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
S1E3: Empowering Your Journey After a Diabetes Diagnosis, Advise for the new folks
Have you ever wondered how to navigate the first steps after a diabetes diagnosis? Join us as we uncover the journey of empowerment for those newly diagnosed with diabetes. This episode is a beacon of hope and knowledge for anyone feeling overwhelmed. We explore the transformative power of community, whether it be through in-person gatherings or the vast array of online groups available. You'll learn how crucial it is to find support from those who truly understand what you're going through. We also examine the role of technology in diabetes management, cautioning against the rush to adopt every new tool as soon as possible. Social media not only connects you with others but can introduce you to niche communities, like groups for type one runners, where shared experiences and support become invaluable.
Living with diabetes doesn't have to be daunting. We chat about adopting a healthy lifestyle that aligns with general wellness advice—embracing whole foods, regular exercise, and nurturing a positive mindset. Understanding insulin and glucose metabolism is key for those newly diagnosed, but it's the universal message of gratitude and support that truly resonates. Connecting with loved ones and resources like the American Diabetes Association can make all the difference. We remind ourselves and our listeners that a diabetes diagnosis is not a limitation but a new chapter that can be managed successfully with patience, perspective, and the right support. Join us for a conversation filled with insights, hope, and practical advice on living well with diabetes.
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. This episode of Diabetes Unscripted this week we're going to be discussing what advice would you give someone newly diagnosed today? I find this question was very interesting amongst our interviewees here because there's so much experience and so much knowledge that has been gathered over the years versus someone who just starts the journey today with all the technology that's out there. So, without further ado, let's take a moment and hear what our candidates had to say.
Speaker 2:When I was younger, you had the American Diabetes Association and you had juvenile JDRF, uh, jdrf, and those were the two things that you could do. Um, I remember and I can't remember if it was JDRF or the ADA, but I think it was JDA. Nope, might've been the ADA, but we used to have all night roller skating parties, um, but it was something that I looked forward to. And, talking to my, my mother, who was normally the one who would take me, um, it was a place that she could reach out to other parents that were going through the exact same thing that she was. And I would say it's the same for us diabetics. Obviously, being younger, you know it's always nice, whether you go to an activity like that or whether you go to camp, whether you go to a baseball game, whether you do some activity with other diabetics, knowing that you are not the only diabetic there. Others are living the exact same thing that you are. So, finding that community of support is huge and I would say definitely for younger diabetics, for their parents is a definite. I know my parents blamed themselves when I was diagnosed them being able to talk to other parents you know it wasn't their fault and then, if you're older, the advantage is finding a community that you can talk with, because things that you're going through I promise you there are others going through the exact same thing. When you are diagnosed, you want to reach out and find a community, find people that are battling the same thing that you're battling. And the other thing that I would say for newly diagnosed people is, if you are not good with technology, diabetes has come a long way.
Speaker 2:When I was diagnosed, there were many different types of insulin, all long acting. The shortest acting you had was regular and I believe that that was three, three hours before it started to act. Um, and so you were. I was put on a regiment where I was ultra lente and regular and, you know, if you didn't eat at a certain time, you were going to have a low blood sugar. With technology today, with the Dexcom, with the Libre, you have access to instant results that will help you control. Being very active in sports, I was very fortunate enough to get a college scholarship for playing hockey. Afterwards, once my hockey career ended, I began refereeing and was able to do up to college level. I would say that there's always that fear. By definition, diabetes is a disability. I do not believe it's a disability only if you make it a disability.
Speaker 3:I really feel like you need to take this one step at a time. You can go and have so much technology right away and it's not always beneficial. I would say it's almost never beneficial, especially in my clinic. Everybody wants to start on a pump the week after they're diagnosed, but they just don't understand that that's not really going to solve any problems. It's a way to give insulin, but really the mental load that comes with this technology is a lot on top of a new diagnosis.
Speaker 3:In general, I feel like for anybody that's newly diagnosed, but mostly this age, I think you have to really be comfortable living your life in a gray area and I think that's really hard because you're pretty much taught. With everything, life is black and white, but it's just not with diabetes. Maybe pizza made your blood sugar 300 yesterday, but maybe today it's not. You're 70 and you're taking the same dose of insulin and you did the same things both days. That's diabetes. You have highs, you have lows and it's really uncomfortable to be comfortable with that.
Speaker 3:Use your social media. It's kind of shocking the amount of resources that are available through social media, even though it kind of seems weird, I feel like, diabetes aside, if you want to hike in the Metro Detroit area. There is a group of Metro Detroit hikers. It's like the small niches of things that you can find online are amazing. So really there are so many good groups and resources out there.
Speaker 3:I hate saying that because I really in general say to stay away from those pages, but in terms of meeting people, to meet them face to face, I think it's a good resource and a good place to start. I wouldn't necessarily utilize them for medical advice, but in terms of friends and a social network, I feel like that's a good place to start and then from there you learn where else to go and look so like this is something new that I figured out recently, I would say in the past year or two. There's a group online for type one runners, so I thought that was a very specific group of people that. You know. I don't necessarily agree with everything that other people do. It doesn't work for me, but it's nice to see hey, these people are running this race. Maybe I'll do it too, or maybe I'll see if they're going to be there or maybe they're doing this long training run in this park. So I'll try and meet them, something like that.
Speaker 4:Yeah. So I would say immediately after diagnosis you just got to breathe, right, everything is going to work out. And that is only somebody who has been dealing with this for a long time can tell their younger version. Right. In the moment it seems like the world is coming to an end. Everything is horrible and you'll never make it out of it, right, but you will, you really will make it out of it. So for the time being, I would say, take a second breathe, you are all right. And then I would say and we talked about this a little bit already but what your life was like before your diagnosis can be very similar to your after diagnosis, right, and it's going to be a matter of being prepared and having the right gear on you and making sure that you've got sugar. But whatever you were doing before, you can continue to do after. So I think that's super important.
Speaker 4:And then, if I was talking to like a recently diagnosed person that might be a little bit older than eight years old, I would say there are some serious silver linings that come along with being diagnosed and that's going to be tricky to really fully take in as soon as you're diagnosed, but you'll learn to see them too right. So if it's kind of figuring out like which kind of people are going to be in your life and what people maybe aren't going to be in your life, that's totally I think a silver lining of it. Maybe aren't going to be in your life, that's totally I think a silver lining of it. And then I think it's I've gotten to the point where I've even been able to be a part of advocacy work and I volunteered for the American Diabetes Association and was flown out to be a Michigan representative in DC. So I was able to actually make a difference and try to talk to congressmen about lowering insulin prices. And that's a serious silver lining, right. Like to be a part of something and then have the ability to make change, make positive change. I think that's great. And then like even the number of people that you're going to meet after your diagnosis you really are going to be in your own little club as a result of being diagnosed too, and so trying to build up that support group, that's super helpful. And then it's also awesome at the same time.
Speaker 4:So I was a camp kid and so doing all my time at camp and I was able to do both sides of it. So that was super neat the camper side and then the counselor side, and even one year in the middle where I was half counselor, half camper. So lots of those things. I still am close with those people that I made connections with at camp, right, and there's so many positive things associated with it. Obviously there's going to be like a lot of negativity too, and I think trying to like walk with buffers on sometimes that can help, right, trying to not look at maybe the scary part or the sad part or the I don't know if it's. If it feels like a bummer sometimes, that's okay, let it feel like a bummer, but it doesn't mean that it always has to feel like a bummer either.
Speaker 4:Support groups after being diagnosed and after going through camp yeah, and so at Michigan State University I was a part of the College Diabetes Network and it's called the Diabetes Link now, but I was the co-president of it. So I created an environment where people could come that lived with diabetes, and then their friends that even wanted to support the friend that has diabetes could come as well, and it was purely a social club too, and so it was just a chance to kind of build a community of people that get it, and it kind of goes back to that. You don't have to explain yourself, you can just kind of exist and nobody asks questions and everyone gets what you're going through, right. And so the conversation would always come back to diabetes at some point and people would have time to vent about it. But that wasn't the design of it to begin with, and that's something that I could see the missing part of that when I was in college and I wanted that camp experience and I wanted the counselor experience, but I wanted to continue it on into university, and so I just created that little club where people could come and just feel supported.
Speaker 4:And so I think it's maybe see what kind of things are out there. Maybe there's already a club similar to that that you could join, but if there's not, I would make your own club, right, like I think there's lots of different tools to be able to do that, but people would join too. I don't think that's the problem either. We got to the point where we were having 25 people come to meetings and it was like holy cow, we've got way too many people now. We didn't get enough food, so we kind of had like the flip side of it, right, so yeah, so let's getting diagnosed with type 1 right at 20 plus year olds. You?
Speaker 1:know up in 50.
Speaker 5:So let's? I actually recently worked with someone in the 60s who was newly diagnosed. I want to clarify that expression though, mark, because that's a problem. Type 1 diabetes is really diagnosed, generally speaking, in people who are 20 or less, which is maybe different than how you're describing it today. The ones that you're describing who are diagnosed at ages 60 and 50 and 40 should technically be called latent onset autoimmune diabetes of adulthood, which is different than type 1. I want people to understand that. See type 1, remember we talked about diabetes as a marathon, not a sprint.
Speaker 5:So people with type 1 diabetes, that A1C is important because they have like 30, 50, 70 years of life left. And the problem is, diabetes doesn't kill you. It can erode you. It can get rid of your eyes, it can get rid of your kidneys, it can get rid of your feet. But the person with late-nonset autoimmune diabetes of adulthood who's diagnosed in their 40s and 50s and 60s or 70s or 80s has a different trajectory with regard to how long they've had glycemic control, with regard to how much insulin they're still producing. It's at late-tent onset, meaning it takes a long time to get there, but it should not be thrown in necessarily the same basket as type 1 diabetes, though they are also treated very similarly. They need insulin, but they are clinically different species. So I'm just telling you that I know that it's very fascinating that people age 60 that you recently had has insulin requiring diabetes with autoimmune markers. But that's not the same as the 10-year-old who's got diabetes Fair, so I don't like calling it type 1. The later in life individual I tell them that if you invited them to the diabetes afterglow like party, that they would look different and you can perceive yourself as different, because you're insulin requiring and the majority of diabetes around you is type 2 diabetes, which is associated more so with obesity, more so with insulin resistance, and your diabetes is going to be different than all of theirs with regard to that, and so I tell them that they need to accept the fact that they can't exercise their way around it or eat their way out of it. It's just, generally, insulin is the thing that you're lacking, which is vastly different than the majority of all diabetes, which is type 2 diabetes.
Speaker 5:So a lot of people with this insulin requiring late, non-sodomimmune diabetes of adulthood, they kind of have a tough time with it because they're used to seeing type 2 diabetes and they think that they can kind of get out of it. But if your body is not making insulin, it won't make insulin in this current state in the medical field. Now, maybe someday we'll have islet cell transplants, maybe someday we'll have stem cell regrowth, maybe someday we'll give these immunomodulating medications to keep your beta cells preserved for longer. But as it stands, those who need insulin need insulin, and so my advice to them is to accept that and to try to get on the insulin and in those cases. But similarly, my advice to somebody with new onset type 2 diabetes would be to stay the heck away from insulin, because they have hyperinsulinemia, they have an insulin excess, so, like we can use other medicines to manage it. So the diagnosis is very important, right, because a great deal of our society is lost in the word called diabetes. But, as we've already explained, we've gone through three different types of diabetes in this conversation, right Type 2, late and onset autoimmune diabetes of adulthood and type 1. And there's a whole host of many more.
Speaker 5:So how I approach or give advice to somebody with newly diagnosed diabetes is dependent upon, obviously, the diabetes. So again, I try to console them in the probabilities that we talked about the importance of how diabetes isn't really going to kill you. It's going to help. You're going to prevent complications by keeping the average blood sugar around 150 milligrams per deciliter, and that's done better through exercise. That's done better through diet.
Speaker 5:The advice is the same, though, for the the majority of people, including people who don't have diabetes. That's the funny part. Right is like I want all people to like eat fruits, whole fruits, not glasses of juice. Whole fruits and vegetables first. I want all people to like have fish and chicken and pork before they have fatty beef. I want all people to have whole grain breads and all people to have those before they have high fructose corn syrup and processed foods.
Speaker 5:So in some ways, the advice is as natural as, like we all know in society, should kind of be right. And then, similarly, I want all people to try to exercise 30 minutes a day, whether that's aerobic or whatever. Or I just want you to be active and try not to have a sedentary lifestyle. As we all know, that's way easier said than done, I agree. But with regard to the advice for newly diagnosed, what we just said is universal advice with regard to eat healthy, be healthy, try to be mentally well, get a good night's rest. I mean, these things are all the secrets to being a successful, healthy person in general. Now, these people who are newly diagnosed, do they need a little exceptional teaching about insulin and metabolism? You bet Glucose and metabolism. You bet that's no joke, but like the big premise is very much the same. So if you can keep that in mind, then you're kind of living the lifestyle that you're supposed to live.
Speaker 6:I would give this same advice to a person, whether they have diabetes or not, but I think it's especially important for those of us with diabetes is look around you and what are you grateful for? What would? What brings meaning to your life? What do you value? What do you love? Who do you love? Is there all around you?
Speaker 6:Motivation requires motive. All right, we need to know why we're doing something. What are we trying to preserve? What are we grateful for? And I think that if you can keep a grip on what you have gratitude for, it only assists in maintaining quality of life and a positive type of attitude. So, from a diabetes perspective, think of those around you that depend on you, that want the best for you, and to try to ensure that these people remain in your life number one and that you're maximizing your quality of life for all the good that's around you.
Speaker 6:It's the good is many times quieter than the things that aren't, these situations or issues that aren't as good, but they're incredibly more meaningful too. So it's easy to get distracted by the things you wish were different. But look, open your eyes and look around you. Okay, that's what I would say to myself. You know, keep it up Today may not be the greatest, but look at your life. I mean, we have. You know, if someone lives to be a hundred years old, it's only a little over 36,000 days. It's a finite period of time that we're here, like. I don't want to spend any much of that time in a negative kind of format. You know like come on, and how many have we already lived? How many of you have left?
Speaker 7:like come on, and how many have we already lived? How many of you have left? I would say, definitely, take diabetes day by day. Some days you're going to think that diabetes is the end of the world and you wish you didn't have it and you don't know why you got it. And I think everybody experiences those days. We have them, but then there are going to be days where you just completely forget that you even have it and those days you can't take for granted because they're so special. I feel like the other day I had a day where I just didn't even I didn't even feel like I had diabetes and living your life at the moment, then you know that eventually you're going to be able to do all those things because you're living in them right now. So that's definitely my advice.
Speaker 1:So there's a tremendous amount of knowledge in those answers there around the advice for newly diagnosed folks with type 1 diabetes. A couple things I'd just like to highlight would be take it slow, take a breath. You don't have to have this disease mastered tomorrow. Many of these folks have, you know, decades of experience and advancements in technologies along the way. So Walk Before you Run, I think, is some really good advice. I think Cassie did a great job of talking about you know, plugging into social media platforms so you can see stories from other folks that live with diabetes, listen to podcasts like this so you're not feeling alone in that journey. Also, recognize that those are not great places for necessarily medical advice, but certainly good for community. Good for community. You also have the American Diabetes Association and Breakthrough T1D, formerly known as JDRF.
Speaker 1:I think it was Tom that said. You know, think of your life before and think of your life after. And how do you find out how to do those things, those day-to-day activities that you loved and cherished before your diagnosis and after your diagnosis. And if those are around activity or anything that really impacts your blood sugar, then you know you may need to enlist your endocrinologist or health healthcare provider to help you figure out how to get back to where you were prior to the diagnosis, but I'm a firm believer that there are very few like almost no things that you can't do after diagnosis. I think Tom also did a great job of highlighting perspective. Yes, this is a daunting challenge that you take on on a daily basis. However, how you approach it, just like anything else in life, is going to determine the level of your success and your outcomes.
Speaker 1:You know, as someone who's worked in the medical field and spends time in hospitals, there's a lot of days in my life, over my years, where I don't really enjoy the fact that I live with diabetes. Go spend an hour in the lobby of a children's hospital, or an adult hospital, for that matter. There are a lot more challenging things you could be dealing with in life than diabetes. I'm not here to belittle it and say that it's easy. It certainly isn't. That's part of why I'm here is to help, but there are a lot worse things to be dealing with in life and I think it's really important to keep that perspective. I know when I have really challenging days and I'm feeling beat up and, frankly, frustrated with the fact that I live with diabetes. I remember those moments where I've seen other people with significant health challenges that are far more debilitating than diabetes. It's a great way to just get kind of a fresh perspective and take it slow.
Speaker 1:There's a tremendous amount of knowledge out there and you can learn it. You know I've worked with a lot of families with children that get diagnosed and you know, especially at camp, right, we get these campers that come in and they were diagnosed two weeks ago and the parents look like they haven't slept since. Um, take a breath, do your research. Everybody learns at a different pace, right?
Speaker 1:Some parents I can think of a group of parents I had at a minor league baseball game just a couple weeks ago that they were one month in the kid was that CGM and a pump and they had it dialed in. That's an anomaly, right. That is not the pace at which most people move. So, you know, reach out to the folks that have had it for a while, use your social media platforms and just take a breath. If you're feeling overwhelmed, just get back to the basics and start learning more the next day or the following. You can't take it all in in a day. You can't take it all in in a day, the knowledge that we have from these folks on.
Speaker 1:Just this episode is again. It's well over 100 years of experience with type 1, so don't feel like you need to be there in the short term. Thank you so much for listening. 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 healthcare provider with any questions you may have regarding your care.