T1D and U Part 1- In My Words Podcast

Our inaugural episode 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.

Listen to Part 2.

March 13, 2017

Narrator (Rebecca): Welcome to the Jumo Podcast series where we bring the experiences of real patients directly to you. At Jumo, we provide the resources for children and families to understand, manage, and own their health. To learn more about us and the things we do, visit us at JumoHealth.com. That's j-u-m-oHealth.com.

Focus Group Moderator: In my words, T1D in college means...

Sarah: Responsibility, again. Responsibility.

Nicole: Independence.

Danika: Just trying to continue with my life.

Kyle: More counting carbs.

Erin: Building confidence.

Narrator (Rebecca): Hi there I'm Rebecca Haden. I work for Jumo in client services, and I'm very excited to be your host for today's episode. At Jumo we create fun an interactive educational experiences for children and their loved ones across diverse medical conditions. Learning how to manage your life after a diagnosis can be stressful and confusing, and we aim to make that a little bit easier.

In this two-part episode, we'll be focusing on a chronic condition that is fairly common. Most people have heard of it, some people know someone with it, and like many other illnesses there's a lot of confusion surrounding it amongst those not affected. It's type 1 diabetes.

And we don't want to just talk about what it is and why someone gets it, because people who have T1D know this already. In this particular episode, we want to dive into how managing T1D affects college students living on their own for the first time. So what did we do to get to the bottom of this? We went to the source. We recruited a group of students going to college and living with T1D. We then put them all in a room and held a focus group with a professional moderator. Here they are:

Students: All right, I'm Bailey. My name's Sarah. I'm Erin. I'm Kyle. Hi, I'm Nicole. I'm Danika.

The audio is a bit tough to hear at times, so listen closely. In today's episode you also hear Dr. Siham Accacha, Certified Diabetes Educator and Director of the Diabetes Program at Winthrop Pediatric Associates.

Dr. Accacha: Hi.

Narrator (Rebecca): We brought her in to help shed some light and provide color commentary on the discussion. She has worked with us in the past on diabetes resources and we're very excited to have her back with us. Now, let's get started.

Before we get into what life is like in college for students with T1D, we'd like to take a step back and look at what goes into the decision making process surrounding higher education in high school. There are a lot of things for any person to consider when thinking of going to college, let alone someone with a chronic illness. We asked these guys, what did you look into? What were some of the deciding factors in choosing a school? Did the distance from home, from your family, your comfort zone hold a lot of weight in your decision? Some stay close to home, but in this particular group many actually strayed quite far. Listen to Kyle's story and why for him the benefits of following his dream outweighed the possible risks of being far from home. We asked Kyle were there concerns?

Kyle: It's definitely a concern for my parents. I mean, in a case like, you know, I pass out or whatever, and they take me to the hospital don't know what to do with me. I mean I applied and got into U Dub (University of Washington) and my parents lived about two hours away. It's obviously a lot easier to come down, see what's up, and get things under control than take a four hour flight across the country. Ultimately the decision came down because I wanted to pursue a career in screenwriting. NYU - it's a pretty good school for that, so that was the factor that sort of tipped it over. And I decided that in the long term, I would rather take this risk. And obviously I have to grow to be independent, as well.

Narrator (Rebecca): While Kyle took the risk and decided to leave the comfort of the Pacific Northwest for the bustling streets of New York City, other students reported that their parents wishes did dictate their decision making. Here's Sarah:

Sarah: I think for me going to college, it wasn't necessarily that I was worried about it or nervous. It was more my parents. So I only applied to schools in the Northeast because that was my mother's condition. She said, "you have to apply to schools that are fairly close so that I can get there without having to use a plane." So that's what I did, and I ended up going to Wellesley, which is like 45 minutes away from Boston. And so that is a huge resource for diabetes and doctors and endocrinologists.

Narrator (Rebecca): We wanted to ask Dr. Accacha about her patients T1D and what's typical in terms of the college decision-making process. What do high school students with T1D think about when choosing a college? What is the typical family dynamic, and how does this play into the decision?

So I'm here for Dr. Siham Accacha. Dr. Accacha, thank you so much for being with us today.

Dr. Accacha: Thank you for your interest.

Narrator (Rebecca): In reference to Kyle's audio when he talks about going away to school in New York to follow his dream of being a screenwriter, what should high school students consider when choosing a school?

Dr. Accacha: I think that one of the important things to consider is the availability and the knowledge of the staff or health department of that college regarding diabetes. Or the possibility of having a personal refrigerator in their rooms, being able to reach a health care professional who is at least a little bit familiar with diabetes kind of close by. A hospital who can take care of them if anything happens. If there was an endocrinologist in the town or anything, that would be even better. Otherwise, they can go actually to any college. There is no specific restriction as far as I could think of.

Narrator (Rebecca): So you find that most colleges do accommodate these students quite well?

Dr. Accacha: I think so, yes.

Narrator (Rebecca): Would you say that it's ever a bad idea for students to go far away from home across the country, away from their parents?

Dr. Accacha: I don't think that there is an issue, as long as the student, the patient, is compliant and taking care of her or hisself. As long as you check your blood sugar, you are in control.

Narrator (Rebecca): So what are the main issues with compliance, you'd say, with this age group?

Dr. Accacha: Checking blood sugar. Checking blood sugar as much as possible and then making sure that you give the right insulin.

Narrator (Rebecca): So in terms of the family dynamic do you find that it's typically the parents that are more concerned and nervous about their child going away to college than the child themselves?

Dr. Accacha: Absolutely. Yes, absolutely and I don't blame them. Most of the parents have been taking care of their child with diabetes, and then all of a sudden they feel nervous or uncomfortable letting go.

Narrator (Rebecca): So how can parents kind of ensure that their high school students are preparing for the transition to college and life away from home?

Dr. Accacha: Actually we we in our practice, we try to educate them the year before 12th grade and try to give them a little bit more freedom with supervision. You know, they are still responsible, they still need to supervise the child. If they give them a little bit more freedom and let them take care of their diabetes. But I have to tell you it's all dependent on the level of maturity of that child, as well.

Narrator (Rebecca): So now you're in college. For many, the first time away from home not under the watchful eye of a parent or caregiver. How does this sudden sense of freedom affect someone's health behaviors? We asked the students a question that maybe they would have answered differently had it been asked by their doctor: with this clean slate, so to speak, did they see college as an opportunity to reinvent themselves? Detach from the brand of T1D that many felt define their lives up until now? Here's Erin.

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 you health if you have diabetes. You have to acknowledge it. I was slowly realizing that and getting a little out of my shell in college.

Narrator (Rebecca): Let me just say that we're so grateful for the honesty and openness of all of our discussion participants, because sharing feelings like this - feelings that undoubtedly so many others with T1D feel - is what will help others in knowing that they're not alone.

Dr. Accacha, do you find that a lot of your younger students may be in high school before transitioning to college have this feeling of just wanting to pretend like they're exactly like their peers and they don't have any restrictions - no dietary restrictions?

Dr. Accacha: Absolutely. A lot of them. That happens a lot at some time or another. Even they ones that have the best control at some point, you see that something has happened and there are no blood sugar checks or their A1C goes up a little bit here and there, and you're wondering what's happened. And I'm sure that at some point they just want to let go or they just want to do whatever everybody else would do.

Narrator (Rebecca): How important is it for a student with diabetes to tell those around him or her that they have this condition?

Dr. Accacha: I think it's extremely important, especially, I think, from my experience it seems that a lot of college students the first year at least that they have to leave with another student in a dorm and that person absolutely needs to know that that student has diabetes. I think it's very important to let at least one of the classmates or the person lives with you know about that. And if you have long hours in class, definitely the teacher needs to know so there wouldn't be any issue regarding checking blood sugar and compliance. And eating actually, even, because they might have low blood sugar and might need to eat. Or have high blood sugar and need an injection of insulin.

Narrator (Rebecca): So although people who have just arrived to college may not want to divulge any information about their condition to others, it's pretty important to do so. At least during freshman year or the first year away, telling those closest to you can be a safety measure.

In the world of medicine and epidemiology, T1D is classified as a common condition. But it seems like it actually might be quite difficult for college students to find others with T1D. Although Sarah I didn't know anyone with T1D in high school she felt lonely not having anyone to talk to about it once she got to college.

Sarah: So, in my high school, I didn't know anyone with diabetes. I mean, New York has a lot of people with diabetes, but also it's a big place, so you're not necessarily going to run into someone who has diabetes. I never grew up having a community in that sense, I was always the only person who had ever had diabetes. So then going to college, it was kind of the same way. Although my thinking about it kind of changed, because I realized that now I don't have any friends that have diabetes, but I also don't have my family, so I really have no one to talk to about it.

Narrator (Rebecca): In not having her family there to support her, Sarah felt isolated and lonely. These kinds of emotions can have a big impact on someone's happiness and general well-being. We wondered whether these might be accompanied by other negative feelings and how this might affect someone's health behaviors. If a student has negative psychosocial feelings, do you find that they struggle more to manage their diabetes?

Dr. Accacha: They struggle more to manage diabetes and they will struggle more in college, as well, to succeed. Personally, I think that with psychological issues and health - it's is even more important than diabetes. It's the first line of therapy, because if you don't feel well you are not going to be able to take care of yourself.

Narrator (Rebecca): And do you find that this age group in particular is more susceptible to these kinds of feelings?

Dr. Accacha: Not necessarily, but can happen and it does happen.

Narrator (Rebecca): What advice would you give students who are dealing with this if they're already in college or if they're already having these feelings in high school?

Dr. Accacha: To reach out to get help. That's very important to make sure that they get the appropriate help.

Narrator (Rebecca):: And where can they find this help if they're already in school or, let's say, in high school, as well? So both high school and college.

Dr. Accacha: So most of the schools in New York, they have a guidance counselor and they have a nurse. And that's why I was talking to you about the college having a health department that is appropriate and it's used to dealing with these kind of conditions. Visit the health department and make sure that they know that you have diabetes. Ask about their resources!

Narrator (Rebecca): So first things first. There's a flood of emotions that anyone can experience when being alone in college for the first time. But it's dangerous to let this impact your health. Like Dr. Accacha said, don't be afraid to utilize your school's health services to get the help you need to feel your best and take care of yourself. Now we'd like to share what one student did to find others in her school with T1D. Here's Nicole talking about how creating a community has helped her cope with the transition to college.

Nicole: Personally I wasn't really worried because I've had diabetes for a while and it's been under pretty good control. Definitely my blood sugar fluctuates, but that's just kind of inevitable. Once I actually got to college, a month or so into college I started to feel really lonely because I didn't really know anyone in the New York area with type 1 diabetes. And no one else around me, especially my dorm hall or anything, you know, had connections to diabetes. So I felt like no one really understood me and I was going through a pretty rough time of fluctuations. It was really hard to deal. Yea, I think the group's good because it creates a community for us to discuss and share our feelings.

Narrator (Rebecca): The group because referring to the College Diabetes Network. She started a local chapter at her school to create a community of T1D students that could talk about their experiences and relate to one another in a way that they might not be able to with others.

Dr. Accacha: All of our patients that participate in different types of support groups, they really enjoy being in them. We have patients coming here just for the support groups, actually - to get into the support groups.

Narrator (Rebecca): If you're looking for a local support group like the one Nicole started, try checking with the health services department at your school. Or simply try searching on Google. And of course, you can always reach out to us at Jumo and we can help provide any resources we have available. Thanks for listening to part one of our special on T1D and life in college. We learnt a lot about the journey these students have navigated from choosing a school, to getting there, and the emotions experienced along the way. We learned that having people to talk to and share your experiences with can be a huge help in dealing with some of the challenges and overwhelming feelings of going to college while managing a chronic illness.

In our next episode we'll be diving into social pressures, burnout, and confidence building. Stay tuned!

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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Thanks for listening! We'll be adding new episodes all the time. We also take requests so if you have a great topic, let us know! Who knows, we may even interview you! Visit us at JumoHealth.com

In My Words is produced in New York City and distributed worldwide.

In My Words - A Jumo production.