"There isn't a 'One Size Fits All'" - Diabetes in College and Beyond (with the College Diabetes Network)

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Graduation season is here! Whether your young adult is just out of high school or completing a college degree, there’s a lot to consider when it comes to diabetes. We've got a roundtable discussion with a lot of frank talk about T1D in college.

Recent graduate Shay Webb and college senior Haley Owens talk about everything from what to do when a professor doesn’t care about accommodations, to deciding how visible you want diabetes to be, to what they want parents to know. We're also joined by Anna Floreen Sabino of the College Diabetes Network. Webb and Owens are both CDN NextGen Fellows.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Check out Stacey's book: The World's Worst Diabetes Mom!

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Episode Transcription Below

Stacey Simms 0:00

Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels, increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

Announcer 0:21

This is Diabetes Connections with Stacey Simms.

Stacey Simms 0:27

This week, lots of graduations this time of year and whether your young adult is just out of high school or completing their college degree. There's a lot to consider when it comes to diabetes.. Frank talk about T1Din college.

Shay Webb 0:41

Sometimes it's the people you don't expect to pick up on things who actually picked up on it rather than the authoritative figures who you're expected to report to don't always want to pick up on it or want to actually have responsibility for it because they feel like if they have responsibility for it, that's their liability when in reality, it's your diseases your body. We just need your ally ship.

Stacey Simms 1:06

That's Shay Webb she graduated last year Shay and Haley Owens, a college senior. Join me in a conversation about everything from what to do when a professor doesn't care about accommodations to deciding how visible you want diabetes to be to what parents need to know. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Welcome to another week of the show. We are glad to have you along. You know we aim to educate and inspire about diabetes with a focus on people who use insulin. Most of you are very familiar with my family's story. My son was diagnosed with type one, right before he turned two he is now 16. My husband lives with type two diabetes. I do not have diabetes, and my daughter doesn't have diabetes. My daughter is 19. And she just finished her sophomore year of college. So she is home. She's been home for a couple of weeks now. And so we've moved through what I call the re entry phase. I used to call that to when they came from Camp, the re entry part of coming home. It's always an adjustment for everybody. But she's doing great.

And you know, we're just starting now to think about college for Benny. He's done with his sophomore year of high school, and even a little early yet, but you know how it goes the pressure High School is is just bananas. So we've really tried to avoid that. But he has started taking a couple of those, you know pre ACT PSAT kind of things and thinking about the process. Some of you are scolding me saying it's never too early. But I think our attitude has always been he'll figure it out as we go. And of course, though, in the back of my mind all of these years has been diabetes at college. And I'm still trying not to think about it too much, frankly, I know he's gonna do well, I know we're gonna give him all the independence that he has needs he wants, but it still makes me a little bit nervous. So that's why I really excited to know about the college diabetes network and I plan to use all of the resources I possibly can.

And to that end, we have a great roundtable for you this week, covering a lot of issues pertaining to school. This is a longer than usual interview, so I'm going to try to get right to it here. So you will hear from Haley Owens. She was diagnosed with type one at the age of nine. She's in her senior year at the University of Maryland, Baltimore County. She founded the college diabetes network chapter there in 2018. And she's been on the executive board ever since she's spending the summer at Camp Possibilities diabetes, sleepaway camp. It's her 10th year attending. She's actually the program director there now.

You'll also hear from Shay Webb. She's lived with type one for almost 15 years. She's a recent graduate from University of North Carolina Wilmington. And she's got a Bachelor of Science in clinical research. She was the founding vice president of the CDN chapter at UNC Wilmington. And you'll also hear from Anna Floreen Sabino part of the leadership of CDN she lives with diabetes herself and like me as a graduate of Syracuse University, we like to work that in whenever we can. All right, all of that is coming up.

But first Diabetes Connections is brought to you by Gvoke Hypopen and when you have diabetes and use insulin, low blood sugar can happen when you don't expect it. That's why most people carry fast acting sugar. And in the case of very low blood sugar why we carry emergency glucagon? There's a new option called Gvoke Hypopen the first auto injector to treat very low blood sugar. Gvoke Hypopen V is pre mixed and ready to go with no visible needle in usability studies. 99% of people were able to give Gvoke correctly find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon comm slash risk.

Haley and Shay and Anna, welcome to the show. I'm thrilled that you could all be here. Thanks for coming on. Thanks for having us, Stacey. Awesome. Thank you so much. Yeah, we're glad to be here. And uh, let me start with you as we look ahead Your word this very unusual for most school year is over, how is CDN doing? What are you talking about for the summer that looking ahead to the fall?

Anna Floreen Sabino 5:10

Well, I think I mean, for those of you who don't know, college diabetes network is we are 10 years old now. And we are a nonprofit organization that is really focused on providing, you know, peer support and programs and resources for young adults with C one D. And I think the key there, especially this year is around peer support and maintaining as much connectivity despite the craziness of the last 18 months and more to come, I'm sure for college students especially. So CDN is an org is really focused on you know, how do we constantly stay in the loop on what's happening and making sure that we're really listening to our students, and our parents and all of their, you know, ecosystems that surrounds them to make sure that they're safe and equipped and prepped for what's to come, whether it's transitioning home, figuring out finals, interviewing for a first job over zoom, we're right there with them. And it's so excited to be overseeing this brand new fellowship program that both Shay and Haley who are joining us here today are a part of, and one tiny little silver lining to this whole thing is that this program wouldn't exist in the capacity that it does now, if we didn't have COVID. So it's been a joy to get to know the 20 fellows who are part of this program. And and hopefully it will continue. I'm curious,

Stacey Simms 6:33

no, what do you mean, it wouldn't have happened like this would change.

Anna Floreen Sabino 6:37

So traditionally, CDN has been very, very fortunate to bring several students couple dozen to the big diabetes, you know, national conferences each summer, the ADA Scientific Sessions, you know, at CES geared towards, you know, diabetes educators, as well as the friends for life conference in Orlando. However, this year, we decided, instead of having multiple different cohorts to combine the cohort into one and offer a weekly series of leadership development workshops, and have one cohort over the course of say seven months where they get to know each other, learn a bit about some professional development and skill building be matched with a mentor. So it's just a little bit more of a robust, kind of a more flow type of a program and less stagnant. But it's been wonderful to be able to build I think, further relationships with each of them, rather than just kind of a weekend long burst of information gathering and sharing. Before we jump into all our topics. Let's just do quick introduction, a little bit. Shay, tell

Stacey Simms 7:37

me a little bit about CDN and your college experience you have graduated us here in North Carolina. Tell me about starting CDN,

Shay Webb 7:45

I saw the disparity on my campus, and I really wanted to change things. So it was around my first year of college. And I say first year because I was actually an early college student. So my first official year of college that I noticed there's nothing on campus that really talks about the advocacy for diabetes. So I reached out to the liaison for CDN, or at least for our region of CDN at the time for lessons change. And I told him that I wanted to create a chapter. And honestly, it kind of stemmed from this idea because I had another friend, and she had just created this beating club. And I'm like, wouldn't it be cool if we combined all of our clubs and our ideas, and we had like this healthy, diabetic friendly potluck or something around the holidays, and I'm like, this would be a perfect event for CDN. And at the time, I didn't really know about it, but doing my research, I'm like, this is perfect. And then my mom, in addition was like when you get to college, you know, look into this stuff. Because it's out there, people just might not know about it. I reached out and I created my chapter of CDN, which is called dubs for diabetes. Because we are at UNC W, University of North Carolina Wilmington. And at first, it was really hard to find participation because when my chapter started, Hurricane Florence hit North Carolina. And that was very detrimental for a lot of people. So we started school year off and then we didn't come back until about three months later. So some time later, another student wanted to create a chapter but he didn't know that one had already been established. So he had a registered student organization. And I had a chapter. So we all came together and put our heads together. And that's for diabetes was born.

Stacey Simms 9:33

And then Haley, tell me a little bit about your experience are you are graduating this year.

Haley Owens 9:37

So I'm a senior and I think I'll be a senior for another another year. Yeah, so college for me was just really interesting. I mean, so I've had diabetes since I was little. So I entered my college experience, also as an individual living with type 1 diabetes, and I've been fortunate enough to have had the opportunity to connect with larger populations and community to us that also have this commonality of diabetes. And I've worked within the diabetes sector through a nonprofit. I've been really fortunate enough to have community on my side. But similar to Shay, I think I saw the disparities on my campus. And I saw, interestingly enough, I think it was the first year of my college experience I was walking around, and I just was noticing all of the people who had CGM Zhan and pumps on and I was like, This is so radical, because I would usually be the only one with these technologies visible. And people would say, Hey, here's a pager, what's that? You know, what kind of cool devices that so I was like, this is really awesome. And the inspiration for me was that I loved and I still love working with the diabetes community. I love working with summer camps for children with diabetes, and a part of one today as a, as a counselor,

Shay Webb 10:51

I really wanted to bring that community aspect to the college campus as well for all of the students who were living with type one or any other form of diabetes, because that was a little bit of a nuance that I made to my chapter was that I said, I really would like to recognize all forms of diabetes, not just type one. That's interesting, what Haley was saying how, you know, she would see different people in CD ends and insulin pumps and everything on campus, because I still remember there was this girl who I was friends with for a while. And we had a mutual friend who threw a birthday party, like a birthday dinner one night, and I came and I was wearing a shirt and it didn't have sleeves or anything. So you could see my CGM really well. And she just sits down beside me. And she just starts rattling off. So it's not the freestyle, and I'm like, um, yay, it is. How do you know this? And then she just started talking to me about everything and how long she had it in her insulin pens. And I'm like, Are you serious? Like, this is not good. But this is like really dope right now. I'm super excited to see no idea. And I'm like, sitting there supersized. And they're like, What are you so happy about? And I'm like, Listen, I can't even explain it, because you won't get it. But it's super awesome.

Stacey Simms 12:05

You know, it's funny. And Anna, let me bring you in on this. One of the topics that we had put aside to talk about kind of how diabetes can be invisible, right? how a lot of people don't see it. And yet, we've already started talking about how you spotted each other. Obviously, not everybody's walking around with a sleeveless shirt, and a CGM. When we talk about not being seen, I imagine that for most young people, it's not always a question of hiding those things. It's just or maybe it is, but I'd like to hear that for both of you all, but to me, it would be more of not announcing them. Does that make sense?

Anna Floreen Sabino 12:38

Absolutely. And I think one of the things that and I've had type 1 diabetes for over 30 years now. So I think both of us eat. But I think one of the things that I've realized even as I have, I don't want to say the word aged but but gotten older, gone through college grad school started a family is that the burden of self advocacy and the invisible load that people living with a chronic illness, like type 1 diabetes is never ending. And, you know, for parents who are listening who have those in high school, Hi, I'm Stacy. But it's constantly there. I mean, just a few seconds ago, my insulin pump was was beeping, I was on mute, but you couldn't hear it. And I've got a low battery and low reservoir. And although I'm going to continue on this podcast, and you know, continue out my day, it's a reminder that I am different, and I have to pay attention to this or else and it's that it's the weight that is there, the invisible. There it is, again, the invisible worry that if I don't do this, then that and it's a reminder that you are being reminded to, you know, take care of behaviors that are both dependent on your acute and long term success. And I think for you know, young adults, especially entering college, a lot of that burden is now for the first time on the student themselves. And especially when you're constantly navigating, meeting new people, and many of the students that either start chapters are coming to college, where everyone around them just knows, you know, they've been in a very similar K through 12 school system, or they, you know, they've been the kid with with the pump at school, where it's just their best friends know, and I think I realized when I was a freshman, that it takes years to build friendship and a long time and it's not like you're gonna offload your life about diabetes and all the teeny weeny details that go with it. It is really isolating, especially now with with COVID to constantly kind of pack and unpack the invisibility of diabetes like all day, every day. So my advice for parents listening is to really start having those conversations in high school, you know, not two to three months before you're going off to school. ask them some questions talk about how you're feeling. Talk about how you're going to have those conversations. It's really, really hard. But I think it's so important to just be honest. How can I help you? What do you need for me? I'm here if you need anything, because I think it's the person living with diabetes is just there's so much weight physically and emotionally on their shoulders.

Stacey Simms 15:18

She let me go to you on that. When you're hearing her say have those conversations in high school? Is that what you would tell teenagers parents now?

Right back to Shay and Haley answering that question. But first Diabetes Connections is brought to you by Dario Health. Bottom line, you need a plan of action with diabetes. We've been lucky that Benny's endo has helped us with that and that he understands the plan has to change. As Benny gets older, you want that kind of support. So take your diabetes management to the next level with Daario health. Their published Studies demonstrate high impact results for active users like improved in range percentage within three months reduction of a one c within three months and a 58% decrease in occurrences of severe hypoglycemic events, try Dario’s diabetes success plan and make a difference in your diabetes management. Go to my dario.com forward slash diabetes dash connections for more proven results and for information about the plan.

Now back to Shay answering my questions about whether she'd recommend having conversations about advocacy with high schoolers.

Shay Webb 16:27

I would and I wouldn't at the same time. And I say that the say as Anna and Haley No, I was taught at a really young age, I had to start having those conversations when I was in elementary school, I would be that fourth grader. You know, my mom would stand behind me and I go up and tell them okay, this is my insulin pump. Okay, this is what a blood sugar kit is. And it's like I tried it felt scripted at first, like, Okay, this is what you say, this is what you show. But as you keep on growing and maturing and getting older and getting exposed more, it'll flow like clockwork, in a way. So the by the time you get to college, you get around your professors, you get around your arrays, you're not as intimidated, because you've done it for so long. And I also think the you know, the younger you started, the more comfortable you are when you start the better. And that's to say even though you're doing that, and you're advocating you're telling people what you need, you're also influencing someone else who's watching you from the sidelines. And you don't even know it half the time until later. Sometimes you don't ever know it. But like analysts saying diabetes can be really hard to unpack sometimes having someone there as that model as that guide to say, Okay, I guess this is acceptable to do especially growing up as a teenager as a preteen where you have all these peer pressures, or this doesn't look cool, like this looks cool. Be that model. You don't have to exactly be the extrovert or the person who's in front of everybody. But just find ways that you feel comfortable to express your advocacy in different ways that you can get your needs across. And if you get yours across most likely it's going to help someone down the line who hasn't even thought of those things yet.

Stacey Simms 18:09

Haley, I'm going to ask a slightly different question. As Anna alluded, my son is a sophomore in high school, he is 16. He was diagnosed he was two. So he is very independent. He is very used to talking about these things. But I do think college is different. I do plan on having these conversations with him. I do anticipate him saying, Mom, I do not need this. You know, Mom, I don't need this. I don't need you to talk to me about this. I roll I roll. So Haley, let me ask you, there's a difference between an eight year old all due respect Shay, or you know, a 10 year old saying, here's my pump, I'm cool, right? And then a 17 year old or an 18 year old going I'm so sick of this diabetes, crap, I'm going to college and nobody needs to know. Right? So you know, what do you tell students like that?

Haley Owens 18:48

Well, it's really difficult, right? Because I know people in their late 20s, who still have that attitude that they do not want to share or disclose any information about their diabetes. And there's no one right way to do self advocacy with diabetes, because I think what self advocacy largely depends on is Ally ship and what you're ultimately asking people on the receiving end of that conversation is will you be my ally? And that's a consensual question. That's a conversation that people can say yes to or they can say no to. And I know of a lot of younger children who are excited about diabetes, and I have the same attitude. I love diabetes, and I hate diabetes. Right. I love it because of the community. I love it because of the advocacy. I love it because of the resiliency. And I hate it because of all of the I think the hurt that goes along with it. Right? That's there is no you're not going to deny that to I think go back to your question though. You know, I think a lot of parents will say it was the same way from you Shay, to you know, like when I first went to school, I went back to school after getting diagnosed. My mom is a nurse right? So she said like, when you go up to your teachers, I want you to say I'm a diabetic And here's my supplies. And here's what you should look out for when I'm low or when I'm high. And that conversation was largely geared towards teachers. And I think for the most part, they saw me a nine year old child and said, you know, of course I would do that, right. And as you get older, I think sometimes the disease itself wanes on you, and it wears on you, and you don't want to be as visible about it, and you don't want to disclose that you have it. I also think that ally ship looks different when you get older, because people assume, yep, there's my pump, too.

Unknown Speaker 20:31

I was gonna yelling,

Stacey Simms 20:34

excuse me, I was going to mom, and I wasn't gonna yell it was muted.

Haley Owens 20:42

I had some coffee. And let me just say like, coffee is like a whole other conversation to have. It's like the worst. But anyway, so I like shit looks different when you get older. Because I think that people start seeing you more as an adult, and assume that you know what you're doing, and assume that you should be taking care of yourself. And they assume that this is not my responsibility. That's your responsibility, right. And I have been in situations where people do not want to know about my diabetes, I've disclosed that I've had it to them. And they say, I don't want to part of it. I've had other people in my life who have said, this is great information. Thank you for telling me and they start carrying candy in their book bag, and they start checking it with me each day. They're like, Hey, how you feeling? I'm like, I'm feeling Okay, thanks for asking, right? Because I know where that question is coming from. So I know where parents are coming from when they encourage their child to start advocating for themselves. Because I think that largely, it's coming from a source of peace of mind for them. And safety, you know, that as long as my child is disclosing this information that they're going to have people watch out for them, and people will know about it. And it's largely a safety thing, right. But I think to your children also have this gut feeling about who will come to the frontline when they are in trouble, and who will be there to be their support system, or who is around them that will judge them. And so I want to caution parents not to I think try to force self advocacy on their children, because I think that that will largely come very naturally, as your child starts to develop and get older, and starts to develop their identity with this disease. And I think ultimately, your child has a deep down gut feeling about who they want to tell that they have diabetes, because they know their support group best. They know the people around them best and they know who will support them, and who will not support them.

Shay Webb 22:34

I can completely agree with Haley because I've personally seen it where I've gone up to you know, teachers or professors trying to explain to them and the responses I've gotten were okay, you need to take that up with DRC and the Disability Resource Center. And before I can show them anything, they're like, Okay, I have to go to office hours, whereas I have friend, right, I've met in college, and they could call me and I'm like, Hi. And they're like, what's wrong with your blood sugar? And I'm like, I'm there like, no, you're not, I can hear it in your voice. And

Unknown Speaker 23:04

I'm like,

Unknown Speaker 23:05

Am I home? Why?

Shay Webb 23:08

And it's like, sometimes it's the people, you don't expect to pick up on things who actually pick up on it, rather than the authoritative figures who you're expected to report to, don't always want to pick up on it, or want to actually have responsibility for it. Because they feel like if they have responsibility for it, that's their liability, when in reality, it's your diseases, your body, we just need your ally ship, we need you to be sponsors for us in places that we can't be actually be support. Going back to your point of being invisible. I think that's where some of it comes in, as it's not exactly always invisible to us. But other people try and make it invisible as well. So they make it seem like okay, it's the invisible disability. So you're going to be like the normal student who can do everything who's going to get the assignment done on time, you don't need extra time. You're just in that category, because I don't see what's wrong with you. It's like the wilted flower category, you see a perfectly standing flower, but it hasn't had water. It hasn't been taken care of. And it's just like wilting on the inside and people don't see that Shay,

Haley Owens 24:17

Can I just add one thing too, because I think Shay, like so many nails were hit on the head and that lovely statement, because I agree with everything you just said. And I really think that when people label diabetes. Uh huh. Sorry, when people label diabetes as an invisible illness, I don't think they truly understand because I don't even label this disease as visible because it's not because anybody who has been around this disease for long enough knows that this disease lives on a spectrum of visibility. There are some days where I probably look and I probably act like everybody else, and there's days where I am absolutely exhausted, mentally, physically and mentally. blood sugars are all over the place. And I'm low. And I'm not myself. I've had many conversations about this where people almost want to categorize me and say like, it's not that bad, or diabetes is not that bad, because it is so invisible. And I have to kind of check people on that rhetoric and say, that actually is very ablest, you know, like, I have to check people and say, it's not invisible to me. But diabetes does live on this spectrum. And it's not stagnant. I don't act and I don't perform, and I don't, I don't do things the same way with diabetes each day, it's not a disease that I just take a pill or I just do one thing. And then it's good, right? It's it lives on the spectrum, that's always changing day by day, and it affects my mood, and it affects my emotions and affects my ability to perform. It's not always invisible, like what people, you know, assume it to be,

Stacey Simms 25:49

and I love you, for you back in. Because from a parenting perspective, Shay and Haley have said a couple of things. Frankly, that makes me a little bit nervous. And I'd love to know how you would help students not necessarily parents advocate for themselves, if they have professors, or they run into staff who beyond not wanting to be an ally, doesn't want to hear it. I assume that CDN, even if there isn't a chapter on whatever campus students are, there are resources or best practices. But no, what do you do if you come across somebody who just says don't want to hear it? Sit down? You're not even in my class?

Anna Floreen Sabino 26:23

Yeah. I mean, and honestly, you know, we CDN has a pretty active parent Facebook group, and a lot of people, you know, roll their eyes at Facebook, or there's just it's this constant back and forth of of conversation. But I will say that the parents of the college diabetes network, which is the name of our parent, Facebook group is awesome. It is a lot of conversation. It's a lot of support, does anyone have an endo? And I know we're supposed to be talking about students. But I will say that accommodations, and is probably one of the most asked about topics. So you're you're right there, Stacy, in terms of, you know, talking about self advocacy and ally ship around people getting backlash and potentially discriminated against on college campuses, CDN recognizes this, and we realize that, you know, not everybody to Shea's point is going to be that look at me, I have diabetes, I'm going to change the world because of my diabetes, attitude. And because of that, we want to make sure that we can, as an organization, reach, you know, all young adults and keep all young adults safe or as safe as possible while they're on campus and preparing for that campus life transition. So we have turned some of our resources into what we call a reach initiative, which is a slew of resources geared specifically towards, you know, Office of Disability and accommodations, health center and Counseling Center, we know that the majority of our students, you know, don't necessarily utilize the health or Counseling Center for their primary, you know, diabetes care, and that's fine. But we do recommend that the health center on the receiving side, you know, is up to date, and well equipped and prepared to serve the students when they're coming on campus. Because that we know that they're not necessarily required to take, you know, a diabetes class, you know, every year where I remember going to the health center being like, why is that? What is that beep Oh, is that your cell phone or your pump? I'm like, well, it's both. So it's that constant level of burden of education. And that is kind of what I'm talking about in terms of the invisibility and that that Wait, we always recommend students register for accommodations. And even if you don't end up meeting it, you know, it's like, kind of having car insurance, or health insurance. You know, it's kind of that in the back pocket or that letter when you first take your first airplane ride or your prescription on the box of that humalog vial for those just in case moments. And you want to make sure those are in place. And what I've realized, too, is that there's always going to be people in your life, whether it's a professor, whether it's a friend, whether it's a future boyfriend, or girlfriend or partner, that may say things to you that are just crappy, and maybe they're not going to be your ally. But if we reframe it and turn it around into, okay, what knowledge and resources do I have in my pocket where I could better advocate or better educate, and that's why the registering for accommodations right out of the gate is really what we encouraged for both parents and students to feel better equipped and more comfortable and building that sense of community and ally ship as soon as they get to campus. So for parents and you know, high school seniors, and even college seniors who are looking to find a job or a summer program or internship to get involved in start thinking about what those points are, you want to kind of discuss in in talking about getting accommodations or talking about your diabetes and what your needs are well in advance. On that note, Shay, you've

Stacey Simms 29:55

graduated Haley, you're going to graduate soon. I was wondering if You could take a look back over your time in college and kind of think of a time where it didn't go well, you know, where somebody didn't help you where you had to find a workaround with diabetes. And even if it didn't work out perfectly, in fact, it's better if it didn't, in my opinion, I'd love to hear about what you did.

Right back to the conversation, but first Diabetes Connections is brought to you by Dexcom. And Dexcom has a diabetes management software called Clarity. Do you use this for a long time, longer than I would like to admit, I thought it was something just our endo could use. But it's really helpful. And now I have it on my phone, you can use it on both a desktop or as an app, it's an easy way to keep track of the big picture. I find I use it when we're adjusting things which felt like it was non stop there for a while. But at age 16, Benny seems to be leveling out on growth and basil rates at least for now, clarity really helps us see the longer term trends and helps us not overreact. The overlay reports help with context of various glucose levels and patterns. And when you share the reports with your care team, it's easy for them to get a great idea of what's going on, and how they can better help. managing diabetes is not easy, but I feel like we have one of the very best CGM systems working for us Find out more at Diabetes connections.com and click on the Dexcom logo.

Now back to Shay and Haley answer my question about when something went wrong, Shay starts us back off.

Shay Webb 31:28

So I have a couple in two different categories. And one of them had to what's pertaining to my actual class, and I had been sick the whole week. And when I get sick, my blood sugar gets sick and everything else goes downhill. And we had this really big exam coming up and throughout my sickness, because I've always been someone who's really dedicated to her academics. But throughout while I was sick, I was still continuing the studies still looking at my notes and everything. But it came to the day where I'm like, I'm just wiped out, I really can't do anything. And even you know, some of my classmates and other professors were coming up to me like, okay, I can barely hear you like, This is crazy. But I had that one professor where I had to take this exam. And he's like, Well, no, I'm not changing the exam. There are other students who cheat who do this. And I'm like, Well, I have an accommodation. I was sick. This is the situation. It's not like I was just trying to get out of the test. It's not like I went to the beach all day and didn't study. And they're like, you know, that's just the way it is. So being a CDI advocate, I went to the DRC. And I told them everything that happened, and they reached out to that Professor. And luckily, I was able to take my exam and keep my grades up. But if I hadn't have had that accommodation, which originally, I didn't think I needed it that much. And it definitely took a toll. At least I felt I mean, my grades were still good, but it definitely was that feeling of assurance afterwards. But if I hadn't had that commendation, then I knew it could have been a lot worse. And then fast forwarding to when I lived on campus. And there would be some nights, it seems like everything would just go wrong, where you know, like, okay, there was one day, my Jews, there was like something wrong with this, I had to throw it away. So I'm like, Okay, I'm low. I need juice. But luckily, we have machines in the building. So I go find a machine, and it is completely empty. So I'm like, Okay, cool. So that means madmen, I have to walk to the campus convenience store, which wasn't too far. But I have rheumatoid arthritis, and I have low blood sugar. So that's two things working on me then making it extra hard to do. And I said, You know, I have to tell someone, some type of authority, that authority figure about this problem. And when I did, the response I got was, it was a slew of responses. But the biggest one that I remember is that, you know, universities just aren't disability friendly. And that's just the way it is. And you know, that's not on us. If you want to talk to the people over you know, the school system or over all the policies go talk to them. So as a younger student, and as someone who's you know, already trying to handle her diabetes in college, those kind of like a slap in the face to think that someone who is supposed to advocate for their students who supposed to care for their students would have that type of approach and that type of response. And I made that authority figure aware that especially like for other students like myself, who may come see them, it's already implementation enough to come and see someone have such a position of such power. But to get that response, when you know, you come for convocation, you come for orientation. Everyone says, Come see me if you need me. And then you need them. And it's like, well, I can't help you. And this is why And it's not even the Jets, you know, you can't help me. But for anyone who can't help us with this type of situation, it means more to say, I can't help you. But I'll find someone who can, or I'll find the resources that can rather than saying you're on your

Stacey Simms 35:14

own, Haley, anything come to mind?

Haley Owens 35:16

Yeah, I first I just wanted to Sure. I think all of us because I've had to do this too, when being let down by these big systems because it can feel like betrayal, right? What what this gets to is it feels like betrayal, when you enter a university setting, or you enter the workplace, right? Because this is not isolated to just college or university. And they say, we can't help you. We don't care, right? It feels like betrayal. I want to just address the big elephant in the room. And it's that the question is like, well, who will care about me? Right? Like, what answers Do I have now, if I go now, right. And I think that also, these conversations may also strike up a little bit of fear. And some of the parents listening like, yikes, right. And I want to say that it's true. The transition from elementary school to middle school to high school, the response and the call to action and come to the frontline, that parents and families request of teachers and the educators and the principal's the response is different, right, because those teachers, I think, have some sort of obligation to respond, professors and university not so much. And really, they professors largely are told that if a student has any issues with disabilities, or accommodations, that you just refer them to the Office of Student disabilities. So professors and educators in a higher education setting don't really get involved. And some of them want to help, but they don't know what to do, because we're not given that support. So there's a lot of work that needs to be done in higher education to support students with all disabilities period, there is a lack and there's a need. But yeah, a few things come to mind for me when I was told no, or the door was like shut in my face, and I had to go somewhere else. And one of it was when I first went to college, and I chose to live with like in a normal dorming situation, right? It was like myself and a roommate. And then we shared a bathroom with another two other girls. And I love my roommate, she was so nice and so friendly. And she still is. But the problem was, was that this young woman was nocturnal. She would sleep literally all day, and she would stay up all night and work. And it wasn't because she had night shift or anything like that. That was her schedule. And she would leave the overhead light on, she would refuse to turn it off. And that absolutely just disrupted my whole sleep schedule, I was starting to sleep during the day, I was starting to sleep in between classes, I would sleep through meals, so the dining hall would close. So then I would have to resort to eating something that was like pre packaged. Anyway, what ended up happening was that my numbers were either in the four hundreds, or they were in like the 50s all the time. And I ultimately ended up getting really sick, I just was really, really sick. I gained a lot of weight the first semester, the first half of the semester, and then I lost a bunch of weight. And it just was all over the place. So I was really sick by the time the semester came to an end. And that was the first semester of my college experience. And when I went to the the Office of Student disabilities, and I said I can't do this anymore. I need to single room accommodation. Can you give me something I was told no, because the single rooms were ADA compliant. And they had a limited number of ADA compliant rooms available. And those rooms were kept in reserve for students who were wheelchair bound, or had some sort of external devices to help them navigate across campus. And so that wasn't really for students like me, what they failed to tell me was that there were other ways of getting a single room that was not through the Office of Student disabilities, and that I would have to go through residential life to get that they didn't tell me that. So I was over here for like a month thinking, I can't get out of this situation. I'm stuck here. And there was no communication to these other resources. What ultimately became of that was we had to seek a lawyer to help us because it got to that point to where my liver enzyme level was so high that my doctor was fearful. My liver was just like being overworked. Right. And actually, later on, we found out that that was because I actually had gone into decay. At one point during that semester. We just didn't know about it. But I knew I was sick. I knew I was very sick. So we ended up getting some guidance from a lawyer and they ended up writing a letter to the student disabilities office. And that was the domino effect right there. That was the tipping point where then I was told all of the information that I needed to know to get a single room, but up until that point, the door was in my face, they would not help me. And each time I would reach out to the office. They said we can't help you like there is nowhere else we could go there was but it just wasn't through your office. So that was like the tipping point for me. fidan sounds really hard and really cruel. But I think one of the things that was really helpful for me was that like people believed me. And I believed in myself, like I knew my worth, I knew that I was worthy of this, I needed a single room because I was sick. And I would not take no for an answer, I needed it. And I had to keep going, I had to keep pushing. And what became of that was, I did ultimately get a single room through residential life and getting a single room through the residential life, I was just by chance paired with other students with disabilities on the campus. And I ultimately became friends with three amazing, wonderful young ladies who also have a disability, or multiple co occurring disabilities. And we are each other's allies in this way. And if I have an issue on campus, or I need somebody, I can call them, I really had a wonderful network come out of that situation. And the other thing that I think that is still a work in progress is something that I see all the time is the whole issue with getting a doctor's note, when you're sick. And Shay, you could probably chime in on this too, each time you're absent, or you're sick, they want a doctor's note, each time you miss a lecture, they want a doctor's note, you know how expensive it is to get a doctor's note, it's not easy, right? Because what that implies is that you actually went to the doctor. And everybody knows that, because I don't feel good because of diabetes doesn't mean that I need to go to the doctor, I need to take a day off. And that's what the health care system sets you up to do is, you know, you are individual now living with diabetes, you're going to have a stomachache, you're going to have aches and pains, you're not going to feel good some days, but you know what to do take insulin, do ketones, do all of this stuff. And if it doesn't resolve or get better, then you go to the doctor, right? But the first line of action is not to go to the doctor, it's you figure it out, when educators and professors come to me and say, Hey, you weren't gonna you know, you weren't lecture the other day, what happened? And I say, Hey, I wasn't feeling good. Where's your doctor's note? I do not have one. And I do not need to go to the doctor. And that was something that was briefly addressed with COVID was this idea that to extend grace to students when they're absent, right, when COVID first hit, and we were just going into quarantine students were getting sick. And University of Maryland released a public letter addressing faculty saying, if students are absent, just excuse them, right? Because people are getting sick. And I said, in one of my classrooms, I said, kind of aloud and addressing a whole class of so Wouldn't that be nice if we could always take that same attitude of extending grace to students with disabilities? And we didn't hound them to get a doctor's note each time they were out? Wouldn't that be restorative? Wouldn't that be moving us forward? The other thing I will say is that I think that what came out of this was a life lesson, right? One being No, you're worth two is never settle. Don't take no for an answer. I hope that that was sufficient.

Stacey Simms 42:50

Yeah, well, that's how we get to those life lessons. But Shay, you

Unknown Speaker 42:53

definitely look like somebody out there.

Shay Webb 42:55

Like Haley said, it's interesting. She had a class example. And I had an organization and kind of student or example because I wasn't really involved on campus. And some of my organs, they were based off of participation. So if you didn't show up, you could get fined. So there would be times rather than the professor, or the director addressing me, it would be other students like, Oh, well, you weren't here at such and such time. But you can go to the library or your home. Why is this, we see your car here. And it's like, I can't always be where I need to be because you have to read, like, digest everything, just recollect yourself and get your blood sugar down. Because sometimes, especially if I'd come home from work, and my blood sugar would be high, I just feel like crashing on my bed. And if anyone will tell me anything, it's not like I would be able to comprehend it. And then going to Haley's roommate example, I forgot I had a roommate example like that as well. Because, interestingly enough, but when it all started off interesting, because how the dorms were set up, or they were apartment style dorms. And one side was like a single room and a single bathroom. And the other side had two rooms and one bathroom. So I arranged with the girl who was already, um, thought would be rooming with Well, they were both friends, if it would be okay, if we switched because of my condition and how everything was set up. And she said that would be fine. Well, the day came and she got in there before I didn't already set up even though we had made an arrangement. So that was the first issue. second issue is, as you can see, as you've heard, a lot of times our alarms will go off at the most random of times, whoa, my roommate did not like that I had so many alarms and that I needed to you know, get those in check. And, you know, keep them quiet and I'm like, Well, I can't do that. So I'm not really, really sure what to tell you and pertaining to getting accommodated housing, I had the same problem as Haley. Because before I got to college, I did a lot of research. And I asked them, okay, what's the accommodation for students with diabetes with disabilities. And the response I got was, housing can be really difficult. And we've had diabetic students come in before, but you're probably not going to get any accommodation for it. And that did not make any sense to me, considering one of our first symptoms is frequent thirst and frequent urination. So if you're rooming with two three other people, or sometimes even 12 other people, how are you going to be sure that you have always guaranteed access to what you need. And I don't think that there's enough preparation on that end. So I definitely get Haley's points. And to add to it, I would say, you know, just continue to recognize because people will give you their opinions, and they will give you the policies that are in place. But as a parable that I think about sometimes is if there's a fence, and you can't get to the other side of it, you should move the fence so that it includes more people. So I feel like that should be the same thing with these academic institutions with these workplaces. We have to make it so we can include other people, even though you know, we can't change who they are, we can change the policies in place, we can change up the rules.

Haley Owens 46:28

Yeah. And some people will say, we've had diabetics do this before, and they didn't ask these questions or whatever. I'm not like all of them. I have not like that. And some people really do think that this disease looks the same for everybody. It does not. And so just because somebody says we've had diabetic students before come through this program, and they did really well, doesn't mean anything.

Stacey Simms 46:51

Let me go to you. And it just to try to, I don't know if we can wrap up these amazing thoughts, and all of these great words for the students. But I think the point of it really does change and never ends. You know, I mean, you're going to go to the workforce. We are getting older, I have friends who pointed out to me that there is a now menopause for type one women Facebook group,

Anna Floreen Sabino 47:11

right? I mean, these things never. Well, I think the the message even after just listening to all due to both Haley and Shay is that we are in a constant transition phase. And CDN is focused on a lot of the transitions and really fostering independence for the young adult. And the biggest takeaway message that I got from both of you and that I want to highlight from CDN is that lets you be on be your ally, and part of this journey. And even if you don't want to start a chapter, or you're not ready to register for accommodations, or you're a parent, and your kid just really isn't interested in caring about their diabetes, right now, CDN is here when you're ready, and that independence takes time. Every single person's diabetes is different, whether you use a pump, whether you take 100 units a day, whether you take 20 units of insulin a day. Great point, Haley on the well, this is how I manage my diabetes. And it might be different. There isn't one size fits all, you look at a doctor's note, and there's, you know, 10 different patients with 10 different insulin regimens. So I think that's something just to keep in mind, especially for parents as we constantly are looking for support and maybe self judging ourselves in terms of Oh, well, this kid is going abroad, Why can't my kid do that? Well, everybody is going to be ready to master different things related to diabetes and life as a young adult at different points. So I want to highlight by saying, join our CDN young adult journey with us get connected. And best of luck to everybody who is graduating. Congratulations. And thank you both to Shane Haley.

Stacey Simms 48:44

Yeah, thank you all for joining me. This was an amazing conversation. I hope you'll come back and check in and I really appreciate it. Thank you so much.

Unknown Speaker 48:57

You're listening to Diabetes Connections with Stacey Simms.

Stacey Simms 49:02

Lots more information as always at Diabetes connections.com. Or in the show notes. If you're listening on a podcast player, I've been hearing more and more about issues with Apple podcasts, which is the most popular podcast player and the probably the number one download source for this show. So if you are having issues and you can't see the show notes, you can't click on links, or you're having any issues. First, I'd love to know about that. And secondly, just go to Diabetes, Connections comm where every episode now has a transcript and has all the show notes and links easy to get I don't know what's going on with Apple podcasts. They made some big changes in May and it just hasn't been the same since.

Before I let you go. Just a reminder that we have our live newscast every Wednesday 4:30pm Eastern Time on Facebook in the news is something I started a couple of weeks ago and the reaction has been great. So thank you so much for that couple of minutes less than 10 minutes every week with the top diabetes news headlines. to round up, and then I'm releasing it as a podcast episode a couple of days later, we will be focusing quite a bit on so much technology news that came out of att D, the most recent conference that just wrapped up and looking ahead to other FDA approvals and research and whatever news comes my way I will pass along to you. Thank you so much as always to my editor john Kenneth from audio editing solutions. Thank you for listening. I'm Stacey Simms. I'll see you back here in just a couple of days until then, be kind to yourself.

Benny 50:35

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

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