years old, had had diabetes for about a half a year falling asleep on night says, Mom, can you take my diabetes away? Because I don't want it anymore? Can you take it away? In the morning, and he wanted to wake up and not be diabetic? She said, oddly enough, at the time, they didn't talk about this stuff, because they thought the kid didn't have the capacity to even talk through it. But obviously was having these thoughts. So my question around this one is, what should she feel after that happens? Like, like, and I'm going to just give you another one. Like I was putting art into bed one night, a long time ago. And we were just testing her blood sugar before she went to bed. And she just very, like matter of factly says, Hey, what, how am I going to do this when I'm in college? And she was like, I don't know, seven or eight. And I said to her? Well, I'm figuring things out right now so that I can teach them to you, and then you're gonna know what to do. And you'll just be able to do them. And I said, and if you have trouble, you could call me. And I could help you because I really understand it. And I'm sure you'll make friends who will help you. And I did all that. But that's not even the story. The story is that I barely got out of a room and closed the door before I cried a lot very early. So what do we do for the people who are being asked these questions?

Erika Forsyth, MFT, LMFT 37:46
Oh, well, I know. Yes. My heart goes out to parents who are I mean, it's it is incredible that the child asked this, I know, many caregivers have shared this, you know, wish to me. I know my parents shared this to me, like, oh, we would do anything to take it to height have this instead of you. Yeah. And you know, as parents, you know, you want to protect your children as much as you can. And the fact that this three year old is verbalizing, like when I will just go away, can you take this away? That's really, really painful. I think. So as you asked, How should she feel in the morning, meaning the child or

Scott Benner 38:30
the parents? I mean, the parent, like, what would it mean, you can say whatever you're gonna say, that's gonna be valuable for the kid and their progress. But when you get out of the room, you realize I can't take this away. That's all this kid wants. And now I'm a failure. Yeah, no,

Erika Forsyth, MFT, LMFT 38:44
I think you go, you go out and have a good cry. And you because I think you're there's a good there's probably that's going to trigger some grief around the permanency and around hearing actually, that your child doesn't want this, right. Doesn't want to live with this. And I think so understanding that's going to obviously, it's causing grief, it's causing sadness, and that we are you are out of control. We can't take it away from your child. And so the next morning, I would if, I mean, it depends on how the child would wake up, but I would have a conversation with my three year old and just thanking thanking them for sharing that and saying any, you know, encouraging that those continued conversations around, you know, wishing it were gone, knowing that we can't take it away, but I think affirming her ability to express that is where I would lean into as a parent. And I think it's okay to be sad, sad with your child.

Scott Benner 39:55
Well, my take away from what you just said is that it's going to take a long time for this to be okay. and that it's a continuing conversation, you don't want to just shut it down or think you're going to fix it with one statement today. And I think that's hard for people to hear. But if you have diabetes in your life, it could take years and decades for this all to, to flatten out and feel like it's normal. And it doesn't mean that it's not worth doing. I just think it's a very long process like life, it's a very long, you know, when they be people say, like, Oh, you're married, like, if you got to work at it every day. You don't work at it every day with the idea of like, well, once we've done it for 20 years, we won't have to work out. It doesn't go that way. So this is part of your life now. And, and having conversations about it, and these conversations are going to morph, they're going to change, the questions are going to change, and you have to keep having the conversations where it'll get bottled up somewhere and cause a problem. So

Erika Forsyth, MFT, LMFT 40:49
yes, yeah, I think just Yeah, accept accepting the fact that once your child or you as a caregiver has accepted, it doesn't mean that it's all going to be you know, rainbows and flowers for the rest of your life. Like it's okay to go back to the frustration and sadness.

Scott Benner 41:12
So here's the thing that parents do a lot that I think they think is kind and it might be and I just want to understand, but it comes up a lot in this thread. Because then their children ask why they say it when parents say, I wish this was me and not you. Mm hmm. Is that something you want to put on a kid? Like, is that kind or is it scary?

Erika Forsyth, MFT, LMFT 41:34
Yeah, I think those are the parents thing. I wish this was me and not you. I wish I could take this away from you. I wish I had it. And as I yeah, I remember distinctly my father saying that multiple times when I was newly diagnosed. And I think that's their, their, their processing their grief, and sadness, and not being able to control you know, a protect, quote, unquote, protect their child from hard things. I also feel like, is that a second? Is that a hard thing for a child to hear? Is it scary?

Scott Benner 42:10
Yeah. Should you keep that to yourself first, does it help them to hear it because at a certain age, I've I've said to Arden, not that but I've said something to her about? Like, I know, this is hard, and she'll be like, No, you don't? And I'm like, Oh, she's right. I don't really know. So you know, like, Is that the same kind of vibe? Like, I wish I could take it away? But that's nice, but you can't so why are you saying it to me? Like I don't know if that as you get older if that can be a concern?

Erika Forsyth, MFT, LMFT 42:34
Right, I think, sorry. I don't know. But this making that noise. Sorry. Turn that off. Yeah, I think what the Oh, my goodness, what is that? I don't know.

Scott Benner 42:47
Hilarious. You're like, don't worry. I've got this. I'll shut it right.

Erika Forsyth, MFT, LMFT 42:54
Let me see. It might be okay. All right. Well, hopefully it doesn't happen again. Apologies. Okay. So I would say. So the parent, what the parent is trying to express is there is their sense of loss, right in their sadness. So is it helpful? I don't know. I mean, I don't remember feeling. Just personally, I don't remember feeling angry when he would say that. I think now, if you're to kind of pull out and zoom out a little bit more again, to in general, is that helpful? That yeah, the parent can't take it away. But what they're really trying to say as I'm so sorry that this is happening to

Scott Benner 43:40
you. I would do anything for you. If I could. Yes. Yeah. I know. I know. Listen, I don't think I'm not making a judgement about it. I don't have a feeling about it one way or the other. I'm just it makes me wonder. Because a lot of people say it. Do. Yeah. So I think

Erika Forsyth, MFT, LMFT 43:55
I know this is hard. I think you're trying that, you know, you're trying to validate and empathize with your child. I think maybe it could be reframed to. I I don't know how hard this is because I don't have it. I'm not I'm not the person living with it. Yeah, but I can imagine it's really hard.

Scott Benner 44:17
I'll tell you this. I stopped in under, I stopped wondering if I could put myself in my daughter's shoes. When she said to me one day she referring to a severely autistic kid that she know who had a lot of deficits and whose life wasn't easy. She said that she'd rather be him and not her because at least he can't die from his thing. Mm hmm. This kid is feeling life on a level that I did not understand. And I am not going to try to put myself in her shoes again in front of her. Because I mean, she was not very old when she said that.

Erika Forsyth, MFT, LMFT 44:57
Wow, that is profound. And I'm sure with really hard to hear? Yeah, yeah,

Scott Benner 45:01
I'll tell you one of the things I'm great at because of diabetes is staring into the eyes of a person I love without crying when all I want to do is cry. So yeah, yeah, super good.

Erika Forsyth, MFT, LMFT 45:11
Yes. And I think kind of, you know, that's a really normal process, though, of comparison of like, illness comparison. And gosh, I feel like this would be easier. And that's all you're all. That's all just kind of trying to gamble make sense of it? Like, I wish, it feels like it would be easier with this illness and with the other one. But we know that all of it is hard to do, like you're trying to make sense of it.

Scott Benner 45:39
Right? Well, there's a lot of sentiment in here about bravery too. And I, I fall very weird on this idea, because I understand the sentiment of my kids are so brave, for the bravest person I know is blah, blah, blah. But I also don't think that I don't think people deal with medical stuff out of bravery, I think they deal with medical stuff out of necessity. You know, like, I mean, I would be happy for you not to think of me as brave if I didn't have to get injections, or you know, or, or have a pump put on me or whatever, you know, excuse me stuff that I don't want or that might hurt for a little while or be I don't know that that's bravery. It's just, it's um, I mean, that's the will the live really is what it is.

Erika Forsyth, MFT, LMFT 46:29
Right? Yeah. And I hear this concept a lot. Or, you know, in parents or think or they're trying to affirm their child in taking steps to keep themselves alive. And I think bravery in the concept of living with a with type one could be instances where maybe the child has finally felt comfortable sharing with their peers. And they maybe have been hiding it for months or years. Or maybe bravery is standing up and teaching your class about it. You're, you know, a general information. I don't know, just kind of smaller steps within living with it. I think, yes, I guess you are being brave by choosing to do the things to keep yourself alive. I think I've learned Yes, it's out of necessity to know,

Scott Benner 47:25
I mean, and I'm not trying to denigrate it, but like, I've heard interviews with people who are like been in natural disasters and like, This guy's a hero, and the guy's like, listen, I was just trying to get out of the building, those people were in front of me, it wasn't happening. So I coordinated and got the hell out of there and got everybody else out to like, I was just trying to stay alive, you know, and it benefited other people. And so I mean, I'm not a hero, like, Do you know what I mean? And I don't know if there's any. Also, is there any psychological reasons why you wouldn't want to set up a seven year old to think that they're, you know, the end all and be all like, I don't know, like, it's just a weird, it's a weird spot to be in because of diabetes? I think, a lot of questions, and I don't know all the answers to them.

Erika Forsyth, MFT, LMFT 48:06
Yes, I think there can be brave choices, while living with type one, and brave decisions or brave actions, while doing all the things that you have to do to keep yourself alive, if that makes sense. Yeah, and I think those are fine to affirm. Like, maybe it's the child was scared to go back to dance class, because they didn't want their they didn't want their friends to see their their pump, or their CGM. Or maybe they were afraid to go back to play sports because they didn't want to go low. And I think affirming those decisions, that I think that that is being brave, of doing something that they're scared they were scared to do or fearful or intense and anxiety around because of the type one and they chose to do that. I think it's I would affirm that as being brave to do those things that they were scared I

Scott Benner 48:57
yeah, I definitely agree. I didn't like I said, I don't want to come off. Like I think that living with diabetes isn't brave. But here's the here's a nice one. It starts off terrible, but then it ends nice and and you don't have to answer it. So take a break, breathe for a second. Okay. When her daughter was first diagnosed at six, she would always ask how long will I have diabetes and when will it go away? But then at nine years old told her mother that it doesn't matter anymore because she still has friends. And I think that maybe is an insight into how kids minds aren't as you know, sometimes they're not as they're not looking for the same things that you're looking for as a resolution maybe? I don't know, I just thought that was very sweet. Like it's

Erika Forsyth, MFT, LMFT 49:41
that is you know, and I think yeah, I think it also is very appropriate age appropriate, right? Because it's six they're not understanding the permanency and then at age nine, because and not understanding is this going to take away My friends, it's just going to change my life. And then at nine, they're saying, Oh, well, actually, I can still, I still have friends, I can still go to school, I can still hopefully do the things I want to do after school. And I still have to, I sought to manage, but I still can do the things I want. And I have joy. It's really

Scott Benner 50:17
Yeah, I didn't see a degradation of the things that they were hoping to have. Now. I mean, there's another kid that said, you know, why does diabetes ruin everything? But I, that also could be? I mean, listen, a big part of why this podcast exists is because I believe that a lot of the psychological, like, lightness that can come is after you really understand how to use the insulin so that you're not constantly chasing things around, and you don't know why things are happening. So maybe that kids stuff is being ruined. Because, you know, they're constantly chasing blood sugars, and they're high and they're low, and they're stopping from doing things. But that's why I think that it's important to understand how to better manage, so you can lessen those moments.

Erika Forsyth, MFT, LMFT 51:00
Yes, yes. And yeah, we don't know maybe that. What's what's going around with surrounding with that statement? Is he not feeling good? A lot of the time?

Scott Benner 51:10
Well, yeah, there's a ton of questions in here about why do I feel angry when I'm higher? Why do I feel anxious when I'm lower? You know, all that stuff? And I mean, listen, we've answered those questions in the podcast a million times, you know, your blood sugar fluctuations. impact your impact your brain. Yeah, absolutely. Everything else. To me, the answer to that question is, I don't know. But I'm gonna go back to Episode 210 of the podcast, listen to the protests and try to figure it out. Like, I mean, honestly, that that's a good answer. Okay, here's one. That's hilarious. Why does the insurance company take like two or three months to get me a pump? Why can't they have more than one person working on the paperwork?

Erika Forsyth, MFT, LMFT 51:48
Good question. Yeah.

Scott Benner 51:50
That we all say yeah.

Erika Forsyth, MFT, LMFT 51:55
Oh, my gosh, yes. I don't know. That's, that is sad, though. Is it still does it take that long? I don't, I can't. I don't know. What

Scott Benner 52:02
this kid doesn't know is that one day, they're gonna have the pure joy of getting on the phone with the faceless person in an insurance company and cursing at them. It is so cathartic, you're gonna love.

Erika Forsyth, MFT, LMFT 52:14
Yes, and yeah, we just, they're, they're excited. And they want it. I get it. Yeah, no,

Scott Benner 52:19
but I just love it. Trust me. You don't know how great it feels to yell at somebody on the phone? Who you don't know and have no relationship to wait till you have. It's a lovely moment. Oh, my God. Have you never said the F word to an insurance company? Erica?

Erika Forsyth, MFT, LMFT 52:31
No, I have not actually I find it the quickest way to

Scott Benner 52:34
get resolution.

Erika Forsyth, MFT, LMFT 52:38
Oh my gosh, society's

Scott Benner 52:39
different. Now people don't accept things as well. But I love cursing at people on the phone. I think it makes things actually, you know, I try very hard not to be in at all confrontational. Like I like things to go smoothly. But when it gets down to it, I think a well placed F bomb gets you somewhere sometimes.

Erika Forsyth, MFT, LMFT 52:58
I'm glad that that has worked for you.

Scott Benner 53:01
Feel better? For a couple? Yeah. All right. Let's finish on a. They're all low notes. So let's just finish off our note. Will someone want to marry me? And can I have a baby?

Erika Forsyth, MFT, LMFT 53:15
Oh, oh, I resonate with that one. As a little girl. I definitely asked that. How I'm curious how old is this child? Oh, if you if it's clear or

Scott Benner 53:31
written, it is not clear. Okay. I can tell you one thing. I've interviewed people, women, specifically, a lot of different age groups that I think wonder this? Yeah. You know, like, is somebody gonna want to take me on as a burden, I think is how it feels. And yes, terrible.

Erika Forsyth, MFT, LMFT 53:49
Yes, no, it's a really normal, the both of those are normal questions to have. And as we know, back in the day, I don't know how many years ago but probably even 4050 years it it was very scary to have children with type one. And we know we know now obviously that that you can and it takes work. The but the relationship piece, I think what the child is kind of revealing by that question is do I am i Is there something wrong with me? Is this yeah, as you said it is am I going to be a burden? And I've had children ask this as well. And we talked about you know that there's no no one is perfect going into a relationship or marriage and that when you find the the best fit for you that they will everyone will figure it out together, you know, and we'll work together.

Scott Benner 54:56
I tell people and I'll tell you I tell my daughter the same thing. Anybody Buddy, who doesn't want to be with you because of diabetes? You don't want to be with first? Yeah, I listen if, Eric if they don't want to, if they don't want to marry you, because you got a ton of college loans that I understand, okay, but but but if if somebody, if it's who it's not, it's not who you are maybe per se but it is something that you that you live with. And so if they're not up for that they're not up for you. And yeah, and I don't think you want to spend a lot of time trying to talk somebody into it to be perfectly honest with you move on. And it's one of the reasons why. Like, I think every question that we've asked here today, I've answered already throughout the podcast, and but I know people can't listen to everything. So I try to have people on all the time who are in great relationships with other people who are supportive of their diabetes. And I do that partially so that you'll get like, wow, he found a woman that loves him, she found a guy like cetera, that these two girls got together, whatever it ends up being, people found each other, and the diabetes wasn't an issue. And and I do think that's the answer to that question. The right person won't care.

Erika Forsyth, MFT, LMFT 56:09
Right? Because ultimately, that reveals more about them, then, you know, if if they are, if that if it's too scary, or too much, yeah.

Scott Benner 56:19
And also, maybe it's not even a judgement of them. It's just something they can't deal with. Or maybe they didn't. I mean, it's hard to know in the moment when you're dating, but there are people you feel like you're in love with who you know, 20 years later, you realize, like, I did really love that person back then. But I couldn't have been married to them for 30 years. Like there's something special about my wife and my relationship. Because I don't know how aware everyone is but like, you're really hard to be in another with another person for this long. It doesn't. Yeah, if a lot of things that you can't even imagine when you're young, if they don't mesh well. It's just it's very difficult. And it's too easy to get out of a marriage. So people will will bail before they even try sometimes. But that's not my point. My point is, seriously, the right person won't care. That's right. That's what I think. So and you'll probably still end up divorcing them for different reasons. So don't even worry about stopping people to talk to her divorced. It's like wanting to isn't it?

Unknown Speaker 57:18
Oh, I don't know. Yeah.

Scott Benner 57:21
Always wanting to be upbeat. I had someone on here recently. I know you have to go by. So I'll end by telling you I just interviewed somebody a couple of weeks ago, who at the end of the interview told me that their family saw you and it was a huge help. Oh, that's wonderful. So I won't share anybody's personal details, because I think that's wrong. But they were very, very complimentary about the time they spent with you. Oh, thank you. Thank you very much. Still big patients in California.

Erika Forsyth, MFT, LMFT 57:50
Yes, that is still the rule. Yes. But yeah, anywhere in California, because we now have the telehealth comfort. So that's a great option. Oh, cool.

Scott Benner 58:00
Well, I will definitely put in your URL here. I want you to know that as I just kind of like highlight something here, we got through what I would consider to be a very small fraction of this thread, which I have been scrolling through the entire time I was talking just now. Okay, and so I just wow, I just got to the end. Now a lot of them might end up being worded differently, but being duplicates of each other. But I really appreciate you spending the time going through this with me because I felt a real responsibility to this thread after I posted it and I did not know what to do. Like I got I really like I there was a moment when I was like, Oh, I messed up. I shouldn't have done this. Like, like I'm not qualified I in my mind. This was gonna be like Jenny and I doing like short episodes about questions. Right. Just did not go that way.

Erika Forsyth, MFT, LMFT 58:53
Well, I'm glad we were able to get through a portion.

Scott Benner 58:55
Yeah, me too. Oh, so listen, at the end. Let's share this with everybody. My favorite place to cry is in the shower. Where's yours?

Erika Forsyth, MFT, LMFT 59:02
Oh, you know, I'm I'm a good car crier. But also the shower. Yeah.

Scott Benner 59:06
I actually think that's good for people to know that. I think that at some point, all this is overwhelming. And you have to just let go of it. Because if you hold on to it, it's just it's, it's debilitating. And it'll it'll impact you in ways you'll never see. So I like getting in the shower and crying. You can do it.

Erika Forsyth, MFT, LMFT 59:24
Yes. Yes, I affirm and support that 100%

Scott Benner 59:30
Okay, thank you very much.

Well, first, I want to thank everyone who sent in all those questions. There are actually more. I'll probably go back and do the rest with Erica at some point. And speaking of Erica, thank you so much for being a great voice on the Juicebox Podcast. Check her out. If you're in California at Erica horsethief.com I'd also like to thank trial net for being a sponsor of the Juicebox Podcast. I know that ad ran a little long, but it's very important, and there's a lot to understand. Trial net.org forward slash juicebox. When they ask how you heard about them, please choose Juicebox Podcast with that drop down box

I hope you have a great day. I'll be back very soon with another episode of The Juicebox Podcast. He need information about the podcast, check out Juicebox Podcast comm you looking for management stuff, go find those pro tip episodes, they begin at episode 210. You're also looking for the defining diabetes series, how we eat afterdark algorithm pumping and all of the rest. Check it out at Juicebox Podcast calm. And don't forget about the private Facebook group Juicebox Podcast type one diabetes, it's completely free and has 17,000 people on it talking about diabetes. Alright, listen the episodes over. But if you want to hang out for a couple more minutes, I'm going to explain to you why I think taking the survey at the T one D exchange is so important. If you don't want to hear it, it's cool. Just push up and go listen to another episode of The Juicebox Podcast. I'm here to ask you to join the T one D exchange registry. And that sounds like a lot something to join. Right. But you're really just taking a survey. Why am I asking you to do that? Here's why. The T one D exchange is a nonprofit research organization dedicated to accelerating therapies and improving care for people living with type one diabetes. So that's a very official statement from them. It's 100% True, but it's also kind of dry and boring. And, you know, I understand if you're not super excited by it. Here it is bare bones. You go to this website, you answer a few questions, it takes you less than 10 minutes. You can do it from your phone, you can do it. You know, while you're sitting on the toilet, if you want to, I don't really care. Although you shouldn't sit too long, because well, anyway, you don't want that problem. Let's get past why you shouldn't sit too long on the toilet and get back to this. The T one D exchange does good work for people with type one diabetes. It's why I took on this thing. They came to me and they said can you help us get people on the registry? I said I could try I don't know if I can. And I've gotten a lot of people on the register, I'm not gonna lie to you a lot. But this is diabetes Awareness Month and I thought maybe, you know, maybe you'd be in the Spirit to help people with type one a little extra. In November, the T one D exchange still needs 1000s of you to answer the survey. Why? Well, because they translate real world experiences into real world solutions. And those solutions make lives easier for people with type one. It's their goal to help type one families through research at the clinical level, through their quality improvement collaboration. And through research at the personal level through their ti 1d Exchange. Now, what's the exchange, you can read all about this, by the way AT T 1d exchange.org forward slash juicebox. But I appreciate you listening to me as I explained it to you. So the exchange is a research study that's designed to gather evidence real world evidence firsthand and to gather it easily and quickly through the survey. The questionnaire can be done anywhere from your mobile device, or you know, like I said earlier on the can if you want doesn't matter to me, it could be laying in bed, or just while you're sitting around at home. And since type one is a chronic condition that people live with their entire lives, participants can complete the questionnaire annually if they want to help researchers understand surviving living with type one. So imagine what this is, is you're helping with type one diabetes research without leaving your home. You don't have to go to a study center or sign up for some long thing that you have to be in for months or travel for. It's a way for you to help right from your house. Now, there may be opportunities later I've seen people on Instagram send me pictures when one girl sent me a picture of herself at the airport. She was on her way to go do a study that she was going to be paid for actually. And she learned about it through the tea Wendy exchange and was thanking me because I told her about the exchange. I can think of another person that I saw online, who is in the middle of a study for adhesives for a very popular CGM. She had a bunch of adhesives all over her and she was testing them. That was the thing that she was getting paid for. Now, not everybody gets paid for things or gets chosen for stuff, but that opportunity does exist. But you won't find out about it unless you sign up. And you know, complete the survey. Now you don't have to do those other things. They might contact you with an email and say, Hey, you want to do it at ease of studying you might go? No. And that's it and no harm no foul. You haven't hurt anybody's feelings. So that's it really it's super simple. It's T one D exchange.org. Forward slash juicebox when you get there click on join the registry today. And then answer the questions. I've done it. The answers are incredibly simple. They're not probing or terribly personal. They're general stuff about living with type one diabetes, and then you finish the survey. And that's it. You've helped them. You've helped people living with type one diabetes, and you've supported the podcast.

Alright, let's go for it. Right. We have all of November. I don't know how many we can do. I think we could do a lot. Honestly, 30 days, what do they say 30 days out in November and April, June and December all the others up 31. I don't really know all the words to that. Not really the point. But I can tell you this. I have a calculator right here. If I take 1000 123 zeros and I divide it by 30 days, 33 people a day and we'd have 1000 at the end of the month. 60 people a day 2000 It's doable. There are so many people listening to this podcast, if just a small percentage of you did this, we'd make a huge difference.

#515 Chris Dudley

In 1987, Chris joined the Cleveland Cavaliers and became the first person to play in the NBA with Type 1 Diabetes.

www.chrisdudley.org

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, welcome to Episode 515 of the Juicebox Podcast.

In the 1987 NBA Draft, the Cleveland Cavaliers chose Chris Dudley. He went on to play 16 seasons for a handful of teams and even made it to the NBA Finals once. He also has type one diabetes, and he runs a camp for kids with type one, called the Chris Dudley foundation. You can learn more about it at Chris dudley.org. Today, Chris and I are going to talk about a ton of stuff playing in the NBA being diagnosed with type one playing in the NBA with type one, what it was like to face Michael Jordan, his camp, and all the other stuff that popped into my head while we were chatting. While you're listening to the show today, I'd love it if you could remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please always consult a physician before making any changes to your health care plan. We're becoming bold with this.

This show is sponsored today by the glucagon that my daughter carries g vo hypo Penn. Find out more at G Vogue glucagon.com forward slash Juicebox Podcast is also sponsored by the Dexcom g six continuous glucose monitor, I want you to go to dexcom.com Ford slash juice box right now where you can learn more about the Dexcom g six and even get started. It'll be the best decision that you've ever made.

Chris Dudley 2:06
My name is Chris Dudley, from diabetes perspective. I got diabetes in 1981 when I was 16 years old, playing the NBA for 16 years and we started the foundation in the Christopher Reeve Foundation for kids with diabetes in 1994, about 25 years of basketball camp for kids with Type One Diabetes. I kid kids from all over the country all over the world really with that kids from globally. And he just 10 through 16 boys and girls and and we've also done a lot of other outreach for for diabetes as well.

Scott Benner 2:50
Can you think back to when you develop the basketball camp originally? What made you do it?

Chris Dudley 2:57
Yeah, you know, so I so backing up so 1981 and really dating myself here, but it's alright. You know, obviously diabetes was in different different spot. It was who's tough. And when you got diagnosed with diabetes, it it was a you know, I tell story that the first thing I asked the doctor is am I gonna live. And by that I didn't mean next week or whatever. But how long? What does this mean? Because at that time, it meant a shortened lifespan. So it was, you know, it just rocked my world. And then it was of course what I still be able to play basketball and got the affirmative on both which which wasn't always the case back then. Sometimes they discouraged athletics activity because of the risk of of getting low blood sugars. And so fortunately, that was changing. That's when studies were coming out and saying activity was good for your overall health, your blood control. seems obvious now but at the time, it was a it was a concern. And so So anyway, fast forward and go through high school, go through college make it into the league, I was the first and only player to play at that time in the NBA with Type One Diabetes. And it was I was almost you almost didn't want to let anybody know I did. But yeah, I really wanted to establish myself as an NBA player and have diabetes kind of be an afterthought versus should we sign this guy because we don't know we can make it right. Once I prove that and and more people became aware that I had in the diet in the diabetes community that I had diabetes, I get a lot of letters from kids or parents. How do you do it? How do you What's your game day route? What do you what do you eat? What kind of insulin? How do you how do you play an activity with with having with while having diabetes. And so I'd always been asked about doing it. Most pro players are about doing a basketball camp get involved with camp. And so my wife, my wife, and I came up with the idea with squids combiner and which have a have a camp for, for for kids with diabetes. And so the long winded answer is that it was really the Genesis was really the outreach from kids and parents asking, you know, and just realizing what a need there was for

Scott Benner 5:40
right. Wait at that time. So, so you're diagnosed in high school? Imagine you're playing in high school, you go to college and play. Is it? Are you just like using regular mph? Did you just kind of shooting insulin in the morning and an evening and kind of eating on a schedule?

Chris Dudley 5:55
Yeah, I'm trying to remember. I think I started off doing that. And then at some point, pretty soon after I went to the mall, I shot a day. Okay, are you taking a shot before? Before every meal?

Scott Benner 6:14
They call it fruit? Now you're getting basil once on a meal mealtime ends? Yes. Did you test very frequently.

Chris Dudley 6:19
I did. You know sometimes better than sometimes more than others. But with with playing with playing sports, you really felt like I had to write. And you know, on game days,

Scott Benner 6:33
I would test as many as 16 times on game day just to really have it dialed in. Right. And so did you. Looking back? I'm assuming now you manage differently. You have a pumper. You still MDI?

Chris Dudley 6:46
I do net. So now I have the Omni pod. So I have the pump. And then I have Dexcom Dexcom. So

Scott Benner 6:55
So now you have a real vision into what's happening. Like looking back. Were you playing at an elevated blood sugar? Or do you not even know? Yes, yeah.

Chris Dudley 7:02
Yes. I think it definitely was. Because, you know, if you're playing, you know, practice is one thing but a games another. If you're playing in front of 20,000 people, you're more worried about going Whoa, going on? Yeah. So So yeah, I definitely do and I would. Looking back, I would have loved to have had a Dexcom or something. I mean, I'd love pump too. But just to know what my blood sugar was doing? Would have been in nano kidding.

Scott Benner 7:33
So I, I asked my son, I was like, what should I ask Chris? When I talked to him? And he was just like, well, you have to ask him what it's like to play against Michael Jordan at some point. And I was like, Okay, I'll see if I'll see if he wants to talk about that. But yes, happy to. Yeah, no kidding. But But staying into the diabetes for a second longer. If you're elevated, like, do you think you were at a deficit? Yes, no kidding. I

Chris Dudley 7:59
do. I think, you know, I took a lot of pride in I never wanted to miss game because the diabetes, I really never wanted diabetes to be an issue. And I felt like, you know, right or wrong, I felt like an almost an obligation for those in the community to show you know, diabetes isn't going to prevent me from from playing and show that you can play in the NBA and, and I felt like I established that early in my career where a couple years where I think I played all 82 games, or if I missed a game. I never missed a game because diabetes. But in doing so. I also know that there was times that I was either worked, you know, borderline wlos. or certainly it may be higher blood sugar. And there were plenty of times you know, I joke around with kids that you know that I never missed a game. But there were plenty of games where I had I was running up and down the court having drank three cans of apple juice or something to get my blood sugar up, right. So it wasn't wasn't always easy. And I think it would have been a lot easier or better today to kind of be a little bit tighter control right? With all the technology and not to mention the speed of insulin increased in in the 90s right it keeps it keeps improving but there was a rapid when we went from Oh, wait from that regular human log or whatever it really Yeah, it really helped.

Scott Benner 9:41
Did the coaches and players know I mean, and by No, I mean, what did you play with some people who flat out didn't know you had diabetes? And did you play with people who knew but didn't pay any attention to it?

Chris Dudley 9:53
Um, well, everybody would have known I think, but there might have been some Who just didn't pay attention?

Scott Benner 10:05
Right? Well wouldn't even understand I would imagine to.

Chris Dudley 10:07
Yeah, I mean, you know, I'm testing my blood sugar in the locker room before we're going out. And so I mean, it wasn't like, so they would know that the person who had to really know and be dialed in was the train trainer, of course. And with coaches, they knew, but I really didn't want them to have to think about it. Think about it. Yeah, that wasn't there. That was on me and the trainer to do that to be ready, when when your number's called. And

Scott Benner 10:35
the fear there is that if they feel like there's a weakness, then there's a reason to put somebody else out there instead of you. Whether it's diabetes or anything. Right, right. Yeah. Okay. Wow. That's a lot of pressure. How did you do that for 16 years?

Chris Dudley 10:49
Well, yeah, you just get in a routine. I mean, it just becomes your Yeah, you're kind of your way of life. Yeah. Yeah. And I think with the coaches, and let me differentiate. In case we have any younger listeners or players is that a number one in the NBA, you have a full training staff. And so having that relationship with the trainer takes that pressure off if you're in high school, or, or younger, or club basketball, or whatever the coach has to know. And be very, very aware of it, right? Because there is no trainer. There's no intermediary.

Scott Benner 11:28
Yeah, so it's you and your parents. Exactly. There still is that pressure, my daughter's going to be 17 this summer, but when she was younger, she played softball, like fairly competitively, meaning that they were like a winner. So away from going to the Little League World Series when she was 12. And she only had one bad low while she was playing. And it was enough, she was at third base. And the inning ended and she gestured to me came through the dugout and said something's wrong. Like that's all she said. And she had a low that was in the 30s and 40s, it took a while to come back up again. But when her bat rolled around, even it like back then 10 1112 years old, I think she felt pressured to go hit because she did not want anybody to think that this was gonna stop her from doing that. And I don't, I'll never get into her head as to why. But I watched her go hit with a blood sugar that was maybe only 70 and had just started coming up and she fought through it, but you could tell something was wrong with her. I wish she was a little older when that happened. So I could talk to her about it. But

Chris Dudley 12:32
and you know, the thing that and that's great point in that. What's tough, too is is you know, with with diabetes is you get that well and yes, you can recover in your blood sugar's back up to 70 and going higher and getting to get to 100. But you still don't feel right, right, you know that the low blood sugar can throw off it, I've found that even exercise now that you know, a kind of a giveaway for me that my blood sugar is going down? Or is my balance is off. I just don't have the same. I can just feel it physically. So it's to your earlier question. Yes, you can you can make it you can play and but but there are, it does affect you. I don't

Scott Benner 13:14
know if you'll want to answer this. But is there ever a time where you're running down the court thinking I shouldn't be out here?

Chris Dudley 13:20
Ah, there was times where I was like, I need a timeout.

Scott Benner 13:27
Somebody foul somebody, I just want to know that you found somebody one time to get a break. That's

Chris Dudley 13:33
well, you know that well. And the thing is, and again, everybody as diabetes knows this is what's so hard about it with playing is or can be difficult is that you're by you still have everything else that everybody else is going through, right. I mean, either we play 82 games, there's times where you have a cold or you don't feel great or you can get a good night's sleep, and it's hard sometimes to differentiate, I feel off is my blood sugar. So when I say I want to timeout it's not always that someone was saying I need to test to make sure because I was I didn't have that confidence that that I was not that I was maybe going in sometimes he tests me like, no, you're fine. It just you just don't feel good. Because people who don't have type one when they feel off their next thought is and I wonder if I have too much insulin I'm about to pass out in front of 35,000 people exactly.

Scott Benner 14:27
Yeah, that's that's a it's a good point. And now would you mind if you know what were your Awan sees when you were playing? Do you have any idea?

Chris Dudley 14:38
They weren't they were two sevens. I tried to get below seven but you know and the ANC is is great in a lot of ways. But the and now we're talking about time and range i think is is more important because with the agency. I would have good agency sometimes but I might have been you know What 50 plus 180? is when you know, I mean, you can,

Scott Benner 15:05
yeah, you can fool the test by having a lot of lows and a lot of highs and seeing it bounce out. I just know that that was the only way that they paid attention to it back then your, your point is 100%, right time and range, less variability. That really is a great measure of health. I was just wondering, I mean, but sevens were, that was probably better than what the ADA was asking for at that point.

Chris Dudley 15:27
Yeah, no, I think so. You know, I, you know, I've worked, I worked hard at it, to try to keep it you know, to stay in range. So,

Scott Benner 15:36
when you're a professional athlete, it just, there's an inference that your body is just that it operates differently than some people's. So do you have to back then were you eating? Like, they like the guys now? Like, the guys now look like superheroes? You know what I mean? Like, you look like a tall man who was athletic when you played like, the guys now look like they could grab you and throw you if they wanted to? Did you eat more specifically? Or was it more like? I don't know, it wasn't like cheeseburgers and basketball, like, what was the vibe? Ah,

Chris Dudley 16:09
it's good. Quiet, you know, that was always a struggle with the, with the trainers and trying to get, they kind of had to balance that out where they would try to get good, it was kind of funny, they would try to get healthy food on the when the planes when you're, when you're traveling or the team meals, and then they found if it was too healthy, kind of like with our kids. It's too healthy. Nobody's going to eat it. And kind of defeats the purpose. So I was, you know, I was aware, but I don't think there was the emphasis that there is today on on what you're eating by

Scott Benner 16:47
on a fine tuning of

Chris Dudley 16:49
what do you know, it's kind of fun. I mean, I played with some guys who did literally like could eat a hamburger before the game and go out and just kill it and you know, kind of laugh about country strong and just right. I mean, what guys are just tremendous athletes. It catches up with the waiter, but they were I couldn't do what they did. But but just I think that's where diabetes, actually is that there are some blessings on diabetes are some advantages and one is you do get to know your body better. And I did go through the process of Alright, what what is my body work better? What type of food is work better with? Yeah,

Scott Benner 17:26
it just occurred to me that over the last couple of decades, as we understand nutrition better, that it doesn't just happen overnight that there is a transition of talking generations into believing differently. And I watched my son's 21 now he plays college baseball, and right up until about a year and a half ago he had that like just here I'll take a handful of this and that and you know you're running out on the field with a doughnut in your mouth almost you know in between games and now as he's getting into 21 years old, he's like, I don't think I should be eating this and I was like yeah, I don't think so either and he doesn't have type one my daughter does but it's just very interesting to see that happen in my mind like you know you always your your head goes to ideas of you know, old baseball players playing you know, with hangovers and stuff like that and and being the best. Alright, so I just have to ask you,

Unknown Speaker 18:21
Jordan,

Scott Benner 18:23
just the so much better at the time than everyone else, or it still stacks up today.

Chris Dudley 18:30
It still stacks up today he to me he's the best player ever.

Scott Benner 18:42
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My daughter turned 17 years old yesterday. She got her driver's license, gave her a cupcake and we went out to dinner. When she woke up this morning. She went to the beach with her brother and some friends. Just like most 17 year olds, she slept in a little bit in the morning and got up but not quite enough time to eat before she went to the beach. She got a car. They drove to the shore. They spent a few hours on the beach and they came home the entire time. I could see Arden's blood sugar on my phone. Why is that? Well, it's because Arden's wearing the Dexcom g six continuous glucose monitor my wife and I could both see Arden's blood sugar on our iPhones. And if we had Android phones, we could see it there as well. Arden can share her numbers with up to 10 followers. And so can you dexcom.com forward slash juice box. One point I sent Arden a text that said just this was that food. And what I was talking about was that I saw her blood sugar kind of go from 191 30. And she said, No. And I said hydrate and Bolus. And she did. And that was that dexcom.com forward slash juice box, the speed and direction of the blood sugar are available at your fingertips on your iPhone, your Android, or you can use the Dexcom receiver. So if you're the person with type one, and you don't want to look at it on your phone, you could use the receiver or you can use your cell phone, the apps are terrific. And sharing with other people is amazing. Seeing your blood sugar, and the speed it's moving in. That's life changing. Please take a second, Get started today. With the Dexcom you will not be sorry. If you're using insulin, seeing your blood sugar in real time is about the best thing that could happen. It allows you to make these great decisions with insulin and with food. And you get to see if things are going right or wrong. So next time, you can say to yourself, Oh, you know what did a unit for that went up to 140 and kind of sat there corrected later with a unit. Maybe next time I'll use two units for that. I don't know something like that. These are made up numbers. But you get what I'm saying right? You see what happens cause and effect, and you get to make better decisions next time. The links in the show notes of your podcast buyer will take you there. The links at Juicebox Podcast comm will take you there but you can always just type it in dexcom.com forward slash juicebox g vo glucagon comm forward slash juicebox. And don't forget he's not a sponsor. But he's doing such a great job on the show today, Chris dudley.org All right. Let's get back to Chris and the story about Michael Jordan. Just like how I let him answer the question I'm do a cliffhanger on you. Bet you weren't expecting that.

Chris Dudley 22:39
I was fortunate I got when I was in college, I went down to work jobs at the basketball camps down at UNC where Jordan went and he would play during summer so I got to play with him during the summer. And then obviously my he's a couple years older than I am but I was played mostly during his time and had a lot of when I was a kid when we played the ball a couple times early in the playoffs. And what Jordan Jordan to me was, you know wasn't is the best player to play again.

Scott Benner 23:16
Yeah, I saw my my son tries to make the point that even the fifth guy on a bad team is incredibly athletic now, and I try to read like I try to retell the best I can I always go to the one story where I tell him. I was watching the game one day and and Michael Jordan turned his ankle completely over, like his foot went underneath of his leg and it was bent sideways and you thought for sure he'd never walk again. And he stood up and hobbled, hobbled, hobbled, hobbled and then ran. And I was like, I don't understand. You know, you ever see Reggie White's knee hyperextend. And then he leaves. It's an amazing video, his knee goes backwards. The way it's supposed to go forwards he leaves the field. If you're a Philadelphia fan, you think I'm never gonna see Reggie white again. And two plays later. He's back out there playing. And I'm just like, I don't understand how that happens. Like now some people just get amazing gifts, you know, physical gifts like that. So you bring him back right now. 25 years old, drop him in the league. He's the best player in the league squared. Really? No kidding. So how do you keep up with that? When you're like when you're everyone else? What's the plan?

Chris Dudley 24:26
It's hard enough. And I think the game has changed, but it was a different. I mean, there's some things that are better today. Probably they're they're definitely the skill level has gone up as far as the outside. There's such a premium on outside shooting. That has definitely changed but the game then was so much more physical. So the counter argument to is could some of the guys today be as successful. Back then, back then, if they're getting ready every time they go. They're laying there. Someone's punching him in the ribs. said they're getting in touch. So, you know, that's so funny you said it's just a different deal. And I do think the one and we've we've kind of touched on it. One huge advantage you have today that would have played out for guys back then is, is the nutrition, the strength, medical, they don't play the same. They take off back to backs they rest more they it's just a it was more of a grind even more of a grind back. Especially in especially when it first came in the week than it than it is today. It's it's a little bit and part of it is the dollars that have gone. Gone into it that are in the league. I think there was a an article about LeBron, and that he spends, I don't know, was close to a million dollars on someone. Massage and nutritionists and cook and this and that. And for good reason. I mean, he's unbelievable. Yeah, he's a freak of nature. And he takes he, he works at it. And so I think that's changed to an extent. It's helped.

Scott Benner 26:09
I guess it's sort of the way people drive a show car. You only take it out on Sundays when it's sunny driving a little slower. And you you played in a time where they're like, Listen, we're driving you every day until you fall apart. Even someone else will come. But even the length of your career. Was that even uncommon back then?

Chris Dudley 26:29
Yeah, no, it's, well, you know, the average. I mean, some guys do it. But the average in the league is three, three years. So there's a lot of turnover. And if you get past 10 Yeah, it was definitely uncommon. You're, it'll be unseen today, because guys come out earlier. So they start younger. When I when I played, there were some players that came direct or a couple years in, but even Michael Jordan was a junior when he came into the league, a junior in college, right? So they're younger. So it'll be just, it will be interesting to see if they go, they can go as long

Scott Benner 27:12
or not. was their club like did you know Ron Santo and Bobby Clarke? Like, did you have a mean? Like, did you guys know? Yeah, or No, those

Chris Dudley 27:20
were my heroes, but I really didn't know him. Okay. And so I was well, where I grew up in. I lived in Philly till I was 12. And so I was a big fan of the Broad Street Broad Street boys. Philadelphia Flyers went back to back Stanley Cups in the 70s. So I was huge Bobby card pant, before I got diabetes. And so when I found out he had diabetes, that was huge for me, and very

Scott Benner 27:45
inspirational. So I grew up in Bucks County, right outside of the Northeast. And okay, and I have to tell you, when I found out Bobby Clarke had type one diabetes, it was only like 10 years ago. And then you think back to how he played. And I don't even understand, that doesn't even make any sense, you know? But I guess it was a different time. I don't know Sam fold is. He's a GM of the Phillies now. But when he was on the podcast, he just told me when I was playing, if you saw me in the outfield chewing gum, I was lower. I thought I was low. And if I was chewing seeds, I thought I was okay. That was like, the extent of what he would do. You know, it's, it's really fascinating.

Chris Dudley 28:22
Well, I remember when I was a kid here in it, the flyers practice would have they'd always have orange juice and like a chocolate bar over on the bench.

Scott Benner 28:29
And that was forgotten. Yeah, that's crazy. It really is. Okay, so how do people find out about the foundation? And what do you want from them? You want them to learn about it? You want him to donate to it? You want him to come out to a to an event? What is it you're trying to do? And how are you handling this with COVID?

Chris Dudley 28:48
Well, so Chris, God, we got to work. Look up the foundation. And and obviously, we're nonprofit and we always accept donations. Because we're putting on camp every year with this would last year would have been the 25th this would be the 26. Last year we held camp, but it was virtual. So and unfortunately this year, we're back doing the same it's either virtual or we may try to do a couple I may go to different spots and meet with kids a few different places. We're trying we're looking into doing that. But we just couldn't hold camp this year because because the COVID because of the restrictions that are in place now. And it just it really breaks our heart that we can't do it the camps normally indoors or outdoors. Outdoors so it's uh you know, back east and you got the Poconos

Scott Benner 29:56
night. Sure.

Chris Dudley 29:57
So the camps up there. It This is Kind of that kind of setting. Okay, and it's an outdoor with bunkhouses outdoor courts, swimming pool rolling hills and you know volleyball court and so it's great. It's a great outdoor bunkhouse kind of what which kind of envision camp? Right.

Scott Benner 30:17
That's amazing. I have more questions if you have time. Yeah, I do. So do you have any other autoimmune issues? thyroid, celiac.

Chris Dudley 30:28
I've been on a thyroid. I take a thyroid, blanking on the name right now but I took a thyroid pill every morning centroid centroid Thank you. No problem. Yep.

Scott Benner 30:39
How long? When were you diagnosed with that? And is it hashimotos? Or is it hypothyroidism? Do you know is it autoimmune or is that? Not?

Chris Dudley 30:48
I think it's hypo. I don't think I think it's the latter. I think it's a I've been on a you know, probably 15 years. I think maybe more than that. I just know, I've been taking this for forever. And it's been with just taking the one pill every morning. I've been.

Scott Benner 31:06
It's been good. So after you got on playing this happen?

Chris Dudley 31:11
You know, that's quick question. I don't even Yeah, I think it was right after it.

Scott Benner 31:14
Okay, when I say Yeah. And do you remember? Where you lithologic hair falling out? Like, do you remember what led you to it? Or just the blood test caught it?

Chris Dudley 31:23
It was just a blood test. They just said you're a little either a little higher, a little? Well, whatever it was, right? We recommend this bill. No kidding. So that's what I have. Other net? No, we have a number of kids at Camp who have celiac. And yeah, different than we would have some diet, things that we do a camp for kids.

Scott Benner 31:48
Yeah, there's there's definitely an increased occurrence of things like that even low vitamin D seems to be really common with people with type one. It's just it's interesting that I like to ask people how about in your family line? any other type one in your line?

Chris Dudley 32:04
Yeah, my uncle. So my father's brother had diabetes passed away now. But he had diabetes from a young kid on so my father when I had to sit and I had the classic symptoms, you know, being incredibly thirsty and having to go to the bathroom and he caught it earlier than probably normally would have. Because of my uncle. And I went went to the drugstore got the I think it was called test tape back then and

Scott Benner 32:34
peed on it. Right? Yeah. Different world that you got on you that fell on your cell phone? What your blood sugar? I know, it's such a different world. Yeah. And it really is something because you live through and had diabetes through a couple of leaps. You went from one insulin to another kind of insulin, you went from one testing to another time. And now this would you? If they told you that they could implant cells in you that would start making insulin again and give you a medication that would stop your body from killing the cells? You would do it? Or would you not? That's good question. What are the side effects? Yeah, right. Well, that's the obvious first question, but I don't know. I'm just my bigger question is as somebody who's lived for this many decades with type one, are you looking to get rid of it? Or do you not think about it like that anymore?

Chris Dudley 33:29
Um, I'd loved it for there to be a cure. And I have to say I'd love there to be a cure not so much for me, but for the kids and for others, because I've learned to live with it. And so it's But yeah, I mean, when my way is, you know, technology is great when it works right when when you get a bad you're in a meeting and the pumps goes bad are you I don't know if the what device you're on. But if you've gone through the doorway, and you've caught your pod on your you know, whatever, or you're on the plane and all of a sudden it's like bad pie, you know, all that stuff that the the nav, I think the toughest part is just the 24 seven of it that you just don't get a break. So yeah, I'd like to be certainly would want there to be a cure. But but but again, I would rather you know, kind of tell I don't think the kids at my camp, I don't know that they're going to live through their whole life with having diabetes. I think we're getting closer and closer. It's amazing. I

Scott Benner 34:33
had there was a gentleman on a couple months ago and there's this drug that right now when you get diagnosed, if they catch you early enough, they put you on this drug and it can hold off the onset for like years. It's fabulous. You know,

Chris Dudley 34:46
in fact I'm involved with a company here up in Oregon that's working on. We have tests a screen that will show Are you at risk of getting Are you going to get Type One wind. Yeah, if you and and before used to be. And they've been trying to do the screen. And this is a much quicker, easier test and what's now where you got it, you got to do it, send it back to the web and wait a couple weeks or whatever get the results. Before it was in I talked with my wife about this, you didn't necessarily want to give the test to your kids when they were young, because they're going to get, you know, take blood and all that. But because there was nothing you could do about it. Now you can do something about it. So that's very, very exciting that you can

Scott Benner 35:33
Are you talking about trialnet? Yeah, sure. They were on recently to a lot of people were they Yeah,

Chris Dudley 35:39
yeah. So trial net, and knowing it's a much bigger their, their pitch for people to get tested is completely different now than it was even just a couple years ago. Because now you have something that you can actually enter was thoughts that you could do certain things, give a little insulin do certain things to kind of prevent it before. But now we know concretely that you can postpone it, which is, which is awesome news.

Scott Benner 36:06
It's amazing. Technology. It's it's some of this newer stuff is the closest stuff I've seen, that seems like it's you uses science that we understand now. And that it feels like it has like an endpoint. It's not just like, we're gonna try this and see where we get to. It's really cool. And But with that, you know, I

Chris Dudley 36:24
think it's I think we're getting so much closer and closer, closer, but you also don't want to be you still got to deal with the diabetes. And you still you don't want to give newly diagnosed

Scott Benner 36:37
people the feeling that they don't have to take care of themselves, because it's gonna go away. Yeah, I tell my daughter, look, I lived with the hope that somebody will figure this out. But I don't expect it. I guess that's the difference. Like I hope but I don't expect my daughter's a once he's been in the mid fives for seven years. Now. She doesn't have any dietary restrictions. Like we've like this podcast, what we usually talk about is how to use insulin in ways that keep you you know, from spiking and having problems like that blank screen. Yeah, it's very cool. But at the same time, I like knowing that people are out there working on this stuff. It's interesting. No, I

Chris Dudley 37:15
do too. And I just throw that caveat, not not to be negative. But it's I remember parents telling me and this is your 20 years ago, or even when I was hanging on, so it was like, well, there's probably going to be five or 10 years. You know, and that was just that's what they said. Yeah. Yeah. So so it's like, yeah, I think we're getting in worthy. Whether there's going to be the magic pill kind of cure with no side effects. And I don't know if they're, or it's just gonna be the technology just gets better, better better. And we're on the closed loop system, or whatever it

Scott Benner 37:52
might be. It's just getting so much better. My daughter's using an algorithm and I have to tell you that we were really good at it prior and there's things to learn when you're using an algorithm adjustments you have to make but I have not slept so well as as I have since she's been on that it to see the algorithm take away basil to stop like, drifting low blood sugar is amazing. And it just it unless you really mess up overnight. She doesn't get low

Chris Dudley 38:20
overnight. And would you mind me asking what kind of what are you guys using? Yeah, Riley wink or anything like that. So she's,

Scott Benner 38:28
she's looping right now. Yeah, so she loops with an omni pod, a Dexcom. And we actually use the orange link. It's a new link that came out that seems more stable for us. But I'm excited to try on the pot five, because it eliminates the link. And it eliminates the need for me to understand how to build an app and keep it on our phone and things like that. And she's going to be heading off to college soon. So I would like it to be more retail, I guess. And on the orange, how is orange different than the Riley's? Yeah, I don't honestly know. I just bought her Riley link was Boston up because she drops it all the time. And and I went to buy a new one. And I bought the orange one to try it. And I'll just tell you that. I just told somebody this in the podcast the other day, but I am in a two story house. And Arden was in the dining room with my wife at the end of the night. She went upstairs with her phone, but forgot the orange link behind but her bedroom is above the dining room. And we never knew it kept it kept the algorithm running the whole time. So yeah, so it's really cool. I mean, and just it's somebody made that that there's a guy somewhere who's like, I'll do this, you know, it's really fascinating, but I am excited to get the Omnipod five and give it a whirl and see how it goes. But yeah, I think algorithms are the future. And I hope everybody who wants one can get one financial Yes. It's really something. Your kids did you ever test your kids?

Chris Dudley 39:55
Ah, yes. And they've no God. I mean No, no, but no diabetes, obviously, and not at risk. Okay. And I

Scott Benner 40:05
guess my last question for you is, because I'm assuming you've been married for a while. He's your wife at all, you're smiling, like as I happen? Is your wife at all involved in your diabetes? Or would you? And to what level? How does that work for you guys?

Chris Dudley 40:22
Well, early on, I mean, she was awesome. And she really dove into kind of understanding that, and you know what diabetes was, and really helping me with diet and diving into that control and making sure it's now you know, a big deal. Obviously, especially before, we've been able to get kind of a tighter control with all the technology we're talking about, but a big deal and even today is worried about low blood sugars when you're driving or different things and really making sure she always made sure I was prepared really helped me with, with with with my diabetes, and not letting me just not forget about it or ignore it. You know, it's great. Because we all go through that emotional, right, I think we all go through it. I know our campers do, but at times where you just want to like, I just don't want to deal with this. But still, she's been awesome. That's absolutely awesome.

Scott Benner 41:26
You know, it's funny, right? About an hour before you and I did this, my daughter's going to school virtually from our house. And I got a notification. So my, my Dexcom is set at 70 and 120. So I got this notification, she was going over 120, which we don't usually see. And I walked in and I was like, what's going on? She goes, Oh, my pod ran out of insulin, I forgot to tell you. And it was just like, like, like a half an hour ago. So he starts drifting up. And that was the thing you were talking about before. I think like, even when you're good at it, and you've been doing it forever. You almost forget the technology, which is a blessing. But at the same time, you know, you see more newly diagnosed people are like, well, I changed my pump at this time. So that it it's ready to be changed. Like you don't do that after a while, you know? No, so she just shut her camera off and stood up and we swapped her pod real quick. And she sat back down and she was on her way again. But yeah, it's a really different world. I don't think that my daughter will ever appreciate how you grew up with diabetes. I don't think she'll have any preference

Chris Dudley 42:21
for no and I, I think rod sail he taught you about Nimrod, Santos. But it's amazing to me that he played a time before testlets. Yeah, it's like, how did you do that? That's just incredible. And, you know, he, someone I didn't hear him tell, but I've heard the story taught of him going up to bat and having double vision and, you know, tell a story. Of course, he just he had to guess which ball to hit. And he hit the right one, and you know, home run or whatever. But it's just, but the fact that what they dealt with people before, even before for myself is amazing. And what he went through is incredibly difficult. And even Bobby Clarke was much more difficult than what I went through is definitely but it got it's gotten better and better and better and better. It's just easier. Yeah,

Scott Benner 43:13
baseball does fascinate me too, because it is such a schedule. And when it's when they're not playing, they're traveling. And you hear guys, like, you know, I don't know how far my son's ever gonna go. But he's, he knows guys that play. And some of them stopped playing because of just like the mental fatigue of it. Like they just can't keep up in their heads anymore. He had a friend that was in the White Sox organization. And the guy said, first of all, I got there, and we were all like the exact same athlete, he says, which is really a bummer, because you're not better than anybody all of a sudden, you know, and he goes, and then it's just every day and then on a bus. And he's like it was it was just hard to keep up, you know. But then, like you were saying earlier, then put Type One Diabetes on top of that. It says it's a hell of an accomplishment. It really is. You know, especially, you know, I don't imagine that they see you as I mean, I don't know, but do you really get seen as a person? Are you like a thing that the team owns that they want to work? You know what I mean? Like, are you are you a tool? Or are you a person and how much? How much of that is your problem? And how much of it is theirs? Right?

Chris Dudley 44:15
Yeah. Well, it's I do remember once, early in my career, wait for the I was in New Jersey and Bill Fitz, which coach training camp I was, I was struggling with my control. And I mean, there were times in training camp where I would go with two days, you're just going so hard where I almost didn't take into it. And you're just because a hard what your body's going through. Right. And it was a different day. They don't do that the same way anymore. Sure. But it was brutal. But I remember I was kind of maybe had to sit out and was just having a hard time with it. And he just kind of pulled me aside and said hey, we pay you a lot of money your professor and he was great guy and he Right here for me, but he said, You, we, your professional, we pay a lot of money. Get out of control. Yeah, figure it out. And it was it was a little bit of tough love. And it was, I was like, Okay,

Scott Benner 45:13
how old do you think you are then? We said Jersey is probably 25. Yeah. That's amazing. Well, you know, I guess. I mean, honestly, do you grow up? This? It's got nothing to do with diabetes, and you don't have to answer if you don't want to, but you emotionally grow up slower? When this is your life? Like when you're doing something like this, it's on a national stage, you're good at it, you're making money? Is there not the need to be mature? through your 20s?

Chris Dudley 45:45
No, no, I mean, I would say. And that's one of the reasons sometimes guys who asked, they don't ask you guys, you kind of, you know, you find out quickly. It's a it's a, it's a job, it's a profession. I mean, it's great. I mean, writing the wrong playing with the best talent in the world playing on TV. It's, it's, it's, it's incredible. But it's a job and the ones you see. And that's why teams always want they want to have a few veterans around, they want the veterans kind of mentor the guy, because the veterans are the ones. Take it cert, you know, they're the ones putting in the time. The successful the most successful players, it's usually not that hard. Obviously, they're incredibly physically gifted, but they're also the ones who put in incredible amounts of time and really treated as a profession. Right. So the answer question, yeah, there are some that are immature, especially when they first come into weed, and kind of falling, you know, have money in your pocket and the attention and all that, but the ones that last are usually turned into a job. Yeah, yeah.

Scott Benner 46:49
It makes a lot of sense. I treat this podcast like a job. I have to be honest. And if I didn't, I mean, these things would seemingly have nothing to do with each other. But if I didn't treat this, like a job, it wouldn't exist the way it does, it would fall apart. Right? It's just, it's crazy. Is there anything I didn't bring up that you were hoping to talk about?

Chris Dudley 47:10
No, I just think with Well, you know, with our foundation, yeah, maybe what I'd like to touch on with the foundation and and you asked earlier, we'd love for people yet to go on or go on our website at Chris duffy.org. And with the camp, and the thing I found is that that the initial thought behind camp was that kids, it'd be awesome to teach kids how to play basketball I have in type one diabetes, and that that is awesome. And some we do and we we teach them about the diabetes we teach them about it's basketball camp. So it's a it's a two in one. It's a regular basketball camp that's wrapped into with diabetes, but the rip, but some of the real value of camp has been getting to know others who are walking in the same shoes. And just how important that is, when I grew up when I got diagnosed 16 sophomore in high school, I really don't think I knew anybody with diabetes that or I didn't have any friends with diabetes. For years I didn't in high school to college, and it can be kind of lonely. I mean, you have friends, but there's certain things you just can't, it's just not the same. And I think that connection that happens there a camp when other kids now our campers, they stay in touch all year, all year long. And they don't with through social media, whatever. But I think that's invaluable, because so often we have, we have a camp, we have on a Thursday night, we have this thing called pass the ball where someone, you go up front, and you kind of talk about something, you hold the ball and pass the next person that comes up. But some of the stories people tell you that breaks your heart of just how alone they are, how they're ostracized for having diabetes, or whatever, whatever it may be, and kind of a teen years are are tough without diabetes, but they can be very tough with diabetes. And so I think that's something for us all to just kind of keep in mind. And that's why I love that you're doing this this podcast. And I love that you're kind of having that stretching the diabetes community, because it's I love talking about I mean, it's helpful to kind of pick your brain you pick, you know, whatever. I think it's so important. So when I say, look, thank you for what you're doing. And you know, that's what we're doing with our campus. Well,

Scott Benner 49:37
I appreciate that. I appreciate that you're doing it. And I'll tell you that when I started this, I really just thought that I was a person who wrote about diabetes. And people would tell me that when they read the stuff they had, you know, better control for the lack of a better way of saying it real quickly. And when I made the podcast, I thought that's what the podcast was going to be about. I just thought it was gonna be about talking about how to use insulin, how to have better outcomes. But I meet people and interview people who love the show, who who already understand how to manage their insulin, and never needed the show for that they needed it to hear another person with diabetes, tell a story, or to realize that other people like them, which is such a trite thing to say, but it's incredibly true. Like, you need to have a community and if you can't find it in person, finding it, you know, like, this is apparently pretty valuable. And I did not expect that. So yeah, it's very cool to be able to bring people together. And I'll tell you, we do i do topics that I don't think most people talk about, there's a woman on here two weeks ago, who's got bipolar disorder and diabetes. So grow on here trying to shake heroin addiction and type one, like you said, there's other things that go like there's real people life, and then you get diabetes on top of it. So we have people on all the time talking about difficult stuff. And, and it would be your inclination to think well, you know, don't have a girl on who's done heroin, like people won't like that. But that's not the truth. The truth is, is that there's a lot of people live in a lot of lives. And a lot of them have type one diabetes, too. So it's very, like I really, I really appreciate you coming on and, and sharing all this with me and, and I just, I appreciate you taking the time. Thank you. Yeah, no, my pleasure. Absolutely. Thank you. So no, great. Hey, Kelsey, can you jump back on for a second? Hello, Kelsey, I'm still recording because you're a fan of the show. You get to talk for a second so you can hear yourself one day when you're listening to this. Oh, awesome. Thank you. That was pretty much it. Do you have type one as well?

Unknown Speaker 51:36
I do. Yeah, I've had type one since I was seven years old. Right. And you.

Scott Benner 51:41
You work with Chris through the foundation?

Unknown Speaker 51:43
Yes. Yeah. I worked full time for the Chris Dudley foundation and help out with camp every summer and we're looking forward to when we can get back in person.

Chris Dudley 51:52
I just wanted to record. Chelsea's got a great story. So Kelsey was a camper. Kelsey, what age did you come in 10. First 10. So long time lifer camper. And then Kelsey met her husband, who also has type one at camp.

Scott Benner 52:07
Kelsey, you met your husband at Chris's camp?

Unknown Speaker 52:10
I did. Yeah. He came as a basketball coach. And I was working there and we got married last May.

Scott Benner 52:18
Chris did that mean you had to pay for the wedding? I don't understand. I got off because it was a nice wedding. COVID wedding? COVID. Oh, no kidding. Oh, she you just got How old? are you now? Kelsey?

Unknown Speaker 52:33
I am 20. I will be 29. In about a week.

Scott Benner 52:35
Wow. Good for you. Are you thinking of having little children? Yep. Someday? Did you? I'm aligned with what Chris was saying earlier about? Some people don't want to know. And some people want to know, do you think you would test your kids?

Unknown Speaker 52:48
Yeah, for sure. It's definitely something I kind of go back and forth on because like you guys were saying it. You know, nowadays, there's the technology so that if you do know, there's stuff you can do about it. I think when I was younger, and I would hear people talk about it and be like, Well, why would you do that, then they just have to sit there and wait for it to happen. But now there's so much technology that I think it would be interesting to see, especially with both parents having type one. Well, Kelsey,

Scott Benner 53:15
I think you might have heard them already. But the pro tip series might help when you decided to be pregnant one day. And I don't know if you've heard the I had Samantha on. So Chris, I this girl came on with type one who I interviewed her in her first second third trimester. And then I interviewed her postpartum as well. And it just so she could talk about what it was like to be pregnant with type one. And I hear from a lot of women that it's helpful. So I'm not rushing you, Kelsey, but you are 29. So let's get

Unknown Speaker 53:44
no, that's awesome. I have friends as well that I think would really enjoy that.

Scott Benner 53:49
That's really cool. Well, I appreciate you. I know Kelsey reached out and Chris, she found me for you. So I'm really grateful for and I would just want to listen Say hi to her. Alright guys, I hope you guys have a great day. Thank you so much. All right. Thank you.

Well, I'd like to thank Chris from the Chris Dudley foundation. Chris dudley.org. I want to thank Dexcom for sponsoring this episode of the podcast. Also, a huge thank you to one of today's sponsors. g Vogue glucagon, find out more about chivo Kibo pen at G Vogue glucagon.com Ford slash juicebox you spell that GVOKEGL Uc? ag o n.com. forward slash juicebox.

Hey, this is gonna be like months from now. But I also recorded with Kelsey, from the end of the episode, she was really great. I don't know when you're gonna hear that. But I enjoyed talking to her very much, in fact, and I think you'll enjoy hearing from her. Anyway, if you're looking for a great basketball camp, and you're out in the greater Northwest, definitely check out, definitely check out check out there, definitely check out Chris dudley.org to learn more about the Chris Dudley foundation. And I'm leaving all that checkout stuff in there, because I gotta be honest with you. I'm not perfect. Sometimes I get on a roll, and I'm like, Wow, I can't believe I got all that out without messing up. And sometimes I say Checkout, instead of checkout or checkout instead of checkout or whatever. I'm a little tired. It's late at night here. I'll talk to you guys soon. I really appreciate your listening, sharing the show. Last week, the show hit a million downloads just for 2021. So in 2021, we were at a million already. That was crazy. The show in total should hit 4 million any, any time. Now. I don't know if I've got a celebration planned around that or not. I'm not really sure what I could do. But I can tell you this. It's because of you. Thank you for sharing. Thank you for listening. Thank you for telling your doctors, doctors, thank you for telling your patients. I can't thank all of you enough. This show would not grow without the fervent support of the listeners. And I know that I wish I could say thank you 1000 times. I'll talk to you soon.

#514 Sharing the Care of a T1D Child

The Psychology of Type 1

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to Episode 514 of the Juicebox Podcast.

Hey, Erica Forsyth is back. You remember Erica, she's a licensed marriage and family therapist who herself has type one diabetes, actually for more than three decades. She specializes in working with people with diabetes, and their families and caregivers. Today, she and I are going to talk about a lot of interpersonal stuff, relationships, managing type one when you're married, or with a partner. What happens when one of you is a little better at it than the other? All kinds of different topics today, Erica has been on the show a number of times. So if you enjoy her, check out Episode 407-440-5479 and 473. You would have thought I would have done this in order but I didn't. Please remember while you're listening that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please always consult a physician before making any changes to your health care plan, or becoming bold with insulin. If you live in California, and you'd like to hire Erica, you can do that. I'll put our contact information in the show notes at the end of the episode.

This episode of The Juicebox Podcast is sponsored by touched by type one, please check them out. They have a mission to elevate awareness of type one diabetes, raise funds to find a cure and inspire those with diabetes to thrive. They have a ton of programs, you can find out all about them at touched by type one.org. Now if you love the Facebook, they're there and Instagram just the same. So Instagram, Facebook, and touched by type one.org. At that link find out about their annual conference, their dance program. They have a beautiful program where they send out information to newly diagnosed people. They call that their D box program. You can go right now and ask for a D box. Listen, it's a great organization. I speak at their events every chance I get. I'm really excited to support them. Don't forget that their programs and services are for those living with the daily reality of type one diabetes. They offer a supportive community with many interactive programs and creative resources designed to empower one to thrive with T one day. If you're interested, there are links in your show notes and links at Juicebox Podcast comm your comms Erica? Hi, Erica. How are you? Hi, good morning. Doing well. How are you? You're doing well even though I ghosted you last time we were supposed to record. Yes, okay. We can still be friends. I'm apologizing in front of people. So that you know, I mean, because I've been told that my apologies do not seem sincere. And so I want to make sure that I'm being sincere. I just messed up. And actually my calendar messed up. But I also know it's important not to blame other things when you're apologizing. So it's my fault.

Unknown Speaker 3:18
Honestly,

Erika Forsyth, MFT, LMFT 3:19
I accept your apology. Thank

Scott Benner 3:20
you. It's Apple's fault. If we're being clear. We have a couple of questions here that seem to go together. This one from Katie, how do I handle disagreements between caregivers over management approaches? And she's sort of got a secondary question here that I think goes right along with it. And she says, How do I handle when one person is better at managing than the other? So that seems like a real interpersonal question, right?

Erika Forsyth, MFT, LMFT 3:50
Yes, well, I think when we're thinking about caregivers, and couples, tried to co parent and co manage their child's diabetes, I would first want to take a step back and assess how is your relationship doing in general, while the diabetes could be significant, interfering and how and how you're relating as a couple? Are there? Were there other issues prior to the diagnosis? I would want to assess you know, your communication, your emotional and physical intimacy? And maybe say Is it is it appropriate before diving into how to manage the diabetes? Is it appropriate to go and maybe do some therapy or some work around your basic kind of communication skills and understanding of how you relate to one another? So that would be my first step. But if you feel like you're in a good place, as in your in your relationship with your partner, and things are going well in, in other areas of your life, then I would look at that then dive into the type One and first maybe understand I think, in your in your world to Scott, that it's just it's pretty natural for one caregiver to kind of be the primary caregiver. And that happens because as we know, it takes a lot of time and consistent work and understanding of all the nuances of how your child's blood sugar goes up and down based on food and exercise and all the small intricacies around that. So it takes time and unless both caregivers from the beginning, are equally spending the same amount of time understanding all of that it's natural for one caregiver to to understand it better.

Unknown Speaker 5:44
Yeah. Sorry, go ahead. I

Scott Benner 5:47
want to ask is this what it's making me feel like is this what would be commonly put under the heading of correlation does not imply causation? The people, people don't really like, I hear what you're saying, like you've now introduced this new thing into your life. But it's not as if we're all wrong walking around in a perfect existence. And now we have a problem. We have a lot of little problems that many of us have learned how to ignore, not necessarily deal with. And now this thing's pushed to the to the forefront. It is not ignorable, right, you can't you can't look away from yours or your child's diabetes, the way you could look away from snoring spouse, or you know, something, you know, even more, you know, impactful is that is that what you're saying here is like, you kind of got to get your ducks in a row before you can tackle this thing.

Erika Forsyth, MFT, LMFT 6:43
If you had the time, and we're able to do that, because I think if there are other underlying issues that you have either been ignoring, or you can still kind of function in that, you know, a normal, you know, quote, normal way, in a in a relationship. That's, that's one thing, right? Like, if you're, you're functioning, you're doing your work, maybe you're you're managing your children, whether you both are, you know, working in home or not are outside the house. But then yes, like this, this pace you can't ignore, you can only ignored, you know, you ignore the dishes ignored, like your responsibilities in the home. Yeah. And eventually, something will happen. But yes, you can't ignore this. But this could be this diagnosis could be the moment when you realize you know what, that we do need to deal with these other issues as well in our marriage or our relationship, so that we can then move forward together, whether that means one person is the primary caregiver of the type one or they you both are, but I would really encourage couples. For example, if they do come to work with me, we will work on the diabetes piece. But often I will encourage them to also go to either marital or relational therapy, to address kind of these other underlying issues.

Scott Benner 8:07
I'm going to say something that you might find crazy. But but that's amazing advice. And if anybody wants my opinion, go do that. But if you're not going to do it, or if you have a spouse who won't get involved, or you just say to yourself, I can't afford that. I know this is gonna sound crazy, but let's reverse engineer your, your understanding of the human mind. How do we put this into? How do we put this into a little tiny box that we can ignore? If we like, you know, I know that's wrong, but don't you think that's what's going to happen? In some cases, and we don't ever give people not you and me, but But in general, we give people great advice in the world, but it's not always followable for everybody, like how do we make it followable? For the people who don't have the time or the inclination? Who might be listening and saying, This isn't because I need to go to therapy. It's because my husband's a jerk. Like, like, you know, when you're thinking that way, like, Is there a Wait, wait, is this the wrong phase? It's like asking how to do drugs safely, although I've done an episode on that. So I guess maybe that is my question. Do you have anything? Like, are you just gonna, you can just say pass, but do you have thoughts on that?

Erika Forsyth, MFT, LMFT 9:22
Yeah, no, I think I mean, I appreciate that question. Because in reality, yes, it does take time, it does take money. It does take if you're going to therapy, and you have multiple children, you have to get there's so many you don't have to get a babysitter. There's so many things to in order to do that and prioritize your relationship and in real life that sometimes is feels impossible. And so I understand that and I get it. So if we were to say, okay, that's not a reality for, you know, this family, then I would then say okay, what's the set? What's the next best thing that we can do, I would say a couple things. I think, if one person is managing, quote better or has a better understanding of how to manage the child's diabetes, then there needs to be maybe a good agreement, you know, within your household of Okay, this person is going to manage the day to day. But at the same time, the other partner has to come to at least a basic knowledge level. And maybe that means going and listening to your pro tip series or having, you know, like, a day in a life of being the kid, the primary caregiver, to understand not only the time and energy it takes to be, you know, watching the CGM all night long and not sleeping, and dealing with the lows and the highs. Knowing that an X like a soccer practice is going to affect your child's blood sugar may be different than the soccer game, like all these small things that you get to pick up on if you are the primary caregiver. And so

Scott Benner 11:04
if I don't want to cut you off, but the pressure yes plays such a big point like the like when you're in charge of keeping someone healthy. There is a there's a low degree of pressure that doesn't go away. If you don't know what you're doing. Like if you understand it, then the pressure comes and goes situationally, but when you don't understand that it feels constantly 24 seven, like you're killing somebody. And yeah, that's not obvious to the other person who's not involved in the management. I mean, I have to say, for me, that's been the biggest leap is to get across to like when you do such a good job, but that came out wrong, but I do a really good job taking care of art and sculpture, so much so that she probably doesn't, and hopefully never will feel the full possibility of impact from diabetes. And because of that her perspective is different. My wife's perspective is different if they lived in a house where her blood sugar's were ping ponging all over the place for the last 12 years, then they'd see it differently, too. But it I maybe it's possible, I make it look easy sometimes. But it doesn't make it less impactful on me. And then you can't get that I don't want to call it respect. But you can't get that understanding from onlookers. I don't know if all that

Erika Forsyth, MFT, LMFT 12:21
yes, yes. So you because you're doing it. So well. And and I hear your concern, saying that like you are you're doing a great job, right? And so then you don't nobody else is experiencing the side effects or the consequences of of the, you know, the roller coasters, etc. And so then people might think, or your wife might suspect, oh, it's not that hard, right. But in reality, we know that the primary caregiver experiences burnout, for sure. All of the things that we've talked about in the other episodes of distress, the burnout, the resentment of I am working hard to keep our child alive, and my partner doesn't understand how hard it is. And then that leads to resentment 100% of the time. So while it might not work in a lot of families to have this, like, equitable, an equal amount of time in terms of CO managing, there does need to be some level of understanding, which will lead to the respect and the gratitude of what it takes to do what you're doing,

Scott Benner 13:32
and the knowledge to know when not to get on what's happening. Like, I don't really know a better way to say that, like, you know what I mean, like, if I'm in charge of the checkbook, Erica and you have nothing to do with it. You don't look over my shoulder every once in a while and go, what are you doing here is like, Look, if you want to be involved in the checkbook, be involved in the checkbook. But, you know, we've been a lot, you know, we've been together a long time here, everything's fine. All the bills are paid God little savings going. I'm doing a good job. Like it's, it's, it would be like if I showed up at your office, and stood in the corner, and 15 minutes into a session said, Hey, Eric, are you sure that's the question you want to ask here? Like, you'd be like, Who are you in this situation? You don't know what's happening. It's, it's can be very difficult not to respond. Like you've been attacked, even if maybe that person wasn't attacking you. Maybe they were just like, interested or thought they had a good idea to add or something like that. But I mean, maybe it's just maybe I'm just letting too much of myself out here. But, but but you know what I mean, you can feel really, like somebody's coming after you in that situation.

Erika Forsyth, MFT, LMFT 14:32
Right? And so then I would say, okay, going back to Okay, how are you communicating as a couple? What are the what are you leading with? What is your tone? How are the questions being asked? Is that why did you Why did you Bolus this amount for that food in that kind of tone? Or is it Gosh, I'm really curious. So I know for next time, can you help me understand why you gave this amount for that food?

Scott Benner 14:55
Those those little sentences are so incredibly important in personal communication, especially amongst people who've been around each other for a long time. And because you just get the feeling like the other person knows what I mean, but they don't, it doesn't matter how long you've been together, it's a very nice way to start a conversation by saying, Hey, I was wondering if you could explain to me what just happened here, because I don't understand it. And I would like to, like you have to put yourself in a slightly, I don't know it, like, professionally speaking, if it's a dominant, and sub and sub position, but you have to be kind of in the sub position for a second, like I find, listen, I'm pretty good at talking to people. And I think that one of the ways you talk to people well is by making them feel comfortable, and letting them feel like they can get their thoughts out. And when you come at somebody, and you're very demanding, that does not ever happen that way. And so I think, even when you've known somebody for a very long time, those words that might feel like the polite words you say, for the guy at the gas station really should be used between people who know each other as well.

Erika Forsyth, MFT, LMFT 16:04
Yes, yes, I think tone has everything to do with, you know, how we receive, deliver and receive messages. Obviously, body language, and words are important too. But tone is extremely important. And so an understanding that if the, if you're the non primary caregiver, there needs to be that level of understanding that my my partner is exhausted, because they probably aren't sleeping well at all. And they are constantly under this level of stress of what you know, trying to keep your child alive. But you aren't going to get that or you won't be able to come from that position of empathy, unless you have this basic level of knowledge and understanding. And so I think going back to that point of how can you integrate your partner into the CO management, or at least common understanding of what it means to manage the diabetes. And I think, you know, some some families that I've worked with, they will like, if one caregiver is away for the weekend, then the other person is forced to learn, right? And trial by fire, maybe the other caregivers helping via text and call, Okay, I see the arrow going this way, let's do this. But slowly allowing, you know, the other caregiver to experience what it's like, and maybe maybe the other caregiver is still the primary one, but to allow for these opportunities for both the primary caregiver to get sort of a break, and the other caregiver to experience Wow, that was really challenging to build in that empathy and understanding. The the other point around that the Yeah, so the tone, to build empathy, and understanding. I'll pause there.

Scott Benner 18:00
No, I this is, you know, because we talked before we started recording, but this is about to happen to me, like I'm gonna have my wife managed remotely for six days or so while I'm gone somewhere. And I'm reminding myself as much as I'm reminding other people, but I wonder too, like, is it folly to like to say to the person who's in that situation? Now, here's another job for you explain that to your spouse, how for them how they need to, you know, be that to make this successful? Like, maybe you should just force them to listen to this and be like, Listen, just listen to that. That's what I mean to say to you, but I don't have time. Maybe like I, because when do you run out of time, like because this isn't your only thing. Like it's funny what we just explained, as a person who was a stay at home dad for 20 years, you take out the word diabetes and put into housework. And we just had the same exact conversation, honestly, like I did things around the house that people didn't appreciate, and everyone who does the dishes, or the laundry or, you know, sweeps under the bed. You know, they understand that, you know, when when your spouse isn't sneezing at night, because there's not a big dust bunny under the bed. Nobody stops to thank you for that. They don't even know what happened. It's just it's the idea of, of stopping yourself from taking people for granted, I guess, right?

Erika Forsyth, MFT, LMFT 19:24
Yes. And, and I think it goes back to get the time and the energy of you know, oftentimes caregivers will tell me like, well, it's just easier for me to do it. So I'm just gonna keep doing it. But we know that that's you can't do that forever. We also know that diabetes is going to go away. And so you're going to continue to come, you know, experienced that pattern of resentment and burnout if they're if you aren't getting any kind of support or understanding or gratitude for what you are doing. And so I mean, if you're if your partner was open to either listening to the episodes that, you know, the pro tips or the basic diabetes understanding, I know for a lot of families upon diagnosis, because when other the other caregiver either has to work or take care of the other kids. So from the get go, it is often one caregiver and the child in the hospital, and learning what it means, you know, going through all of the seminars and classes and education. And so even from, you know, day one, the one caregiver is going to know and understand more than the other because of just of circumstances and not because they're trying to be cruel. Yeah. And so, but then the then the patterns, you know, continue. So I think it's never too late to ask your your partner to say, Gosh, I'm, we're experiencing this, this cycle of, you know, you either you either criticize the way I'm doing it, but you don't really understand how to do it, or I'm feeling resentful, because you don't know how or I'm so exhausted and stressed out that I have no time to connect with my caregiver, because I just need to sleep when I can to say all those things out loud when you're not in the midst of an argument, and then ask for like, Okay, how can we not necessarily fix this, but address this, and maybe it is having some understanding, maybe it is allowing the other caregiver to experience, you know, taking the kids to the park, or the you know, with your child to diabetes to the park, having these small moments of like, wow, that was really scary. When I noticed my child was going below and I didn't have anything to, to bring it up, bring that, you know, we'd have any snacks. So all these things, allowing the caring other caregiver to experience to hopefully build in that empathy, which is what we think what you really want is like empathy, and understanding and gratitude as the primary caregiver from from experience,

Scott Benner 22:01
may I lay down just a little layer of blue collar advice here. And I know this is not going to be politically correct. But if you can't get all that done, coming as a straight guy, from my opinion, if you just said something like if you understood extended Bolus is better, I'd have more energy for sex, that probably moves most guys in the direction you want to go.

Unknown Speaker 22:24
That's, that's,

Scott Benner 22:25
that's what I do. Bottom line, bottom line, yeah, you make me a girl. That's how I attack this. I'm like, Listen, you don't what you don't understand is, and then I say, whatever, you know, floats the person's boat. On the other side. I say there'd be more of that. If there was more of this from you. I think that's good. I think that puts most guys right back in line, to be perfectly honest. And by the way, men who aren't the best advice of this whole episode? Yeah. And men who are swayed by that argument, I don't understand you at all. What do you think of that? I once drove to Delaware to have sex, you understand? I didn't live in Delaware. I was like, wait, what's gonna happen? If I come there? Oh,

Unknown Speaker 23:07
I'm on my way.

Scott Benner 23:09
We just get in the car, take a shower. Here I go, I'll be there in four. Yeah, you got to understand how to move the chess pieces around. But it is such a huge problem. like not to make light of it. But I do want to take I do want to like walk across the courtroom and take the other side for a second. If you're the person who doesn't get it. I always want to say that, you know, because I see people online are always like, my spouse doesn't understand that. And they always add, they always act like they're, it's on purpose. They don't get involved on purpose. But I wonder how many times those people aren't scared out of their minds, or like afraid to do the wrong thing?

You know what I mean? I'm also there are a lot of people who are afraid to act until they're sure. And I know that seems like the same idea. But it's not like there are some people who can't make an action until they have all the answers before they go. And now you're making this a health issue around a child, probably I'm guessing a child that this person loves a lot. And they're probably like, I don't know what to do. I mean, you're keeping her alive, I'll let me stay out of it. And then, and then the human part gets involved where you do realize this is easier not to be involved in this. And that's where it starts to go wrong, when you willfully stay out of it is different than when you stay out of it because you're afraid. There's a difference there, I

Erika Forsyth, MFT, LMFT 24:34
think. Yes. I appreciate that perspective, because I think maybe what could be helpful in that if that is the case, to sit down with your partner and say, can you help me understand why? Like, maybe you've gotten into these patterns and roles, right? But you're realizing it's not sustainable. And to say like have your partner or give your partner an opportunity to just They all have those things to say, Gosh, and I see they're scared, because I don't know how. And I'm fearful of making a mistake. And you are much better at it than I would ever be. And I don't, I don't want to try. I don't want to mess it up. And I think that would be helpful to for your, for the primary caregiver to to hear that and maybe have some empathy to have like, okay, maybe I've just done it all. And it's easier for me to do it. But you know, I'm experiencing all these side effects. But my my partner may want to may want to try, but there's fear or there's Yeah, it didn't know. And then that fear has led to Well, I just, I don't I don't want to do it. Well, now what about any any? Yeah, go ahead. And

Scott Benner 25:50
what about in a more? What's the word? What about when your partner is actually a bad actor? There's a question here, I'm not gonna attach the person's name to it. But it says, What if the other parent pretends that you don't exist will not help you or give advice without making you feel like a horrible parent that is killing their child, I guess what I'd like to know is how to get this person to help me with how they manage our son, which he seems the when he has so much resentment for me that he can't get over it or put it aside. So this sounds like a scenario where one person wants to help, does not have the tools they need. And then the other person is just is just crushing them every time they come at them. You don't know what you're doing, you're gonna kill them. Like that kind of thing. And I have to tell you, this message is not gender the way you would expect it today. So So what if you've got a bad actor in the situation? Like, what's the I mean, that's a bigger difference, like, how do you fix it? And I guess, when do you say, the rest of my relationship? I'm happy with this part. I'm not happy with I guess not even just around diabetes, like At what point you just, what's what what I want to say like, what do you When do you just accept people's flocks? So there's two questions.

Erika Forsyth, MFT, LMFT 27:14
Yeah. And, and this question, yeah, and I understand that. So the one one parent has the understanding of how to do it. And the other parent wants to know how, but when the when this parent tries, the other, the primary caregiver, kind of shames and ridicules and B raids his other parent in terms of like, you're not, you're doing a terrible job, you're going to kill our child,

Scott Benner 27:44
is it a power? Is that a power move?

Erika Forsyth, MFT, LMFT 27:48
It feels, I mean, from this particular question, it feels like there might be some other issues going on. In in the marriage, I'm not I can, I don't know, this scenario, I don't know this person. But it feels like if there's so much power, and there's shame, and there's. And there's obviously there's resentment here, because the one parent knows how to do it well, and is angry, it feels like there's a lot of anger to underneath this of, you don't know how to do it. And if whenever you try, you mess it up. And so it feels like there's either some, you know, on, on either felt or expressed anger or sadness, even around, not to make it all about the sadness, but it feels like there's some other underlying emotions underneath this. And I think if this happens, and I've written, I do read a lot on you know, on the, the Facebook group that these, these kinds of things happen. And if it's to the point where it's so contentious all the time of whenever one parent wants to try to help, I would highly, highly encourage, you know, marital or relational therapy, because I feel like it might be difficult to get to this to the issue of the diabetes unless there's some rebuilt like there's, there's obviously a violation of either trust or love or connection. It feels

Scott Benner 29:20
like the one person is almost gleeful that there's something to to come at the other person with, like, oh, now I've a really good reason to call them names and tell them their bad stuff. There's, I mean, do you get that vibe from that a little bit like, Oh, just it's an opportunity. Like, I'm a bad person, I'm doing bad things to my spouse. And this is a great opportunity for me to do that. Like I don't know why someone would want to do that. But if you wanted to, honestly, your don't know how to handle our kids diabetes is a great way to make somebody feel terrible. Yeah, yes. Usually, I think the way I think of them, huh? I don't think you think about people the way I do.

Erika Forsyth, MFT, LMFT 30:05
Well, I like to give people the benefit of the doubt. And usually when we're lashing out, and we are shaming another person, because they aren't doing it the way we think we should do things, then I feel like there's some other some something else is underneath that

Scott Benner 30:21
Healthy People don't do that to each other. What's that? How a mentally healthy people don't do that to each other? Is that right? Or no,

Erika Forsyth, MFT, LMFT 30:30
I would say maybe people who are necessarily struggling with this, when you are communicating in this, in our you know, with with type one, your one person is going to be fatigued, and unstressed. And so it's hard to operate and communicate and be mindful of your tone and all that. So I think acknowledging that, but not excusing certain behaviors, I think when you are at this kind of crisis moment of we cannot connect on how to manage our child's type one, to have to sit down and try to find moments when you aren't actually heated, to be able to share your experience of how you're how you're trying to manage the type one, when you're not trying to manage the type one, if that makes sense.

Scott Benner 31:18
Yeah, you know, when I see that become problematic. So first of all, I'm gonna flip flop here for a second. I, I say all the time that you can't let yourself get exhausted because you do not notice it happen. And the detriments from being exhausted, are many they're varied. They go through your life, and you do not know you're doing it. Sometimes you are genuinely lashing out at people and not even aware that you're doing it. But I've always been, that's the thought I've always had in the back of my head too. Like, this isn't a conversation for now, then the problem becomes, when does that conversation? Yeah, and you know, like, and you think, oh, at the end of the day, you mean, at the end of the day, Erica, when you get in bed, and we're both reminded we're not gonna have sex with each other, because we're so pissed, because that's not a fun time to talk. And then you sit there quietly, and you're like, I'm gonna bring it up, this is a good time. And then you hear the CGM or something like that. And I get I get just finding. This isn't just around this idea. But time out time, like pause time is super important. And incredibly difficult to create.

Erika Forsyth, MFT, LMFT 32:23
I think yes. Yeah. So, so challenging. But you, I feel like you, if you want to make changes and how you communicate and relate with your partner, then you have to make certain sacrifices and prioritize. So maybe it's okay, we're not going to carve out an hour, we're going to carve out 10 minutes, and we're gonna agree to the date and time. And then you're both prepared. And whether maybe you put your whatever you need to do to prioritize that 10 minutes or 20 minutes. And follow through on that. Because then, if you aren't making these priorities, these times are these moments to connect about the issues that are going to continue. Yeah, then the issues are going to continue. See, I think that you both need to be on the same page. Yeah, I

Scott Benner 33:14
think that's the most important thing that's been said so far, is that that you're not going to get to any of this inside of another situation. And you really are going to, like, you know how they say, you know, what do they say save the first 10% of your income bank before you pay your bills, pay yourself before you pay your bills? I think there there's something to that, like, you know, you can look at each other and go look, we're obviously arguing a lot, things aren't going well. You're yelling at me, I'm yelling at you. Maybe you're not yelling, maybe like, Look, I'm mad at you, I don't even tell you. But we we're not going to be able to do that. Now. We literally need to put on the calendar. A space and time. This is when we do it. And we sit down and just agree that you can't let anger into this moment. You can't bring your grudges in here. I'm gonna say how I feel you say how you feel. And the goal has to be for us to find middle ground. And and not to pile one issue on top. And I would think one issue at a time. Like don't go in with a list. You don't I mean? Am I wrong? Like there's times when I say things and I'm like, at some point she's gonna tell me I'm an idiot. Is this the moment?

Erika Forsyth, MFT, LMFT 34:21
No, I think yes. Don't go into a list and stay in the emotion as best you can around what you're experiencing if I mean if you were trying to work on connection, because if you don't feel connected, it's hard to problem solve. And so, you know, I feel I feel exhausted, I feel resentful, or I feel like I doing it all by myself. And then the other person is like, Well, I I don't know how or I feel fearful or I feel like you never get them to give me a chance. If you feel like you can't get through those types of conversations, then that would be another indicator of like, maybe We need to go back to and not unlike not in cats, you know, therapy, but maybe it's like two or three, check in sessions with a being someone

Scott Benner 35:09
moderated conversations, right?

Erika Forsyth, MFT, LMFT 35:11
moderating helps you communicate and helps you rephrase certain things, being mindful of your tone your butt, all those things. So I think just understanding when I'm when I'm suggesting marital therapy, it's not necessarily, you know, go and do try and fix all the things, it's just maybe going back to some a couple sessions of basic communication to help rebuild that connection and kind of rebuild that trust. Yeah, we don't you guys are in it together. Yeah.

Scott Benner 35:39
Not everybody needs to be torn down to the bad thing that happened to him when they were six and a half to get to it. Right, right. We're not, you don't need everybody to go to see doctor, it doesn't have to be Freudian psychology, I guess psychiatry is saying, right, right. Go to therapy and, and have somebody there who hears who can hear in your sentence that you're about to stirrups and stop you go, right. Yes,

Erika Forsyth, MFT, LMFT 36:01
the objective objective listener who can help guide the conversation. And, and I think that could be really beneficial. But going back to, you know, your the first point was, you know, well, we just can't we don't do enough time to that, then maybe start smaller, start with the 10 minutes on your calendar. And then and be respectful of the time. So okay, 10 minutes is done, or whatever the time that you've allotted, and then schedule out the next time and knowing that you're not going to fix everything, that first connection, you know, that first calendered conversation,

Scott Benner 36:36
I ask you a question, that it's a start, that might not feel like it fits here, but in my mind, it does a little bit. Just generally speaking, gender broken out over gender lines? Do we have different expectations? Like, are men's general expectations of a partner different than that of a woman's expectations of a partner? And is that how a person can be doing what they feel is the best they can? And it can somehow ring hollow to the other side? Because it's not what you're not doing the thing that the other person is actually looking for? And there's no way to know that. Because you're doing the thing that if somebody did it for you, you'd be thrilled about that was convoluted, but did you understand what I meant?

Unknown Speaker 37:20
Right? Yeah.

Erika Forsyth, MFT, LMFT 37:21
But I, I wouldn't, I wouldn't break it down by gender, I would break it down by personality by how you were raised. Maybe you're you're you're making choices and doing things by your own personal experience. And And oftentimes, we either feel like how how you were raised is the right way, or you feel like how you were raised is the wrong way. And you're going to do the opposite, right? But I feel like we often we function out of that. Society, even break it down by gender, but

Scott Benner 37:52
Well, okay, I was wrong. See, it's good. I this is why I like you, because you call me out. But so but the idea of like, I'm doing the best I can, and oh my god, I wish someone would treat me this way. And then you don't get it back. Like meaning like you're like, oh, it didn't land. You know what I mean? Like the person I was trying to help is just completely left hollow from this. I don't know what to do next. And even it's simple to say like, you can ask that person what they want. But sometimes people don't know what they want. And or sometimes they have trouble telling you what they want. It's theirs. Or should people not be should we all just live isolated, ARCA? Is that what we're learning?

Unknown Speaker 38:37
Okay, you

Scott Benner 38:38
live in our cave, and then just come out for sex day and then go back in the cave again? Is that what this should be?

Erika Forsyth, MFT, LMFT 38:44
Oh, my gosh, that would be so sad. No, we are we are we are relational. I think we want to be we want to be acknowledged. And in that we can also acknowledge others, you know, for what, for all that least, that's been seen and done.

Scott Benner 39:00
You said something at the beginning, that I wanted to kind of just kind of end on here with this conversation if you think we're done. But you talked about like lose the loss of physical intimacy. And is that and is that an easier way to mend fences than talking? Like if you've lost a physical connection can leaping back into that or trying to fix that? Is that easier to fix than talking? I guess is my question.

Unknown Speaker 39:31
No,

Erika Forsyth, MFT, LMFT 39:33
gosh, I think what depending on the the the couple, one, one party one partner might feel like the reason why there isn't the emotional intimacy because the physical intimacy is lacking, right. And the other partner might feel like Well, I don't want to be physically intimate because I don't feel emotionally connected with you.

Scott Benner 39:57
Well, that makes sense.

Erika Forsyth, MFT, LMFT 39:58
And you could come to a you know This impasse right, because one person's needs aren't being met and the other then that they're not going to give the other person the other needs. So it's going back to understanding what are what are your partner's needs? And off? Maybe it is it can we need to. Some one needs to give a little. Whether the partners like holding out to feel emotionally connected before before they feel comfortable physically, or,

Scott Benner 40:27
like it didn't need to be I know, because I joke around you probably thought I met like swinging from the chandelier. But could it just be like, holding hands or like touching someone on the shoulder when you walk past them? Or just giving the other person the feeling like you're not avoiding them? Like, you don't mean like, sex, it's got to start somewhere. And because if because the stuff we're talking about, is, is not intuitive for the people for people sometimes. But like, you have to move in the right direction, or you continue to move in the wrong direction. And like me, I just feel like you have to fight upstream sometimes, and maybe just holding someone's hand or sitting next to them while they're watching television or something like that. would go a long way to making another person feel comfortable. I might be wrong. I'm just

Erika Forsyth, MFT, LMFT 41:11
No, no, no, you're good. I think starting Yes, starting small and we don't, if you feel like there has been zero physical intimacy, and one partner is feeling like there's no way I'm ever going to ever want to have sex with this person until we get to this spot emotionally. To go back yes to saying maybe my partner's love language is physical touch and intimacy. So how can I help bridge that that might be an easier way, as you said, just start smaller with the small touches gestures. And that might lead to both of you then feeling more open and ready to have some more emotional intimacy, conversations, communication. So I think it just depends on what knowing knowing your own, quote, love language and your partners. And then being willing one, one person often has to take the first step. I'm just

Scott Benner 42:09
saying those old touches charging those old Tom and Jerry cartoons when they had to get past the Bulldog, they throw steak over the fence. That's all I'm getting out here. And and I listen to the rest of the reality of what you just said, I don't not understand that. I know a person might not want to be intimate with somebody that they don't feel comfortable with. That obviously makes 1,000% sense. But I mean, once you're in it for a while, once you're married for 10 or 15 years, and you see things you're just like, wow, none of this is going the way I want. I mean, are you just what do you just riding it out? Like it just feels like you're just climbing higher and higher on the Titanic try not to get wet. You know, it's gonna happen eventually. So, try something. You know what I mean? I don't know. Yeah, I

Erika Forsyth, MFT, LMFT 42:56
should try something being open to give, you know, trying some intervention, trying some gesture, to to make a change. Because as we know, we're gonna, we're not going to change, things aren't going to change

Scott Benner 43:10
stuffs not just going to magically get better.

Unknown Speaker 43:13
And

Scott Benner 43:14
even that like feeling of like, oh, I'll get mellower. As I get older, it's you'll have too much resentment at that point. And won't matter if you don't have the piss and vinegar to fight anymore. You're still not going to like the person you're looking at. Because you're going to feel like you wasted time or life or I don't know, you got to do something is how I feel about it. Like you have to try something. And, and I do think the idea that someone needs to be the not the bigger person, I believe in the intent of that phrase, but not the words of that phrase, if that makes sense. If someone has to go first, if someone's got to swallow hard and go, Alright, fine. I'll do this. Like, I'll be the one and and do it with a lot of joy not not angry, you think begrudgingly right? You can't be progressing about it. That's all I fixed

Erika Forsyth, MFT, LMFT 44:00
that there. But there's hope i think you know, just being being hopeful and holding on that remembering go I think if you're at the place where you feel hopeless to go back to remembering how you first met as often this is like a and I know we're wrapping up here but maybe it's your you don't when you scheduling that time together to not first address the issue at hand but to reflect on how you first met, the feelings doing you you had and the experiences you you created together to go back and remember remind yourself and your partner and and reflect together to maybe go back to the beginning could be a place to start as well to kind of reignite that sense of hope.

Scott Benner 44:47
How much value is there in being reasonable about who you who you're with to like At what point do you just say, you know, maybe this isn't what I was hoping this person was going to turn into but If I'm being honest, this is who they are, they're being really consistent. Like, at what point? Can I say I love you. I don't like this part about you, but I love you. And I'm gonna stop focusing on the thing I don't like and and see the bigger picture. Like, I don't know if that's wrong or not like I'm genuinely asking like, at what point do you not like, expect somebody to be perfect and say to yourself, there was a time when that, you know, picadillo didn't bother me. And now it's the only thing I can look at.

Erika Forsyth, MFT, LMFT 45:29
Mm hmm. And I think yeah, if you were, if you were in that place, and trying to figure out how to come to that place of, of acceptance, embracing who your partner is loving that your partner, then maybe that's the time for you to do some own, like reflection to whether that's, you know, by yourself through journaling, reading books, therapy, to kind of get to that place of can you do that? Do you want to? And can you get to that place of, of acceptance? Yeah,

Scott Benner 46:03
I want to be clear that I'm just trying to talk through this, like, I genuinely don't think like, if it comes across, like, I think you should, you know, have a have a whiskey and water at the bedside at the, you know, at the table with the newspaper in his pipe, and it's 1950. And when he comes home, you rub his feet, put on his slippers, and then go flop on the bed till he's ready to bang on you. Like, I'm not saying that, like, I really am not trying to put that out there. Okay, like, I seriously don't think that I don't have those thoughts about relationships. I just think that it's, it's hard to see the other person's side. And sometimes it's, it's just, it's, it's difficult to, in this conversation, this kind of conversation where I'm trying to play, I'm trying to argue both sides while you and I are talking, that it I don't want people to think like, oh, he just thinks that women should you know, be barefoot and pregnant? Like, I don't feel that way. And I don't. And I don't think I didn't pick up. Yeah, I'm glad I just now I'm nervous at the end here. Because we're talking about Jesus, there's somebody out there right now is like, I'm not just gonna have sex with him to shut him up. But I'm not saying that.

Unknown Speaker 47:10
I genuinely,

Erika Forsyth, MFT, LMFT 47:12
I think I mean, I think bottom line is that, you know, marriage or relationships, it takes work, and, and you got to be willing to do the work. And then when you integrate a chronic illness into the equation, it's going to take even more work. And I think, oftentimes, it's hard to it's hard to do the work. It just is

Scott Benner 47:38
there, there are close to 90,000 scholarly articles that come back if you google divorced and chronic illness or something like that. So this is not a new problem that you're having. I think that's important to know that, that people could feel like oh, my God, this is it. Like I was bad at being a spouse, or I picked the wrong part. If you think that most people aren't going through this, you're out of your minds, like like this. Yeah, this is everybody's life. Nobody, nobody gets away with this. They just find some people are just better at pretending I always say the happier people look more foolish they are. So

Erika Forsyth, MFT, LMFT 48:20
probably sometimes, too, but I think it's just it takes Yes. I mean, that's a very true thing of, you know, divorce within, or as a result, or a part of, you know, living with a chronic illness or having a child with chronic illness. And I think just knowing the Yes, that you're not alone, that it's, it is challenging, and it does, it takes it takes work on top of the work that you're doing to to keep your child alive. Yeah,

Scott Benner 48:52
I have a very pragmatic approach to like happiness. I don't expect to be happy every day. And I even expect that there could be days that turn into weeks where nothing that I would, you know, think of is like really super exciting. And something I'm glad to be doing, you know, might happen, I might get stuck in a work cycle. It's happened to me over the last couple of weeks, like I've had to, I've had to prepare the podcast. Instead of preparing a week of it, I've had to prepare three weeks of it to cover my absence, right. And so I've been working like crazy. So I've been getting up working, going to sleep getting up working, like I've over and over and over again. And if you know, I've heard no lie, I've heard 15 hours of this podcast in the last five days, like editing and doing things and I've said, you know, learn more on the pod.com forward slash juicebox more in the last 48 hours than I've said it in like three weeks. So it's not fun work. But I also think that way about life, like I think if I live I don't know if I figure if I live 80 years and the first 15 kind of don't count cuz I don't really remember, I'm so much so you know, if I've got 60 years in there, and 20 of them are terrific, and 10 of them are pretty good, and five of them are alright, and 10 of them sucked, and five of them were terrible. When I get to the end, that's not bad to me, like, to me, that makes sense that every day is not going to be a carnival. Now, when they start happening, long stretches, obviously, that's a different problem. But I mean, I just don't, I don't have a happiness expectation, I'm happy to be happy. And there are plenty of times that I'm happy. But I'm not sad when I'm not elated. Is that healthy? Or am I fooling myself into accepting too little?

Erika Forsyth, MFT, LMFT 50:40
Well, I think what you're saying is, you know, life life is it can be a grind sometimes. And, and accepting that and working towards it, and you're working towards something, and you're doing something that you enjoy, are passionate about, knowing that it life is going to ebb and flow. And so I think that it's having it's a realistic perspective of, there are going to be hard moments, they're going to be moments that feel just kind of ordinary, and they're gonna be moments that are great. And to accept that, you know, those seasons don't last forever. Just like, you know, most emotions don't last forever, they come and go. And I think that being able to kind of live in that. And through that is, is where you're at peace. And it takes it takes work, I'm sure you know, you've worked to get there emotionally,

Scott Benner 51:29
yeah, things can and we'll get better like judging your whole existence by the bad thing that's happening right now, in my mind is a mistake. I, I love there are people on this planet that I love more than myself. And I've had amazing interactions with them. Sometimes just days, after they've said something to me that I'd think oh, well, I'm never gonna see this person again. Or this person hates my guts, but they're just they could be also going through something and likely are, I just don't, I don't give up. Like, I just think like, this is what it is. And we just make the best of it every day, and some days will be better than others. I just want to give people hope, especially when you find yourself newly diagnosed, or you're in that situation where right now you barely understand what's going on. But your spouse really doesn't understand it. Like it, it's genuinely not gonna stay like this forever. And you might look back on this time and wonder why you were so well not wonder what you were so upset about, you'll know what you were so upset about. But you'll be you'll, you'll think, Wow, I can't believe we got out of that I'd never expected to leave that moment. But you can and

Erika Forsyth, MFT, LMFT 52:36
you've likely right. But when you're in it, and you're in that newly diagnosed stage and haze and shock, I mean, it's it's hard to access, or even comprehend that whatever. And that that particular stage. So that's why you need somebody

Scott Benner 52:50
to tell you challenging, that's why I said it, because you need somebody to tell you, this isn't going to be like this forever. I mean, the way I usually put it is diabetes is hard, it doesn't get easier, you just get way better at it. And that makes it feel easier. And and you You shouldn't make the you shouldn't you shouldn't worry about that distinction. Because you know, you can do hard things and you are going to do hard things and it's going to be around diabetes, if diabetes, you know, I that's going to be the hard thing that you're going to do. And you can like get some help. You can do it. It's and if you don't understand, like you said, you know, earlier Erica, like referenced like listening to some of the protests, but she's not just like butter and my bread. She really thinks that like you just need somebody Yeah, go find something that's valuable. Like to me, if you have a spouse that doesn't understand those defining diabetes episodes are digestible. They're short, and they at least give them context. And then maybe some of the things you say to them, they'll have context for because you might be using words they don't even understand. And they're just nodding along. Try not to look like an idiot, you know, you don't know. Yeah, people are complicated. Disgusting. The whole thing's a mess. Alright. Life is hard. Yeah, there you go. But it's not always hard. And it doesn't have to be this hard. Like sometimes you can you get through it or you make it better yourself. You are really kind of the master of your own domain. You know, you can I think that's a Seinfeld episode, which is about masturbation, which is not what I meant. So let's just keep moving. But you can you can be the master of of your, what am I looking for here? What's the word I want? You to future? You're out your perspective. Yeah, you have anything of all these things. You can change the way you think about stuff. I listen. It's not apples to apples, but I grew up pretty broke. You know, and my life wasn't terrific. And there are a lot of times you had to get up in the morning and just I mean, if you want my secret, which is no secret, I am eternally hopeful. Like you will never meet a person who wakes up, reset more than I do. If something goes wrong today, I will wake up tomorrow with the same enthusiasm I had before that bad thing happened. I don't see another way around it. I don't I, I don't think I could carry all that baggage. You know what I mean? So I just don't i don't walk with the weight of the world on my shoulders. I I don't believe I could do it. So I just I reset my hope I am a very hopeful person. And I wake up every day, expecting things to go well. And if they don't, it's okay. I'll try again tomorrow. That's pretty much it. But yes, it's good to healthy. Thank you. First, let's thank touched by type one, again, you can find them at touched by type one.org. You can also find them on Facebook, and Instagram. They are a wonderful organization. And all they really want is for you to check them out. Take advantage of their programs. I also want to thank Erika, and you can find out more about what she does at Erica foresight.com. That's erikforsyth.com.

There's so much music left. I'm having a hard time sitting here quietly. I'd like to take just a moment to thank you all. I know this happens frequently. But it happens frequently because of how great you guys are and how supportive you are. The podcast keeps having months that are better than the previous month. Meaning there are more people downloading and streaming the show this month and last month, more last month in the month before that had record days record weeks. For the past four weeks in a row. The podcast has grown pretty substantially. It's it's astounding actually. The reason I'm telling you is because this is 100% because of you. Absolutely. When you leave a great review, wherever you're listening, rate the show highly tell somebody about it. Tell your doctor about it. Doctors when you tell your patients, it just keeps growing and growing. And the message keeps spreading farther and farther. I am very, very, very, very grateful for how much you all put into the podcast. So thank you very much for your efforts for listening for downloading for streaming however you listen. But mostly for sharing the show. It is a really big deal. I appreciate that you're listening, and I'll be back very soon with another episode.