T1D and U Part 2- In My Words Podcast
This episode of In My Words brings together college students for a guided discussion led by professional Moderator Michael Vigeant, to hear their stories of managing their type 1 diabetes on their own - with clinical commentary from Dr. Siham Accacha, Certified Diabetes Educator.
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Narrator (Rebecca): Hi there and welcome to In My Words, Jumo’s podcast series that brings the experiences of real patients directly to you. At Jumo we provide resources for children and families to understand, manage, and own their health. To learn more about us and the cool things we do, visit us at JumoHealth.com. That's j-u-m-oHealth.com.
At Jumo Health, we produce everything from comic books that explain difficult medical conditions, to videos where families share practical insight and their stories of hope. Learning how to manage life after a diagnosis can be stressful and confusing, and we aim to make that a little easier. From epilepsy and Crohn’s disease to fractures, MRIs, and lots in between, we’ve got you covered.
Welcome back! I'm your host Rebecca Haden, and as you may remember from our last episode, we're talking about college students and type 1 diabetes. We held a focus group with a group of students who shared their stories of managing a chronic condition while on their own for the very first time. Today you'll hear them talk about some of the less glamorous aspects of college that most teens have to face at one time or another: social pressures and burnout. How are these things even more complicated with T1D in the mix?
Erin: I can't be afraid of what people are going to think of me having this disease. I'm the sick one.
Narrator (Rebecca): Let’s get started. Going back to social expectations in college, it's easy to imagine how someone with T1D might want to pretend sometimes like they don't have an illness and like they're exactly the same as their peers - with no dietary restrictions, no monitoring, and no insulin shots. For many of these students, self injecting insulin has been a way of life for years. But what about injecting themselves in front of other people? In a perfect world, any onlookers would know exactly why a person was injecting themselves with insulin and have no misconstrued thoughts about it. Here's Erin again talking about a time when she had to make a tough decision about injecting in public and how she had the strength to do what was right for her and her health in that moment.
Erin: I used to like to pretend that I didn't have diabetes and not think about it, which it turns out is really bad for your health if you have diabetes. You have to acknowledge it. So I was slowly realizing that and getting a little outside of my shell in college. There was a moment where I was in the subway and I really needed to take an insulin shot becuase my blood sugar was really high, and I thought I could do it now or I could wait until I'm in private at home in 40 minutes. And I realized I just needed to do it then on the subway and not really care about what anyone else thought, because I have a chronic illness and I need to do this, you know, and that's more important than social expectations of what people are suppose to be doing in public.
Narrator (Rebecca): Here's Dr. Accacha again. You may remember her from our first episode. I found that this is a very powerful story so I wanted to get your thoughts on this experience and do you find that young patients face these kinds of situations often where they're struggling between what's right for their health and what is socially acceptable?
Dr. Accacha: Absolutely. Or peer pressure - that's another issue. Absolutely, they do. A lot of patients are just embarrassed; they don't want to wear the pump or do the injections here or there because they don't want anybody else to know about it. They don't want to be singled out as having a condition and they don't want to face the questions - what is this? Why? How? And on these things. And being considered, you know, as having a disease or be labeled as having some condition.
Narrator (Rebecca): Another notorious social expectation of college life for some students is to drink alcohol. Some feel this pressure more than others, some don't view it as a pressure. Either way, for someone with diabetes, alcohol can actually be quite dangerous and serious.
Erin: Alcohol, I've learned, severely drops my blood sugars in the morning and so I will take insulin for what's my normal dosage after drinking it will have like double or more the impact. Which, for other people I've talked to, is not always the same. But, I got in a situation where I had a few beers the night before I woke up to go to work and I ate my breakfast, took my shot for it, and then on my way to work I see on my CGM my blood sugar is dropping like, really really quickly. So I eat the candy that I have in my bag and it's still dropping. So on the way to work I buy a soda and I drink that. I get to work and I realize it still at like 65 after having had, like, 100 carbs, and I had to just essentially call out sick because I was so exhausted from that. So that's one thing where I would warn anyone coming to college and drinking. It's just...it can be very dangerous. The morning after is when you see that impact of it.
Sarah: Yea, I definitely would say to be very careful and very aware. So if possible, never get yourself into a situation where you have drunk too much that you're not aware and you're not checking, because like Erin was saying, the effects are hours later. It's not in that moment, it's maybe in the middle of the night when your're asleep or the next morning when you're waking up, but maybe you don't wake up when you have low blood sugar. So, that's the thing that you have to be really careful with. I think the last thing that's really helped me, personally, is having a continuous glucose monitor, because with that you can clearly track what's happening to your blood sugar. And then you can know, oh next time maybe I should lower my insulin if I'm going to drink two drinks.
Narrator (Rebecca): This to me seems like one of the scariest aspects of being in college with diabetes. I know that when I went to school, granted not everyone drank alcohol, but many, many people did, and it takes time for a person to learn their limits. If you're someone with a chronic condition that is directly affected by alcohol, that learning period - that trial and error period - could be so much more serious than how it sounds. I was actually once at a party in my hometown, and a girl with diabetes passed out in the bathroom. Luckily, everyone there knew her, knew she had diabetes, and had enough sense to call her parents. It seems like a situation like this could very easily occur in a college setting and that the people around might not have the wherewithal to know exactly what to do or even know that that person is diabetic. This goes back to the importance of telling your friends and those around you about your condition especially in risky situations.
Dr. Accacha, can you explain how alcohol affects the body and how that differs in a person with type 1 diabetes?
Dr. Accacha: Alcohol, once it's ingested, needs to be metabolized. That means it needs to processed to be used as energy. The place where it's metabolized is the liver. Up to a certain amount the liver is able to metabolize and get rid of the alcohol and processes it. But patients who have diabetes, they have another issue which is that the alcohol is metabolized in the liver before their blood sugar is metabolized and becomes available. So when they drink alcohol, if there is no food beforehand, that could cause hypoglycemia because the liver is not able to release sugar while the alcohol is present.
Narrator (Rebecca): So drinking on an empty stomach is a lot worse for someone who's diabetic than who's not.
Dr. Accacha: Absolutely, and different types of alcohol, also. Some alcohol is associated with sugar, like cocktails, and some others are stronger and pure. Those are the two differences: the cocktails can cause high blood sugar at the beginning and then low blood sugar. The ones without any type of sugar could later on cause low blood sugar or even after right after you consume them.
Narrator (Rebecca): Now, something the vast majority of college students must face at one point in their college careers is exhaustion. I know I spent my fair share of time in the library cramming for an exam into the wee hours of the night. Do students to one day have to take extra precautions when it comes to their energy levels and their exhaustion? Erin talks about how this is a stark reality for those with T1D.
Erin: It's called burnout. You know, I think all diabetics go through phases of burnout where we're just like, it's a lot to deal with it every single day. And there are points where you want to just be...I just want to be Erin, and I don't want to be Erin with diabetes, because it's a lot to handle. So I went through that phase in high school, too, and that was a rough transition into college of not having any one else there that was making sure that I was gonna be OK even if I was going through that burnout. But ultimately it lead to greater responsibility, but it's a rough transition and there are those moments of being very depressed about it.
Narrator (Rebecca): Feeling burnt out and utterly exhausted is something that most college students experience at one point or another. Midterms, finals, extracurricular activities; you could argue that college is one of the busiest times in a person's life. What can people do to increase their energy and maintain insulin levels when dealing with such exhausting demands? What are some of the most important things students should keep in mind when managing their health and a rigorous academic schedule?
Dr. Accacha: One of the most important things: check your blood sugar!
Narrator (Rebecca): There seems to be a theme here.
Dr. Accacha: Compliance with checking blood sugar is extremely important. Do not forget to eat, and do not forget to give yourself insulin. Having very high blood sugar or having very low blood sugar affects the brain function.
Narrator (Rebecca): And college students are notorious for not getting enough sleep. So is it more important for someone with T1D to be conscious of how much sleep they're getting?
Dr. Accacha: Yes. One of the reasons why lack of sleep is affecting a patient with type 1 is an extra stress, and that could affect your blood sugar, as well.
Narrator (Rebecca): We'd like to end today's episode with two overarching themes that came out of our discussion with these students: building confidence and gaining independence. Despite the challenges that all of these students faced at one time or another - the 'should I stay or should I go?' decision they all made as high schoolers, the emotional ups and downs of being away from home and solely responsible for their own health for the first time, and the battle between what they wanted to do and doing what was best for their health. Despite these trials they have all come out on top and have gained a sense of independence of which they are all very proud. They gained the confidence to own their health that they didn't have as teenagers. When we asked them what advice they would give younger people here's what they said:
Kyle: I've learned that no one cares. I told my professors that sometimes I'm going to have low blood sugar and I'm going to have to bring food to the classroom, and they're like OK. If I'm going out to dinner with some friends, I take out my insulin pump, I give myself a dosage of insulin - it's OK. There's still a bit of awkwardness initially when I just come out and say hey, you know, I'm diabetic, and they're like OK. I still acknowledge it, but I don't let it become a part of me.
Bailey: I think you really realize that when you come to college you came to college because you're building the foundation for the rest of your life, and type 1 diabetes is going to be a part of that. And I think that's why a lot of people, when they come to college, they really get a grasp on it and start taking control. I think the sooner you realize that, if you're in high school, the better.
Narrator (Rebecca): In going off to college, these students have gained confidence in themselves and are leading healthy lives as independent adults. They are such great examples of how the experiences of life and the lessons you learn along the way shape who you are today. And these people, I can say, are all strong and all brave. They continue to evolve and learn how to best manage their T1D and strive to live their lives the way they want to while maintaining their health.
For those managing T1D or other medical conditions who are thinking about or already in college, we hope that listening to the experiences of these students has been helpful and insightful. It can seem overwhelming at times to manage everyday life while also managing your medical condition, but rest assured, you are not alone. We hope that by sharing the stories, tips, and advice of others we can empower our listeners to own their health.
Special thanks to the amazing students who shared their stories so that others can learn from their experiences. To Great Blue Research for moderating our group, to Dr. Siham Accacha for sharing her insights, and to Matt Haick for scoring our theme music. Lastly, we'd like to thank Helix Mattress for sponsoring today's episode. Keep listening for a special discount code.
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In My Words is produced in New York City and distributed worldwide.
In My Words - A Jumo production.