Diabetes Unscripted
Creating a community for folks living Type1 diabete to learn and grow from one and other. Because until there's a cure there's a community.
Diabetes Unscripted
S1E5: Navigating Relationships and Living With Type 1 Diabetes
Imagine navigating the intricate tapestry of relationships while managing type 1 diabetes—stories of triumph, humor, and resilience emerge against a backdrop of sugar-free pudding misconceptions and the steadfast support of loved ones. Join us as we unpack the challenges of explaining diabetes to others, celebrating the empathetic bonds formed through shared experiences. You'll hear tales of overcoming hurdles, like managing blood sugar during intense physical activities, and how these victories contribute to personal growth and deeper connections.
In a world where diabetes can be misunderstood, we highlight the importance of community and the value of a supportive environment. Our episode takes you through the daily balancing act of discretion in professional settings and the comfort found in sharing stories within the diabetic community. Whether it's on the ice refereeing hockey games or in the office with understanding colleagues, we showcase how openness, combined with a robust support network, leads to gratitude and learning.
As an endocrinologist living with type 1 diabetes, the conversation broadens to explore the profound impact of diabetes on personal and professional relationships. We discuss the educational opportunities that arise from dispelling misconceptions and how sharing our stories can lead to acceptance and support. With insights into patient relationships and the significance of combating diabetes stigma, this episode is a heartfelt reflection on the enriching journey of living with type 1 diabetes, underscoring the preciousness of life's moments and the strength found in understanding one another's battles.
You're listening to Diabetes Unscripted, where we are focused on creating a platform for people living with diabetes to share, learn and support one another, Because until there's a cure, there's a community.
Speaker 2:This is a pretty big question for me because I feel like my comfortableness with diabetes has really ebbed and flowed since I was diagnosed. Who I wanted to tell and who I wanted to not know, and if I even wanted to bring that into conversation. I feel like one of the most important relationships to kind of go over in this is my relationship with my boyfriend, who we've been dating for four years, so that was definitely difficult to explain that I have type 1 diabetes and it's not the diabetes that you're probably thinking of. Obviously that's really hard. I feel like in college and as a young person, a lot of people automatically assume that it could be different diabetes and I think that was probably the hardest part. But we've had a lot of really good moments, like when I need to take a break from whatever we're doing because I'm having a low blood sugar, or, hey, I've always got fruit snacks on me. So if you want to help yourself, go ahead. I don't even like them. Stuff like that, I think, is really special.
Speaker 2:Another story would be currently in my CNA class. We were practicing with feeding feeding and the feeding option was pudding full sugar pudding usually and my teacher didn't understand that with type 1 diabetes. It's not, you can have sugar. Like it's not something that you can't have sugar. So she specifically got me sugar-free pudding, which was not something I had even said. I think I just told her like hey, I have diabetes, so I have to wear an Apple watch and this isn't a phone on my waist, it's a pump. But she definitely did that and so I had to kindly say okay, I'll take that, when I could have totally had the original pudding.
Speaker 2:But I think a lot of people just think that they know what's best for you and that can be tricky sometimes. But then a lot of other people I've noticed, like a lot of my professors as a biology major, do understand the mechanics behind diabetes. So that is really comfortable for me because I know that my genetics professor understands that I did nothing to cause this and I don't think she looks at me differently, whereas I feel like a lot of other people might just assume, oh, you did something. And like my relationships with my coach, like I feel like he's gotten to kind of see me at really difficult times with my diabetes and really, really hard times where he probably wished I didn't have that, because the time earlier where I was struggling with the blood sugar 400, he did not want that to happen. Nobody wanted that to happen. But he's also seen me accomplish so many goals of mine.
Speaker 2:I won our conference last year and I don't think any of us would have ever thought that the girl with diabetes would have won the conference. I mean, I probably would have been bottom out of everybody with a working pancreas. So I think those moments I think he'll look at me and think, wow, that is really special to have someone like her who's going above and beyond and doing her goals and accomplishing them. So I think there are really tough relationships that I just have to get over and understand that some people will just never understand that type 1 diabetes is not type 2 diabetes and vice versa. Diabetes is not type 2 diabetes and vice versa. There are a lot of good ones and the relationship with my sister again like being able to have a close companion and a friend that has the same thing as you super special.
Speaker 3:Yes, so it's a. It is so much a part of us, I think, as people with diabetes, that yes, it impacts relationships in some ways, but I think it can do so in a very positive way. I'll start off with a funny story that I think most all of us could identify with incidences of low blood sugars, where you're coming out of it and you think to yourself like, ooh, what did I say? Like, what might I have said, who did I offend? So there are times like that in my past and as technology has improved, there's less and less of those severe lows, of course, as you know, so it's not nearly as common. But back, you know, 10, 20 years ago, there was a number of times where I thought, oh, what did I do? Like, what kind of damage control do I have to do? To this relate with this relationship now, because I may have shared some truths that people weren't ready to hear, in a way that wasn't good but okay.
Speaker 3:So think about when we were in middle school or even high school, there was such a drive to be like others, to fit in, sometimes without notice. You just didn't want to be different. But as I am out of high school and college. Now, I think those differences are really what make us who we are. It's what really brings value. Nobody wants a sea of people who are the same and not standing out. I think it's our job on earth, first, to connect with people and encourage them and play to the strengths that we have, and diabetes really puts us, I believe, in a position to add more. Okay.
Speaker 3:I think anytime a person is engaged in this struggle and a worthy struggle and is doing well, they have to dig deeper than most. Okay. And as we're wrangling, grappling, okay, that can be really helpful in a lot of different ways. First, you know how hard you can try. You know what you can recover from and it's freaking remarkable.
Speaker 3:So I think, first of all, realize that life with diabetes, what it demands of us. Yeah, it's hard, but it can create a better individual. I mean, I believe that is what I've experienced and I'm thankful for it. So I feel like it can improve relationships in a lot of ways. I think it can make us more empathetic to other people in their own struggles, like we're so intimately aware of our own. But everybody's got them. Whether you call it, whether they have diabetes or not, it doesn't matter, everybody's struggling, so I think that we're put in a position where we can give more, because we have some additional awareness as a result of what we struggle with, if that makes sense. Now, one quote I heard that is interesting, I think, is that there's little growth in times of comfort and there's little comfort in times of growth, and I believe that to be true, and I think that our diabetes can help with that.
Speaker 4:Diabetes has impacted both personal and professional. I am very fortunate because my wife of going to be 20 years, she is also a diabetic. We did not meet at diabetic camp, but we did meet in my profession, which I'm an educator, and so is she. So it's nice having a wife with diabetes only because what I love about it is I help both of us where she's not quite as savvy with the technology. But what is nice is having conversations. You know if we're eating meals, whether we go out and have cocktails, whether we're doing anything and everything. It's always nice to bounce ideas. As far as carb counting, what do you think? And then, when you look at it professionally, I look at it that being an educator I don't know if you'd call it fortunate, but I do.
Speaker 4:I've had the fortune of having worked in districts that have several diabetics and what I love about that is I feel that I can help younger diabetics manage their diabetes at school. And it's also building relationships with those parents because, being a diabetic, I get an instant trust from them because I am a diabetic and, like I tell them, I will not do anything without talking to them first and I will not contradict whatever their doctor says, when I talk to families it normally starts that if this was my child, this is what I would do. So both personal and professional, it's adding to that family that we talk about with camp and the diabetic community and it builds the relationships that you have. And with me ending my career I'm going to be retiring shortly I still have three or four families of students that are diabetics that I still communicate with regularly and a lot of the times I have a couple of those are personal friends, but sometimes they just contact me to talk about hey, you know, johnny, has this going on with sports. You know, what would you suggest? Because this is what's been going on.
Speaker 4:And what's hard with that is it's hard to give advice because I am not a doctor, I'm not in the medical field, but I do have the experiences refereeing college hockey, refereeing USA Hockey High School, refereeing college hockey, refereeing USA Hockey High School, where I've been in those situations where I'm athletic for many hours or active for many hours and I can give that information on to the parents and then explaining to them what may or may not happen. You know, I know personally that if I referee a college hockey game or a hockey game in general. Six hours after that game I know my blood sugar is plummeting. So I know during the game I want to be around 150 to 200, and then I'll normally end at about 125. But I also know that I'm going to have to put a temp basal or shut my pump off six hours later because it's going to be plummeting. So those experiences not only help my wife, they help the students that I am in charge of. Being an administrator, so it's beneficial being an administrator, so it's beneficial, it's a part of my life, whether I want it to be or not. So you might as well embrace it.
Speaker 4:Because when I was first diagnosed there were a lot of what-ifs, a lot of differences with insulins. There were no pumps back. Well, I believe there was a pump but not many people were on it Different types insulin. So times have changed and I guess I've been fortunate enough to live through that technology to where we are today. You know all my friends, school work, everybody knows that I'm a diabetic and I can honestly tell you I can't understand why people would be secretive about their diabetes just because I mean, it's a health concern if nobody knows what's going on and you're having a diabetic low if nobody knows what's going on and you're having a diabetic low.
Speaker 4:You know my personality is one of goofiness.
Speaker 4:I enjoy having fun, I enjoy laughing at others, I enjoy laughing at myself, and part of being a diabetic I mean it's the one thing I will say is when we get together with the diabetic community, one of the most enjoyable parts of that are the war stories or things that happen that you can relate to and they're funny.
Speaker 4:Yes, there's a couple stories, um that I I do enjoy when we're talking about, uh, diabetic lows, uh, so my, my personal favorite is I had a friend treat my low blood sugar when, uh, dexcom, when the share first came out. That's probably my favorite story. And then the other story is I remember treating my wife's low and I was treating myself, you know she woke up and said you're low. I said, okay, I don't feel low. But she woke me up. I'm treating and go to look at my Dexcom and my blood sugar is 114 and I look at hers and she's 55. So it's just, you know things that happen, but you have to find humor in it, because in reality diabetes is very testing of the patients and if you don't find humor in it. There are, you know there will some that will struggle to live with it.
Speaker 5:So I would say I'm in the point of my journey where I'm super open to tell people about it. Right Like this is something that I get to carry along with me, so you're more than welcome to join in the super cool squad that I've got with me at all times. And if it's something that you don't think you're interested in, that's fine too. Right Like it's truly a weeder. You know, I can tell a lot about someone based on their reaction to living with diabetes, so I'm thankful for it. In some there's so many random, weird ways that I really am thankful for diabetes. But I will say, now that I've entered, like, my first big girl job and I'm somewhat in the professional realm, I will say that most people do not know that I live with anything right, so that brings a lot of positives. And then there's some negatives associated with that as well. A lot of times it's well, I didn't know you had anything. Or like well, it can't be that big of a deal, right Like I don't see anything wrong with you, so you clearly are not sick or you don't have something going on. And that can be tricky sometimes, right, but for better or worse, I will say my work colleagues have been super eager to learn more about it and to be a part of that support system, and so 99% of the time they don't know anything that I'm doing in the background, right, like checking my Dexcom and making sure my pump is ready to go. And I even have like a little tiny part in my office that has an entire diabetes collection of things in there. So there's like three full sites in there. There's like a little refrigerator section where I can put my insulin in there, and then I have a little sharps container that I received all on my own, this little tiny garbage receptacle that's for sharps too. So I have all of this little collection of things in my office and then for the most part people don't know that I have all of this little collection of things in my office and then for the most part people don't know that I have those things and I'm dealing with these things and I'm doing all this stuff in the background. But when I'm randomly eating like a glucose tab or I'm drinking a juice or something along those lines, and they see it they're so good about, just like that's just what Reese has to do, right, like there's really not a lot of questions. I feel like we've gotten through most of the initial like well, what does that mean? And well, what is that? What's the thing on your um, like waist on your pants? Like well, what are all those things Right? Like we've gotten through all of that. So now it's mostly just like Reese needs to do that to be successful, like we're pretty good about it.
Speaker 5:So I I have really enjoyed seeing that part of it Um in in colleagues and my work friends and different things along those lines. Um, because most of my friends back in college like that's, they've always known that about me, right. Like they, that was never something new or came out of the blue or anything like that. And like, well, if we're going to go to a party, reese is going to bring her bag. It's going to be full of everything that she needs to be successful, right. So I like that part of it, because the people that care about me care about all of me too, and so that has been, it's been such a blessing in so many ways. So I am thankful for those things.
Speaker 5:But for relationships, I would say it's helpful to have people that are on your side, so trying to build that support system from the start, just so that there's no questions down the road. Or if something urgent did come up, there are people in your corner that can act quickly and help you out. So the first thing I do is I tell them what I live with. I live with type 1 diabetes. And then that immediately has like 40 different questions that come along with that. So like, what does that mean? How do you help? You don't look like you have anything like all those things, right? So it's mostly just answering questions that come along with those things, right? So I say, well, my pancreas doesn't make insulin anymore and I've got this super cool pancreas that I wear on the outside now that I put insulin in all on my own and that's what keeps me alive and functioning every day.
Speaker 5:So for the basics and for people that maybe just want like a quick synopsis, that's good for the most part. And then it's for the people that um really want to help and I've had lots of little helper friends and that's been wonderful and so helpful. Truly it has Um. But for those people I say, well, I've got this super cool technology it's called Dexcom and I can pull it right up on my phone and kind of give them a walkthrough of what it does and how it shows, like your trends, along with your current blood sugar or around five points away from that, and that's super helpful because now they can kind of have a more like a representation of exactly like what a high blood sugar and what a low blood sugar means, and and that's like for somebody who's coming out and has no idea what this might mean. Um, I do think seeing exactly what that trend is and then where the thresholds are, that's super helpful for them.
Speaker 5:So, um, obviously, I you can have up to 10 people on share on the Dexcom follow app, and when I was in college I had 10 people on there, so I had my mom, my dad, my sister, and then I had seven other friends who were super excited and wanted to help out, and I changed from my my housing situation was different a lot too and so people that I was living with, or I went in by myself my first year, and so I had people that were just my friends that I came to college with and they were on my follow and then, slowly, as we moved into our housing situations, I collected more and more people and got all the way up to having seven other people on there.
Speaker 5:So it's yeah, I think that's been super helpful too, and that's kind of how I introduce it too is like this is what I need to be successful, and for the most part, people are super excited and want to help and figure out how they might be able to support you. And if that means follow, if that means sometimes I've asked people to carry fruit snacks for me and they're always excited about that as well, so it's it's.
Speaker 6:However, they want to help and I think the most part I would take them up on it um, in a personal sense, I feel like it's always challenging and finding the right words to tell a new person, regardless of what that relationship is. It's always a little bit awkward I don't have a good solution for that but it's just something that you have to do and people usually respond very well. I've really found that out. I think people are, in general, kind and everybody has something that they'd like to tell you about, about themselves. So I think just breaking that ice is the kind of biggest part of that. In terms of professional relationships, I really feel like I kind of thrive because I have diabetes and that's. You know what I work in my job and doing, so I feel like, if anything, that's a huge benefit to me.
Speaker 7:There were times in my life where I would literally hide my diabetes, right, I didn't want people to kind of know, and that made it much more difficult to manage. And then, similarly, like from dating and getting married I can still my wife still remembers the first time we dated I just like right in the middle of the conversation telling her I have type one. I just want to get this out. I want you to know. I have type one diabetes, so it doesn't come up as a surprise two weeks later or something like that. So, like, just say it as it is, so those things happen. As I explained, I kind of feel like my profession diabetes probably made me become an endocrinologist, because I probably wouldn't know what an endocrinologist is even today if I didn't have diabetes, because nobody knows what an endocrinologist is, except for the few of us that are so lucky to have one in our lives. All the time, professionally, I've had to take standardized tests, and when I take those standardized tests I fill out the American Disability forms so that I can have access to my insulin and access to glucose, because for medicine we have to take these board certifications and they lock you in a room and keep it quiet for eight hours. And I have to have special privilege to bring that in, because they think my phone I could be using it to cheat when, like, in fact, it has my continuous glucose monitor on it. So most people I didn't need a doctor's note to get that permission or anything like that, you just have to be kind of wearing it on your sleeve, right? Same thing flying. You know, tsa is always patting you down when you get hidden under there at your pump or something like that. So I think it impacts everything. And from like another personal standpoint back to the idea of like the sunshine and sweeter, or sun shining brighter and the ice cream tasting sweeter. It's just like you know. I think it makes your familial relationships really tight too, because it makes you aware and like every moment is a gift and special and professionally I probably say I've been one of the best at taking lemons and turning them into lemonade by being an endocrinologist with type 1 diabetes, so that's really been helpful for me.
Speaker 7:As far as like how it impacts my relationship with patients, I actually generally don't divulge, though several no, I have type 1 diabetes. They often ask me what I do and I often tell them we're not talking about me here. We're talking about you Because you know I might have a device that's covered under my insurance that's not covered under their insurance. So really, the relationship is only made better in the fact that I try to be a good example as well. As, like can I can relate to what it feels like to be like geez, I gotta take this test and I gotta ask for help. And I don't feel like I should ask for help like diabetes isn't slowing me down.
Speaker 7:You know, like there's a lot of that relatability. And what do I do when I drink? What do I do when I have drugs? What, like, how does that all work out? So that's obviously helpful from, like, just the perspective of understanding you have diabetes and the metabolic and all the things that can happen with that. But I also, with that street credit being said, a lot of people want to say that the diabetes is a disability and I tell them I'm the enabling doctor, not the disability doctor, right? So, like um, you know, I've had requests for hot tubs for neuropathy to sign off on, but that's not like something that we get as having diabetes Right.
Speaker 7:So I and unfortunately you know we are all different. You can have like great control and the patients can come at me and tell me, like don't you feel how I'm feeling? Or understand, like, so there's a spectrum with which the sugar affects everybody but and so that has to be understood too, and I think I can bring that as part of my professional career as well. So it's really a crazy journey, is what it is.
Speaker 1:All right, friends. I think there's a lot of really good takeaways from the interviews around relationships and how they've impacted these folks living with diabetes. A couple of the highlights I'd like to just point out. Whether it's friends, roommates, significant others or coworkers, at some point you should be sharing the fact that you live with diabetes. You don't want them to find out when you're unexpectedly having a have type 1 diabetes, but anyone that you're spending a significant amount of time with probably should know relatively soon in the relationship, especially if you're living with them right, roommates, things like that.
Speaker 1:The other thing that I really liked that two of the interviewees mentioned was the teaching moments. Right, oftentimes, when you approach the subject of sharing the fact that you have diabetes, depending on the person receiving that information and knowledge, you know there's a oftentimes a lot of teaching moments and explaining the difference between type 1 and type 2. That can get daunting if you've had diabetes for a long time and had that conversation a lot of times. But I feel like it's our responsibility as a member of the T1D community to help share that information and, you know, inform these folks of some of the some of the misinformation that's out there. I loved Olivia's comment about the professor allowing her to skip eating the pudding in class during her CNA class, like that's a great example of okay, let's, let's, let's revisit this and tell you. You know how this works.
Speaker 1:I think Tom Grossman brought up a great point about you should feel comfortable sharing with people, right? It's something that impacts your life every day and everybody's fighting some kind of battle. So, you know, I think oftentimes people with T1D feel like that makes them really different and a lot of times we don't want to feel different. But I do think it's fair to assume that everyone is fighting some form of battle and, you know, has some sort of struggle in their lives and it's okay for you to share what one of yours is with them.
Speaker 1:And again, I think it's super important, again, for those folks that you are around with on a regular basis. You don't want to wait till you're treating a high or a low to then try to have the conversation about diabetes and making sure they understand which one you have, and all of that, do it when you're not in the throes of trying to manage it. Thank you for listening to this episode of Diabetes Unscripted. The information presented in this podcast is for general knowledge. The mention of specific products, medication, treatments or services does not constitute an endorsement or recommendation. Always seek the advice of your physician or qualified health care provider with any questions you may have regarding your care.