My final post for College Diabetes Week 2017…already?!
Here’s the prompt:
What advice would you give a high school student with diabetes preparing for college?
I would tell a T1D high school student who’s bound for college that these next four years are going to be some of the most formative, exciting, and opportunity-filled years in their life. Don’t take them for granted!!! With everything that will happen in college, it’s beyond important to prioritize health. Take care of your mental and physical health as well as your diabetes. Self-care works wonders on all aspects of your health, so don’t deprive yourself of it.
Do things for you. Explore. Share with others. Seek support when you need it. You are NEVER alone and there’s no shame in asking for help from others. Remember that the people who love us want the best for us and often WANT to help us – they just don’t always know how they can do that. So tell them how they can show support for you. You and your support system will thrive as long as you’re willing to share with one another.
Before I wrap up my blogging for College Diabetes Week 2017, I want to tell all students who are involved with CDN that they are amazing. I love seeing the various activities that CDN Chapters across the country are working on throughout the school year. These students are innovators and sources of inspiration – true assets to the diabetes community. Know that your work doesn’t go unnoticed! As a CDN alum, it makes me proud to see the national CDN and its dozens of Chapters flourish.
Last night, the College Diabetes Network hosted a Facebook Live that brought together a panel of young adults with T1D, psychologists, and special guests who discussed the mental health issues associated with diabetes. The conversation lasted just over an hour and a half, with viewers chiming in throughout to get their questions answered by the panel.
The topics covered by the panel included depression, burnout, anxiety, ADHD, and disordered eating vs. eating disorders. Incredible stories, insights, and tidbits of advice were shared as the panelists opened up to viewers and honestly answered the questions that were asked.
Several responses from the panel stood out to me, and I’d like to share what was said and why it affected me…
On T1D as a psychologically and behaviorally demanding stress in your life:
The idea of perfectionism…and you have to be perfect at everything, and transitioning into having to go into college, get good grades, do well, and plan for a successful career…and having diabetes also be a factor is overwhelming and can cause people to go into a state of ignoring it. -Karly
I related to this because I’ve always tried to be a perfectionist, in all facets of my life. Karly’s take on diabetes being an unwanted, demanding, and additional stress factor resonated with me because I also view it as just another thing in life that I have to try to handle perfectly – which, of course, is impossible when it comes to a chronic condition with a mind of its own.
On the concept of lowering expectations and setting goals:
It’s less about lowering expectations and more about establishing expectations that are real…Also, the way that diabetes is taught, I personally think is absolutely incorrect. Patients and loved ones are taught that blood glucose can be controlled…and that it responds to an algebra equation…what your insulin to carb ratio and what your sensitivity factor is can land you directly into the target, but what we know is the target is a zone, not a bull’s eye. And we don’t teach it that way. -Ann
I loved how Ann phrased that part I put in bold – I grew up thinking that I had to have my blood sugars right on the money at all times. If it was higher or lower than say, 120, I was failing (this ties in with that perfectionist attitude I was just talking about). But to hear her acknowledge that this way of thinking shouldn’t be taught was validating to me.
On the fear and anxiety of losing control from low blood sugar:
During a workout…whenever I was making progress, it seemed like something just pulled me right back…because of that, I started training high, purposely. I would start training in the high 100s, to almost the 200s, which is not good at all…I had to become conscious of that…because of my fear of lows [and feeling like I’m about to die]…I intentionally made myself high. -Jiggy
Working out has always been a challenge for me, and my fear of lows during a workout is pretty intense. To hear that Jiggy responds to that in the exact same way as me made me feel not so alone.
On accepting mistakes and that you’re not perfect:
Remember that you were never meant to perform this function. Your body was meant to perform this function. You are trying to take over from something that your body was supposed to do for you…remember you’re a human being [who is] being asked to do something you weren’t supposed to do. -Will
Yes, yes, YES. Will could not have said it better. It’s important to remind yourself that it’s not easy to take over a job that your body is supposed to do for you automatically as a biological function. You just need to try to do the best that you can, and not beat yourself up when you don’t always get desirable results.
A major thank you to William Jennette, Karly Kroeten, Jiggy Yoon, Aaron Sherman, Heather Levy, Ellen O’Donnell, Ann Goebel-Fabbri, and Quinn Nystrom for volunteering their time to get together for this Facebook Live, as well as for being vulnerable for perfect strangers on the Internet. I know it’s not easy to share personal stories, but the integrity and eloquence displayed by each panelist made for a powerful live video.
The College Diabetes Network’s website contains a variety of information on how you or a loved one can cope with the mental health challenges of diabetes. Visit their page to access materials that help explain touchy topics, as well as additional resources.
Landing my first “real world” job. There’s many aspects to this accomplishment that make me proud: I’ve gained experience writing in a professional setting, I’ve been able to pay off my student loans, and I’ve thrived in this environment. But what I feel especially triumphant about is the fact that my diabetes has NEVER interfered with my job. I’m always able to turn in assignments on time and I’ve never had a bad hypo while at work. Diabetes is seldom my reason for not feeling well, and I’m fortunate to be working with a group of kind, caring, and inquisitive individuals who support me and my diabetes.
Overcoming my fear of traveling alone. Three years post-graduation, I’ve flown on more planes than I can actually count. I’ll estimate that I travel every other month, mainly for personal reasons, but the first time I did it alone was far from easy. My anxiety was through the roof and I was beyond paranoid, constantly rifling through my bags to quadruple-check that I had all my supplies and breathing shakily during take-offs. Rather than dwell on how nervous I used to be, though, I prefer to remind myself that I continue to travel in spite of all this.
Launching my own diabetes blog. This recent triumph is one that I’m especially proud of. I was incredibly hesitant for a long time to create my own blog. Many times, I had to remind myself why it was important for me to just go ahead and do it. These reasons include 1) I wanted to share a more personal side of my diabetes experience, 2) I hoped to reach a wider audience and foster more connections in the diabetes community, and 3) I desired a creative outlet through which I could share my story. Though it’s been scary at times to be so vulnerable on my blog, I’ve greatly enjoyed having one of my own and look forward to improving it in the future.
Speaking of things to look forward to, I can’t wait to see what kinds of triumphs (both diabetes-related and otherwise) I’ll be able to claim this time next year!
The more I think about it, the more I realize that my anxiety towards my diabetes manifested itself in college. I was more worried about severe lows than ever, even though I didn’t have to cope with many of them.
But one particular day, it seemed like my blood sugar simply didn’t want to stay above 80. I was terrified. I knew all the tricks in the book to fix it, but that didn’t stop me from fretting over the matter. My lows consumed my mind and I couldn’t focus on anything else. I began to think about the “what ifs” – what if my blood sugar doesn’t come back up? What if I need help? What if I’m alone? What if I pass out? What if???
I was absolutely frantic, forcing myself to eat 15 or so grams of carbs every hour just to keep level as I monitored the situation. I remember sitting in a 500+ person lecture hall for my psychology class with a T1D friend, who watched me anxiously test my blood sugar three times within 30 minutes. “You’ve got to calm down a bit,” she’d said. “Remember, it’ll take your body time to process all of the carbs.”
She was right, of course. And by the end of the day, I hadn’t experienced a blood sugar below 80 for a couple hours. It seemed like the episode was over. And I was fine.
That’s what I like to think about when I remember this certain episode. I was fine. As scared as I felt at points throughout the day, I took action to stabilize my blood sugar. I monitored the situation carefully and still performed my responsibilities as a student by attending classes. I was fine.
And I will be fine, despite my diabetes, because I’m determined to overcome the hardest parts of living with it.
The next prompt for College Diabetes Week 2017 is:
Share the impact that being involved with CDN has had on you!
This is my second time around responding to the College Diabetes Week blog prompts, but this doesn’t mean that I’m answering them in the exact same way. For instance, last year I wrote about how grateful I am for the friendships and connections I’ve made because of CDN, and how my involvement with CDN was my first true leadership opportunity.
But this year I want to talk about how CDN has influenced my perception of persistence. We all know the phrase “persistence pays off”, but it never really registered with me until I got involved with CDN. I experienced firsthand how important it is to advocate for yourself and what you believe in when I was trying to get my Chapter registered at UMass Amherst. It was a major challenge, but I persevered despite of the obstacles I faced because I wanted to accomplish my goal. And I did.
As a result, I make an effort to give 100% of myself when I get involved in new projects. I find something that I’m passionate about and don’t give in until I see it come to fruition. This blog, for example, wouldn’t have happened unless I persisted to take risks.
CDN’s impact on me has been profound, and I look forward to see how it positively affects the lives of many other T1Ds for years to come!
Today marks the beginning of the 4th Annual College Diabetes Week! This week is hosted by my friends at the College Diabetes Network as a part of National Diabetes Awareness Month. They encourage people within the diabetes community to get involved and follow along throughout the week, whether you’re still in college or not! Stay tuned with the week’s activities by following the hashtag #CDW17 across various social media platforms. They will also be posting updates on their blog, so be sure to check that out, as well!
Throughout College Diabetes Week, I’ll be posting blogs that respond to prompts provided by the CDN. We’ll start with the Monday prompt:
Post a selfie or a picture of day-to-day life living with diabetes in college!
I may not be a college student anymore, but I still live an active lifestyle with diabetes. I felt that this image summed up my daily life with T1D fairly well:
This is an image of my PDM (Personal Diabetes Manager), with the “confidence reminder” menu open. Confidence is a major component of diabetes care. You have to be confident in your abilities to carb count, inject insulin, and respond appropriately to certain situations. You have to be confident in yourself and trust that you can take the best possible care of yourself. Some days that confidence is there, but others it’s not. And both are okay. Unlike the “confidence reminder” option, diabetes isn’t something that you can choose to turn on or off. Daily life with diabetes is constantly trying, and confidence levels will vary.
This is why I chose to visually represent confidence in my snapshot of my life with diabetes.
I often tell others that I feel lucky to have received my diabetes diagnosis at a young age. Why? One major reason is that it didn’t really interrupt my life – I was so little that I barely remember it, so it wasn’t necessarily a traumatic event (at least, not for me – my parents probably strongly disagree with that).
But I’ve heard many different diagnosis stories from fellow T1Ds over the years, and not everyone was as fortunate as me. In fact, I met a few students at the last couple of CDN annual retreats who received diagnoses just as they were starting their college careers. Diabetes was still pretty new to some of them, which made me realize that growing up with diabetes is probably a bit easier than developing it during one of the most formative and chaotic periods in life: young adulthood. Add college and the “real world” into the mix and you’ve got a recipe for a mass quantity of stress.
This is why I think it’s wonderful that the College Diabetes Network recently created a specialized guide for newly diagnosed young adults: You’ve Got This: A Guide for Young Adults Diagnosed with Type 1 Diabetes. The guide offers tips and tricks on how to adapt to life with diabetes, and covers areas like relating to peers and navigating school and work.
Two students who helped bring this guide to life, Andy and Deja, were kind enough to take time out of their busy schedules to answer some questions I had about the guide.
Tell me about yourself. Where are you from and what do you do for a living? What are you studying in school?
Andy: Thank you for this opportunity to talk about CDN’s new guide and my T1D experience! My name is Andy Zeiger and I’m from Danville, California near Oakland. I recently graduated from the University of Washington (UW) with a degree in molecular biology and I’m currently part of the Asthma Collaboratory at UC San Francisco researching population genetics. I love reading history and biographies. After graduation I went on a two-month cross country drive (on my own!) to learn more about our country’s cities and big thinkers. I also enjoy taking my dog Rose on walks and talking to her about my problems.
Deja: My name is Deja Gipson; I am from Atlanta, GA. I am currently in my sophomore year, studying Electrical Engineering at the University of Alabama. I am 20 years old.
You were diagnosed with diabetes as a young adult. What was your diagnosis like and how did you react?
A: My diagnosis happened during winter break of my junior year of college because my dad observed that I went to the bathroom three times during the new Star Wars movie. Within 48 hours of hearing I had type 1 diabetes, I had picked the brain of an endocrinologist, learned how to count carbs with a diabetes educator, and discussed dietary strategies with a nutritionist. These resources primed how I viewed my diabetes in those early days: I was given the tools and resources to do this. So that’s how I reacted, I just jumped headfirst into living with diabetes. Apart from crying in a restaurant bathroom my first day with diabetes because I didn’t know if I could eat a Philly cheesesteak (I can and do), I worked hard early on to not let myself get too negative about the diabetes. In the almost two years since my diagnosis I have learned that the WAY in which I was diagnosed – by being provided with lots of positive support and great resources – is a key reason why I have achieved tight diabetes management and a positive outlook. This is the reason why I believe strongly in CDN and their guide for newly diagnosed young adults. When individuals with T1D have access to the strong social support networks of CDN, and the insightful and useful information in this guide, they will be better equipped to thrive with diabetes.
D: My diagnosis went a lot smoother than most, compared to the diagnosis stories I’ve heard from others in the diabetes community. I was diagnosed at 17, which was my senior year in high school. I was actually admitted into the hospital the week of my senior prom. If I would have stayed in the hospital any longer than I did, I would’ve missed it! So as a senior in high school, that was a big deal for me. Fortunately, I was able to attend, my dress just fit a little bigger than it did when I first tried it on due to the weight I had lost.
When and how did you become involved with the College Diabetes Network?
A: I returned to school after winter break newly minted with T1D and ready to take on a heavy course-load as well as my research position on campus. For the subsequent few months, I put my head down and worked hard, figuring that successfully incorporating T1D into my life meant shouldering the burden on my own. I would soon find that the best way to successfully integrate T1D into my life was actually to allow people to help me and, in letting them help me, I could find ways to in return, help them. I began volunteering with the Pacific Northwest Chapter of JDRF where I was lucky to meet Kassidey Short, a UW student who had been living with T1D almost her entire life. We founded a CDN Chapter on our campus and began working with the Seattle University CDN chapter to build a support system for T1D students in Seattle. We anchored our CDN Chapter to the local JDRF infrastructure and built connections with various organizations at UW including the disability services office, residential life and local clinics. We utilized CDN’s many resources to put on two educational panel events for high school seniors and college freshmen. During my senior year we were recognized for our work in building a support system for T1D students when I was awarded a Mary Gates scholarship and our group was featured in the UW student newspaper. CDN sent out applications to attend a workshop in Boston to create this guide, and I could not pass up the opportunity to learn about the diabetes experiences of my peers and become a better advocate for T1D in the broader community.
D: I became involved with CDN once I got to college. I was informed by my endocrinologist that my school most likely had a Chapter and that I would feel comfortable knowing and interacting with other students my age with Type 1. He was very correct! I have made bonds through CDN that will last a lifetime!
CDN is launching a guide for newly diagnosed young adults on November 13th. What kind of information does this guide contain?
D: The guide that we’ve created for newly diagnosed young adults contains the “real” things you need to know about having diabetes at this age. The information in the guide was collected from a group of young adults, so I believe that the contents are truly authentic and will help anyone become more aware of the things you really need to know about “dia-beet-us”!
How did you contribute to the guide?
A: In the spring of 2017, CDN hosted newly diagnosed adults from CDN Chapters across the nation at a workshop in Boston. We received a packet of information to review which would serve as the framework for this guide and were asked to come prepared with comments about the guide and reflections on our experiences with T1D. As with every member of the workshop, I deconstructed my own diagnosis experience for the most valuable insights and shared them with the group. We had sessions moderated by the founder and CEO of CDN, Christina Roth, and we had guest researchers prime us with questions based on their own experiences with diabetes from a clinical and biomedical research perspective. Personally, I sought to contribute to the guide by relaying positive reflections on a living with type one. My experience with diabetes has forced me to become more efficient and deliberate with my daily activities. It has taught me incredible insights about my body and I have seen massive benefits in taking care of my mental and physical heath every day. While T1D is a chronic illness with its unique challenges, individuals with T1D can relate to the daily struggles and adversities felt by anybody living with a chronic illness. Empathy and compassion are born out of a concerted effort to appreciate the struggles and pressures befalling our neighbors, and T1D has created a platform for me to do that. Furthermore, Insulin was first used in human clinical trials in 1922! If I had been diagnosed with T1D as a 20-year old prior to 1922, the standard of care would have been a miserable starvation regiment and I would have lived for approximately two to four years. We are living at a time when the gap in life expectancy between people living with type 1 and the general population is closing and we can live a relatively normal life with the disease. That is the miracle of science that I wished to convey!
Is there a part of the guide that you think is particularly helpful to newly diagnosed young adults? Which part, and why?
A: The first section of the mental health chapter of the guide discusses positive approaches to “diabetes control”. I wish I had been able to read this chapter the day I was diagnosed. My care team and family prepared me with great resources and support, but all too often I felt like I was riding in the passenger seat, living at the whim of my disease. This part of the guide reminds us that our diabetes is our own, we will make adjustments throughout our life and will never perfectly have it under control, but that’s okay. It’s better to strive for the tightest control possible than to feel guilty or defeated in pursuit of unattainable perfection.
D: I believe that the Family portion of the guide is the most important. Your family are the ones who care about you the most, and sometimes their “caring” can come off as rude, which can get to be annoying and overbearing. I believe that it is important to let them know how they can help you so that way they can still feel a part of your life and can help you the correct way.
What advice would you give to a young adult newly diagnosed with diabetes?
A: Every day I check my blood around five or six times and give myself five shots of insulin. Nobody does this for me, which means I am completely reliant on myself to count carbs and dose my insulin and make sure that I have tight control of my diabetes. However, it is nearsighted to think that I alone affect my health; in fact, we are all stakeholders of each other’s health. As Benjamin Franklin related in his Appeal for the Hospital, “We are in this world mutual Hosts to each other… the Good, particular Men may do separately, in relieving the Sick, is small, compared with what they may do collectively.” Essentially, if you were just diagnosed with diabetes, you should know that you gain strength from the help of others. You may not yet know anybody who has diabetes and you may think that people without it can’t understand what you are going through, but carrying the burden of the struggle by yourself is painstakingly difficult. I know because I have tried. Type 1 diabetes is a silent struggle but depression, chronic pain and obesity are silent struggles too. These struggles may not involve blood gymnastics, but more people than you can imagine do understand what it is like to grapple with their health every day, and they want to help. My advice would be that you are promoting your health and the health of those around you when you acknowledge the gravity of your community’s struggles and actively seek ways to help. Being supportive to others is a great way to turn your diabetes into a positive.
D: Know that you’re not alone in this! You can live a prosperous life and show diabetes that you’re the boss!!!
Thank you for answering my questions, Andy and Deja! “You’ve Got This: A Guide for Young Adults Diagnosed with Type 1 Diabetes” is available digitally on the CDN website on November 13th, along with videos featuring CDN students talking about their experiences and what they have learned. Here’s a sneak peek!
To celebrate, I’ll be posting a variety of content that’ll give non-T1Ds a bit more insight into life with diabetes. I’m going to *attempt* to respond to the many wonderful prompts provided by Beyond Type 1 and the College Diabetes Network, starting today!
Beyond Type 1’s first prompt is easy enough: Post a photo of your #bgnow! (This is a hashtag commonly used on Twitter to share current blood sugar readings.)
So here it is:
Hey, not bad! Especially for a post-breakfast blood sugar! I’m hoping for some tighter numbers this month, seeing as I just saw my endocrinologist a few days ago. I had a good A1c reading, but not my best, so I was a little disappointed. But she reminded me that my A1c is just an average, and that I should be proud of the progress I’ve made in the last few years. Her faith in my ability to take the best care of my diabetes that I can is super reassuring. That, combined with my excitement to advocate all month long, is exactly what I need to meet my personal goals.
Looking forward to an awesome month of diabetes advocacy!